Delaware Journal of Public Health - Dementia in Delaware: Perspectives and Progress

Delaware Journal of

Volume 7 | Issue 4

September 2021

Public Health A publication of the Delaware Academy of Medicine / Delaware Public Health Association

Dementia in Delaware:

Perspectives and Progress

Special Section on page 38

www.delamed.org | www.djph.org

Delaware Academy of Medicine

Board of Directors: OFFICERS S. John Swanson, M.D. President Lynn Jones, FACHE President-Elect Professor Rita Landgraf Vice President Jeffrey M. Cole, D.D.S., M.B.A. Treasurer Stephen C. Eppes, M.D. Secretary Omar A. Khan, M.D., M.H.S. Immediate Past President Timothy E. Gibbs, M.P.H. Executive Director, Ex-officio DIRECTORS David M. Bercaw, M.D. Lee P. Dresser, M.D. Eric T. Johnson, M.D. Erin M. Kavanaugh, M.D. Joseph Kelly, D.D.S. Joseph F. Kestner, Jr., M.D. Brian W. Little, M.D., Ph.D. Arun V. Malhotra, M.D. Daniel J. Meara, M.D., D.M.D. Ann Painter, M.S.N., R.N. John P. Piper, M.D. Charmaine Wright, M.D., M.S.H.P. EMERITUS Robert B. Flinn, M.D. Barry S. Kayne, D.D.S.

Delaware Public Health Association

Advisory Council:

Omar Khan, M.D., M.H.S. Chair Timothy E. Gibbs, M.P.H. Executive Director Louis E. Bartoshesky, M.D., M.P.H. Gerard Gallucci, M.D., M.H.S. Richard E. Killingsworth, M.P.H. Erin K. Knight, Ph.D., M.P.H. Melissa K. Melby, Ph.D. Mia A. Papas, Ph.D. Karyl T. Rattay, M.D., M.S. William J. Swiatek, M.A., A.I.C.P.

Delaware Journal of Public Health Timothy E. Gibbs, M.P.H. Publisher Omar Khan, M.D., M.H.S. Editor-in-Chief James M. Ellison, M.D., M.P.H. Guest Editor Liz Healy, M.P.H. Managing Editor Kate Smith, M.D., M.P.H. Copy Editor Suzanne Fields Image Director ISSN 2639-6378

Delaware Journal of

September 2021

Public Health Volume 7 | Issue 4

A publication of the Delaware Academy of Medicine / Delaware Public Health Association

3 | In This Issue

Omar A. Khan, M.D., M.H.S. Timothy E. Gibbs, M.P.H.

4 | Guest Editor

James M. Ellison, M.D., M.P.H.

6 | The State of Dementia in Delaware: History and Efforts to Ensure Availability of Necessary Supports and Services

Julie P. Devlin, Esq. Sydney Garlick, M.P.H., M.S.W.

16 | Advocacy for Alzheimer’s Aimee Isaac, M.S

20 | On the Frontlines of the Alzheimer’s Crisis: Advocacy Organizations in Delaware and Nationwide Urge Public Health Intervention to Curb Staggering Disease Trends

74 | Diagnosis and Treatment of Alzheimer’s Disease: An Update Emily Bomasang-Layno, M.D., M.Sc. Rachel Bronsther, M.D.

86 | My Loved One Has Dementia; Is In-Home Care An Option?

Anne Eidschun, C.S.A. Jamie Ramage

90 | Dementia Care in Delaware: The Role of Long-Term Care Resources Cheryl Heiks

92 | Palliative Care of the Patient with Dementia Raja Malhi, M.D. Jennifer McElveen, D.N.P. Linsey O’Donnell, D.O.

72 | Interview with Lieutenant Governor Bethany Hall-Long James Ellison, M.D., M.P.H.

COVER

148 | Scams and Exploitation: A Growing Hazard for Delaware’s Older Population Craig Weldon Jack Berlin, D.O.

150 | Interview with Dr. Patricia Curtin

Sarah Wells

Fogarty International Center

38 | Speak for Health: An Initiative of the American Public Health Association

Jennifer Smith, J.D., LL.M Jeremy Riley, J.D., LL.M

104 | Global Health Matters May-June

24 | Expanding Alzheimer’s Research at the University of Delaware and Beyond: Proposed Delaware Center for Cognitive Aging Research (DECCAR)

Anne E. Adams, Ph.D. Jennifer Rittereiser, M.P.H. Alisha Garcia, M.S., L.P.C., N.C.C. Melany Sattler, M.S.W. James M. Ellison, M.D., M.P.H.

144 | Estate Planning to Protect Yourself and Your Assets in the Event of Incapacity as a Result of Dementia

James Ellison, M.D., M.P.H.

Katie Macklin, M.P.A.

32 | An Innovative NonPharmacologic Treatment for Delusional Misidentification in Persons with Major Neurocognitive Disorder

Fogarty International Center

100 | Interview with Maggie Goonan James Ellison, MD, MPH

Christopher R. Martens, Ph.D. Matthew L. Cohen, Ph.D. Alyssa M. Lanzi, Ph.D. Curtis L. Johnson, Ph.D.

132 | Global Health Matters July-August

116 | Now is the Time for Delaware Families to Catch Up on Missed Immunizations Kate Smith, M.D., M.P.H.

118 | Prevention of and Early Intervention for Cognitive Decline Due to Alzheimer’s Disease and Related Disorders Matthew L. Cohen, Ph.D. Alexis C. Ryan, M.A. Alyssa M. Lanzi, Ph.D., CCC-SLP3

124 | Lifelong Learning: A Key Weapon in Delaware’s Fight Against Cognitive Decline Ruth Flexman, Ph.D.

128 | Down Syndrome and Dementia: A Patient and CareGiver Centered Approach

152 | Helping Mothers Have Healthy Babies 160 | Post-Traumatic Bio-Behavioral Rehabilitation of Adult Female Victims Kathleen Brewer-Smyth, Ph.D., R.N., C.R.R.N., F.A.A.N. Harold G. Koenig, M.D. Katherine Kafonek, Ph.D., M.S. Tyler Adams, B.A. Adrian Raine, D. Phil Douglas A. Granger, Ph.D.

168 | COVID-19 Vaccine Hesitancy in Delaware’s Underserved Communities Sharron Xuanren Wang, Ph.D. Nicole Bell-Rogers, Ed.D., F.N.P.-c, R.N. Dorothy Dillard, Ph.D. Melissa A. Harrington, Ph.D.

176 | Dementia Lexicon & Resources 180 | Index of Advertisers

Mary M. Stephens, M.D., M.P.H., F.A.A.F.P., F.A.A.D.M. Eileen Herge Charmaine Wright, M.D., M.S.H.P.

Dementia, also known as Major Neurocognitive Disorder, is an acquired impairment of cognitive, emotional, and behavioral function that affects an estimated 50 million people worldwide. The most common dementia is Alzheimer’s Disease. Family caregivers, health care providers, and public services are working to improve the lives of the 19,000 people with dementia who live in Delaware.

The Delaware Journal of Public Health (DJPH), first published in 2015, is the official journal of the Delaware Academy of Medicine / Delaware Public Health Association (Academy/DPHA).

only the opinions of the authors and do not necessarily reflect the official policy of the Delaware Public Health Association or the institution with which the author(s) is (are) affiliated, unless so specified.

Submissions: Contributions of original unpublished research, social science analysis, scholarly essays, critical commentaries, departments, and letters to the editor are welcome. Questions? Write ehealy@delamed.org or call Liz Healy at 302-733-3989.

Any report, article, or paper prepared by employees of the U.S. government as part of their official duties is, under Copyright Act, a “work of United States Government” for which copyright protection under Title 17 of the U.S. Code is not available. However, the journal format is copyrighted and pages June not be photocopied, except in limited quantities, or posted online, without permission of the Academy/ DPHA. Copying done for other than personal or internal reference use-such as copying for general distribution, for advertising or promotional purposes, for creating new collective works, or for resale- without the expressed permission of the Academy/DPHA is prohibited. Requests for special permission should be sent to ehealy@delamed.org.

Advertising: Please write to ehealy@delamed.org or call 302-733-3989 for other advertising opportunities. Ask about special exhibit packages and sponsorships. Acceptance of advertising by the Journal does not imply endorsement of products.

Copyright © 2021 by the Delaware Academy of Medicine / Delaware Public Health Association.

Opinions expressed by authors of articles summarized, quoted, or published in full in this journal represent

I N T H I S I S SU E To those who have not directly experienced care of someone living with dementia (including but not limited to Alzheimer’s), it is easy to assume that they are one and the same disease. As you read this issue, you will learn that they are not the same; that Alzheimer’s is a form of dementia, and that dementias can significantly impact the individual, their family, their community, and the capacity of society to rise to the challenge of supporting them.

Two quotes well sum up the complexities of Alzheimer’s and dementia: “Alzheimer’s is the cleverest thief, because she not only steals from you, but she steals the very thing you need to remember what’s been stolen.” – Jarod Kintz “A lack of social stimulation is harmful for people living with dementia. It exaggerates the impact of the condition, can lead to depression, and it encourages the person to withdraw into themselves.” – Bob DeMarco One stark data point sums up the staggering scope and burden of Alzheimer’s and dementia in general:

1 IN 3 SENIORS DIES WITH ALZHEIMER’S OR ANOTHER DEMENTIA1 We welcome James M. Ellison, M.D., M.P.H., as guest editor of this issue. Dr. Ellison is the Swank Foundation Endowed Chair in Memory Care and Geriatrics at ChristianaCare, is a Professor of Psychiatry and Human Behavior at Sidney Kimmel Medical College, Thomas Jefferson University, and is himself Editor in Chief of the Journal of Geriatric Psychiatry and Neurology.

*** Turning our attention now to a positive and exciting note: After five years of publishing excellence, and dedication from staff, we are pleased to announce our acceptance and inclusion into the National Library of Medicine | National Institutes of Health PubMed® Central. PubMed® comprises more than 32 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full text content from PubMed Central and publisher web sites – and our complete archives will be available there shortly, perhaps by the time you are reading this issue.

We extend our deepest thanks to ChristianaCare and Nemours for their investment that brought us to this point. And, of course, we thank all the past guest editors, authors, peer reviewers, graphics design team members, and many others for their own contributions to the cause.

REFERENCES: 1. Alzheimer’s Association. (2021). Alzheimer’s disease facts and figures. Retrieved from: https://www.alz.org/alzheimers-dementia/facts-figures

Omar A. Khan, M.D., M.H.S. Editor-in-Chief

doi: 10.32481/djph.2021.09.001

Timothy E. Gibbs, M.P.H. Executive Director 3

James M. Ellison, M.D., M.P.H. Geriatric Psychiatrist; Swank Foundation Endowed Chair, Memory Care and Geriatrics; Editor in Chief, Journal of Geriatric Psychiatry and Neurology

Delaware may be a small state, but it is home to some 19,000 people with Alzheimer’s dementia and their caregivers.

Mirroring global trends, Delaware anticipates an increase in the population of older adults in general – and in those with neurocognitive disorders in particular – during the foreseeable future. As the “First State” and as an attractive retirement destination, Delaware proactively attends to the health of its aging population. The articles collected in this special issue of the Delaware Journal of Public Health illustrate the State’s commitment to identifying, treating, protecting and understanding individuals with dementia while supporting those who care for them.

The contributions to this issue are grouped into three sections.

In the first, readers will learn about Delaware’s public health initiatives to improve the lives of citizens affected by dementia, both those who are diagnosed and those who care for them.

The State Plan to Address Alzheimer’s Disease and Related Disorders is described, along with the subsequent services associated with Dementia Friendly Delaware and the Behavioral Health Consortium. The authors, Ms. Devlin and Ms. Garlick, participated in these developments and provide a thoroughly informed view of their planning and implementation. Next, Ms. Isaac discusses the value and impact of grass-roots advocacy efforts, illustrated with her family’s own story and several additional poignant vignettes. She emphasizes the need for greater availability of skilled clinicians, increased dementia-care training for all our clinicians, improved access to long term care and public support of dementia care initiatives. Ms. Macklin, associated with the very active Delaware Valley Chapter of the Alzheimer’s Association, describes the role that the Alzheimer’s Association and other advocacy organizations continue to play in educating the public and promoting federal legislative aid to the affected population. Dr. Martens and his colleagues then describe exciting advances in the understanding of dementia achieved by scientists at the University of Delaware, where a bold plan has recently been proposed for the establishment of a new “Delaware Center for Cognitive Aging Research.” Dr. Adams and colleagues describe an innovative non-pharmacologic approach to enhancing cognitive function in patient-caregiver dyads whose safety and trust have been compromised by a common complication of dementia, impaired caregiver recognition. This section closes with an interview with Lieutenant Governor Bethany Hall-Long, who shares her thoughts about Delaware’s commitment to caring for people who are cognitively impaired.

In the second section of this issue, experts representing various levels of dementia care describe important treatment elements and settings. A detailed and informative overview

4 Delaware Journal of Public Health - September 2021

of current and upcoming diagnostic tests and pharmacologic treatments is offered by Drs. Bomasang-Layno and Bronsther.

Ms. Eidschun and Ms. Ramage describe the world of home care and the complex decisions families face when choosing between home health care and residential care in long-term facilities, and their contribution is followed by a description of long-term care options in Delaware by Ms. Heiks. Patients, families, and clinicians who wish to understand the role that palliative care and hospice play in dementia care will find the article by Drs. Malhi, McElveen, and O’Donnell of great interest. This section ends with a devoted daughter’s account of her mother’s care during her journey through successive levels of care from outpatient to inpatient and residential settings.

Ms. Goonan’s moving story offers important guidance to both families and clinicians.

Finally, the third section of this issue is devoted to a collection of resources for both clinician and non-clinician readers who wish to understand more about the prevention and treatment of dementia. Dr. Cohen and his colleagues provide a practical and comprehensive overview of evidence-based lifestyle choices and compensatory rehabilitative interventions to delay, prevent, or limit the symptoms of cognitive decline. Dr. Flexman offers additional detail about cognitive stimulation and describes resources available in Delaware for life-long learning. Dr. Stephens and her colleagues describe the special challenges faced by younger adults with dementia and their caregiving families.

An instructive discussion of proactive and protective legal instruments is provided by Ms. Smith and Mr. Riley. The next article in this section is a lively discussion of the scams which face older adults, even those without cognitive impairment, and precautions to increase their safety, co-authored by Mr. Weldon, Delaware’s Chief Special Investigator / Investment Protection.

The section concludes with an interview with Dr. Patricia Curtin discussing the contribution to health care made by one of our state’s precious specialist groups, the geriatricians.

Surveying the scope of this collection, one recognizes the devastating toll imposed on our population by neurocognitive disorders. Perhaps we will someday have medications to halt or reverse the diseases which impair cognition, but such a solution is most likely far in the future. For now, the success of our fight against dementia will require public advocacy, skilled clinical care, and legislative support to achieve widespread education, preventive improvements in lifestyle, early detection, state of the art treatment and optimal care in homes and facilities. The contributors to this special issue have provided many inspiring suggestions in each of these areas and I thank them for their dedication and creativity.

doi: 10.32481/djph.2021.09.002

HIGHLIGHTS FROM

The

NATION’S HEALTH A P U B L I C AT I O N O F T H E A M E R I C A N P U B L I C H E A LT H A S S O C I AT I O N

Late Summer 2021 Highlights from the Nation’s Health Online-only news from The Nation’s Health newspaper Nation in Brief - Kim Krisberg Affordable Care Act steadfast in face of latest high court challenge - Michele Late New state, local laws threaten vital public health authority: Backlash from COVID-19 protections - Mark Barna Kentucky county saving lives through harm reduction service - Mark Barna States in Brief - Kim Krisberg WHO: Women hold only a quarter of global health leadership positions - Aaron Warnick Globe in Brief - Kim Krisberg COVID-19 vaccination mandates increasing for health workers: Protecting patients, staff from disease - Kim Krisberg Interest in public health degrees jumps in wake of pandemic: Applications rise - Aaron Warnick What your hair is telling you about your health - Aaron Warnick Health Findings - Kim Krisberg McGhee to keynote APHA 2021’s opening session: Register by Aug. 19 to save on Denver, online Annual Meeting Michele Late Chanyasulkit, Manderscheid face off for APHA president position - Michele Late New edition of APHA volume a field guide to disaster readiness: 20th anniversary of vital resource - Mark Barna APHA in Brief - Michele Late APHA Advocates - Mark Barna

Ending gun violence epidemic requires public health strategies - José Ramón Fernández-Peña New York public health students honor COVID-19 vaccination leaders - Aaron Warnick Students in Brief - Aaron Warnick

CHECK OUT MORE PUBLIC HEALTH NEWS IN THIS MONTH’S FULL ISSUE. 5

The State of Dementia in Delaware: History and Efforts to Ensure Availability of Necessary Supports and Services Julie P. Devlin, Esq. Senior Planner and Legal Services Developer, Division of Services for Aging and Adults with Physical Disabilities, Department of Health and Social Services, State of Delaware Sydney Garlick, M.P.H., M.S.W. Former Behavioral Health Coordinator, Office of the Lieutenant Governor, State of Delaware

INTRODUCTION The impact of Alzheimer’s disease and related dementias (ADRD) is far-reaching. It is estimated that over six million Americans currently have Alzheimer’s disease. The annual number of Alzheimer’s cases and other dementias is projected to triple by 2050. While many cases of early-onset Alzheimer’s disease exist in those under the age of age 65 - there are approximately 200,000 cases of persons under age 65 with the disease today the majority of persons with the disease are aged 65 and over. By 2050, the number of people age 65 and older with Alzheimer’s disease is projected to reach 12.7 million. One in three seniors dies with Alzheimer’s or another dementia. In 2019, over 121,000 Americans died of Alzheimer’s disease, making it the country’s sixth leading cause of death and the fifth-leading cause of death for those age 65 and older.1 In Delaware, the prevalence of the disease is equally daunting. It is estimated that there are currently 19,000 Delawareans aged 65 and older living with Alzheimer’s disease. This figure represents 11% of the State’s senior population. As would be expected, the number of people with Alzheimer’s disease in Delaware has grown since the State, like the rest of the country, is in the midst of an unprecedented growth in the older population. Between 2020 and 2025, the number of persons aged 65 and over with Alzheimer’s disease in Delaware is expected to grow by over 21% (to 23,000 people).1 The economic impact of ADRD has been well documented.

Family members and friends provided nearly $257 billion in unpaid care to people living with Alzheimer’s and other dementias in 2020.2 In addition, numerous studies point to the significant impact on the lives of individuals who serve as informal caregivers. The American Psychological Association in summarizing these findings states that, “While caregiving can be rewarding and positive, many family caregivers experience significant physical, psychological, and financial stressors in association with their caregiving role.”2 To respond to these needs, Delaware has made significant strides in developing the dementia-capability of its long-term services and supports (LTSS) system. Delaware’s small size has been an advantage in the development of a dementia-capable system in that organizations work together to share resources, cultivate a trained workforce, and promote advancements in the responsiveness of the LTSS system.

6 Delaware Journal of Public Health - September 2021

FEDERAL RESPONSE DEMENTIA AND STATE MANDATED PLANS The Administration for Community Living (ACL), an agency of the U.S. Department of Health and Human Services, has spent significant resources to enhance the federal response to dementia.

Under the agency’s leadership, the National Alzheimer’s and Dementia Resource Center (NADRC) was formed. The goals of the NADRC include, but are not limited to, the provision of expert technical assistance to ACL and its grantees, as well as making program information and resources available to individuals and organizations outside the Alzheimer’s grantee community. ACL also provides grants that collectively seek to achieve the following objectives: • Create state-wide, person-centered, dementia-capable home and community-based service systems; • Translate and implement evidence-based supportive services for persons living with ADRD and their caregivers at the community level; • Work with public and private entities to identify and address the special needs of persons living with ADRD and their caregivers; and • Offer direct services and supports to persons living with ADRD and their caregivers.

Another way the federal government has ensured that states respond to the ever-growing needs of people living with ADRD and their caregivers is through the state planning process, as mandated in the Older Americans Act (OAA). Congress passed the OAA in 1965 in response to concern by policymakers about a lack of community social services for older persons. The original legislation established authority for grants to states for community planning and social services, research and development projects, and personnel training in the field of aging.3 Although older individuals may receive services under many other federal programs, today the OAA is considered to be a major vehicle for a wide array of service programs through a national network of 56 state units on aging, 618 area agencies on aging, nearly 20,000 service providers, 281 Tribal organizations, and one Native Hawaiian organization representing 400 Tribes.

The OAA requires State Units on Aging to develop a State Plan on Aging every two to four years. The State Plan on Aging functions as State Units on Aging’s contract with ACL. It allows the State to receive funding under Titles III and VII of the OAA. Titles III and VII provide for funding for important services for older adults, known as “core” programs, such as personal care, respite, legal doi: 10.32481/djph.2021.09.003

services, case management and congregate and home-delivered meals. Each year, ACL also requires specific areas to be addressed in the state plan, including services for people living with ADRD and their caregivers.

DELAWARE’S STATE PLAN ON AGING As a single Planning and Service Area (PSA), the Division of Services for Aging and Adults with Physical Disabilities (DSAAPD), one of eleven divisions of the Delaware Department of Health and Social Services, serves as Delaware’s State Unit on Aging (SUA). The agency delivers and contracts for services for older persons at the state and local level. Additionally, DSAAPD is responsible for coordinating services for adults with physical disabilities in Delaware. To carry out these activities, DSAAPD maintains strong partnerships with organizations within the aging and disabilities networks. DSAAPD utilizes its State Plan on Aging to address the growing and changing needs of older Delawareans and persons with disabilities, including those with ADRD. Through the state plan, DSAAPD provides funding for a variety of programs and services for older Delawareans and their caregivers including supportive services, nutrition programs, disease prevention and health promotion initiatives, elder rights protection activities, and caregiver support programs. Delaware’s current plan is effective from October 2020 through September 20244 and focuses on the following goals: • Promoting excellence in the delivery of core Older Americans Act Programs; • Empowering older adults, persons with disabilities and their caregivers to be active, engaged, and supported in their homes and/or communities of choice; • Increasing the development and implementation of business-related strategies that promote innovation, collaboration, and sustainability of aging and disability network partners; • Expanding and leveraging alignments with strategic partners to support integration of discretionary grant programs into Older Americans Act core programs; • Promoting person-centered planning and participant direction in community-based and long-term care service options; • Promoting access to and efficiencies of home and community-based services which enable participants to direct their own care; • Preventing abuse, neglect and exploitation while protecting the rights of older Delawareans and persons with disabilities; and • Supporting and enhancing multi-disciplinary responses to elder abuse, neglect, and exploitation.5 Specific to dementia, DSAAPD is leading the effort to become a dementia-friendly state, ensuring that communities throughout Delaware are equipped to support persons living with dementia and their caregivers. This will foster the ability of persons living with dementia to not only age in place but thrive in their communities.6

DELAWARE STATE PLAN TO ADDRESS ALZHEIMER’S DISEASE AND RELATED DISORDERS Delaware was one of the first states to implement an Alzheimer’s State Plan to address the needs of the growing population.

DSAAPD, in conjunction with the Alzheimer’s Association Delaware Valley chapter, released the Delaware State Plan to Address Alzheimer’s Disease and Related Disorders in 2014.7 This plan was developed out of recognition of the enormous social, emotional, and economic impact of Alzheimer’s disease and the need to find creative approaches to support the many people impacted in Delaware. The Delaware State Plan to Address Alzheimer’s Disease and Related Disorders8 laid the groundwork for collaborative efforts to improve the State’s response to persons with ADRD and their families.

The Alzheimer’s Plan highlights the fact that there are gaps within Delaware’s current dementia capable LTSS system. Some of the specific gaps identified include the need for more legal services for persons with ADRD and their caregivers; the need for supportive services/technologies for persons with ADRD who live alone; the need for training and consultation for ADRD caregivers; the need for more services to allow ADRD caregivers to take a break from their caregiving responsibilities; and the need for services that can support ADRD caregivers when emergencies arise.

The plan identified five goals, each with accompanying objectives and strategies. Broadly speaking, the plan outlines actions to increase awareness of and understanding about Alzheimer’s disease; bring focused attention to the development of long-term care services for persons with Alzheimer’s disease; strengthen support for caregivers; improve the capacity of Delaware’s workforce to respond to the needs of persons with Alzheimer’s disease; and increase Delaware’s capacity for Alzheimer’s disease related research and data collection.

Through a steering committee to implement the Alzheimer’s Plan, five workgroups, corresponding with the five goals of the Plan, were developed. This State Plan was ultimately incorporated into the State Plan on Aging to ensure that the goals could be accomplished and sustained once the Alzheimer’s Plan, and the working groups associated with it, folded. This truly collaborative effort has included partners from around the state including the American Association of Retired Persons (AARP), Alzheimer’s Association, ChristianaCare, Delaware State University, DSAAPD, home health agencies, the University of Delaware, community advocates, and many more.

DELAWARE’S ACTIONS TO ADDRESS ADRD Through the work of the Delaware State Plan to Address Alzheimer’s Disease and Related Disorders, partners from across the state have come together to enhance supports and services for people living with dementia and their caregivers. The Plan led to not only creative and innovative new programs, but a federal grant awarded to the State for its efforts.

7

SUSTAINED EFFORTS FROM THE DELAWARE STATE PLAN TO ADDRESS ALZHEIMER’S DISEASE AND RELATED DISORDERS Much was achieved with the Alzheimer’s Plan, with many of the activities continuing beyond its culmination. The first goals sought to promote public awareness of Alzheimer’s disease.

Much of the work centered on soliciting nontraditional partners, like the faith-based community, to let people know about the warning signs of ADRD. Evidence based messaging was disseminated throughout the state, including the Alzheimer’s Association Facts and Figures Report. A brochure was developed on what steps to take once someone has been diagnosed with ADRD. This brochure was made available at pharmacies and doctor’s offices statewide. An Alzheimer’s Toolkit, housed on the DSAAPD website,9 to promote resources and services was also developed. The brochure and toolkit also helped meet the goal of strengthening supports for caregivers of those living with ADRC. Another goal pursued the improvement of the delivery of services to persons with Alzheimer’s disease. Part of these efforts encompassed inclusion of Alzheimer’s disease as a focus area in the Health Promotion and Disease Prevention Section of the Division of Public Health (DPH). Since brain health is an important issue on the national level,10 it is also something DPH is now focused on.

Through the Alzheimer’s Plan, Delaware worked to achieve an Alzheimer’s-competent workforce. Partners completed an inventory of dementia trainings given to staff, as well as to clients, at all senior centers in Delaware. An informal environmental scan of dementia trainings provided to healthcare providers throughout the state was conducted, as well a compilation a of required dementia lessons available for CNAs in Delaware. This cataloguing was to see what training was currently available and where Delaware’s professionals need more training. Because of this, three dementia competency trainings, one a train-the-trainer, were held. The trainings were a collaboration between DSAAPD, the Alzheimer’s Association, and the Division of Substance Abuse and Mental Health (DSAMH). More multi-professional trainings were developed and conducted throughout the state.

The training would be for professionals, inclusive of health care, first responders, retail, and anyone who may deliver a service to someone diagnosed with dementia.

The last goal of the plan sought to improve and expand Delaware Alzheimer’s and dementia-related infrastructure (data, quality assurance, research) by supporting the creation of a Delaware Center for Alzheimer’s and Related Dementias (DECARD).11 DECARD is a virtual hub of dementia information and resources.

As a statewide collaboration, DECARD fosters collective ownership and innovation while working toward improving and expanding Delaware’s Alzheimer’s and dementia-related infrastructure through data, quality assurance and research. It is a partnership between DSAAPD, the Alzheimer’s Association, Delaware State University and University of Delaware. This work also included getting the cognitive impairments module added to the Behavioral Risk Factor Surveillance System (BRFSS) in Delaware. BRFSS is the nation’s premier system of health-related telephone surveys that collect state data about U.S. residents regarding their health-related risk behaviors, chronic health 8 Delaware Journal of Public Health - September 2021

conditions, and use of preventive services.12 Delaware will use the cognitive module to inform how the state addresses dementia and other cognitive impairments in the future.

On recommendation of partners from the Alzheimer’s Plan work, DSAAPD instituted two programs available to those living with dementia and their caregivers. The Nurse Navigator Program utilizes specialized nurses within DSAAPD that support participants diagnosed with dementia and their caregivers by connecting them to services, educating them, and collaborating with health care providers and agencies, all in a person-centered approach. These nurses have been vital team members for families trying to steer the difficult landscape of services and supports for their loved ones. DSAAPD also instituted the Resources Enhancing Alzheimer’s Caregiver Health (REACH). Through the Rosalynn Carter Institute for Caregiving (RCI), trained nurses are coaches of the REACH, an evidence-based curriculum. REACH provides education, a focus on safety for the client, support for the caregiver, and skills building to help caregivers manage difficult client behaviors and decrease their own stress. REACH is an in-home, tailored, caregiver support intervention consisting of individual sessions in the home or by telephone.13

SUCCESS OF THE FEDERAL ALZHEIMER’S GRANT In 2014, DSAAPD applied for and received a federal dementia grant. This grant was written to position DSAAPD to accomplish some of the goals of the unfunded Alzheimer’s Plan to and fill the gaps in Delaware’s dementia-capable system of support. The grant ran from September 1, 2015 to August 31, 2019. Activities included several expanded and new services for people living with ADRD and their caregivers, as well as training opportunities for professionals. Activities included • Community Living Expansion. Provided transportation and companionship services to individuals diagnosed with Alzheimer’s disease or related dementias so that they had access to community resources and opportunities for personal, social, and/or educational enrichment. United Cerebral Palsy administered this program.

• Legal Services Voucher Program. People diagnosed with Alzheimer’s disease or related dementias were provided a voucher to seek legal services from participating attorneys.

• Dementia Competency Training. Professional trainings developed in partnership with the Alzheimer’s Association and the American Bar Association. The legal trainings helped prepare members of the Delaware Bar to participate in the legal services voucher program and likely has had a lasting impact on the dementia friendliness of the Delaware Bar. • Lifespan Respite Expansion. Caregivers of those diagnosed with Alzheimer’s disease or related dementias were provided a voucher for respite services.

Respite is a temporary break for caregivers from their regular caregiving responsibilities. Easterseals administered this program.

• Savvy Caregiver. A FREE training series for family caregivers of those diagnosed with dementia held at all six of DSAAPD’s caregiver resource centers around the state (Wilmington Senior Center, Newark Senior Center, Easterseals New Castle and Georgetown, Modern Maturity Center and CHEER).

• Sensory Technology Pilot Program. This pilot program received a lot of attention from our federal partners, and other states were interested in our outcomes. It focused on home monitoring of people with Alzheimer’s disease or related dementia using technology. Sensor Insight, a subsidiary of IBM, administered this program.

Through the grant, DSAAPD was able to provide 36987.45 hours of direct services, including 21,838.20 hours of respite utilized under the Lifespan Respite program by 507 caregivers for those with Alzheimer’s disease or related dementias. Service hours totaling 3,114.25 were provided under the Community Living program to 58 individuals with Alzheimer’s disease or related dementias, and 192 caregivers participated in Savvy Caregiver over 688 hours. Through the legal services program, 28 hours of legal vouchers were utilized; 11,025 hours of sensory technology services were rendered to seven participants, equaling five hours of active participation a day per participant; 57 legal professionals received 258 hours of legal training; and 69 other professionals received 36 hours of dementia training.

supporting employees who are caregivers. Health care systems can promote early diagnosis and options for ongoing care and support. Communities of faith provide welcoming and engaging environments for those with the disease and their caregivers.

Local governments plan and implement housing, transportation, public spaces, and emergency response that enable people with dementia to thrive in the community. Neighbors and community members are understanding and supportive to those around them, including individuals with cognitive impairment. Residential care and community-based supports offer a range of services to maximize independence and support ongoing community engagement with a variety of options adapted to cognitive decline.

Though the grant is ended, legal services, lifespan respite, and community living have continued through other sources of funding within DSAAPD. In addition, each Caregiver Resources Center has continued to offer Savvy Caregiver classes at their locations.

While momentum is strong for the DFD to be successful, the Coronavirus upended any progress toward implementation.

DSAAPD and its partners are continually working to ensure that the initiative is successful and plans to reestablish efforts in 2022.

DSAAPD was able to lay the groundwork for Dementia Friendly Delaware (DFD) with the efforts of this grant and the Alzheimer’s Plan. DSAAPD and partners, including Lt. Governor Bethany Hall-Long and the Behavioral Health Consortium, are working together to support people diagnosed with dementia and their caregivers though an innovative new initiative: DFD. DFD provides a system of technical assistance, tools, and resources to assist communities and individuals in taking action to improve community and system capabilities; optimize the health, wellbeing, and involvement of people with dementia and their care partners; and support them to continue in their roles.

Delaware joins a network of over fifty communities all over the country to prepare for the personal, social, and budget impacts of dementia by addressing community needs and increasing support for people impacted by dementia.14

Taking an all-sectors approach is a way to build engagement across many parts of the community. Unique to DFD, sector guides are provided to agencies and organization to provide information, resources, and actions that specific sectors can take, such as environmental tips toward dementia friendliness. In the Business sector guide, tips include providing quiet places to sit and relax, and making sure there are well-lit hallways, uncluttered spaces and prominent, easy-to-understand signs for restrooms and other important places. If the community and system have the capability to adopt dementia friendly practices, everyone in our state will benefit. We also believe that the training provided will have a positive effect on other populations, like those with autism.

PLANS FOR THE FUTURE: BEHAVIORAL HEALTH CONSORTIUM

The Dementia Friendly America (DFA) movement began in September 2015 following the White House Conference on Aging and is based upon Minnesota’s statewide successful initiative, ACT on Alzheimer’s. DFA launched in 2015 with pilot communities in Denver, CO; Prince George’s County, MD; Santa Clara County, CA; Tempe, AZ; and the state of West Virginia.1 Delaware launched its effort in 2019.

The Delaware Behavioral Health Consortium is a premier consortium comprised of private and public organizations and advocates that work through a shared plan to improve behavioral health system within the State of Delaware. Lieutenant Governor Bethany Hall-Long chairs the Consortium and has a unique passion for this work as she is a public health nurse. Although the Consortium was created to primarily address the opioid epidemic, community outreach was conducted to create the priorities for the consortium. It was through this outreach that it was made clear that there was concern about how the state treats and support those with ADRD and their caregivers. This concern was one of those included in the initial three-year Report,15 and was placed within the work plan for the Family and Community Readiness Committee (one of six committees that have taken on the recommendations from the initial report). The Consortium as a whole has achieved the majority of the goals outlined in the initial report, but it continues to work on rising issues. The Consortium continues to try to be proactive to the needs of the state and push for innovation. The Family and Community Readiness Committee is uniquely dedicated to the advancement of treatment and support for the Alzheimer’s community.

DFD ensures every part of the community plays a role and can work together to take steps to create a dementia friendly culture.

This includes businesses, such as banks and financial and legal services who support customers with dementia, and employers

The Family and Community Readiness Committee is comprised of Alzheimer advocates, state agencies such as DSAAPD, and private citizens. The Committee is dedicated to taking on the recommendation of exploring how to better support the aging

DEMENTIA FRIENDLY DELAWARE

9

population and their mental health needs. One of the first steps of the Committee was to conduct a needs assessment for the aging population, which was done through a collaboration with DSAMH. The report is a jumping off point for the Committee to identify priorities and engage stakeholders on them.

CROSS AGENCY COLLABORATION: DSAMH AGING WELL WITH BEHAVIORAL HEALTH ISSUES IN DELAWARE A staple practice across the Consortium and its committees is to bring partners together to collaborate and innovate. This approach was used in addressing their task of creating and conducting geriatric behavioral health or substance use disorder evaluations and needs assessments for treatment. The Committee worked with DSAMH, with help from We in the World, an organization that is known for their equity analysis, to conduct a gap analysis which culminated in a report. They spoke with multiple stakeholders and state agencies to understand what was currently occurring with the aging population, and then created the Aging Well with Behavioral Health Issues in Delaware report which reported on the gaps and consisted of over 20 recommendations.

The DSAMH Aging Recommendations consist of a tiered approach based on risk level, with the lower tiers being deemed for everyone and those with low risk, and the higher tiers being for those who have the highest risk. The main recommendations are: • Build capacity to identify and improve mental health and addiction outcomes by applying a proactive population health approach and equity lens; • Expand health care and community capacity for geriatric behavioral health supports to meet and coordinate the needs of the highest risk and medium/ rising risk populations; • Identify and build supports for life transition points that are moments for increased risk; and • Create conditions to support well-being for all people aged 50+ as they age.

The recommendations take a holistic approach to addressing the concerns. Each recommendation has even more detailed recommendations that outline what specifically could be done, and the Committee is currently working to identify key priorities.

DSAAPD has also reviewed the recommendations and is working with DSAMH on them. The Consortium constantly works to increase cross agency collaboration and also build in private investment and ownership to create stability in the solutions that are developed.

EXPANDING THE BRIDGE CLINICS Some of the highlights from the recommendations include increasing access to treatment, lowering the age that people are able to receive resources, and to create environments that allow the aging population to continue to thrive. Specifically, there was a recommendation to expand the Bridge Clinics to include a geriatric clinic. The Bridge Clinics, which are a DSAMH entities, 10 Delaware Journal of Public Health - September 2021

have been an innovative approach to getting various people into rapid treatment. There are three clinics located in each county that provide rapid assessment and treatment for those with mental health and substance use issues. The Bridge Clinics provide treatment until people can get into more specific treatment. It was recommended that these clinics expand their services to address the needs for geriatric mental health. This would help to lessen the burden that police face when they respond to calls that involve those who have dementia, such as instances when people wander or are disorientated. It would also strengthen the treatment system and move it toward pro-action.

EXPLORING POLICY RECOMMENDATIONS ON PROVIDER EDUCATION AND SUPPORT FOR CAREGIVERS Building out the treatment systems includes building out the workforce; this has been front of mind for the Family and Community Readiness Committee. There has been a specific focus on how to improve training for providers so that they can be better informed in how to work with those who have ADRD. In 2009, the Delaware State Legislature passed HB 159. This bill requires the Department of Health and Social Services (DHSS) to adopt regulations that require at least one hour of training annually for certified, licensed, or registered healthcare providers, as well as for healthcare providers who are partially or fully funded by the State, who provide services to persons diagnosed as having Alzheimer’s disease or other forms of dementia, or with mental illness.16 This work coincides with the work from the State Plan as well as to recommendations from the Aging Well Report around expanding training and competency building for geriatric mental health and addiction across the continuum of care. Training is one step to improving the quality of treatment that those with ADRD receive. The Committee is exploring if legislation is needed to further codify these efforts.

CONCLUSION Ultimately, Delaware has been actively working to address the rising concerns around how to better support the aging populations and more specifically those who have ADRD and their caregivers. The COVID pandemic has specifically highlighted the need to further think about how we better support caregivers and those with ADRD. There has also been a collective movement to holistically address the needs of those with ADRD through initiatives such as Dementia Friendly Delaware. The work that DSAAPD is doing with the implementation of their State Plan is the foundation for programs and support. But this is not a single agency issue and so the inclusion of multiple partners and stakeholders is necessary to ensure that the issue is addressed holistically. This is where the inclusion of the Behavioral Health Consortium is key to assist with engaging other stakeholders and promoting issues and innovation that come from advocates.

The Consortium is a tool to increase collaborators which helps to strengthen funding and expand the base of possible clients.

Overall. the state of Delaware is working to on innovative solutions to work to better support those with ADRD and their caregivers holistically.

REFERENCES 1. Alzheimer’s Association. (n.d.) Facts and Figures. Alzheimer’s Disease and Dementia. Retrieved from: https://www.alz.org/alzheimers-dementia/facts-figures 2. American Psychological Association. (n.d.). Family Caregiving. http://www.apa.org/about/gr/issues/cyf/caregiving-facts.aspx 3. United States. (1978). Older Americans Act of 1965, as amended. Washington, D.C.: Administration on Aging, Office of Human Development Services, U.S. Department of Health, Education, and Welfare.

4. Division of Services for Aging and Adults with Physical Disabilities. (2020, Sep 24). Latest Delaware state plan on aging approved. Retrieved from: https://dhss.delaware.gov/dhss/dsaapd/stateplan_approval_2020.html 5. Division of Services for Aging and Adults with Physical Disabilities. (2020). 2020 – 2024 Delaware state plan on aging.

Retrieved from: https://www.dhss.delaware.gov/dhss/dsaapd/files/state_plan_on_ aging_20_24.pdf 6. Delaware Department of Health and Social Services. (2014, Feb 18). Delaware releases state plan to address Alzheimer’s disease and related disorders. Retrieved from: https://www.dhss.delaware.gov/dhss/pressreleases/2014/ alzheimersassociationrelease-021.html 7. Division of Services for Aging and Adults with Physical Disabilities. (2013, Dec). Delaware State Plan to Address Alzheimer’s Disease and Related Disorders. Retrieved from: https://www.dhss.delaware.gov/dhss/dsaapd/files/alzheimers_plan.pdf

8. Division of Services for Aging and Adults with Physical Disabilities. (n.d.) Alzheimer’s Toolkit. http://dhss.delaware.gov/dhss/dsaapd/alzheimers_toolkit.html 9. Centers for Disease Control and Prevention. (n.d.). Healthy Brain Initiative. https://www.cdc.gov/aging/healthybrain/index.htm 10. Delaware Center for Alzheimer’s Disease and Related Dementias. (n.d.). Homepage. https://decard.org/ 11. Centers for Disease Control and Prevention. (n.d.). BRFSS. https://www.cdc.gov/brfss/index.html 12. Rosalynn Carter Institute for Caregiving. (n.d.). Dementia. https://www.rosalynncarter.org/programs/dealing-with-dementia/ 13. Dementia Friendly America. (n.d.) Homepage. https://www.dfamerica.org/ 14. Ciolino, N. (2019, April 30). Delaware seeks to be more “dementia friendly”. Delaware Public Media. Retrieved from: https://www.delawarepublic.org/post/delaware-seeks-be-moredementia-friendly 15. Delaware Behavioral Health Consortium. (n.d.). Three-year action plan. Retrieved from: https://ltgov.delaware.gov/wp-content/uploads/sites/27/2018/05/ delaware_bhc_threeyearactionplan_2018.pdf 16. Delaware General Assembly. (n.d.). House Bill 159. Retrieved from: https://legis.delaware.gov/BillDetail?LegislationId=20168

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The DPH Bulletin

From the Delaware Division of Public Health

August 2021 Face masks required for K-12 schools and child care homes and centers

Effective August 16, 2021, face coverings are required for those Kindergarten age and older, in K-12 schools, child care homes and centers, and state offices and facilities, regardless of vaccination status. Governor John Carney announced the requirement on August 10.

COVID-19 vaccination available to students, families, and staff age 12+ at four schools on August 19

Delaware’s Division of Public Health (DPH), Department of Education (DOE), and school districts are partnering with Albertsons to offer free walk-in COVID-19 vaccinations.

On August 19, 2021, between 4:00 p.m. and 8:00 p.m., students 12 and older, their families, staff, and community members can receive their first dose of the Pfizer vaccine from Albertsons’ pharmacists at one of four events statewide. Those vaccinated need to return on September 9, 2021 between 4:00 p.m. and 8:00 p.m. to receive their second dose.

Pre-registration is encouraged. Pre-register by clicking on any of these four locations: • Howard High School of Technology 401 E. 12th St., Wilmington, DE 19801 • William Penn High School 713 E. Basin Rd., New Castle, DE 19720 • Lake Forest Central Elementary School 5424 Killens Pond Rd., Felton, DE 19943 • Seaford Middle School 500 E Stein Highway, Seaford, DE 19973 Only COVID-19 vaccination will be offered. Children under 18 who are not accompanied by a parent or guardian need their written consent.

Submit COVID-19 vaccination questions to education.covidvaccine@doe.k12.de.us.

12 Delaware Journal of Public Health - September 2021

“There’s no higher priority than getting all Delaware children back in their classrooms full-time this fall,” said Governor Carney. “This consistent, statewide approach will help students, educators and staff return to school safely and without disruption.” The requirement covers public and private schools in Delaware.

Child care centers and homes are strongly encouraged to require masks for children 2 years old to kindergarten age inside their facilities to prevent spread of COVID-19. Due to the risk of suffocation, masks must not be worn by children younger than 2 years.

K-12 schools and early learning centers to get free rapid COVID-19 antigen tests

On July 19, the Division of Public Health (DPH) and the Delaware Department of Education (DOE) announced a $15 million partnership with the Quidel Corporation to provide rapid antigen tests for COVID-19 in all Delaware schools and early learning facilities. On-the-spot results will be available within 10 minutes. The service is free to schools and staff.

With parental permission, Quidel staff will conduct on-site testing, analyze results, and report them to families and the State, taking the burden off schools.

Routine screening testing is a key strategy recommended by the CDC and re-enforced in its recent guidance for schools and child care facilities.

“This program allows schools the best of both worlds, being able to identify potential cases early while continuing to focus on the business of learning,” said DPH Chief Physician Dr. Rick Pescatore.

To learn more about the program, visit: https://www.dhsscovidschooltest.com. Send medically related questions regarding testing, symptoms, and health-related guidance to DPHCall@delaware.gov.

State announces COVID-19 testing recommendations for unvaccinated persons and updates to testing program With COVID-19 cases increasing in the state and nation, and the majority of cases occurring among unvaccinated individuals, Governor John Carney, the Division of Public Health (DPH), and the Delaware Emergency Management Agency (DEMA) echo the Centers for Disease Control and Prevention’s (CDC) urgent call to increase vaccinations nationwide. All Delawareans 12 years old and older are urged to get vaccinated if they have not already received their COVID-19 vaccine.

DPH recommends that unvaccinated people: • Get tested once a week.

• Get tested 5-7 days after being exposed to someone with COVID. • Isolate at home immediately if unvaccinated and develop symptoms of COVID-19, and quarantine at home immediately if exposed to someone with COVID-19.

The CDC recommends fully vaccinated persons get tested 3-5 days after being exposed to someone with COVID. Fully vaccinated individuals do not need to quarantine after exposure.

The CDC also recommends that anyone with any signs or symptoms of COVID-19 get tested, regardless of vaccination status or prior infection.

“With COVID-19 cases climbing daily, it is very important that you get tested weekly if you are not vaccinated in order to identify and stop the spread of COVID,” said DPH Director Dr. Karyl Rattay. That will help DPH identify infection among people with no symptoms and allow them to take steps to ensure they are not unknowingly spreading the disease.

A list of testing locations and options, including fixed, static, and rotating sites, is at de.gov/gettested. Athome testing is offered free of charge through a partnership with Vault Health, as well as a new partnership with LabCorp which supports testing for symptomatic or high-risk individuals. A new partnership with Delaware Libraries allows Delawareans to pick up a take-home rapid test kit at most library locations.

COVID-19 Testing Options Fixed Locations: At pharmacies, including 30 Walgreens, Rite-Aid, and Health Mart pharmacies through a federal program focused on areas of high social vulnerability. Testing at state-run and federal program sites is free. Other sites may charge; contact the site for details.

DPH static vaccination sites: Georgetown Plaza Shopping Center 19 Georgetown Plaza, Georgetown, DE 19947 (At U.S. 113 and U.S. 9 intersection) Monday/Wednesday/Friday – 8:30 a.m. to 11:30 a.m. and 1:15 p.m. to 4:00 p.m.

Tuesday/Thursday – 11:00 a.m. to 7:00 p.m.

Blue Hen Corporate Center in Dover 655 S. Bay Road, Suite 1A, Dover, DE 19901 (Office is located in the rear of building near the WIC entrance) Monday-Friday – 8:30 a.m. to 11:30 a.m. and 1:15 p.m. to 4:00 p.m.

Oxford/University Plaza in Newark 256 Chapman Road, Suite 100, Newark, DE 19702 (Located in the Oxford Building of University Plaza) Monday-Friday – 8:30 a.m. to 11:30 a.m. and 1:15 p.m. to 4:00 p.m.

Canby Park in Wilmington 1946 Maryland Ave., Wilmington, DE 19805 (Located in the Elizabeth Shopping Mall) Monday/Wednesday/Friday – 8:30 a.m. to 11:30 a.m. and 1:15 p.m. to 4:00 p.m.

Tuesday/Thursday – 11:00 a.m. to 7:00 p.m.

Community Locations: The State continues its partnership with Curative to bring testing to local residents.

At-Home Testing: Several options are available including take home test kits at Delaware Libraries (except Greenwood).

School-based testing: Free rapid antigen testing offered to all schools and early learning facilities for students and staff.

Visit de.gov/gettested for the full list.

The DPH Bulletin – August 2021

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City of Wilmington commends DPH contact tracer for COVID-19 efforts

For 30 years, Ubaldo “Carlos” Valles has operated his business, Bloomsberry Flowers, in Wilmington.

Then orders sharply fell off due to the Coronavirus disease 2019 (COVID-19) pandemic. The florist had to find a new way to pay his mortgage.

Valles, 52, applied for a contact tracer position with the Division of Public Health (DPH). He began working under contract as a Senior Social Worker/field investigator in July 2020.

All vaccinations should be up-to-date The Division of Public Health (DPH) reminds parents and guardians that children’s vaccinations should be current prior to the start of school. Vaccines protect children against serious diseases such as measles, varicella (chicken pox), and pertussis (whooping cough).

Preteens and teens need four vaccines to protect against serious diseases: meningococcal conjugate vaccine to protect against meningitis and bloodstream infections; HPV vaccine to protect against cancers caused by HPV; Tdap vaccine to protect against tetanus, diphtheria and whooping cough; and a yearly flu vaccine to protect against seasonal flu.

“Parents and guardians have the power to protect their children from these serious diseases,” said DPH Director Dr. Karyl Rattay. “When scheduling back-toschool wellness visits, ask for children ages 12 and older to get vaccinated for COVID-19 at the same time they receive their other needed vaccinations.”

Valles embraced his new job with enthusiasm, encouraging residents to be tested, then vaccinated; and to practice safety measures. He reached out to City of Wilmington Councilwoman Yolanda M. McCoy and her peers to offer to provide community education about COVID-19 prevention. He sent McCoy suggested testing sites and items for her to share during virtual meetings, and publicized testing and vaccination opportunities at community events.

McCoy showed her gratitude for Valles’ hard work, especially in the 6th District with minority communities, by sponsoring a City Council tribute.

The tribute reads in part: “His dedication to his community and the selfless acts that he has portrayed throughout his time in this community, especially during this pandemic, is truly admirable and deserving of recognition.”

“It is a good feeling when I can help those who only speak Spanish,” Valles said. “The appreciation they give you is worth what I do. It’s fulfilling.”

To determine which vaccines children need, visit the Centers for Disease Control and Prevention (CDC) for a parent-friendly immunization schedule: https://www.cdc.gov/vaccines/parents/schedules/index.html.

Individuals who received immunizations in Delaware can access their official immunization records by visiting the DelVAX Public Access Portal: https://delvax.dhss.delaware.gov/delvax_public/Appli cation/PublicPortal. First read the instructions at: https://www.dhss.delaware.gov/dhss/dph/ipp/portalflyer.pdf.

If users have any questions or concerns, they should contact the Delaware Immunization Program at 800282-8672 or DelVAX@delaware.gov. After hours and on weekends responses may be delayed 24-48 hours.

The DPH Bulletin – August 2021 14 Delaware Journal of Public Health - September 2021

Ubaldo “Carlos” Valles

He continues his work as a florist on the weekends for businesses and weddings.

www.consumerfinance.gov

Page 3 of 4

Diabetes report recommends registry, increasing access to programs The Impact of Diabetes in Delaware, 2021 report was recently produced by the Delaware Department of Health and Social Services’ Division of Public Health (DPH) and Division of Medicaid & Medical Assistance, and the Department of Human Resources’ Statewide Benefits Office.

Thoroughly cook shellfish and wade cautiously to avoid Vibrio bacteria Vibrio bacteria naturally live in saltwater and brackish waters, a mixture of fresh water and saltwater. About a dozen Vibrio species can cause human illness, known as vibriosis. These bacteria are present in higher concentrations between May and October when water temperatures are warmer. In Delaware, the Division of Public Health (DPH) reported 14 cases of Vibrio between May 1 and October 31, 2020.

Eating raw or undercooked shellfish, especially oysters, can put people at risk for vibriosis infections.

Of the 80,000 vibriosis cases reported each year in the United States, an estimated 52,000 cases are caused by eating contaminated food, according to the Centers for Disease Control and Prevention (CDC).

Vibriosis symptoms are watery diarrhea, abdominal cramping, nausea, vomiting, fever, and chills and usually occur within 24 hours of ingesting raw or undercooked shellfish (particularly oysters). Symptoms last about three days.

Immediately consult with a primary care provider if you suspect vibriosis.

People may also become infected with vibriosis through a skin infection. Those with open wounds (including from a recent surgery, piercing, or tattoo) and weakened immune systems should avoid swimming or wading in saltwater or brackish water.

Wear protective clothes and shoes when in saltwater or brackish water. Serious infections can result in intensive care or even limb amputation.

To monitor diabetes management and reduce disparities in health outcomes among Delawareans with the chronic disease, the agencies recommended the development of a statewide Delaware Diabetes Registry to the Delaware General Assembly. Another recommendation is to increase in-person and online access to, and participation in, Diabetes Self-Management Education for adults.

In Delaware, more than 98,700 adults are diagnosed with diabetes, which is treatable with healthy lifestyle behaviors and a medication regimen to control blood glucose levels. As many as 25,000 adults may be living with undiagnosed diabetes, the report says.

Prevention, early diagnosis, and effective selfmanagement can avert and reduce costly outcomes such as heart disease, stroke, amputation, endstage kidney disease, blindness, and death.

Read the report at https://dhss.delaware.gov/dhss/dph/dpc/files/diabetesb urdenreport2021.pdf. For diabetes resources, contact DPH’s Diabetes and Heart Disease Prevention and Control Program at 302-744-1020 or https://www.dhss.delaware.gov/dhss/dph/dpc/diabetes.html.

Medicaid Fee-for-Service (FFS) and Managed Care Organization (MCO) Paid Expenditures in Millions by Chronic Disease, State of Delaware, Fiscal Year 2020

Prevent vibriosis by cooking oysters and other shellfish properly before eating. Keep raw and cooked shellfish and their juices separate. Wear protective gloves when shucking raw oysters, clams, or mussels, or while handling other shellfish, and wash hands afterward.

For more information, visit the CDC at https://www.cdc.gov/vibrio/faq.html.

The DPH Bulletin – August 2021

Source: The Impact of Diabetes in Delaware, 2021 report.

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Advocacy for Alzheimer’s Aimee Isaac, M.S. Volunteer Advocate, Alzheimer’s Association

Over forty years ago a group of advocates came together to start what is now known as the Alzheimer’s Association. They all came from different advocacy backgrounds but they had one thing in common: they were caring for loved ones with Alzheimer’s and other dementias and they needed help. They needed answers from the medical community (a common phrase they shared was “diagnosis and adioses”), they wanted support and education for caregivers, research for treatment and a cure, and social insurance for long term care so that they no longer had to live in fear of bankruptcy.

The group was determined. They raised money, met with legislators, testified before Congress. The organization grew and eventually began providing support and educational programs in every state. They fought for research funding dedicated to Alzheimer’s at the National Institutes of Health (NIH)1 and since the passage of the National Alzheimer’s Project Act (NAPA) in 2010 that funding has increased more than seven-fold. In 2021 the NIH will likely spend $3.1 billion for Alzheimer’s research.2 Because of the Alzheimer’s Association we have seen progress in research funding and policy. Unfortunately, the progress isn’t always felt at the doorsteps of American families living with the crisis of Alzheimer’s. Karlawish1 shares that in 1990 co-founder Hilda Pridgeon testified before Congress that Alzheimer’s was a “‘national crisis’ whose annual bill of $80-90 billion…is paid for by families.” She went on to say “(t)hey are afraid of what will happen to them if they get this disease. They are even more afraid of how their families will cope.’” Thirty-one years later, Alzheimer’s costs the nation $355 billion annually,3 much of it still paid for by families. For most patients, definitive diagnostic tests are unavailable, prevention is limited to a healthy lifestyle, there remains no universal treatment, no cure, and families are still struggling to cope.

Families still need support. Many are juggling caregiving with jobs of their own, other family members needing care, and bills that just keep arriving. Many are juggling the stress of not knowing what to do or where to turn and subsequently developing their own health problems. When I didn’t know where to turn, I called the Alzheimer’s Association and then I became an advocate.

There is a lot more ground to cover but when we join our voices together, we can facilitate change. It begins with telling our stories.

parents imagined. Dad’s anxiety increased and he plummeted into depression. It was so unlike him that we determined he must be depressed about his retirement.

When Dad saw his primary care physician (PCP) in January 2014, he scored 29/30 on a cognitive test. In October he saw a psychiatrist and was diagnosed with clinical depression.

Medication made things worse. By the end of 2014, Dad’s cognitive score decreased and he saw a neurologist. She diagnosed him with mild cognitive impairment and recommended biofeedback for his anxiety. A few weeks later, the practice closed down and we were referred to a neuropsychiatrist at Hopkins. For weeks, no one returned our phone calls.

Meanwhile, Dad’s PCP began researching neurological issues.

It was probably dementia but maybe it was Lyme disease? By summer 2015, Dad was consumed with apathy. He no longer spent time on hobbies and was unable to help Mom around the house. Mom wasn’t sleeping well. With every new doctor came a new medication. The transitions were nightmares. At no point did we feel like we had a handle on his disease or any idea how to manage it. The house and the illness became too much. My parents moved to Delaware to be closer to my family.

Once my parents settled in Delaware, I became part of the caregiving team. Dad’s aphasia worsened and he struggled to take care of himself. He began to hallucinate. Dad started coming to my house when my mother had appointments or needed respite.

Travel to Maryland for appointments consumed him with fear and anxiety but in Sussex County, the waitlist for new patients was too long, so the trips continued.

Dad was a participant in a study at Hopkins and it was finally confirmed: he had Alzheimer’s. He wasn’t going to get better. His grandchildren would never know his laughter or the way he could turn wood into furniture or inspire others to advocate for the environment. Mom feared that the costs of long term care could leave her with nothing. We avoided it as long as we could. Sleep continued to evade her.

My parents, Linda and Ron, dreamed of their retirement years.

They planned to travel, bike, and spend time with the grandkids.

My mother was a Radiologic Technologist and my father an engineer. Dad was never really sure when he would retire, but by the end of 2012, at the age of 61, his brain decided for him.

We never connected with a social worker but through the Alzheimer’s Association found a support group. A local friend referred us to the Gull House for daytime respite. We never once felt like we knew how to properly care for my father and none of his physicians offered care-planning. Then, in early 2018, Dad had a seizure, became a fall risk, and we had to move him to long term care. It was difficult. Even with our doubts, no one could care for him like we could. And he wanted to come home. He had one aide whom he connected with. She made sure he was bathed and fed.

We will forever be grateful to her. We paid $7,000 per month for his care. She earned $10 an hour with no benefits.

Dad was overwhelmed at work and began having difficulty concentrating. He couldn’t keep things straight and something seemed off with his memory. By June, Dad developed anxiety, something that never afflicted him in the past. It was all too much and so, he retired. But this wasn’t the happy moment my

Mom visited Dad nearly every day. He continued to fall, and stopped eating. The facility was going to recommend we move him but instead, hospice was called in. On May 6, we lost my father for the last time. He was 66. An autopsy confirmed he had high-level Alzheimer’s disease and neocortical Lewy body disease.

WHAT IS YOUR STORY?

16 Delaware Journal of Public Health - September 2021

doi: 10.32481/djph.2021.09.004

BEATRICE’S STORY

KENT’S STORY

Around the same time that my father began struggling with work, so did Traci’s mother Beatrice. Beatrice was in her early sixties.

She was a fashionista who fiercely loved her family, a kind and generous woman. A longtime cashier, Beatrice began forgetting things she said and passwords for the computer. This was all secondary to headaches she suffered from due to meningiomas.

Beatrice was a young 64, but realized it was time to retire. A few months later, Beatrice was diagnosed with mild cognitive impairment. Beatrice saw her PCP and a neurologist. She tried some medication. No one told them that Beatrice had dementia, but Traci’s research led her to believe her mom had vascular dementia. No one else in the family had experienced it so Traci didn’t really know where to begin.

Nancy’s husband Kent was a brilliant biophysicist. He was a researcher who had many patents and a calm demeanor.

They moved to Delaware in 2010, and in 2016 Nancy knew something was off. Kent was 68 and struggling to manage finances. His handwriting was different. A friend convinced him to be tested at Hopkins and he was diagnosed with mild cognitive impairment. The following year he was exhibiting Parkinsonian symptoms. He received an MRI, spinal tap, and CAT Scan. Eventually he was diagnosed with Alzheimer’s.

“It’s hard” she said. “You don’t know what’s coming at you.”

One day Beatrice fell at home and hit her head. It was time to move to a one-story home. Losing her house was difficult. Traci’s brother helped care for their mother when he wasn’t working but mostly, Beatrice spent time at Traci’s house and with aides in her home. She was high functioning but couldn’t be alone.

“Do you think my mother has dementia?” Traci once asked the neurologist.

The answer: “Yes.” After a hospital stay, their family was connected with a social worker who recommended a local day break program at the Modern Maturity Center. There was a caregiver resource center that Traci found helpful. The next few years were dedicated to Beatrice’s care. Traci managed her schedule, her aides, her meals, and made sure she was not alone. Medicaid allowed limited hours for the aides, so Traci was grateful to be a stay at home mother and able to juggle it all. But she had health issues of her own, a young daughter, and a husband. It was a lot for one person. Traci was particularly grateful to the aides who went the extra mile for her mom but challenged by those who did not provide quality care.

Eventually, it got to be too much for Traci’s family. Traci longed to be the daughter again and not just the caregiver. Her mother’s personality had changed and she was having hallucinations. Their social worker agreed that it was time to move Beatrice to long term care. She started in an unrestricted area but was soon moved to memory care. The entire transition was difficult for both Traci and Beatrice. Her mother just wanted to be home.

In March of 2020, Traci was invited in to see her mother before the lockdown was to begin. Beatrice was talking, eating, drinking.

After 68 days of isolation, Beatrice became unresponsive. She was admitted to the hospital and soon Traci received a phone call.

“There’s been a setback. Your mom has COVID-19.”

Traci was asked to sign a DNR. Like so many relatives of long term care facility residents, Traci lost her mother to COVID-19.

Beatrice was only 72.

When Traci began this journey, she had no idea how it would impact her and her family.

“I was there for them physically but mentally, I wasn’t.”

She felt isolated.

“The disease had a destructive impact.”

Alzheimer’s takes a relentless toll on caregivers. During the pandemic and when Traci lost her mom, she wasn’t sure, for a time, who she was. For eight years she was her mother’s caregiver and advocate. Who would she be now?

Kent the researcher got to work. He read everything he could about the disease. He was determined to find a way out but Kent’s research led him to the truth: there is no cure. The idea that he couldn’t find the answer was devastating.

“This is going to get really bad. I trust whatever you decide.” he said.

To his daughter he said, “You’ll need to take care of your mom when I’m gone.”

Kent’s behavior quickly changed. He became frustrated and violent. He couldn’t handle losing himself and he likely had frontal temporal dementia. His calm demeanor disappeared.

They had a social worker through the neurology department at Hopkins who suggested Nancy join a support group. Nancy was uncomfortable joining for the first time so a friend went with her. Now Nancy does the same for others.

As things got worse, Nancy found adult day care, but once Kent flipped a table in anger he wasn’t allowed back. Then Kent decided he wanted to go on a cruise. Against her better judgement, Nancy took him in June 2018. She wanted him to be happy. He walked onto the cruise ship but being out of his familiar environment was rough. He left in a wheelchair.

At home, the anger got worse and Nancy felt it was time for long term care. Her children came to visit and agreed; Nancy could not care for him alone. In November, Kent entered his first long term care facility. He lasted ten days. He was admitted to the local hospital in an effort to find a medication that would calm him down. He was restrained. Nothing helped. Kent was returned to long term care and then sent to a psychiatric hospital in Philadelphia that specialized in geriatrics. Still, nothing worked. Nancy was lost. She couldn’t care for him and no facility in Delaware would admit him. What was she supposed to do?

Finally, Nancy found a small group home in Maryland. If Kent came with a full-time aide, he could live there. He lasted three weeks. The stress was unrelenting. And then a nurse practitioner referred them to another group home. It was a small, family-like environment. The staff was consistent.

They got to know Kent, learned how to react to his anger in a way that deescalated him. They got to know his family. They prepared food the residents wanted and provided private rooms and bathrooms. It cost no more than a larger facility at $8,000 per month.

Then, in 2020, COVID-19 found its way into the home. Kent contracted the virus. Nancy and their children sat outside Kent’s window offering the comfort of their presence. Kent passed away. Alzheimer’s doesn’t end any other way.

17

DELAWARE: FACTS AND FIGURES According to the Alzheimer’s Association, there are over 19,000 Delawareans 65 and older with Alzheimer’s. Over 46,000 family caregivers provide $1.1 billion in unpaid care. It costs the state $253 million in Medicaid spending. Our hospitals see 1,578 emergency department visits per 1,000 people with dementia.4 There are programs and services available in Delaware but most caregivers will tell you, “I had no idea they existed.” And in Sussex County, where one quarter of the population is 65 and older, we have a physician shortage. Statewide, there is a shortage of cognitive neurologists and geriatric psychiatrists.

A PATH FORWARD Reflecting on the stories I’ve shared, I see three areas for growth.

First, we need more clinicians who can take on new patients, properly diagnose the disease, and provide care planning services. Kent and Beatrice had social workers to help them, but effective care planning should be in coordination with a physician’s office. Medicare billing code 994835 covers care planning services but many physicians don’t use it. I believe that if we had had a social worker or a care plan we would have had a better handle on my father’s care.

Second, a massive training effort is needed. Clinicians must be trained to diagnose, treat, and manage care. Massachusetts requires such training. Medical professionals in emergency departments and psychiatric wards need training to care for individuals with dementia without restraints and harmful medications. Employees at long term care facilities need training on a regular basis to provide quality care to residents.

Simply knowing how to speak to a person with dementia can be the difference between a hospital admission and a quick de-escalation. Training for caregivers is readily available but difficult to find. A doctor’s office, library, and grocery store are all places families are likely to frequent and are all potential sites of training.

Third, something needs to give with long term care. We need options like the group home Nancy found in Maryland.

Families should not have to cross state lines for care or live in fear of bankruptcy. Long term care costs $7,000 to $15,000 per month in Delaware. Unskilled home care costs $22-$25 per hour. But families cannot provide all of the care alone. The wealthy can find a way to pay for it. Those with Medicaid often have coverage for some of it. It can be a financial crisis for families in the middle.

One final note specific to Sussex County: With a growing aging population, more services are needed. Families are forced to commute for doctor’s appointments. There is no memory care practice, no geriatric psychiatric facility, and for some rural families, no transportation. Fortunately, in Delaware, one positive result from the pandemic is that Telehealth services are now permanently available.

BE AN ADVOCATE Advocacy can be described as the act of using your experience to raise awareness and influence change. Anyone can be an advocate for families living with Alzheimer’s: caregivers, persons with the disease, medical professionals, public health officials. There are three main components 18 Delaware Journal of Public Health - September 2021

to advocacy: share your story, share the facts of the disease, and make an ask. You can share your story on social media, with legislators and medical professionals through phone calls, emails and meetings, even in a letter to the editor of your local newspaper. If there is a hearing before our state legislature, attend, and if you’re comfortable, speak. If you want to advocate as part of a group, contact our local Alzheimer’s Association.

CALL TO ACTION Alzheimer’s is the most expensive disease in America. It often goes undiagnosed, prevention remains limited to a healthy lifestyle, and we still can’t universally treat it or cure it. We have made progress in the past 40 years. Support and education for caregivers is available but not yet in a way that means caregivers are coping well. Research is well-funded but there is still a lot of ground to cover. Families continue to watch their loved ones deteriorate into a shell of themselves and are desperate for help.

Delaware is a small but mighty state. It’s time for public health officials, the medical community, policy makers, and advocates to come together to forge a path forward for families to live with dementia without fear of financial ruin and lack of resources, to provide care planning to families and training to professionals serving those with Alzheimer’s, and to always have a place available to care for someone who can no longer be cared for at home. When we work together, families can get through this disease with a little less trauma and a lot more support. And perhaps our engineers, cashiers, biophysicists, mothers, fathers, spouses, grandparents can hold on to a little more dignity in a disease that, for now, has no happy ending.

ACKNOWLEDGEMENTS The interviewees, Traci and Nancy, were interviewed by me for this article and have given me permission to include their stories. Last names have not been used to protect their privacy.

REFERENCES 1. Karlawish, J. (2021). The problem of Alzheimer’s: How science, culture, and politics turned a rare disease into a crisis and what we can do about it. St. Martin’s Press.

2. Alzheimer’s Impact Movement. (n.d.) Alzheimer’s and dementia research. Retrieved from: https://alzimpact.org/issues/research 3. Alzheimer’s Association. (n.d.) Facts and figures. Retrieved from: https://www.alz.org/alzheimers-dementia/facts-figures 4. Alzheimer’s Association. (n.d.) Delaware Alzheimer’s statistics.

Retrieved from: https://www.alz.org/media/Documents/ delaware-alzheimers-facts-figures-2021.pdf 5. Alzheimer’s Association. (2019, Mar 27). Bipartisan improving hope for Alzheimer’s act introduced in Senate, House. Retrieved from https://www.alz.org/news/2019/bipartisan-improvinghope-for-alzheimer-s-act-intr

2021 John Scholz Stroke Education Conference WHEN

Saturday, October 16 8am – 12:00pm WHERE

FEATURING: Aneurysms & Subarachnoid Hemorrhage Sudhakar Satti, MD Psychological Effects of Stroke Nancy Devereux, PhD Cutting Edge Thrombolytics

Online Register Here: https://delamed.org/stroke2021

Sridhara Yaddanapudi, MD

Discharge Planning Jamir Dobson St. Francis Hospital The Medical Society of Delaware designates this live activity for a maximum of 3.75 AMA PRA Category 1 Credits ᵀᴹ CME credit conversion is 1 to 1 for Nursing and Pharmacy.

CE credits for Physical Therapy,, Occupational Therapy, and Speech Language Pathology have been requested.

Technology & Stroke Rehabilitation Louis N. Awad, DPT

COVID 19: Stroke Complications

Anna CervantesArslanian, MD

19

On the Frontlines of the Alzheimer’s Crisis: Advocacy Organizations in Delaware and Nationwide Urge Public Health Intervention to Curb Staggering Disease Trends Katie Macklin, M.P.A. Senior Director, Public Policy, Alzheimer’s Association Delaware Valley Chapter

ABSTRACT Historically, Alzheimer’s has incorrectly been seen as an aging issue, but more and more people are beginning to recognize that Alzheimer’s is a true public health crisis. The burden is large, the impact is major, and there are clear ways that public health can intervene. Advocacy organizations, like the Alzheimer’s Association, are driving changes in policy, systems and environments that address Alzheimer’s and other dementia with public health solutions. In Delaware, addressing this mounting health crisis begins with employing some of the most common and effective public health tools and techniques. Through strategic action, Alzheimer’s can be the next public health success story.

OUR “OTHER HEALTHCARE THREAT” The COVID-19 pandemic demonstrated the global impact health care crises can have on economies, health care systems, communities and individuals. Alzheimer’s disease is a public health issue requiring bold action. As the number of Americans living with dementia increases each year, robust public health responses are even more critical to support those currently affected and to mitigate future impacts.

An estimated 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2020.1 One in nine people aged 65 and older (11.3%) has Alzheimer’s dementia.1 Almost twothirds of Americans with Alzheimer’s are women.1 The disease also disproportionately impacts communities of color—Black Americans are about twice as likely to have Alzheimer’s or other dementias and older Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as compared to older Whites.1 Furthermore, as the number of older Americans grows rapidly, so too will the number of new and existing cases of Alzheimer’s. By 2050, the number of people aged 65 and older with Alzheimer’s dementia is projected to reach 12.7 million.1 In Delaware, the prevalence and incidence of the disease are equally as daunting. It was estimated that in 2020, 19,000 Delawareans aged 65 and older were living with Alzheimer’s.1 And this growth is expected to continue—between 2020 and 2025, the number of Delawareans aged 65 and over living with Alzheimer’s is projected to increase by more than 21%.1 Alzheimer’s is one of the country’s most expensive diseases. In 2021, Alzheimer’s and other dementia is estimated to cost the nation $355 billion, including $239 billion in Medicare and Medicaid payments.1 This number is projected to reach more than $1.1 trillion by 2050 (in 2021 dollars).1 This dramatic rise includes more than three-fold increases both in government spending under Medicare and Medicaid and in out-of-pocket spending for 20 Delaware Journal of Public Health - September 2021

individuals and families. In Delaware, the estimated Medicaid costs of caring for Delawareans with Alzheimer’s was $253 million1 in 2020. By 2025, these costs are projected to increase by more than 23%.1 The impact of Alzheimer’s and other dementias on the nation’s health care system is also becoming catastrophic. Staggeringly, more than one quarter of all hospitalizations of people with dementia are preventable. Ninety-five percent of people living with Alzheimer’s and other dementias have at least one other chronic condition—such as heart disease, diabetes, or stroke— and the very nature of having Alzheimer’s complicates the management of these other chronic conditions.1 This can result in poorer health outcomes and increase health care costs—both for the individual and the health care system.

In addition to the individual living with the disease, Alzheimer’s impacts a network of others who provide care and support. In 2020 alone, there were an estimated 46,000 Delaware caregivers who provided 67,000,000 total hours of unpaid care valued at $1,141,000,000. Nationwide last year, more than 11 million Americans provided over 18 billion hours of unpaid care for people living with Alzheimer’s. This results in an additional $10 billion in increased health care costs due to the burden of caregiving.1 But the costs of Alzheimer’s and other dementias are more than financial. This is why the Alzheimer’s Association unrelentingly advocates for the rights of the Alzheimer’s and dementia community, as well as critical research funding. Enhancing care and support for all those impacted by the disease today will change the trajectory of this disease for future generations. In order to truly make a real impact—each and every day—in the lives of those living with Alzheimer’s and their caregivers, it is critical that grassroots advocacy and change take place at the state and local level—here in Delaware. State and local health agencies and community partners are key players in this arena. doi: 10.32481/djph.2021.09.005

PUBLIC HEALTH AND THE FIGHT AGAINST ALZHEIMER’S Public health works to improve the health and well-being of an entire population—at all stages of life. We know that changes in the brain associated with Alzheimer’s begin years, even decades, before symptoms appear. Certain risk factors—such as smoking, physical inactivity, and heart disease—may contribute to Alzheimer’s dementia, but are modifiable. That is why a life-course approach to Alzheimer’s and other dementias is imperative, and why public health has numerous opportunities to intervene across the lifespan. Such public health opportunities include: • Risk Reduction: In the public health realm, an essential service is preventing disease, disability, and premature death among populations. At any stage of life, public health can reduce the risk of cognitive decline by promoting cognitive health and healthy behaviors—such as quitting smoking, protecting the head from brain injuries, being physically active, and eating a nutritious diet.

• Early Detection: Public health can promote early detection and diagnosis by ensuring that the general public understand the early warning signs of cognitive decline and that health care providers—of all specialties—are informed, educated, and stay upto-date with the latest cognitive health science.

• Safety and Quality of Care: For people living with dementia, public health can enhance the quality of care through provider education, and can educate caregivers about available services and supports in the community.

Advocacy organizations like the Alzheimer’s Association and Alzheimer’s Impact Movement (AIM), in coordination with volunteer advocates, play a critical role in efforts to influence Alzheimer’s and dementia policy at the federal and state level.

Through advocacy, these organizations help bring attention to and encourage policymakers to take action. In order for Delaware to be a more dementia capable state, Delaware public health officials must work to educate health care providers and the public about the importance of early detection and diagnosis, promote cognitive health and risk reduction across all ages, and improve access to and awareness of resources.

To identify specific ways to take action, officials should look to the Healthy Brain Initiative (HBI), a public-private initiative that aims to advance cognitive health as a central component of public health practice.2 The HBI State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map, or the HBI Road Map, offers 25 actions that public health agencies, organizations, and partners can take to address dementia using a population health approach.3 The HBI Road Map supports core functions of public health and is aligned to objectives of Healthy People 2030 and the Essential Public Health Services.4 The following demonstrate how Delaware can shape its own response to Alzheimer’s and dementia, and how advocacy organizations can incorporate public health action into their policy goals and advocacy agenda:

• Educate and Empower Communities: Seven actions of the HBI Road Map have this specific aim.

This includes calling on public health agencies to educate the general public about cognitive health and dementia, changes in cognition that they should discuss with a health professional, and the benefits of obtaining an early diagnosis.

• Develop Policies and Mobilize Partnerships: Creating plans, programming, and initiatives at the policy or systems level related to cognitive decline, Alzheimer’s, and caregiving can expand reach and result in longer-lasting impacts as compared to individual interventions. Six HBI Road Map actions are focused on developing policies and mobilizing partnerships. For example, public health agencies could partner with community-based and private organizations to establish policies that promote supportive communities and workplaces for dementia caregivers. Population-wide policies that support and maintain the health, well-being, and productivity of caregivers could be developed through convening key partners and caregivers to use data and evidence to recognize issues and gaps, and create solutions to address them.

• Assure a Competent Workforce: Both public health professionals and the health care workforce must know how to accurately, appropriately, and comprehensively assess cognitive impairment while applying principles of person-centered care. Seven actions of the HBI Road Map aim to help the public health community ensure a competent workforce, including educating public health professionals about the best available evidence on dementia and caregiving; the role of public health in addressing cognitive issues; and sources of information, tools, and assistance to support action.

• Monitor and Evaluate: Data about the prevalence, scope, and burden of Alzheimer’s, dementia, cognitive issues, and caregiving are used to shape priorities, allocate resources, identify gaps, and address disparities. Healthy People 20304 tracks awareness of dementia, hospitalizations in older adults with dementia, and older adults with subjective cognitive decline who have discussed symptoms with a health care provider. The HBI Road Map includes five actions aimed at improving monitoring and evaluation to ensure the greatest possible impact and change.

One such action calls on public health agencies and partners to use data to inform the program and policy responses to cognitive health, impairment, and caregiving. To assist public health agencies on this front, the Behavioral Risk Factor Surveillance System (BRFSS) offers two modules—the Cognitive Decline Module and the Caregiver Module—that collect population-based data on cognitive decline and caregiving issues. In fact, the Cognitive Decline Module serves as the data source for Healthy People 2030 Objective DIA-03, which aims to increase the proportion of adults experiencing subjective cognitive 21

decline who discuss their symptoms with a health care provider. The Alzheimer’s Association and the Alzheimer’s Disease and Healthy Aging Program at the Centers for Disease Control and Prevention (CDC) both produce national, state-specific, and populationspecific infographics and facts sheets with this data for use by public health agencies and partners.

Additionally, the Alzheimer’s Disease and Healthy Aging Data Portal provides easy access to nationaland state-level data on a range of key indicators of health and well-being for older adults, including cognitive health and caregiving.5

MUCH HAS BEEN ACHIEVED, MORE WORK REMAINS Through public policy, the State of Delaware has the opportunity to reach the masses of people impacted by dementia today, and change the trajectory of this disease for future generations. Through advocacy, Alzheimer’s can become a true national and state priority, and remain front of mind for policymakers. Recent public policy successes will contribute to state and federal efforts to address dementia as a public health issue, using public health tools and approaches. These are just examples, to illustrate the foundation that has been laid and the ongoing need for more action: • The Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (PL 115-406), enacted into federal law in 2018, creates an Alzheimer’s public health infrastructure across the country and increases implementation of the HBI Road Map by state, local, and tribal public health agencies.

This legislature provides for the establishment of Alzheimer’s centers of excellence, cooperative agreements to public health departments to implement the HBI Road Map, and expanded public health data collection. The awarded public health departments are operationalizing the HBI Road Map, implementing actions to reach the most people, for the most impact.

• In 2010, the Alzheimer’s Association and AIM, worked with Congress to develop the National Alzheimer’s Project Act (NAPA). Signed into law in 2011, NAPA led to the creation of a national strategic plan to address the rapidly escalating Alzheimer’s crisis and fundamentally changed the way the nation addresses Alzheimer’s and all other dementia.6 • The bipartisan Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act (S.3703/H.R. 6813), legislation championed by the Alzheimer’s Association and the AIM, was signed into law in 2020. This new law requires the Department of Justice (DOJ) to develop materials designed to assist law enforcement officers, prosecutors, judges, medical personnel, victims’ services personnel and others who encounter and support individuals living with Alzheimer’s and other dementia.

• Also signed into law in 2020, the Improving HOPE for Alzheimer’s Act (S. 880/H.R. 1873), requires the Centers for Medicare & Medicaid Services (CMS) 22 Delaware Journal of Public Health - September 2021

to conduct education and outreach about care planning services available for individuals living with Alzheimer’s or another dementia to care providers.

The law also requires a report to Congress on provider outreach and utilization rates, including information on any barriers Medicare beneficiaries face in accessing these services and recommendations to address those barriers.

• Signed into law in 2018, the RAISE Family Caregivers Act addresses the needs of our nation’s family caregivers through the development and implementation of a coordinated national strategy.

• Understanding the devastating toll Alzheimer’s takes on American families and the economy, increasing government investment in research has become a bipartisan priority in Congress, and federal appropriations for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH) has increased more than seven-fold since 2011. Annual federal investment in Alzheimer’s and dementia research is now at $3.1 billion.

These federal public policy successes specific to the Alzheimer’s and dementia community will lead to direct impacts for Delawareans. In 2012, Delaware embarked on the development of its own comprehensive state plan, outlining strategic goals and objectives toward becoming a more dementia capable state.

The Delaware State Plan to Address Alzheimer’s Disease and Related Disorders was published in 2013 following an inclusive and transparent process involving key stakeholders and the public. The plan outlines actions to: increase awareness of and understanding about Alzheimer’s disease; bring focused attention to the development of long-term care services for persons with Alzheimer’s disease; strengthen support for caregivers; improve the capacity of Delaware’s workforce to respond to the needs of persons with Alzheimer’s disease; and increase Delaware’s capacity for Alzheimer’s disease-related research and data collection. These specific areas all align with the core components of utilizing a public health approach.

Delaware is taking steps towards becoming a more dementia capable state and in addressing Alzheimer’s from a public health lens. This includes a variety of programs to support caregivers, an online Alzheimer’s Toolkit linked to from the Department of Health and Social Services (DHSS) webpage; the Division of Services for Aging and Adults with Physical Disabilities (DSAAPD) working in collaboration with the Alzheimer’s Association on a public awareness campaign to promote early detection and diagnosis, to be launched next year; and a number of bills pending in the legislature that will provide more support for caregivers, enhance home and community based services and address healthcare workforce development.

CONCLUSION The Alzheimer’s crisis requires bold action. There is a tremendous amount of dementia specific work to accomplish at both the federal and state levels. It is imperative to work across sectors to better understand the public health burden of cognitive impairment through surveillance; building a strong base of evidence for policies, communication, and programmatic

interventions for promoting cognitive health and addressing cognitive impairment and caregiving; and translating that foundation into effective public health practices throughout Delaware and across the country. Educating elected officials on the impact of Alzheimer’s and other dementias is essential to increasing public awareness and concern. It is imperative that policymakers, advocacy organizations, healthcare systems, community-based organizations and providers, and many, many others work collaboratively to ensure the issues facing the Alzheimer’s and dementia community remain at the forefront. It is through this collaboration and the collective power of those across Delaware, that real, lasting change can occur—improving the lives of those with Alzheimer’s and their caregivers and improving the systems that are in place to serve these communities.

The federal government must continue its strong commitment to funding Alzheimer’s and dementia research at the National Institutes of Health (NIH), as well as fully funding the implementation of the BOLD Infrastructure for Alzheimer’s Act at the Centers for Disease Control and Prevention (CDC) each year. Funding for NIH research will help lead to new treatments, prevention and ultimately a cure; and BOLD funding will enable CDC to expand the number of state, local and tribal public health departments that receive funding for Alzheimer’s public health action.

At the state level, Delaware policymakers and public health officials must also take action. For example: addressing the risk factors for dementia among vulnerable populations; advancing early detection and diagnosis of mild cognitive impairment and dementia; improving safety and quality of care for people living with dementia; and providing better support for caregivers.

With so many Delawareans impacted by this public health crisis, the time to act is now. Our state and federal legislators need to understand the scope and the scale of the Alzheimer’s crisis—it is key to moving impactful policy.

REFERENCES 1. Alzheimer’s Association. (2021). 2021 Alzheimer’s Disease Facts and Figures. Retrieved from: https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf 2. Centers for Disease Control and Prevention. (2020, Jul 30).

Healthy Brain Initiative. Retrieved from: https://www.cdc.gov/aging/healthybrain/index.htm 3. Alzheimer’s Association. (2018). Healthy Brain Initiative: State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map. Healthy Brain Initiative. Retrieved from: https://www.alz.org/media/Documents/healthy-brain-initiativeroad-map-2018-2023.pdf 4. U.S. Department of Health and Human Services. (n.d.). Healthy People 2030. Retrieved from: https://health.gov/healthypeople 5. Centers for Disease Control and Prevention. (2019, Sep 9).

Alzheimer’s Disease and Healthy Aging Data Portal. Retrieved from: https://www.cdc.gov/aging/agingdata/index.html 6. U.S. Department of Health and Human Services. (2021, Apr 27).

National Alzheimer’s Project. Retrieved from: https://aspe.hhs.gov/national-alzheimers-project-act#NAPA

23

Expanding Alzheimer’s Research at the University of Delaware and Beyond: Proposed Delaware Center for Cognitive Aging Research (DECCAR) Christopher R. Martens, Ph.D. Department of Kinesiology & Applied Physiology, College of Health Sciences, University of Delaware Matthew L. Cohen, Ph.D. Department of Communication Sciences & Disorders, College of Health Sciences, University of Delaware Alyssa M. Lanzi, Ph.D. Department of Communication Sciences & Disorders, College of Health Sciences, University of Delaware Curtis L. Johnson, Ph.D. Department of Biomechanical Engineering, College of Engineering, University of Delaware

Alzheimer’s disease (AD) is the leading cause of dementia in older adults and is among the fastest growing causes of morbidity and mortality in the United States.1 The growing problem of AD and related dementias (ADRD) is likely to disproportionately impact the State of Delaware, which has one of the largest older adult populations in the United States due to its low cost of living and desirable retirement locations. Approximately 19,000 older adults have been formally diagnosed with AD in Delaware and this number is expected to rise to 23,000 by 2025.2 These cases affect approximately 55 thousand caregivers who provide 63 million hours of unpaid care worth $822 million.2 To address this issue, the Delaware Valley chapter of the Alzheimer’s Association and the State’s Division of Services for Aging and Adults with Physical Disabilities (DSAAPD) formed a joint task force in 2012 and published the “Delaware State Plan to Address Alzheimer’s Disease and Related Disorders.” Among other things, this plan resulted in an online Alzheimer’s Toolkit for patients, families, and health professionals (https://dhss.delaware. gov/dhss/dsaapd/alzheimers_toolkit.html). In line with other national and international AD initiatives,3 it also included a call to increase Delaware’s capacity for AD-related research and increase training and professional development in ADRD to healthcare workers. In this article, we will provide an update on the current state of ADRD research at the University of Delaware (UD) and propose how a strategic investment in key infrastructure for cognitive aging research would make UD and partnering institutions well-positioned to contribute to the State’s effort to address the growing problem of ADRD.

FOCUSING ON PREVENTION Because there are currently no curative or well-established disease-modifying drugs for AD, there is significant research interest in disease prevention and early intervention to preserve or slow the decline3 in cognitive function. This is a worthwhile enterprise given that an international body of experts recently asserted that up to 40% of ADRD cases could be significantly delayed or prevented by addressing twelve modifiable risk factors.

In this pursuit, even small effects are highly significant. It has been estimated that delaying the transition to dementia by even just a single year could reduce the number of people with dementia by 9.2 million people globally,4 not to mention the profound benefit this would have for the individual, their family, and society.

24 Delaware Journal of Public Health - September 2021

As described elsewhere in this issue, there have been encouraging findings for behavioral preventive interventions to improve brain health. For example, the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) study demonstrated that a 2-year intervention consisting of nutritional guidance, exercise, cognitive rehabilitation, and intensive monitoring and management of metabolic and vascular risk factors (e.g., diabetes, hypertension, hyperlipidemia) improved cognitive test scores more than a control group consisting of health education, counseling, and monitoring.5 This finding has inspired the creation of a “Worldwide FINGERS Network” that includes clinical trials in 25 countries to adapt the behavioral intervention framework for various cultural settings.6 Similar innovative work has been growing at UD over the past several years in the domains of prevention, early detection, and early intervention for ADRD (Figure 1). Our interdisciplinary team of investigators represents the fields of psychology, speechlanguage pathology, physiology, and biomedical engineering.

Our current portfolio includes a clinical trial for improving memory and brain blood flow using a novel form of vitamin B3 (NCT03482167; PI: Martens), a 12-week aerobic exercise intervention for improving memory and brain tissue structure and integrity (NCT03855475; PI Johnson), and a third trial investigating a seven-week compensatory cognitive treatment set to begin in early 2022 (NCT04820335; PI: Lanzi). Furthermore, researchers from our group have a fourth trial preparing to start that examines the feasibility and acceptability of a telecare-based cognitive assessment and brain wellness program (PI: Cohen).

Below is a brief description of these trials and readers are directed to clinicaltrials.gov for current information regarding the enrollment status and primary outcomes of these projects.

CARDIOMETABLIC RISK REDUCTION As noted by the FINGER trial, many of the underlying risk factors for ADRD are similar to cardiometabolic diseases including midlife hypertension, elevated blood lipids, and reduced vascular function.7–9 For example, there is mounting evidence supporting the role of blood pressure management as a key to preventing the development of mild cognitive impairment (MCI), the earliest symptomatic stage in the development of AD. In this regard, a recent ancillary study to the Systolic Blood Pressure Intervention Trial called SPRINT-MIND found that intensive doi: 10.32481/djph.2021.09.006

Figure 1. Overview of ongoing ADRD research at UD including behavioral, and pharmacological intervention strategies for improving cognitive function and novel approaches for the screening of older adults with MCI.

pharmacological treatment of systolic blood pressure to below 120 mmHg reduced the incidence of MCI over an intervention period of about three years.10 Elevated blood pressure and other cardiometabolic risk factors are exacerbated by negative lifestyle behaviors including the consumption of an energy-dense Western style diet. As such, a major area of emphasis for our group at UD has been studying non-pharmacological strategies, including dietary and “nutraceutical” approaches to improve brain health in older adults with MCI by targeting elevated blood pressure and other cardiometabolic risk factors. To this end, we are currently exploring the potential efficacy of a novel form of vitamin B3 called nicotinamide riboside (NR) for improving memory in older adults with MCI. Our previous work with this compound suggests that it may lower systolic blood pressure and reduce arterial stiffness in otherwise healthy middle-aged and older adults.11 NR works by raising blood levels of nicotinamide adenine

dinucleotide (NAD+), a ubiquitous molecule that is involved in processes ranging from cellular energy production to DNA damage repair. Aside from our primary vascular end points, there is also strong evidence from animal studies suggesting that NR supplementation may improve cognitive function through direct neuroprotective benefits including reduced neuroinflammation, accelerated brain amyloid clearance, increased neurogenesis, and improved brain energy metabolism.12–14 To test this, we are conducting a 12-week, randomized, double-blind, placebo controlled clinical trial in older adults with amnestic MCI to determine if NR supplementation improves memory and markers of cardiovascular function and brain health including blood pressure, arterial stiffness, and cerebral blood flow. Our study is funded by a grant from the National Institute on Aging and is actively enrolling participants with a targeted completion date of spring 2023.

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AEROBIC EXERCISE AND BRAIN INTEGRITY Exercise training interventions are among the most successful in improving cognitive function in older adults, with studies consistently reporting positive relationships with fitness and changes with training despite differences in intervention type and length.15–17 Rodent studies have identified that exercise training results in increased neuroplasticity, particularly through enhanced neurogenesis in the hippocampus,18 which is a neural structure that strongly supports memory process, and improvement in hippocampal size and memory performance is one of the most salient effects of exercise in humans.19 Physical activity and exercise training have also shown promise for rehabilitating cognitive function and brain health in persons with MCI,20 though with conflicting evidence on their effectiveness.21 Part of this uncertainty stems from a general lack of large, comprehensive, Phase III clinical trials, though examples of these are underway including the Investigating Gains in Neurocognition in an Intervention Trial of Exercise (IGNITE) trial.22 However, understanding the links between exercise, brain health, and cognitive function are impacted by the lack of methods for sensitively evaluating neural tissue integrity.

At UD we seek to overcome this limitation through the use of a novel imaging technique called magnetic resonance elastography (MRE) that measures the mechanical properties of neural tissue.23,24 These mechanical properties, such as stiffness and viscosity, can noninvasively inform us about the underlying tissue microstructure and health, which in turn are affected by aging and neurodegenerative disorders including ADRD.25 Notably, our group has found that these mechanical properties are strongly related to memory performance and cognitive function,26,27 more so than other traditional neuroimaging methods, which suggests they may be valuable in assessing the response of the brain to exercise. We have previously shown that hippocampal viscosity mediates the relationship between fitness and memory in young adults,28 and in a pilot study of exercise training in adults with multiple sclerosis showed improvement in hippocampal properties and concomitant improvements in memory function.29 Based on these data, we are studying exercise in older adults through the highly sensitive measures of brain integrity from MRE. To that end, we are conducting a 12-week randomized controlled trial in older adults with amnestic MCI to determine how aerobic exercise affects the brain and cognition, with primary outcomes being the mechanical properties of the hippocampus and a range of memory tasks. Our study is funded by a grant from the National Institute on Aging and is actively enrolling participants with a targeted completion date of spring 2023.

COGNITIVE REHABILITATION Another area of behavioral interventional research at UD is cognitive rehabilitation. Broadly speaking, cognitive rehabilitation approaches can be categorized as either restorative or compensatory30 in philosophy. The goal of restorative cognitive rehabilitation is to “fix” impaired cognitive substrates (e.g., memory) through rote repetition of tasks. Although previous research suggests restorative treatment improves performance on trained tasks,31–33 there is less evidence for generalization to everyday tasks.34,35 Thus, there is growing interest in the field to examine compensatory cognitive treatments that teach strategies and tools (e.g., calendar systems) to help participants compensate 26 Delaware Journal of Public Health - September 2021

for their cognitive weakness during everyday tasks.36 The focus of compensatory cognitive rehabilitation is not to repair weak cognitive skills but rather to compensate for them, thus maintaining functional independence and delaying the transition to dementia.

The Structured External Memory Aid Treatment (SEMAT) is a novel compensatory treatment for adults with MCI designed by researchers at UD. The SEMAT improves upon previous compensatory treatments by using a scalable and person-centered approach to teaching various strategies and aids like use of calendar and note taking systems. The treatment uses a structured three-step approach37 to teach these strategies, and unlike in previous approaches, the interventionist and participant work together to design the strategies and tools to meet the individual’s everyday needs and unique preferences. Our preliminary data suggests that the SEMAT is feasible and that adults with MCI can learn how to use the strategies and improve performance on everyday tasks for at least 3 months,1–3 however, more research is needed with larger-scale clinical trials to determine the efficacy and effectiveness of the treatment. To that end, our research group recently received a grant from the National Institute on Aging to conduct a pilot randomized controlled trial to evaluate the efficacy of the seven-week SEMAT for improving functional performance on everyday tasks. We expect to begin enrolling participants in this trial in early 2022. Successful completion of this research will result in data used to inform a future randomized controlled trial investigating the efficacyeffectiveness of the SEMAT in community settings.

PREVENTION AND EARLY DETECTION Finally, UD researchers are actively involved in research on the prevention and early detection of cognitive impairment using novel telecare-based approaches. A program called Memory Ambassadors was implemented in 2017 by clinicians within the Swank Center for Memory Care and Geriatric Consultation at ChristianaCare and grew to include collaborators from our team at UD,38 as described elsewhere in this issue. This organization visits senior centers and senior living communities to provide brain wellness education and free screenings of nutrition, balance, hearing, and memory to older adults throughout the State of Delaware. Screening results, and recommended follow up steps are shared with attendees, as well as with their primary care clinician if desired.

While the Memory Ambassadors program was successful and growing in scope, the COVID-19 pandemic necessitated the adaptation of the program for online implementation. In fact, this proved to be beneficial because it permitted more frequent and efficient participation of faculty, clinicians, and trainees, as well as the ability to reach older adults who could not or would not travel to an in-person event. There were barriers to this form of implementation as well, including participant access to and comfort with technology and the effectiveness of adapted screening and intervention approaches, which need to be addressed to maximize the efficacy and reach of such a program.

To this end, researchers from UD and ChristianaCare are preparing to begin a study to develop and optimize the feasibility and acceptability of telecare-based brain wellness education,

feedback about modifiable risk factors, screenings, and brief intervention. One innovative aspect of this project is its utilization of speech-language pathologists (SLPs), who constitute a large and underutilized workforce in brain wellness education, screening, and intervention.38 This project is anticipated to begin in early 2022.

MEMORY SCREENINGS All of the above-mentioned clinical trials are focused on risk factor reduction and strategies for the prevention of dementia in older adults with MCI, which likely represents the most opportune treatment window for delaying clinical dementia from AD. Because these studies share similar inclusion criteria and because the recruitment of older adults with MCI is inherently challenging, we have established a collaborative protocol to coordinate the recruitment, memory screening, and enrollment of older adults with MCI into our respective trials. Our process includes a robust advertisement campaign targeting communitydwelling older adults with subjective cognitive complaints using digital and print marketing strategies, a brief telephone-based cognitive screening, and then a longer cognitive assessment battery that includes an interview with the participant and an informant and multiple tests of memory performance. In the end, participants in the registry meet multiple operational definitions of MCI, including the joint definition of the National Institute on Aging and Alzheimer’s Association,39 Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and the so-called “Petersen criteria.”40 In just two years, we have screened over 300 older adults within northern Delaware, Maryland, and parts of southeastern Pennsylvania and we have successfully identified approximately 50 individuals with amnestic MCI. To learn more about our memory screening process and for information on how to participate in one of our research studies visit sites.udel.edu/ memoryresearch.

GROWING ADRD RESEARCH AT UD Establishing our memory screening protocol and running our clinical trials has made our collaborative group a visible presence in the Delaware research community and has attracted the interest of other UD researchers wanting to study ADRD. In this regard, we recently helped two UD faculty members receive supplemental funding to add an ADRD component to their existing grants funded by the NIH; however, we do not yet have the personnel or resources necessary to recruit and enroll enough participants to meet all research needs. In addition to the immediate public health need for ADRD research, the time has never been better to conduct this research from a financial standpoint. In 2015, Congress approved a bypass budget allocating additional funding to NIH for ADRD research and this federal allocation has grown annually with a current total contribution of over $3 billion. The payline for ADRD research has also increased dramatically and is currently nearing the 30th percentile, making success rates for ADRD proposals almost three times higher than other areas of biomedical research. In contrast, less than 2% of UD’s roughly $50 million annual NIH-funded research portfolio is devoted to ADRD, emphasizing a critical need to invest in ADRD research infrastructure in order for UD to secure additional external funding and become a leader in cognitive aging research.

INVESTING IN NEW INFRASTRUCTURE To develop the infrastructure needed to support our growing cadre of cognitive aging researchers at UD, and to expand our ability to interact with other state and local parties invested in the fight against ADRD, we have recently proposed the establishment of a new “Delaware Center for Cognitive Aging Research” (DECCAR). Our goal is to advance research, education, and clinical training in ADRD by supporting UD researchers in conducting clinical and translational research that improves the timeliness and accuracy of diagnosis, identifies new and effective interventions, and improves person-centered clinical care and quality of life for older adults and their families. Although our focus is on ADRD, we are committed to supporting research that improves brain health for all older adults across the continuum from typical aging to dementia.

To provide structured research support for new ADRD projects, we plan to develop the following “core” services that will work collaboratively to meet the needs of individual investigators (Figure 2). First, we plan to establish a new MCI Patient Registry and Data Repository that will enable longitudinal tracking of participants’ brain health over time. Patients entering the registry will complete our comprehensive screening assessment including extensive cognitive phenotyping for determination of MCI status. We also hope to offer assessment of genetic and blood-based biomarkers of ADRD risk. The intention of creating this registry is for UD investigators to be able to recruit eligible and interested participants for clinical trials or to perform retrospective analyses using previously collected data. The registry will be supported by a Cognitive Assessment Core, which will also provide consultation and full-service testing for UD researchers related to selecting, obtaining, administering, scoring, and interpreting cognitive tests in the context of aging and ADRD on a fee-for-service basis. A major goal of the increased NIH funding for ADRD research is to attract new investigators to the field.41 Thus, to draw in new users to our services and help them become competitive for extramural funding for ADRD research, we will also offer Study Design Consulting services, including assistance with study timepoints and statistical analyses, selection of cognitive assessments, and specific biomarkers or neuroimaging protocols to include in prospective grant applications, with the goal of increasing success for extramural grant applications related to ADRD. Eventually, we hope to also be able to award competitive pilot grants each year to support research expenses and registry fees for investigators to establish new ADRD research programs by generating the preliminary data needed to secure extramural funding for projects related to ADRD. Finally, we envision establishing a Clinical Training and Community Engagement Core that will oversee the education and training of students and clinicians to enhance their research and clinical skills in ADRD and create outreach programs that engage community members in the activities of the center. Through our memory screening protocol, we have already established a comprehensive training program in cognitive testing and other advanced geriatric assessment practices that helps SLP graduate students at UD obtain essential clinical hours and gain important skills that are currently lacking among many healthcare workers in the United States.

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Figure 2. Proposed vision for a new Delaware Center for Cognitive Aging Research (DECCAR) at the UD which would serve as a central resource providing infrastructure for research and training in ADRD.

Our ultimate vision in establishing a new research center is to address several gaps in the existing framework for cognitive aging research and training at UD, stimulate new NIH-funded research, and grow the number of ADRD researchers at UD by engaging existing faculty and attracting new talent to the University. We also envision the proposed center as a platform for facilitating cross-institutional collaboration with other research and clinical institutions throughout the State of Delaware. Such research has the potential to lead to much-needed intervention strategies for slowing or even stopping the progression of MCI to clinical dementia, impacting the lives of Delawareans and their families.

Leveraging our existing strengths within UD’s College of Health Sciences and the ChristianaCare Swank Center for Memory Care and Geriatric Consultation, our focus on interventions for the prevention of cognitive decline through healthy lifestyle behaviors is unique relative to major Mid-Atlantic medical centers, which have historically focused more on pharmaceutical strategies for laterstage dementia, and positions UD to become a leader in healthy cognitive aging. Those interested in learning more about our efforts and engaging with ongoing research at UD are encouraged to visit our website at https://sites.udel.edu/memory-research/.

CONCLUSIONS AND FUTURE DIRECTIONS In summary, clinical ADRD research is expanding at UD and the broader research community in DE. In just the past several years, we have grown from a few like-minded investigators interested in cognitive aging research, to a growing body of faculty, students, 28 Delaware Journal of Public Health - September 2021

and staff supporting the recruitment and enrollment needs of multiple clinical trials while training the next generation of researchers and clinicians. This work has laid the foundation for what we hope will become a new Delaware Center for Cognitive Aging Research and provide resources to others at UD looking to join in our efforts to prevent ADRD. Through this new venture, we hope to also expand our existing partnership with the Swank Center for Memory Care and Geriatric Consultation at ChristianaCare and build new relationships with other providers, caregivers, patient advocacy groups, and policy-makers within the State of Delaware. Such partnerships would enable bi-directional access for patients to cutting-edge research and high-quality clinical care. Over the next several years, we aim to expand the number of clinical investigators at UD focused on ADRD research and increase our competitiveness for extramural funding from NIH for research grants and institutional training programs, attracting high quality students, postdoctoral fellows, and faculty to our institution. Our long-term vision is to serve as a central hub for research and innovation in ADRD research within the state of Delaware and a model for peer institutions looking to help in the early detection and prevention of ADRD.

ACKNOWLEDGMENTS The research described in this article is supported by grants from the National Institute on Aging of the National Institutes of Health: K01-AG054731, R01-AG058853, and K23-AG070185.

Correspondence: Christopher R. Martens, STAR Health Sciences Complex, cmartens@udel.edu

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An Innovative Non-Pharmacologic Treatment for Delusional Misidentification in Persons with Major Neurocognitive Disorder Anne E. Adams, Ph.D. Managing Director, Applied Research, SimpleC LLC Jennifer Rittereiser, M.P.H. Director, Swank Memory Ambassadors Program, Memory Care and Geriatrics, ChristianaCare Alisha Garcia, M.S., L.P.C., N.C.C. Psychotherapist, The Anxiety and Stress Management Institute; Former Director, Clinical Mental Health Services, SimpleC LLC Melany Sattler, M.S.W. Vice President, Clinical Services, SimpleC LLC James M. Ellison, M.D., M.P.H. Swank Foundation Endowed Chair, Memory and Geriatrics, ChristianaCare; Professor, Psychiatry and Human Behavior, Sidney Kimmel Medical College, Thomas Jefferson University; Editor-in-Chief, Journal of Geriatric Psychiatry and Neurology

ABSTRACT Misidentification delusions are false, fixed beliefs that assign an incorrect identity to a previously familiar or unfamiliar person or place. Such delusions are common in several neuropsychiatric disorders and place a particular burden on individuals with Major Neurocognitive Disorder and their caregivers. No standard pharmacologic or non-pharmacologic treatment approaches have been shown to be consistently effective in addressing this problem. We describe two caregiver-care recipient dyads in which an innovative nonpharmacologic, digital intervention reduced delusional misidentification, improved care recipient behavior, and decreased caregiver burden.

BACKGROUND Delusional Misidentification (DM) is among the most disruptive and recalcitrant behavioral symptoms encountered in the care of persons with Major Neurocognitive Disorders (MaND). More disruptive than simple loss of recognition, delusional beliefs in a caregiver-care recipient dyad can seriously exacerbate caregiver burden while undermining the effectiveness and safety of care.1 There is no specific diagnostic code for DM in the DSM-5, but clinically significant delusions in a person with dementia justify the label of MaND “with behavioral disturbance”.2 Several syndromes of DM occur in the context of MaND: • In Capgras syndrome, a familiar person is incorrectly identified as an imposter.

• In reduplicative paramnesia, a familiar person or place exists in multiple, different versions.

• In mirror self-misidentification, one’s reflection is experienced as a separate person.

• In Fregoli syndrome, a stranger is mistakenly identified as a disguised familiar person.

Prevalence estimates of DM vary widely, between 5% and 82%.3 The most common types are Capgras syndrome and reduplicative paramnesia. DM may be especially common in Dementia with Lewy Bodies, Vascular Dementia, and Alzheimer’s disease.2 When DM is present, affected individuals and their caregivers must manage, often unsuccessfully, the challenging consequences of a disrupted alliance. These can range from uncooperativeness and even aggressive resistance to inappropriate familiarity.1 When DM develops within a caregiving dyad, the care of an affected person becomes enormously more complicated.

32 Delaware Journal of Public Health - September 2021

The pathophysiology of DM syndromes may involve an interactive effect of lesions affecting the fusiform gyrus, which mediates facial recognition; the perirhinal cortex and right hemisphere, which mediate familiarity; and the frontal lobes, which test reality.4 Neurologically, DM appears like a “disconnection syndrome” in which the links between recognition, emotional response, and reality testing go awry.

No medication or non-pharmacologic intervention has been shown to be effective in consistently reducing DM. However, evidence supports the effectiveness of non-pharmacologic approaches such as reminiscence therapy, music therapy, validation, and simulated presence in mitigating the severity of various non-cognitive symptoms associated with dementia.5 Digital interventions are emerging as an effective means for delivering care. Research has shown successful reduction of non-cognitive symptoms in people with MaND by means of personalized digital interventions delivered in a formal care setting.6 For caregiver-recipient dyads living at home, too, personalized digital interventions have proven successful in reducing non-cognitive symptoms of MaND, facilitating positive and meaningful engagement, and providing overall caregiver support reduced burden.7–9 We report here the successful treatment of DM in two caregiverrecipient dyads using a digital tool that was modified to achieve two objectives important in the non-pharmacologic care of people with MaND and DM: (1) Induce a positive affective state through reminiscence therapy and curated, personalized music; and (2) reinforce recognition memory through spaced repetition and consistency of visual cues linked with positive reminiscence, as is used in cognitive rehabilitation approaches, thereby improving feelings of familiarity and enhancing a positive emotional response towards the caregiver. doi: 10.32481/djph.2021.09.007

CASE PRESENTATIONS Case Vignette – Dyad #1

Mr. X, a 78-year-old, married, non-Hispanic White male, was residing at home with his wife and grandson at the time of referral to a Memory Disorders Clinic (MDC) for evaluation of an episode of disorientation. His wife described his year-long history of cognitive and behavioral symptoms including memory impairment, disorientation to date and location, restlessness and pacing, and suspected hallucinations. His activities of daily living were partially dependent, and he needed assistance with his instrumental activities of daily living. His Mini-Mental State Examination10 score was 20/30 at initial cognitive assessment.

Mr. X’s mood was euthymic. His medical history was notable for vascular risk factors: previous myocardial infarction, adult-onset diabetes mellitus, hyperlipidemia, and hypertension. He denied alcohol use. Routine laboratory study results were within normal ranges. Brain MRI showed mild to moderate parenchymal volume loss with significant patchy areas of T2/FLAIR hyperintensity in the periventricular, subcortical, and deep white matter. His presentation was consistent with a diagnosis of vascular major neurocognitive disorder. During the year after his initial referral, Mr. X’s behavioral symptoms became very disruptive to continued home care. His sundowning and agitation required intervention from law enforcement personnel. Behavioral interventions, supplemented with quetiapine 50 mg at bedtime, failed to halt the increasingly frequent delusional belief that his wife was an imposter. His DM lasted for hours at a time. His behavior, when delusional, made it necessary for his wife to leave the home repeatedly. Multiple additional medication trials including escitalopram up to 10 mg/d, donepezil up to 23 mg/d, buspirone up to 5 mg twice daily, risperidone up to 0.25 mg three times daily, melatonin up to 10 mg at bedtime and cannabidiol oil failed to affect his delusion or improve his behavior.

Case Vignette – Dyad #2

Mrs. Y, an 89-year-old, married, non-Hispanic White female, was residing in an independent living community apartment with her husband at the time of her referral to the MDC. She expressed a fear that she was losing her memory. Her husband reported that her memory decline had become apparent two years earlier, after an episode of complete heart block which included a 14-hour run of bradycardia with a pulse of 25 beats per minute, culminating in insertion of a pacemaker. Mr. Y reported that his wife’s cognitive symptoms included forgetting names, losing her train of thought, and trouble with “getting her words out.” She experienced anxiety, crying spells, and had a history of depressive episodes. She reported “seeing” her deceased parents.

Her confusion regularly increased in the evenings. Her activities of daily living remained independent. Her instrumental activities were partially intact, though bill-paying required assistance. She routinely participated in a sitting exercise class. She scored 16/30 on the Montreal Cognitive Assessment (MoCA)11 and 10/15 on the Geriatric Depression Scale.12 Mrs. Y’s medical history included multiple falls, a right parietal subdural hematoma requiring craniotomy, treated hypothyroidism, complete heart block treated with a pacemaker, diminished auditory acuity, and nocturia which interrupted her sleep 4 to 5 times nightly. Her head CT scan showed evidence of periventricular small vessel disease, a small lacunar infarct in the left basis pontis, and a small chronic left cerebellar infarct. In her delusional thinking, Mrs.

Y split her husband into two separate men with the same name, one trustworthy and the other a “menace.” Her psychiatrist had prescribed quetiapine 12.5 mg twice daily and mirtazapine 7.5 mg at bedtime for her delusions, with limited benefit.

TREATMENT PROCEDURE Mr. X, Mrs. Y, and their caregiving spouses each gave written informed consent to participate in an IRB-approved clinical trial testing a non-pharmacological intervention designed for the treatment of DM. The intervention began with a two-week assessment of baseline functioning and behavior. During this time, images of each person with MaND and their spouse were collected with the goal of obtaining at least 50 photographs. These images were assessed for familiarity (five point scale), valence of the emotional response (positive, neutral, negative), and recognition using a facial recognition assessment developed for this study. Based on the results of the initial assessment, a total of 35 images were selected for each dyad’s intervention program. A personalized digital intervention using the selected images and individualized music was created on the SimpleC Platform for each person with MaND, and accessed via the Companion application on an iPad tablet.

During the study, three active phases alternated with three control phases. Each phase lasted for two weeks except for the final control phase, which lasted four weeks. During the study’s active phases, the dyad engaged with their personalized intervention. During the control phases, the dyad engaged with neutral images such as landscapes. The intervention consisted of two daily 15-minute sessions during which the dyad viewed and engaged with the digital therapeutic programs. The investigators conducted weekly check-ins throughout the study and one week after a final, four week control phase. Each dyad’s caregiving spouse kept a daily diary and symptom log throughout the trial.

Investigator-administered outcome measurements were obtained using the Neuropsychiatric Inventory (NPI),13 the Misidentification Delusion Questionnaire (MDQ),14 the Zarit Caregiver Burden Scale, (Zarit),15 the Quality of Life in Alzheimer’s Disease Scales for both person with MaND and their spouse (QoL-AD),16 as well as expectation & experience questionnaires developed for this study.

Facial recognition for all collected images was assessed three times as described above. The procedure also included intermediate assessments of some images, at the end of each active and control phase during the intervention to help engage deeper processing for better retention.17

OUTCOMES Dyad #1

Mr. X showed improvements in neuropsychiatric symptoms (NPI) and quality of life over the intervention period (Table 1).

Specific NPI improvements were noted for symptoms of delusion (drop from 9 to 1), hallucination (drop from 8 to 3), and agitation (drop from 6 to 2) through a reduction in frequency, severity, and stressfulness of the symptom.

The MDQ also improved as well. The change reflected improved home recognition. The MDQ did not capture wife recognition, but the diary did. At the end of the intervention, Mr. X agreed that the intervention had helped him to be more connected, that he will know others better, and others will know him better. He wanted to keep the intervention, saying “it is something very nice” and “good for you.” At the end of the one month final control phase - without the intervention - Mr. X did not mention these benefits.

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In the experience questionnaire, Mrs. X reported that the intervention helped her husband to recognize her more often, stating that he “became more affectionate” after using it. She liked the “time spent together reminiscing” with “nothing distracting our attention.” She reported that she was “thrilled that he was more passionate,” and that it “stimulated conversation.” Mrs. X reported more overall caregiver stress as measured by the Zarit and QoL-AD, but less stress related to the neuropsychiatric symptoms as measured by the NPI. The caregiver’s diary documented the decreasing frequency of DM over the course of the study.

Here are instances of non-recognition quoted from the diary to illustrate how DM manifested itself in the life of Mr. and Mrs. X. • Looking at pictures. Didn’t recognize me in several.

• Entering the mall, he told me “[Mrs. X] and I did this lots of times” – I just said “really.”

• Getting ready to go to a birthday party gathering. [Mr. X] asked, “Where is [Mrs. X?]” • Watching TV, jumped up (where’s [Mrs. X]), left the room, went upstairs. Came back, knew me and was fine.

She had been with our daughter.

• Where’s [Mrs. X]? I asked, “what does she look like?” He answered, “I don’t know what you’re talking about.”

• He asked, “Where’s [Mrs. X]”? I asked if she was young or old. He answered, “don’t know.” What does she look like – don’t know anything. That was it.

Dyad #2

Mrs. Y showed improvements in neuropsychiatric symptoms (NPI) and MDQ during the intervention period (Table 2). Mr. Y exhibited reduced caregiver stress related to neuropsychiatric symptoms (NPI) and stable caregiver burden as measured by Zarit and QoL-AD. Of particular interest is the improvement captured by the facial recognition assessment. At baseline, Mrs. Y rated 84% of the images as very familiar and responded negatively to 8% of the images and neutrally to 10% of them. At the end of the intervention period, ratings increased to 100% familiarity and 100% positive valence. Familiarity remained high at the end of the final control phase, with only a slight decrease in emotional valence.

In the experience questionnaire, the caregiver Mr. Y noted “improved closeness when using pictures and music,” and an overall more positive feeling. He stated that the intervention helped his wife recognize him more often and more quickly. These benefits were more prominent at the end of the intervention than the final one-month control phase without intervention. Mr. Y noted that the intervention enhanced their relationship and helped him enjoy life with his wife.

Table 1: Standard Measures for Dyad #1 Measure

Session 1 (Baseline)

Session 9 (End of intervention)

Session 10 (End of final control phase)

Max

NPI Total (10 items)

55

44

60

120

NPI Stress (10 items)

14

12

19

50

MDQ

2

0

1

11

Zarit

26

38

37

88

QoL-AD – CR

32

39

37

52

QoL-AD – CG

28

23

22

52

Session 1 (Baseline)

Session 9 (End of intervention)

Session 10 (End of final control phase)

Max

NPI Total (10 items)

22

16

14

120

NPI Stress (10 items)

12

6

10

50

MDQ

4

1

2

11

Zarit

19

20

23

88

QoL-AD – CR

34

24

39

52

QoL-AD – CG

33

33

30

52

Lower scores are better

Higher scores are better

Table 2: Standard Measures for Dyad #2 Measure Lower scores are better

Higher scores are better

34 Delaware Journal of Public Health - September 2021

Here are instances of non-recognition quoted from the diary to illustrate how DM manifested itself in the life of Mr. and Mrs. Y. • A very good day. Greeted each other with a kiss this morning. Daughter came over in the morning to help organize [Mrs. Y’s] closest. Very pleasant visit. Normal afternoon nap for [Mrs. Y], and then dinner with friends in dining room. Short episode of confusion this morning.

• [Mrs. Y] was in MI [misidentification] mode much of the day. I was seen as a good friend. She had an hour or so with mental confusion. I got frustrated trying to straighten her out and she got angry. We kissed and made up before bedtime.

• Typical MI questions: How long have you lived here?

Can I have a ride to church in the morning? I am a good friend all day, including kissing good night as she went to her room.

• [Mrs. Y] seemed to be in a non-MI mode this am.

Sometimes hard to tell as life goes on normally a lot of the time and I only discover later I was just a friend.

DISCUSSION The development of DM frequently interferes with care during the course of MaND. Borsje and colleagues report DM as one of the most common neuropsychiatric symptoms in communitydwelling persons with dementia.18 Misidentification of a caregiver sets the stage for disruptive and even dangerous consequences.

An adult approached by a presumed imposter is unlikely to cooperate with personal care such as bathing, toileting, or dressing. Confusion, modesty, fear, or anger can lead a person with dementia to reject care, argue, flee, or even attack. The relationship between DM and aggressive behavior in persons with major neurocognitive disorder has been well-described.1,19 No medication reliably improves recognition, and no behavioral intervention has previously been shown to improve or correct recognition of a spouse.

Overall, participation in the non-pharmacologic intervention described here was associated with improved recognition. MDQ scores were reduced for both care recipients. Some DM persisted for both care recipients. The MDQ’s apparent underestimation in Care recipient 1 reinforced our view that valid measurement of DM change is best captured by using multiple measures: MDQ, NPI, as well as daily diary to capture the extent and manifestations of DM in daily life provided cues to potential triggers. Care recipient 1 responded to the personalized nonpharmacological intervention. The twice-daily review of images was associated with specific and nonspecific benefits. Not only was recognition of his caregiving wife improved, but in addition he improved on symptoms of delusion, hallucination, and agitation in frequency and severity. Furthermore, his wife’s caregiving burden was reduced as measured by the NPI’s stress associated with symptoms. Care recipient 2 also responded well, as seen by the change in emotional response to facial recognition assessment.

We believe that this intervention succeeded in helping our two care dyads significantly by strengthening the relationship between memory and its associated affect. By repeatedly presenting images of familiar faces with music for positive reminiscence, the intervention enhances the connection between the faces and a positive emotional response. This may lead to less suspicion and

fewer negative emotions when interacting with the individuals.

Technological innovations such as the one studied may have a significant role in enhancing a sense of comfort and familiarity in persons with dementia.

Finally, this intervention introduces a pleasant interaction into the daily life of care recipient and caregiver, one which does not involve conflict or control struggles. With progression of cognitive impairment, increasing caregiver time is spent coaxing a care recipient through activities of daily living and this intervention incorporates the sharing of pleasant experiences and gentle encouragement. Further study of this intervention is in progress.

TAKE-HOME MESSAGE Many persons living with dementia and the families caring for them strive to continue home-based care for as long as that remains tolerable and safe. DM is an important barrier to continued care at home because it undermines the trust and comfort required for successful delivery of personal care and collaborative interactions with a caregiver. In the context of DM, the person with MaND’s effort to resist care, to flee or even to attack a caregiver becomes understandable and, from his or her standpoint, justifiable. Although response of DM to medications is often disappointing, the success of this simple, digital, nonpharmacologic intervention holds out hope for effectively managing the delusions that would otherwise shorten the duration of successful home-based care.

ACKNOWLEDGEMENTS The research described in this article was supported in part by the Rotary Club.

Correspondence: Anne Adams, SimpleC LLC, research@simplec.com

REFERENCES 1. Silva, J. A., Leong, G. B., Weinstock, R., & Ruiz-Sweeney, M. (2001, May). Delusional misidentification and aggression in Alzheimer’s disease. Journal of Forensic Sciences, 46(3), 581– 585. https://pubmed.ncbi.nlm.nih.gov/11372992 2. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders, 5th ed. Arlington, VA: American Psychiatric Association 3. Perini, G., Carlini, A., Pomati, S., Alberoni, M., Mariani, C., Nemni, R., & Farina, E. (2016, October-December).

Misidentification delusions: Prevalence in different types of dementia and validation of a structured questionnaire.

Alzheimer Disease and Associated Disorders, 30(4), 331–337. https://pubmed.ncbi.nlm.nih.gov/26859554 https://doi.org/10.1097/WAD.0000000000000141 4. Darby, R. R., Laganiere, S., Pascual-Leone, A., Prasad, S., & Fox, M. D. (2017, February). Finding the imposter: Brain connectivity of lesions causing delusional misidentifications.

Brain, 140(2), 497–507. https://pubmed.ncbi.nlm.nih.gov/28082298 https://doi.org/10.1093/brain/aww288 5. Douglas, S., James, I., & Ballard, C. (2004). Nonpharmacological interventions in dementia. Advances in Psychiatric Treatment, 10(3), 171–177. https://doi.org/10.1192/apt.10.3.171 35

7. Kerssens, C., Kumar, R., Adams, A. E., Knott, C. C., Matalenas, L., Sanford, J. A., & Rogers, W. A. (2015, February). Personalized technology to support older adults with and without cognitive impairment living at home. American Journal of Alzheimer’s Disease and Other Dementias, 30(1), 85–97. https://pubmed.ncbi.nlm.nih.gov/25614507 https://doi.org/10.1177/1533317514568338

13. Cummings, J. L. (1997, May). The Neuropsychiatric Inventory: Assessing psychopathology in dementia patients. Neurology, 48(5, Suppl 6), 10S–16S. https://pubmed.ncbi.nlm.nih.gov/9153155 https://doi.org/10.1212/WNL.48.5_Suppl_6.10S

8. Astell, A. J., Bouranis, N., Hoey, J., Lindauer, A., Mihailidis, A., Nugent, C., & Robillard, J. M., & the Technology and Dementia Professional Interest Area .... (2019). Technology and dementia: The future is now. Dementia and Geriatric Cognitive Disorders, 47(3), 131–139. https://pubmed.ncbi.nlm.nih.gov/31247624 https://doi.org/10.1159/000497800

15. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980, December). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20(6), 649–655. https://pubmed.ncbi.nlm.nih.gov/7203086 https://doi.org/10.1093/geront/20.6.649

9. Tyack, C., & Camic, P. M. (2017, August). Touchscreen interventions and the well-being of people with dementia and caregivers: A systematic review. International Psychogeriatrics, 29(8), 1261–1280. https://pubmed.ncbi.nlm.nih.gov/28446258 https://doi.org/10.1017/S1041610217000667 10. Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975, November). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3), 189–198. https://pubmed.ncbi.nlm.nih.gov/1202204 https://doi.org/10.1016/0022-3956(75)90026-6 11. Nasreddine, Z. S., Phillips, N. A., Bédirian, V., Charbonneau, S., Whitehead, V., Collin, I., . . . Chertkow, H. (2005, April). The Montreal Cognitive Assessment, MoCA: A brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society, 53(4), 695–699. https://pubmed.ncbi.nlm.nih.gov/15817019 https://doi.org/10.1111/j.1532-5415.2005.53221.x 12. Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., & Leirer, V. O. (1982). Development and validation of a geriatric depression screening scale: A preliminary report.

Journal of Psychiatric Research, 17(1), 37–49. https://pubmed.ncbi.nlm.nih.gov/7183759 https://doi.org/10.1016/0022-3956(82)90033-4

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14. Farina, E., & Pomati, S. (2016). Misidentification delusion questionnaire (MDQ).

16. Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging, 5(1), 21–32.

17. Roediger, H. L., III, & Karpicke, J. D. (2006, September). The power of testing memory: Basic research and implications for educational practice. Perspect Psychol Sci, 1(3), 181–210. https://pubmed.ncbi.nlm.nih.gov/26151629 https://doi.org/10.1111/j.1745-6916.2006.00012.x 18. Borsje, P., Wetzels, R. B., Lucassen, P. L., Pot, A. M., & Koopmans, R. T. (2015, March). The course of neuropsychiatric symptoms in community-dwelling patients with dementia: A systematic review. International Psychogeriatrics, 27(3), 385–405. https://pubmed.ncbi.nlm.nih.gov/25403309 https://doi.org/10.1017/S1041610214002282 19. Kaufman, K. R., Newman, N. B., & Dawood, A. (2014, August). Capgras delusion with violent behavior in Alzheimer dementia: Case analysis with literature review. Ann Clin Psychiatry, 26(3), 187–191. https://pubmed.ncbi.nlm.nih.gov/24812655

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Speak for Health is how APHA members stand up for public health interests.

APHA believes public health professionals deserve a stronger voice in public health advocacy.

Together, we can change the narrative and turn the tide. #SpeakForHealth APHA is the leading voice for public health in Washington. The policies we advance are based in science, research and member-led processes. Join us and Speak for Health — for today and future generations.

38 Delaware Journal of Public Health - September 2021

THE FACTS

DELAWARE

for

Health

AN INITIATIVE OF THE AMERICAN PUBLIC HEALTH ASSOCIATION

PUBLIC HEALTH FUNDING Strong investments in public health allow a state to carry out programs that improve health. Delaware receives $111 per person in funding from the Centers for Disease Control and Prevention (CDC) and the Health Resources Services Administration (HRSA), ranking the state 17th in the nation. The Prevention and Public Health Fund awarded Delaware $7.28 million in grants for community and clinical prevention efforts and improvements to public health infrastructure in the 2020 fiscal year.

ACCESS TO CARE 6.6 percent of people in Delaware do not have health insurance coverage compared to the national uninsured rate of 9.2 percent. The number of practicing health care providers is also an important measure of health care availability. Delaware has 287.5 active primary care providers per 100,000 people in comparison to the national rate of 241.9 practicing primary care providers per 100,000 people.

Notable Health Measures •

Housing problems Severe housing problems decreased 11% between 2007 - 2017 from 16.1% to 14.3% of occupied housing units.

•

High school graduation 86.9 percent of students graduate from high school in Delaware. This is the 21st highest rate in the nation. This is a notable measure as there is a strong connection between education and health. People with higher levels of education are more likely to adopt healthy behaviors.

•

Tobacco use 15.9 percent of the adult population smokes cigarettes, ranking Delaware 24th in the nation.

The Challenges Ahead •

Drug deaths In the past ten years, drug deaths increased exponentially from 8.1 drug deaths per 100,000 people in 2008 to 42.4 drug deaths per 100,000 people in 2020.

•

Violent crime 423 offenses per 100,000 people in Delaware, 36th in the nation. Violent crimes may cause injuries, disability and early death. Additionally, violent crimes may cause long-term stress for families and communities, and interfere with leading a healthy lifestyle. However, violent crime can be prevented. Numerous programs and practices have shown that by addressing root causes it is possible to prevent violence.

Sources: America’s Health Rankings analysis of Trust for America’s Health, U.S. HHS, U.S. Census Bureau, Annual Estimates of the Resident Population, United Health Foundation, AmericasHealthRankings.org, Accessed 2021; Centers for Disease Control and Prevention. National Tobacco Control Program (NTCP) State Fact Sheets, (March 2021).

Atlanta, GA: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. https://www.cdc.gov/tobacco/about/osh/state-fact-sheets/index.htm; Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. Fiscal Year 2020 Grant Funding Profiles Totals, (July 2021). Atlanta, GA: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. https://fundingprofiles.cdc.gov/

The American Public Health Association champions the health of all people and all communities. We are the only organization that influences federal policy, has a nearly 150-year perspective and brings together members from all fields of public health.

Learn more at www.apha.org.

AMERICAN PUBLIC HEALTH ASSOCIATION HEADQUARTERS • 800 I STREET, NW • WASHINGTON, DC 20001 • 202.777.2742

39

CLIMATE CHANGE DECREASES THE QUALITY OF THE

AIR WE BREATHE

Climate change poses many risks to human health. Some health impacts of climate change are already being felt in the United States. We need to safeguard our communities by protecting people’s health, wellbeing, and quality of life from climate change impacts.

Many communities are already taking steps to address these public health issues and reduce the risk of harm.

BACKGROUND When we burn fossil fuels, such as coal and gas, we release carbon dioxide (CO2). CO2 builds up in the atmosphere and causes Earth’s temperature to rise, much like a blanket traps in heat. This extra trapped heat disrupts many of the interconnected systems in our environment.

Climate change might also affect human health by making our air less healthy to breathe. Higher temperatures lead to an increase in allergens and harmful air pollutants. For instance, longer warm seasons can mean longer pollen seasons – which can increase allergic sensitizations and asthma episodes and diminish productive work and school days. Higher temperatures associated with climate change can also lead to an increase in ozone, a harmful air pollutant.

THE CLIMATE-HEALTH CONNECTION Decreased air quality introduces a number of health risks and concerns: According to the National Climate Assessment, climate change will affect human health by increasing ground-level ozone and/or particulate matter air pollution in some locations. Ground-level ozone (a key component of smog) is associated with many health problems, including diminished lung function, increased hospital admissions and emergency department visits for asthma, and increases in premature deaths.

More and larger wildres linked to climate change could also signicantly reduce air quality and affect people’s health in a number of ways. Smoke exposure increases acute (or sudden onset) respiratory illness, respiratory and cardiovascular hospitalizations, and medical visits for lung illnesses. The frequency of wildres is expected to increase as drought conditions become more prevalent.

Exposure to allergens causes health problems for many people. When sensitive individuals are simultaneously exposed to allergens and air pollutants, allergic reactions often become more severe. The increase in air pollutants makes the effects of increased allergens associated with climate change even worse. People with existing pollen allergies may have increased risk for acute respiratory effects.

40 Delaware Journal of Public Health - September 2021

ACTIONS WE CAN TAKE TO PREPARE FOR CLIMATE CHANGE We can responsibly manage the problems facing our environment by taking sensible steps toward protecting human health and safety. Whether measures are meant to reduce future climate change impacts or to address the health impacts of climate change that are happening already, early action provides the greatest health benets. It makes sense to invest in creating the strongest climate-health adaptation and preparedness programs we can.

Reducing the release of heat-trapping gases like CO2 can help protect our health and wellbeing by decreasing impacts on our climate system. Activities that reduce the amount of heat-trapping CO2 in the atmosphere are many of the same things we already know prevent health problems. Active modes of transport like biking or walking can help reduce traffic-related air pollution and encourage physical activity, which has public health benets including reduced rates of obesity, heart disease, and diabetes.

ACTIONS WE CAN TAKE TO PREPARE FOR CLIMATE CHANGE’S IMPACT ON AIR QUALITY We also need to take action to make our communities less vulnerable to climate change impacts already in progress. Many communities are already addressing climate-sensitive health issues. When it comes to managing the health threats associated with air quality, a variety of effective public health responses are available.

The U.S. Environmental Protection Agency’s Air Quality Index (Airnow.gov) is a tool that helps the public quickly learn when air quality is likely to reach unhealthy levels. These forecasts, shared online and through local TV stations, radio programs and newspapers, help individuals reduce their exposure by altering the type and location of their physical activity.

People with pollen allergies can limit their outdoor physical activity on days with high pollen counts.

Transportation and land-use planning decisions that incorporate active modes of transportation can reduce vehicle miles traveled and lower traffic-related air pollution.

Air quality monitoring and tracking initiatives can pinpoint connections between air pollution in an area that statewide or national data might not reveal. For example, the New York State Environmental Health Tracking Program helped New York identify local connections between ground-level ozone and hospitalizations for respiratory illness in children.

U.S Department of Health and Human Services Centers for Disease Control and Prevention This document was funded through cooperative agreement U38OT000131 between the Centers for Disease Control and Prevention and the American Public Health Association. The contents of this document are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the American Public Health Association.

41

MAKING THE CONNECTION :

Climate Changes Allergies and Asthma

T

he burning of fossil fuels causes the release of carbon dioxide, which builds up in the atmosphere and causes Earth’s temperature to rise—this is climate change. Upstream burning of fossil fuels produces heat-trapping toxins that are released into the air, harming our health downstream. The Earth’s average temperature has increased by nearly 1.5°F in the last century, with recent years being the warmest on record. However, climate change refers to the lasting disruption of our weather patterns, not just temperature increases. Some of these weather-related changes include increased floods and droughts, wildfires, intense storms, heat waves, and rising sea levels. These conditions have far-reaching environmental, social, agricultural, and economic effects and are ultimately harmful to our health and well-being. Two health conditions that are particularly affected by climate change are allergies and asthma.

FAST FACTS • Allergy season has become longer and more intense • Allergies cause 3.8 million missed work and school days each year.

• Asthma is responsible for nearly 2 million emergency department visits each year.

• Asthma costs $56 billion per year (both direct and indirect costs).

• In the United States 17.7 million adults (7% of adults) and 6.3 million children (9% of children) have asthma.

• About 30% of adults and 40% of children suffer from nasal allergies.

42 Delaware Journal of Public Health - September 2021

BACKGROUND ON ALLERGIES AND ASTHMA? ALLERGIES: • Allergies are a common chronic condition that happen when the immune system is introduced to an unknown irritant as foreign and overreacts to it by producing antibodies—even if it is not harmful.

Seasonal allergies can be quite uncomfortable. Symptoms include skin and eye irritation, sneezing, nasal congestion, difficulty breathing, and wheezing.

ASTHMA: • Asthma is a chronic lung disease that causes inflammation and closing/tightening of the airways. It leads to coughing and trouble breathing as airflow to the lungs is reduced. While asthma affects all population groups, some groups are at higher risk. African Americans are three times more likely than Caucasians to be hospitalized and to die of asthma. Puerto Ricans have the highest rates of asthma attacks and related deaths.

RELATIONSHIP BETWEEN ALLERGIES AND ASTHMA: • While allergies and asthma are two separate health conditions, there is a relationship between them known as “allergy-induced asthma.”

Allergic reactions can affect the lungs and airways, leading to asthma symptoms. Climate change makes our air less healthy to breathe, and poor air quality can affect allergies and asthma. Both conditions can decrease school attendance and workplace productivity.

Climate Change Impacts on Asthma and Allergies

WHAT CAN BE DONE? Reduce exposures to air pollution and pollen: • Reduce exposures to allergens and air pollutants by staying indoors in air-conditioned environments during air quality alerts and high pollen days.

• If using an air conditioner, be sure to change the filter regularly.

• Wash exposed skin and clothes when returning from outdoors, as pollen can travel on skin and clothes.

Three main exposures affect asthma and allergies: pollution, pollen, and mold.

Ambient Air Pollution

CLIMATE CHANGE

Reduce mold exposures: • Prevent mold by avoiding damp indoor environments. After a flood or leak, thoroughly dry the affected area to reduce the potential for mold formation. Fans, air conditioners, and dehumidifiers can help the drying process. If mold is present in a work or school environment, contact the office or building manager.

• Visual inspections are the most reliable way to confirm the presence of mold. If you see or smell mold, use disinfectants to remove it. Dehumidifiers are useful to reduce the potential for mold. Contact a professional, your landlord, or NIOSH (the National Institute for Occupational Safety and Health) if extensive attention is needed.

Pollen

Mold

Ambient Air Pollution Climate change increases the amount of airborne pollutants in the environment. Ambient pollutants include particulate matter, carbon monoxide, oxides of nitrogen, and volatile organic compounds. When sunlight combines with oxides of nitrogen and volatile organic compounds, increased ozone levels result. People with asthma are more susceptible to the effects of ozone and also have increased responses to allergens after ozone exposure. In addition to asthma, it is important to note that these exposures are associated with adverse cardiovascular effects.

Pollen Longer warm seasons result in longer pollen seasons and, therefore, longer allergy seasons. Higher temperatures, changes in precipitation, increased carbon dioxide levels, and changes in plant growth patterns all contribute to a longer and more intense allergy season. For example, higher carbon dioxide levels increase pollen levels and pollen potency. Longer and more intense pollen seasons have negative effects on the respiratory system, especially among those with allergies or asthma. This is particularly true of ragweed season.

Mold Mold growth is related to increased storms, precipitation, flooding, temperatures, and humidity. Mold is a hazard that can harm our health by decreasing the air quality in home, school, and work environments. Mold can cause respiratory irritation and is a common trigger for asthma and allergies.

Reactions to mold exposures are an especially troublesome problem for people with asthma or weakened immune systems.

Seek treatment: • Follow up with a physician if you have allergy or asthma symptoms. Ask a physician if allergy medication could help prevent future problems.

• If you have asthma, be sure to keep your inhaler nearby. (Children must follow school policies on self-administered inhaler use.)

Learn more on how children can use asthma inhalers at www.cdc.gov/asthma/inhaler_ video/default.htm.

Resources: • If at all possible, avoid outdoor activity on “unhealthy” air quality days. Stay updated on air quality alerts using the AirNow webpage at www.airnow.gov.

• Learn more about mold control at www.cdc. gov/mold/control_mold.htm.

• For more information on climate solutions and what you can do to reduce your carbon footprint, visit www.apha.org/climate and www.climateforhealth.org.

This document is made possible by memorandum of understanding between the American Public Health Association and ecoAmerica.

MAKING THE CONNECTION: CLIMATE CHANGES ALLERGIES AND ASTHMA

43

Northeast

CLIMATE AND HEALTH BACKGROUND Burning fossil fuels, such as coal and gas, releases carbon dioxide. CO2 builds up in the atmosphere and causes Earth’s temperatures to rise. This extra, trapped heat disrupts many of the interconnected systems in our environment, posing risks to human health. Some impacts of climate change are already being felt throughout the United States. We need to safeguard our communities by protecting people’s health from the effects of climate change.

ISSUE SUMMARIES VECTOR-BORNE DISEASE Climate change increases the risk of diseases spread by vectors such as feas, ticks and mosquitoes. Warmer than average temperatures make previously unaffected regions new habitats for these disease-carrying organisms. In particular, mosquitos carrying West Nile Virus and ticks carrying Lyme disease have expanded their geographic ranges, resulting in disease transmission in previously unaffected areas.

LYME DISEASE CASES IN THE NORTHEAST, 2001

LYME DISEASE CASES IN THE NORTHEAST, 2015

Source: The Centers for Disease Control and Prevention

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FLOODING AND WATER QUALITY Heavy rain, worsened by climate change, contributes to severe fooding and sewer overfows. Floodwaters can be contaminated by agricultural waste, chemicals and raw sewage that can carry harmful bacteria, viruses and parasites. Flooding and poor water quality can lead to injury and illness.

FAST FACTS In 2013, there were 133 deaths due to extreme heat in New York City.

EXTREME HEAT Extreme heat leads to increased hospitalizations and, sometimes, fatal health events. Children, the elderly, people with chronic diseases, low-income populations and outdoor workers are at the highest risk for heat-related illnesses. Extreme heat is also linked to increased aggression, raising the incidence of assaults, murders and suicides.

NUMBER OF EXTREME HEAT DAYS, 2016

By 2090, there will be 490 additional cases of West Nile Virus per year in the Northeast.

Increased risk of campylobacteriosis and salmonella has been documented in Maryland due to increased heavy precipitation.

Since the early 1990s, reported cases of Lyme disease in the U.S. have tripled, to about 30,000 cases each year.

After Hurricane Sandy impacted the entire eastern seaboard, 11 billion gallons of untreated and partially treated sewage fowed into rivers, bays, canals and city streets.

Source: The Centers for Disease Control and Prevention

www.apha.org/climate

45

MAKING THE CONNECTION :

Changing Climate through Healthy Community Design and Transportation

FAST FACTS • Since 1990, greenhouse gas emissions from the transportation sector have risen 16%.

• Transportation is the second leading contributor to greenhouse gas emissions in the U.S. • Short trips are the most hazardous because the most harmful pollutants are emitted within minutes of starting a car.

• Half of trips in the US are 3 miles or less, and over 25% of our trips are less than 1 mile. Private vehicles are used in as many as 69% of these short trips.

• Vehicle pollutants are most concentrated near major roads. People living close to major roads are at increased risk of chronic diseases (e.g., asthma, cardiovascular disease, cancer) and premature death.

• Physical inactivity among U.S. adults has increased approximately 35% in the last 30 years, while use of auto transportation has increased.

• Diabetes rates decrease as neighborhood walkability increases.

46 Delaware Journal of Public Health - September 2021

T

he burning of fossil fuels causes the release of carbon dioxide, which builds up in the atmosphere and causes Earth’s temperature to rise— this is climate change. Upstream burning of fossil fuels produces heat-trapping toxins that are released into the air, harming our health downstream. The Earth’s average temperature has increased by nearly 1.5°F in the last century, with recent years being the warmest on record. However, climate change refers to the lasting disruption of our weather patterns, not just temperature increases. Some of these weather-related changes include increased floods and droughts, wildfires, intense storms, heat waves, and rising sea levels. These conditions have far-reaching environmental, social, agricultural, and economic effects and are ultimately harmful to our health and well-being. Traffic emissions are harmful to our health and contribute to climate change. However, transportation systems and healthy community design offer great opportunities to mitigate climate change and improve health.

BACKGROUND ON TRANSPORTATION AND HEALTHY COMMUNITY DESIGN The development of transportation systems in the U.S. has transformed our lives and livelihoods. The advent of transportation has expanded access to jobs, health care, food, goods, and services. Also, transportation allows people to evacuate and seek safety in times of danger. Conversely, lack of access to transportation limits access to needed resources. It also can result in adverse health exposures, such as those caused by walking during periods of extreme heat or poor air quality. Natural disasters caused by climate change can limit access to transportation, hindering safe evacuation. In addition, they can restrict emergency service providers from reaching those who need them. However, increased access to automotive transportation has led to dependence on automobiles and to urban sprawl, where populations are expanding away from urban centers and driving greater distances to workplaces and resources. Dependence on

Impacts on Climate Change and Health

vehicles is among the top factors that have increased greenhouse gas emissions, which drive climate change and are harmful to our health.

Increased automobile dependence has led to more sedentary lifestyles, contributing to rising rates of chronic diseases such as obesity, diabetes, and heart disease. The way we design and build our communities affects our physical and mental health. Many communities are designed for automobiles rather than for residents. Healthy community design practices, however, consider walk-, bike-, and roll-friendly routes when designing or updating communities, allowing people to access necessary amenities safely and practically. This results in improved air quality, health, and quality of life.

releases harmful AUTOMOTIVE TRANSPORTATION Driving pollutants into the environment.

WHAT CAN BE DONE?

CASE STUDY: OLYMPIC-SIZED REDUCTION IN ASTHMA Transportation practices can influence our health. The more we drive, the more we contribute to harmful air quality. When Atlanta was home to the 1996 Olympics, residents were asked to limit driving to reduce traffic congestion. Traffic—and thus air pollution—decreased substantially. Moreover, there was a significant decrease in pediatric hospital admissions and emergency room visits for asthma. Once the Olympics were over and normal traffic resumed, those rates increased to baseline levels. Less driving and more use of mass transit can lead to improved health for all and, especially, improved respiratory health for children.

TRANSPORTATION AND DESIGN

People both inside and outside the vehicle are exposed.

CLIMATE IMPACTS:

Increases Traffic, Increases Pollution

HEALTH IMPACTS:

Decreases physical activity Increases chronic disease risk Worsens existing chronic disease

Many people can be transported at once via mass transit, reducing vehicles on roads. This form of transportation also encourages walking between stops and destinations.

MASS/PUBLIC TRANSPORTATION

• Increase use of mass transportation, including buses, trolleys, light rail (trams), passenger trains, rapid transit (metro/subways), and ferries.

CLIMATE IMPACTS:

Reduces Traffic, Reduces Pollution

HEALTH IMPACTS:

Increases physical activity (slightly) Increases safety, Decreases stress Increases social interaction

ACTIVE TRANSPORTATION

Walking, biking, and rolling to the places we need to go is termed active transportation.

People who have options to reach their destinations without driving can have more active lifestyles. Active lifestyles promote healthier lives.

CLIMATE IMPACTS:

Reduces Traffic, Reduces Pollution

HEALTH IMPACTS:

Increases physical activity, Decreases chronic disease risk, Decreases stress, Increases social interaction

Communities are designed with health in mind. All modes of transportation, particularly safe forms of active transportation, are weighed. Designs promote green space (including parks or areas with trees and gardens).

Explore climate-friendly options for commuting: • Walk or bike for short trips rather than driving if routes are safe and accessible. Active transportation (biking, walking, and rolling) can reduce greenhouse gas emissions. It can also improve health, increase safety, and save money. Biking in groups can create a safer and more social environment.

HEALTHY COMMUNITY DESIGN

CLIMATE IMPACTS:

Decreases Distances Traveled, Reduces Pollution

HEALTH IMPACTS:

Decreases chronic disease risk Increases safety

This document is made possible by memorandum of understanding between the American Public Health Association and ecoAmerica.

• Use employer-offered programs to reduce driving (e.g., working from home or working compressed schedules).

• If driving, refrain from fast acceleration or idling your car’s engine. Also, keep tire pressure at the appropriate level and stay up to date on vehicle maintenance (e.g., tune-ups and oil changes) to reduce excess emissions.

Participate in a healthy community: • Planting trees can help the environment in many ways. For example, it can reduce pollution, cool the environment, and reduce flooding.

• Participate in or establish community gardens to increase access to healthy food and promote green space.

Resources: • For more information on climate solutions and what you can do to reduce your carbon footprint, visit www.apha.org/climate and www.climateforhealth.org.

MAKING THE CONNECTION: THROUGH HEALTHY COMMUNITY DESIGN AND TRANSPORTATION

47

MAKING THE CONNECTION :

Climate Changes Children’s Health

T

he burning of fossil fuels causes the release of carbon dioxide, which builds up in the atmosphere and causes Earth’s temperature to rise—this is climate change. Upstream burning of fossil fuels produces heat-trapping toxins that are released into the air, harming our health downstream. The Earth’s average temperature has increased by nearly 1.5°F in the last century, with recent years being the warmest on record. However, climate change refers to the lasting disruption of our weather patterns, not just temperature increases. Some of these weather-related changes include increased floods and droughts, wildfires, intense storms, heat waves, and rising sea levels. These conditions have far-reaching environmental, social, agricultural, and economic effects and are ultimately harmful to our health and well-being. Children’s health, wellness, and safety are affected by climate change.

FAST FACTS • Around 88% of the global disease burden of climate change falls on children under 5 years.

• Ozone is a known trigger for asthma attacks. Over 2 million children who suffer from asthma live in areas of the U.S. with unhealthy ozone levels by the American Lung Association.

• Rates of heat-related death for infants under 1 year are 4 times as high as for persons 1-44 years old.

• After Superstorm Sandy, children living in homes with damage were over 5 times as likely to show signs of depression. They were over 8 times as likely to have difficulty sleeping and 5 times as likely to show signs of anxiety.

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BACKGROUND ON CHILDREN’S HEALTH Children are especially vulnerable to climate change because of their physical and cognitive immaturity: • Compared to adults, children breathe more air and drink more fluid for their body weight. Also, because they are shorter and spend more time on the ground, they are closer to ground-level pollutants. These factors cause children to have higher exposure levels than adults.

• Children engage in different behaviors from adults, including what they eat and activities such as crawling on the ground and hand-to-mouth activities. These behaviors make them more vulnerable to air, water, and soil exposures.

• Children have immature immune and organ systems. Thus, they are more sensitive to exposures that can cause permanent disabilities.

• Children are dependent on caregivers and may not be able to respond appropriately to threats. As a result, they are at risk of injury or even death in extreme weather emergencies.

• Children and adolescents engage in more outdoor activities than adults, leaving them more exposed to heat and outdoor air pollutants like ozone.

CASE STUDY: HEAT STROKE HITS YOUTH It was early August, and Logan attended his junior high school basketball practice. The intensity of the drills was matched only by the temperature of over 100°F inside the unairconditioned gym. As practice progressed, Logan became dizzy and eventually collapsed. He suffered heat stroke and developed life-threatening complications. After a week in the hospital, Logan returned home. Unfortunately, heat stroke is becoming more common among young athletes. Heat illness is now the top cause of death and disability in high school athletes.

(Logan’s story: http://ksi.uconn.edu/personal-stories/logan-johnsons-story/)

Climate Change Impacts on Children’s Health EXTREME WEATHER: Climate change increases the amount and severity of storms. Extreme weather can impact sanitation and sewer systems. This increases the risk of water-related and gastrointestinal illnesses. Children are especially susceptible to such conditions due to their developing immune systems. Injury and mental health impacts are also common among children exposed to extreme weather.

EXTREME HEAT: Climate change is increasing the frequency and intensity of extreme heat events.

Children are less able than adults to regulate their body temperature. Thus, they are more vulnerable to changes in temperature. Compared to adults, extreme temperatures have led to more heat-related illnesses and deaths among children, especially infants.

VECTOR-BORNE DISEASE: Insects and rodents that carry viruses respond quickly to changes in temperature and moisture, which can increase their growth and duration. Children are at risk for vector-borne illnesses due to their increased outdoor activity. They are also susceptible due to their developing immune systems. Lyme disease, hantavirus, dengue fever, and Zika virus are among the climate-related vector-borne diseases that pose a heavy health burden on children.

Stunted Growth Malnutrition Dehydration Lyme Disease Hantavirus Zika Virus FOOD INSECURITY: Given changes in the weather due to climate change, Gastrointestinal crops will be affected by droughts Disorders and flooding. Climate change also alters the nutrient quality of food. Together, these Starvation impacts could reduce access to food and Asthma nutrients. Poor nutrition can result in developmental delays and adverse health outcomes Allergies for infants and children.

POOR AIR QUALITY: Climate change extends the warm season and lengthens pollen season. It also increases the amount of airborne pollutants in the environment.

Pollutants and pollen can have chronic impacts on children’s respiratory health, triggering allergies and asthma.

This document is made possible by memorandum of understanding between the American Public Health Association and ecoAmerica.

WHAT CAN BE DONE? Reduce the risk of heat stroke: • To prevent heat stress, heat exhaustion, and heat stroke, prevent children from engaging in strenuous outdoor activities during high temperature days or during the hottest times of the day. If children must be outdoors during these times, be sure they wear lightweight clothing, take breaks often, and stay hydrated. Seek medical help immediately if you think someone is having heat stroke.

• Seek out cooling centers if you do not have air conditioning, your air conditioner does not work properly, or you are outside on high heat days. Staying in an air-conditioned environment is the best way to prevent heat-related illness.

• Never leave a child alone in a vehicle, especially on a hot day.

Protect against insects and rodents that carry disease: • To prevent vector-borne disease, use insect repellent or clothing that covers your extremities. Thoroughly inspect children, pets, and gear for ticks if they have been in high grass, wooded, or leafy areas. Remove ticks promptly if any are found.

• You can reduce your risk of mosquito exposure by making sure there is no standing water in your yard.

Prepare for emergencies: • Develop an emergency plan and kit for situations where children might be affected by extreme weather. Practice emergency response plans with children.

• Be aware of children’s trauma reactions to natural disasters. Children may develop nightmares, bed wetting, or fear of sirens, storms, or loud noises after the incident. Follow up with a professional if the reaction is prolonged.

Resources: • Stay updated on air quality alerts using the AirNow webpage at https://www.airnow.gov. If at all possible, children should avoid outdoor activity on days that are labeled “unhealthy for sensitive groups.”

• For more information on climate solutions and what you can do to reduce your carbon footprint, visit www.apha. org/climate and www.climateforhealth.org.

MAKING THE CONNECTION: CLIMATE CHANGES CHILDREN’S HEALTH

49

MAKING THE CONNECTION :

Climate Changes Mental Health

T

he burning of fossil fuels causes the release of carbon dioxide, which builds up in the atmosphere and causes Earth’s temperature to rise—this is climate change. Upstream burning of fossil fuels produces heat-trapping toxins that are released into the air, harming our health downstream. The Earth’s average temperature has increased by nearly 1.5°F in the last century, with recent years being the warmest on record. However, climate change refers to the lasting disruption of our weather patterns, not just temperature increases. Some of these weather-related changes include increased floods and droughts, wildfires, intense storms, heat waves, and rising sea levels. These conditions have far-reaching environmental, social, agricultural, and economic effects and are ultimately harmful to our health and well-being. Climate change not only affects our physical health but can also harm our mental health and wellness.

FAST FACTS • More than 40 million adults in the U.S. suffer from a mental illness.

• Victims of natural disasters are at an increased risk of anxiety, depression, PTSD, and suicide.

• 25-50% of people exposed to an extreme weather disaster are at risk of adverse mental health effects.

BACKGROUND ON MENTAL HEALTH Mental health encompasses emotional, psychological, behavioral, and social wellbeing. It determines how people cope with the normal stress of life and function within their community. Mental illness, on the other hand, adversely affects one’s thinking, feelings, and/or behaviors. As a result, it can lead to difficulties in functioning. Climate change can cause and intensify stress and anxiety, adversely affecting mental health. For example, events such as extreme storms or extreme heat can lead to depression, anger, and even violence. Everyone is at risk, but not everyone is affected equally. Groups that are especially vulnerable to the mental health impacts of climate change include children, the elderly, and women. Also at risk are disadvantaged groups, those with existing mental illness, and those with close ties to the land, including farmers and tribal communities.

• Up to 54% of adults and 45% of children suffer depression after a natural disaster.

• Forty-nine percent of the survivors of Hurricane Katrina developed an anxiety or mood disorder, and 1 in 6 developed PTSD. Suicide and suicidal ideation more than doubled.

• After a record drought in the 1980s, the suicide rate doubled, including more than 900 farmers in the Upper Midwest.

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CASE STUDY: THE MENTAL WEIGHT OF BROKEN LEVEES The severity of Hurricane Katrina was far exceeded by the considerable destruction, devastation, displacement, and death left in its aftermath. Some residents trapped in their homes escaped to their roofs to await rescue. From there, they watched as the remains of their neighbors and loved ones floated through the flooded streets. Some families were separated into different places of refuge. Over a million people were displaced and nearly 2,000 died. Thousands were left traumatized. Those who remained were unable to access basic resources such as schools, shelters, and emergency services. The heavy mental toll extended to those who evacuated as well. Indeed, Katrina’s overwhelming burden produced many stressors. Survivors had to cope with profound loss, disrupted social ties, and resulting surges in violence. Mental health services were not widely available. Thus, years later, the psychological scars caused by Katrina continue to linger.

WHAT CAN BE DONE?

Climate Change Impacts on Mental Health IMMEDIATE IMPACTS

Natural disasters are sudden in their onset and include destructive storms, floods, wildfires, and extreme heat.

Natural disasters may cause posttraumatic stress disorder (PTSD), anxiety, depression, and stress. Self-harm, including substance abuse and suicidal ideation, may also occur.

READINESS: Seek education about what to expect and how to prepare for future climate events.

GRADUAL IMPACTS

Slowly progressing, long-term conditions associated with climate change include rising temperatures, elevated sea levels, and changing precipitation patterns.

Chronic stress can result from the gradual impacts of climate change. For example infectious diseases, chronic diseases (asthma and allergies), nutritional deficiencies, and injuries can contribute to stress.

MONITORING: Know your health, and determine whether you are stressed (signs include low energy, tension, and headaches). Seek treatment and/or support if needed.

INDIRECT IMPACTS

Climate change can affect the way we think about ourselves, each other, and the world.

After a climate event or resulting displacement, people may experience a diminished sense of self, difficulty relating to others, diminished social interaction, and solastalgia (the loss of a sense of place, solace, and security tied to one’s physical environment).

Community impacts include domestic abuse, child abuse, and violence (e.g., assault and civil conflict). Economic insecurity and physical damage are other potential effects.

COOPERATION: Establish social ties and connections with community members. This will help to withstand changes and encourage adaptation.

Prepare for emergencies: • Prepare in advance for emergencies by having and practicing an emergency plan. Include food, water, flashlights, and a first aid kit in emergency preparedness kits. Also consider including items, such as books and games, that can help reduce stress. If you are taking medication for a mental health condition (or other health conditions), get your refills ahead of the storm if possible.

• Evacuate ahead of a disaster if at all possible.

Evacuating early reduces the risk of stress/anxiety symptoms. The further one evacuates from the site of a disaster, the less severe the mental health impacts are likely to be.

• Check in on vulnerable neighbors during extreme weather.

Seek treatment: • Mental health conditions are often stigmatized, but treatment for them can be effective and enhance overall well-being. Seek treatment if you or someone you know may be suffering from a persistent and/or debilitating mental health condition.

• Be aware of mental health services such as counseling and therapy. Also keep in mind informal means of care such as self-care and spiritual and community-based services.

• Engage in healthy coping behaviors and seek comfort in community events following a weather-related disaster.

• Monitor signs of behavioral and psychological changes in children. Such changes include an inability to speak, bed-wetting, stress or fright when not in danger, and self-harm. Watching excess television coverage of an extreme weather event can cause distress. Parents should monitor what their children watch and reassure and comfort them so they feel protected.

Resources: • To learn more about psychological impacts of climate change, visit www.ecoamerica.org/ mental-health.pdf.

• For more information on climate solutions and what you can do to reduce your carbon footprint, visit www.apha.org/climate and www. climateforhealth.org.

This document is made possible by memorandum of understanding between the American Public Health Association and ecoAmerica.

MAKING THE CONNECTION: CLIMATE CHANGES MENTAL HEALTH

51

National Environmental Health Partnership Council 2016

Environmental Health Saves Lives, Saves Money and Saves the Future This project builds on recommendations from a 20061 report that emphasized the need to explore the value of environmental health services. The Value of Environmental Health Services: Exploring the Evidence 2016 report summarizes the literature on economic evaluation of environmental health interventions.

And it yielded a number of important ndings.

A core part of public health, environmental health focuses on preventing disease and creating environments that support health.

Environmental public health program areas covered in the project include:

Food Safety

Key Findings

Water Quality

For every $1 invested in lead paint hazard control, a return of investment of $12–$155/household or a net savings of $124–188 billion was realized (Gould, 2009).

Lead Exposure

Higher local health department spending on food safety and facility sanitation activities was linked to a lower incidence of restaurant related foodborne illness in Washington and a lower incidence of facility inspection-related waterborne disease in New York.

Four major categories of chronic childhood conditions linked to the environment – lead poisoning and methylmercury exposure, childhood cancer, developmental disabilities, and asthma – cost the US $76.6 billion in 2008.

Mercury Exposure

Climate Change

Mercury-related losses of cognitive function in children, and decreased economic productivity, resulted in diminished intelligence over a lifetime.

The annual estimated economic cost of births was $8.7 billion.

Housing

Evidence suggests urban development strategies and reduction of pollution exposure from roadways would signicantly cut health care spending, particularly in low-income neighborhoods.

Special populations, including children and environmental justice communities

The cost of running a heat–health warning system for Philadelphia was relatively small ($210,000) compared with the benets of saving lives ($468 million) from 1995–1998.

Every $1 spent in CDC’s National Asthma Control Program saved $71 in asthma-related expenditures.

1

52 Delaware Journal of Public Health - September 2021

Harris et al (2006). Environmental health practitioners developing strategic partnerships and engaging public health policymakers.

When we heal the earth, we heal ourselves - David Orr, Special Assistant to the President of Oberlin College on Sustainability and the Environment, Oberlin College

The project identied a number of challenges in valuing environmental health interventions: The benets of environmental health interventions are hard to measure.

Estimating benets requires an understanding of the causal relationship between the environmental exposure (e.g., pollutant) and health outcomes, which is often uncertain.

Health impacts can either be directly related to exposure (e.g., anemia from lead poisoning) or indirectly related to exposure (such as school attendance, work productivity).

Environmental health interventions cannot be evaluated within the same framework as other public health interventions, which have a more narrowly dened scope and range of costs and benets.

Economic evaluations of environmental health interventions are highly uncertain, due to methodological difficulties, lack of reliable and consistent data and an inability to generalize ndings.

Conclusion Despite signicant ndings, there is a critical lack of economic evaluation studies for the wide-ranging, complex discipline of environmental health. The country needs a framework for dening and evaluating environmental health interventions. This document/effort ought to help to clearly articulate the value of environmental health interventions, including reductions in health care costs and improvements in quality of life.

This document was funded through cooperative agreement U38OT000131 between the Centers for Disease Control and Prevention and the American Public Health Association. The contents of this document are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the American Public Health Association.

53

Energy Justice and Climate Change: Key Concepts for Public Health

Climate change is a threat multiplier.

Climate change exacerbates health inequities, disproportionately harming the most vulnerable among us. That includes children and pregnant women, people with low income, the aged and people with disabilities and chronic illnesses, some communities of color, indigenous people and tribal communities, immigrants, marginalized people of all races and ethnicities and outdoor workers, to name a few.

Difficulty in accessing the political, economic, social and environmental resources that enable people to cope with climate threats, such as extreme heat and natural disasters, can contribute to a potentially unmanageable energy burden as climate change worsens.

U.S. communities that lack accessible, affordable household energy services often have poorer health, fewer educational and economic opportunities, limited political representation and inadequate access to health care. As climate change worsens, alternative energies, such as solar or wind are becoming competitive at similar, or even lower, prices than fossil fuels like coal and natural gas.

Alongside community leaders, public health professionals have a role to play in monitoring, evaluating and supporting this transition to a healthier energy supply. A thoughtful energy transition provides opportunities for mitigating climate change and promoting health equity at the same time.

How do structural racism and climate change contribute to energy burden?

In the same way that climate change disproportionately affects certain populations, energy is a health equity issue. For over 60 years, the environmental justice movement has raised awareness that people of color and low-income communities often bear the brunt of “brown” environmental issues. Meanwhile, white and more affluent communities enjoy the benefits of “green” environmental benefits.

In the context of energy, race – even more than class, is the number one indicator for the placement of toxic facilities in this country.

Housing in general is one of the best known and most well-documented social determinants of health. The affordability, location and quality of housing all have been independently linked to health. It is important to acknowledge the effect that historical practices of redlining and discriminatory mortgage lending have had on our nation.

Spotlight: Heat islands Poor-quality housing and blighted neighborhoods diminish property values, increase crime and erode the cohesiveness and political power of communities. As a result, many people of color and low-income communities in urban areas lack the infrastructure investment for things like green spaces that are critical to cooling urban heat islands.

1 54 Delaware Journal of Public Health - September 2021

These neighborhoods get much hotter on average than other areas, negatively impacting the health of residents and increasing energy usage. Residents who rent their property lack the long-term incentive to invest in costly air conditioning units for a short-term residence. And with the exception of Dallas and Phoenix, there is no law requiring landlords to provide air conditioning the way they must provide heat. This places renters at higher risk.

Through ongoing racial discrimination and worsening climate change, communities of color face increasingly impossible trade-offs when managing the cost of their undue energy burden and other household needs.

Key concepts ENERGY INSECURITY An inability to adequately meet basic household energy needs, such as gas, appliances, plumbing, heating, cooling. In 2015, 31% of U.S. households reported struggling to pay energy bills or to maintain adequate heating and cooling in their homes. About one in five households reported reducing or forgoing basic necessities like food and medicine to pay an energy bill. Eleven percent of households reported keeping their home at an unhealthy or unsafe temperature due to costs.

CASE STUDY The U.S. Low Income Home Energy Assistance Program assists eligible low-income households with their heating and cooling energy costs and provides bill payment assistance, energy crisis assistance, weatherization and energy-related home repairs. For more information: www.benefits.gov/benefit/623

ENERGY BURDEN The proportion of a household’s monthly income that is spent on home energy costs. Low-income households often face an energy burden that is three times higher than other households.

CASE STUDY The Kentucky Utilities WeCare program stands for Weatherization, Conservation Advice and Recycling Energy. The program assists with home weatherization for low-income populations, leading to a decreased energy burden through increased energy efficiency. For more information: www.lge-ku.com/wecare

ENERGY EQUITY Fair distribution of benefits and burdens from energy production and consumption. Energy equity requires equitable distribution of risks and hazards, as well as available and affordable energy sources. While unfamiliar to many residents, equity-centered energy and utility policies significantly enhance household economic stability and improve the overall quality of air, water and other natural resources that affect our health and well-being. Working directly with communities to build their capacity around energy planning and decisionmaking is key to advancing equity.

CASE STUDY Partnership for Southern Equity’s Just Energy Circle and Just Energy Academy works to eliminate energy insecurity by advancing policies and institutional actions that promote racial equity and shared prosperity for all in the growth of metropolitan Atlanta and the American South. For more information: www.sites.google.com/view/pse-just-energy-circle and www.justenergyacademy.org

ENERGY JUSTICE The principle that all people should have a reliable, safe and affordable source of energy; protection from a disproportionate share of costs or negative impacts or externalities associated with building, operating and maintaining electric power generation, transmission and distribution systems; and equitable distribution of and access to benefits from such systems. A global energy system that 1) fairly disseminates the costs and benefits of energy services and 2) contributes to more representative and impartial energy decisionmaking.

CASE STUDY The Energy Democracy Project and the Initiative for Energy Justice develop resources to build collective power and advance the movement to democratize energy by providing law and policy resources to advocates and policymakers. For more information: www.energydemocracy.us and www.iejusa.org

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ENVIRONMENTAL JUSTICE All people and communities have the right to equal environmental protection under the law, and the right to live, work and play in communities that are safe, healthy and free of life-threatening conditions. Environmental justice is often associated with environmental racism, in which, whether by conscious design or institutional neglect, actions and decisions result in the disproportionate exposure of people of color to environmental hazards and environmental health burdens.

CASE STUDY WE ACT for Environmental Justice in New York City builds healthy communities by ensuring that people of color and low-income residents participate meaningfully in the creation of sound and fair environmental health and protection policies and practices through member participation in education, policy, advocacy, research and more. For more information: www.weact.org

JUST TRANSITION A set of principles and practices focused on changing the energy industry from fossil fuels to alternative energy sources, which ensures workers’ rights and offers economic opportunities for affected communities. This cultural, as well as economic, shift emphasizes sustainability in the face of climate change.

CASE STUDY Coalfield Development trains former coal industry workers in Appalachia for jobs in sectors such

as solar energy, sustainable construction and mine-land reclamation. For more information: www.coalfielddevelopment.org HEAT EQUITY The development of policies and practices that mitigate heat islands and help people adapt to the impacts of extreme heat in a way that reduces the inequitable distribution of risks across different populations within the same urban area.

CASE STUDY In Dallas, the National Center for Healthy Housing worked together with the Health and Wellness Alliance for Children to update the “Minimum Urban Rehabilitation Standards” of the Dallas City Code Housing Ordinance, requiring landlords to provide air conditioning in all residences of Dallas the same way heat is currently required. For more information: www.nphw.org/nphw-2020/-/media/files/pdf/topics/environment/built_ environment/housing_ordinance_dallas.ashx

Note: Key concept definitions were courtesy of a variety of sources. For references, please email climatechange@apha.org.

3 56 Delaware Journal of Public Health - September 2021

How public health professionals can advance an energy just future

Climate change exacerbates health inequities. Political, economic, social and environmental resources enable people to cope with climate threats, such as extreme heat and natural disasters. But difficulty in accessing these can contribute to a potentially unmanageable energy burden as climate change worsens.

U.S. communities that lack accessible, affordable household energy services often have poorer health, fewer educational opportunities, limited political representation, fewer economic opportunities and inadequate access to health care.

In 2015, 31% of U.S. households reported hardships in paying energy bills or maintaining adequate heating and cooling in their homes. As climate change worsens, alternative energies such as solar or wind are becoming competitive at similar, or even lower, prices than fossil fuels like coal and natural gas.

Alongside community leaders, public health professionals have a role to play in monitoring, evaluating and supporting a transition to a healthier energy supply. A thoughtful energy transition provides opportunities for mitigating climate change and promoting health equity at the same time.

Note: The recommendations included in this factsheet emerged from APHA’s Climate Changes Health Roundtable on energy justice at the 2019 APHA Annual Meeting and Expo in Philadelphia, PA.

What could an energy just future look like?

•

The risks and benefits of energy production and consumption are more equitably distributed across place, people and time.

Affordable energy is available continuously and resilient to climate threats.

•

Power is distributed and controlled or owned by the community. Profits are reinvested locally with sustainability and equity in mind.

•

Existing infrastructure is used for new renewable power, eliminating the dirtiest energy first. Communities experience the health benefits of improved environmental health conditions.

•

Relevant sectors (e.g. building, agriculture, healthcare, community anchor institutions) are engaged with a just transition and energy is conserved.

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How can public health professionals advance energy justice?

Strengthen community partnerships.

•

Build partnerships with underrepresented frontline tribes and communities that are protecting land, which various energy interests see as available.

•

Support the advancement of energy efficiency and affordable alternative forms of energy in historically marginalized communities, including low-income communities and communities of color.

•

Partner with social service or community action agencies and serve as a voice of connection to local or county government.

SPOTLIGHT The Center for Story-Based Strategy conducts trainings on how to craft a compelling story in order to influence social change. This organization provides tools that empower groups to advocate for themselves in creative ways. The APHA Center for Climate, Health and Equity also offers story-telling resources for climate and health advocacy.

Support research and benchmarking.

•

Quantify the health impacts and costs of energy injustice to support a culture change that prioritizes a just economy and human well-being.

•

Promote energy efficiency in home and public operations through community and agency engagement.

SPOTLIGHT The Environmental Protection Agency’s Energy Star program helps businesses and individuals save money and mitigate climate change through energy efficiency reporting.

Advocate for policy.

•

Lobby for fuel efficiency standards and promote independence from fossil fuel resources.

•

Include definitive statements on equity in energy, health and climate programs and policies.

•

Support policies that promote a just transition for workers and communities adversely impacted by climate change and the transition to a low-carbon economy.

SPOTLIGHT Green & Healthy Homes Initiative’s office in Memphis, TN, and Le Bonheur Children’s Hospital’s CHAMP (Changing High-Risk Asthma in Memphis through Partnership) asthma program coordinate home energy audits to address asthma.

2 58 Delaware Journal of Public Health - September 2021

Improve energy infrastructure.

•

Prioritize localized power with microgrids of renewable energy, as an alternative to centralized public utility companies.

•

Retrofit home energy systems to benefit tenants, such as with weatherization or alternative energy sources.

•

Engage the building and housing sectors in partnership.

•

Invest in affordable housing to avoid displacement and long-distance commuting.

SPOTLIGHT Community Choice Aggregation allows neighborhoods to purchase a greater percentage of renewable energy than would be available from a dominant electrical utility company.

Develop education and communication.

•

Develop educational resources and templates for testimony or op-eds.

•

Use national conferences as platforms to inspire action on energy justice.

SPOTLIGHT Practice Greenhealth and Health Care Without Harm provide educational materials for healthcare workers to improve the carbon footprint and environmental safety of their hospitals.

Reimagine transportation.

•

Engage with transit agencies and transit-oriented development advocates to restructure public spending. Develop affordable public transportation systems and multi-modal streets that allow space for biking, walking, rolling, etc. with increased access in low-income communities and communities of color.

•

Encourage transportation agencies to prioritize carbon reductions in their missions and budgets.

SPOTLIGHT Intercity Transit Municipal Corporation in Olympia, WA, stopped collecting fares and offers free bus transport throughout the city. The reduced financial burden allows greater mobility for city residents. And the increased public transport ridership can decrease the number of single-person cars on the road, cutting down on both air pollution and traffic.

3 59

BACKGROUND When we burn fossil fuels, such as coal and gas, we release carbon dioxide (CO2). CO2 builds up in the atmosphere and causes Earth’s temperature to rise, much like a blanket traps in heat. This extra trapped heat disrupts many of the interconnected systems in our environment.

Climate change poses many risks to human health. Some health impacts of climate change are already being felt in the United States.

We need to safeguard our communities by protecting people’s health, wellbeing, and quality of life from climate change impacts.

Many communities are already taking steps to address these public health issues and reduce the risk of harm.

Climate change also affects human health by increasing the frequency and intensity of extreme heat events. Increases in the overall temperature of the atmosphere and oceans associated with climate change cause changes in wind, moisture, and heat circulation patterns. These changes contribute to shifts in extreme weather events, including extreme heat events.

THE CLIMATE-HEALTH CONNECTION Extreme heat events can be dangerous to health – even fatal.

These events result in increased hospital admissions for heatrelated illness, as well as cardiovascular and respiratory disorders.

Extreme heat events can trigger a variety of heat stress conditions, such as heat stroke. Heat stroke is the most serious heat-related disorder. It occurs when the body becomes unable to control its temperature. Body temperature rises rapidly, the sweating mechanism fails, and the body cannot cool down. This condition can cause death or permanent disability if emergency treatment is not given.

Small children, the elderly, and certain other groups including people with chronic diseases, low-income populations, and outdoor workers have higher risk for heat-related illness.

Higher temperatures and respiratory problems are also linked. One reason is because higher temperatures contribute to the build-up of harmful air pollutants.

Many cities across the United States, including St. Louis, Philadelphia, Chicago, and Cincinnati, have seen large increases in death rates during heat waves.

60 Delaware Journal of Public Health - September 2021

ACTIONS WE CAN TAKE TO PREPARE FOR CLIMATE CHANGE We can responsibly manage the problems facing our environment by taking sensible steps toward protecting human health and safety. Whether measures are meant to reduce future climate change impacts or address the health impacts of climate change that are happening already, early action provides the greatest health benets. It makes sense to invest in creating the strongest climate-health adaptation and preparedness programs we can.

Reducing the release of heat-trapping gases like CO2 can help protect our health and wellbeing by decreasing impacts on our climate system. Activities that reduce the amount of heat-trapping CO2 in the atmosphere are many of the same things we already know prevent health problems.

Active modes of transport like biking or walking can help reduce traffic-related air pollution and encourage physical activity, which has public health benets including reduced rates of obesity, heart disease, and diabetes.

ACTIONS WE CAN TAKE TO PREPARE FOR EXTREME HEAT EVENTS We also need to take actions that make our communities less vulnerable to climate change impacts already in progress. Many communities have programs to address climate-sensitive health issues. When it comes to managing the health threats associated with extreme heat, there are approaches that we know work: Heat wave early warning systems can protect people by communicating heat wave risks and suggesting protective actions. These warning systems are much less costly than treating and coping with heat illnesses.

Heat alerts serve as triggers for cities and counties to take preventive action, like opening cooling centers where the public can gather for relief from the heat. Air-conditioning is the number-one protective factor against extreme heat, which is an essential health resource for vulnerable populations.

Staying hydrated and avoiding strenuous outdoor exercise during heat alerts can protect individuals from adverse effects of extreme heat.

Providing easy access to public drinking fountains, swimming pools, and spray pads can help keep people cool during periods of extreme heat.

Updating building codes and landscaping laws can increase energy efficiency. It also improves the ability of buildings to provide protection against extreme heat events. For example, green roofs (roofs with plant cover) and strategically located shade trees can reduce indoor temperatures and improve buildings’ energy efficiency.

Urban forests, including street trees and wooded areas, can mitigate urban heat islands, reducing local air temperatures by up to 9°F.

U.S Department of Health and Human Services Centers for Disease Control and Prevention This h s documen d docu e t waas fu funded d d tthr ded h ough ough coopera coope ative t e ag agreeme ee entt U38OT 38O O 0001 000 3 31 b betwe et een e th the eC Cente e terss fo or Disea D sease C Contr o to oll and d Preve e entio t on aand tth he Americ e can a Publi ub bl c He ealth alth Ass ssocia oc ation t o . Th he conten co te ts of of tth hiss d docum ocu ent e t are a e sole solelly th the responsib s bilit l ty o off tthe he auth authors os and do not necessarilyy repre p sent the official views of the Centers for Disease Control and Prevention or the American Public Health Association.

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Health Approaches to Climate Change:

How do health care providers and public health professionals approach climate change differently?

Health care providers offer treatment.

When individuals suffer harm as a result of climate change or climate events, they seek medical attention to treat heat stroke from rising temperatures, asthma from increased air pollution, water-borne illness from flooding, Lyme disease from expanding host habitat or injury after a devastating storm and to cope with mental wellness issues after job, family, housing or other loss or injury following an extreme weather event.

The public health field focuses on prevention, detection and management.

Public health professionals work to understand and educate the public on the health consequences of climate change; help communities prepare for climate events by providing heat wave warnings, air quality index alerts, water safety testing, mosquito control programs, storm warnings and more; and coordinate detection, tracking and management of public health emergencies.

62 Delaware Journal of Public Health - September 2021

Differences between how healthcare providers address climate change and how public health professionals address climate change, a few examples:

Health care field

Public health field

*Individual focus

*Population focus

Ex: Treating a patient for heat stroke due to the extreme temperatures of climate change.

Ex: Promoting heat wave warning systems to help communities prepare for heat waves.

*Emphasis on disease diagnosis, treatment and care for the individual patient

*Emphasis on disease prevention and health promotion for the whole community

Ex: Testing a patient for parasites following a flood/extreme rainfall or severe storm event in their community.

Ex: Monitoring and testing water for contaminants.

*Medical paradigm places predominant emphasis on medical care or treatment

*Interventions aimed at the environment, human behavior and lifestyle and medical care

Ex: A doctor providing antibiotics and/or pain medication for a patient with Lyme disease, which can be contracted later in the season and in a larger geographical area due to the warmer temperatures of climate change.

Ex: Working with mosquito control program officers to predict insect outbreak hot spots and preparing the public in those areas.

Ex: Assisting communities in implementing climate adaption plans.

Ex: Coordinating with community organizations to promote insect repellent or long-sleeved clothes.

Ex: Spreading information or holding information sessions on how to safely use insect repellent and which repellent to use.

*From: https://www.hsph.harvard.edu/about/public-health-medicine/ 63

EXTREME

RAINFALL

AND

DROUGHT

Climate change poses many risks to human health. Some health impacts of climate change are already being felt in the United States. We need to safeguard our communities by protecting people’s health, wellbeing, and quality of life from climate change impacts. Many communities are already taking steps to address these public health issues and reduce the risk of harm.

BACKGROUND When we burn fossil fuels, such as coal and gas, we release carbon dioxide (CO2). CO2 builds up in the atmosphere and causes Earth’s temperature to rise, much like a blanket traps in heat. This extra trapped heat disrupts many of the interconnected systems in our environment.

Increases in precipitation extremes, either heavy rainfall events or droughts, can impact our health. Warmer temperatures cause more water to evaporate into the air and allow that air to hold more water. This sets the stage for heavier downpours. At the same time, global temperatures inuence the way heat and moisture move around the planet, meaning drier conditions will occur in some regions of the world.

THE CLIMATE-HEALTH CONNECTION Precipitation extremes create many safety hazards and health risks.

Over the last several decades, we have already seen an increase in the number of heavy precipitation events in the U.S. These events have contributed to more severe ooding in certain regions. Floods are one of the deadliest weather-related hazards in the U.S. – second only to heat.

Other hazards can appear after a storm has passed. For example, a damp or ooded building can develop mold. Mold affects indoor air quality. Living with poor air quality and in damp conditions has been shown to increase health problems. These health problems include aggravation of asthma and other upper respiratory tract symptoms such as coughing and wheezing due to mold exposure. They also include lower respiratory tract infections like pneumonia.

People living in drought conditions may be more likely to encounter certain dangerous situations. These can range from dust storms to ash oods. Wildres associated with drought conditions greatly reduce air quality. This poor air quality affects people’s health in a number of ways. Wildre smoke exposure increases respiratory and cardiovascular hospitalizations and medical visits for lung illnesses. It also increases the need for treatments for asthma, bronchitis, and other breathing problems.

64 Delaware Journal of Public Health - September 2021

ACTIONS WE CAN TAKE TO PREPARE FOR CLIMATE CHANGE We can responsibly manage the problems facing our environment by taking sensible steps toward protecting human health and safety. Whether measures are meant to reduce future climate change impacts or address the health impacts of climate change that are happening already, early action provides the greatest health benets. It makes sense to invest in creating the strongest climate-health adaptation and preparedness programs we can.

Reducing the release of heat-trapping gases like CO2 can help protect our health and wellbeing by decreasing impacts on our climate system. Activities that reduce the amount of heat-trapping CO2 in the atmosphere are many of the same things we already know prevent health problems. Active modes of transport like biking or walking can help reduce traffic-related air pollution and encourage physical activity, which has public health benets including reduced rates of obesity, heart disease, and diabetes.

ACTIONS WE CAN TAKE TO MANAGE PRECIPITATION EXTREMES We also can take actions to prepare our communities for the present and future effects of climate change.

Some communities are already implementing effective programs to address climate-sensitive health issues associated with precipitation extremes. When it comes to managing the health threats associated with precipitation extremes, there are approaches that we know work: Land-use planning can reduce the risks associated with oods. This planning can include restricting development in ood-prone areas, and incorporating design elements that better handle storm water run-off, such as permeable paving materials.

Communities can create greenways to protect streams and ood plains. Storm water that is channeled directly into streams increases the volume of water in the stream, which creates surges in the amount of water owing through downstream communities and increasing the risk of ooding. When storm water is allowed to spread out and soak into the ground, stream ows become more even and ground water is stored.

Relocating buildings and roads that have experienced repeated ooding can reduce future risk.

Never driving through ooded roads will reduce the risk of injury or drowning.

U.S Department of Health and Human Services Centers for Disease Control and Prevention This document was funded through cooperative agreement U38OT000131 between the Centers for Disease Control and Prevention and the American Public Health Association. The contents of this document are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the American Public Health Association.

65

Investing in a Robust Environmental Health System Background and Need for Action Environmental Health is the branch of public health that focuses on the interrelationships between people and their environment, promotes human health and well-being, and fosters healthy and safe communities. As a fundamental component of a comprehensive public health system, environmental health works to advance policies and programs to reduce chemical and other environmental exposures in air, water, soil and food to protect residents and provide communities with healthier environments.

PARTNERS:

Environmental health protects the public by tracking environmental exposures in communities across the United States and potential links with disease outcomes.

To achieve a healthy community, homes should be safe, affordable, and healthy places for families to gather. Workplaces, schools, and child care centers should be free of exposures that negatively impact the health of workers or children.

Nutritious, affordable foods should be safe for all community members. Access to safe and affordable multimodal transportation options, including biking and public transit, improves the environment and drives down obesity and other chronic illnesses. Outdoor and indoor air quality in all communities should be healthy and safe to breathe for everyone. Children and adults alike should have access to safe and clean public spaces such as parks. When a disaster strikes, a community needs to be prepared and should have the tools and resources to be resilient against physical (infrastructure and human) and emotional damage. All these activities require the participation of federal, state, local, and tribal governments.

Building a Robust Environmental Health System Investing in essential governmental environmental health services through dedicated resources will create an effective environmental health system that proactively protects communities and helps everyone attain good health.

Federal, state, local, and tribal governments should adopt standard approaches to ensuring environmental health equity, protections and access for all, particularly vulnerable and at-risk populations.

The federal government can help build an effective and strong environmental health system by:    

Top 10 Focus Areas Safe Drinking Water Clean Air Vector Control Food Safety Chemical Safety Healthy Community Design Healthy Housing Climate Effects Emergency Preparedness Environmental Equity

 

CREATING AN INTEGRATED INFRASTRUCTURE TO COLLECT AND TRACK CRUCIAL INFORMATION .

DEVELOPING A WELL -TRAINED AND HIGHLY SKILLED WORKFORCE .

PROVIDING AMPLE AND SUSTAINABLE FUNDING FROM DIVERSE SOURCES .

ENSURING THAT POLICY AND PROGRAMS ARE GROUNDED IN EXISTING AND UP TO -DATE EVIDENCE -BASED RESEARCH .

ENCOURAGING /INCENTIVIZING CROSS - SECTORAL PARTNERSHIPS TO SUPPORT CONSIDERATION OF HEALTH IMPACTS. ASSURING ENVIRONMENTAL HEALTH SERVICES ARE EQUITABLY ACCESSIBLE.

A cohesive environmental health system monitors and measures diseases, hazards, exposures, and health outcomes; can collect data over time; and can present real-time data to quickly respond to emergencies and to identify problems for program planning. All government agencies should assess the environmental health impacts of their programs and policies across all sectors to improve health of all communities and people.

66 Delaware Journal of Public Health - September 2021

Recommendations Governmental environmental health services are not a luxury; they are essential to providing basic needs to the public such as safe drinking water, clean air, lead poisoning prevention, climate change adaptation, and more. Everyone should have the opportunity to achieve the highest possible level of health at all stages of life, which encompasses physical, mental, and social well-being and extends beyond the absence of disease. As such, the following recommendations support the uncomplicated right to environmental health:  PREVENTION: Enable federal, state, local, and tribal governments to promote resilient, equitable, and healthy communities for all Americans, especially those who are most vulnerable and most at risk.  RESPONSE: Build and support the governmental environmental health system, including workforce needs as well as tracking disease outcomes and environmental exposures.  REAL-LIFE SOLUTIONS: Strengthen environmental health protections and support peer-reviewed research to inform environmental health decision making and practice.

Case Examples that Demonstrate the Need for a Strong and Equitable System Environmental health professionals work every day to ensure that the air we breathe, the water we drink, and the food we eat are safe and secure. No one would want a person without a medical degree performing surgery, nor should anyone want the safety of their food or water being determined by a person who is not a highly skilled professional. Offering collaboration early on, enhancing their capabilities to detect and respond to threats, grounding policy and actions in evidence-based research, and ensuring that their services reach everyone are critical tenets of a system that can create resilient communities after a disaster.

Recent major emergencies demonstrate the need for a strong governmental nationwide environmental health system. The Zika virus outbreak, Flint water crisis, and Hurricane Katrina are three examples with stark environmental health implications. These emergencies will not be the last, so we must prepare by investing in a robust environmental health system.

Zika Virus Outbreak

Flint Water Crisis

Mosquito-borne diseases have and continue to threaten the public’s health with such illnesses as Encephalitis, West Nile Virus Disease, Dengue, Chikungunya, and now Zika Virus Disease. Zika infection - passed from an infected pregnant woman to her fetus and capable of causing devastating birth defects - also can have significant economic consequences on affected communities. There is no vaccine to prevent Zika. The best way to prevent disease-carrying mosquitoes is through community-based mosquito control and public education programs.

Environmental health actions are mobilized through Integrated Mosquito Management Programs that provide mosquito monitoring and surveillance, remove places where mosquitos lay eggs, and carefully apply pesticides to significantly reduce mosquito populations while protecting water systems and minimizing undue human and animal exposure. These actions, coupled with public education and promoting healthy housing, will undoubtedly result in reduced illness and suffering.

Due to recent, highly visible events, the safety of, and trust in our nation’s drinking water systems have been called into question. The drinking water crisis associated with lead contamination in Flint, MI, sheds a national spotlight on an issue that is occurring across the country. In Flint, due to a change in the source of the city’s drinking water without taking the necessary corrosion control steps, the safety of approximately 100,000 people’s drinking water was threatened. This resulted in the leaching of lead from the plumbing causing an increase in the blood lead levels in children consuming the water. This was a preventable situation. Strong policy with sufficient oversight and accountability supported by a skilled and resourced environmental health system is essential to monitor drinking water systems. The presence of chemical and microbial contaminants must be detected, source waters must be protected, regulations must be enforced, and surveillance systems must be in place that monitor and link water quality to human health data for rapid detection of potential public health problems.

Hurricane Katrina & Super Storm Sandy Unforgettably, Hurricane Katrina flooded the city of New Orleans in 2005, damaging more than 100,000 homes and Super Storm Sandy hit New York, New Jersey and other neighboring states in 2012, also causing devastating damage to homes and businesses, power supply systems, and other critical infrastructures such as roads. Storms like these have both acute and longer term environmental health impacts capable of causing physical, emotional, and economic harm. Understandably, the victims’ focus was on mere survival and not necessarily whether the water coming from their kitchen sink was safe to drink, whether residual mold growth in their home would impact the health of their children, or whether the reconstruction of their home would cause harmful exposures to lead or other building materials or contaminants. A strong environmental health system provides the necessary safeguards to measure, track, and respond to such concerns and mitigate the adverse health consequences.

This document was made possible through cooperative agreement 1U38OT000131 between the Centers for Disease Control and Prevention and the American Public Health Association.

The contents of this document are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

67

CLIMATE CHANGE INCREASES THE NUMBER AND GEOGRAPHIC RANGE OF DISEASE-CARRYING

INSECTS AND TICKS Climate change poses many risks to human health. Some health impacts of climate change are already being felt in the United States. We need to safeguard our communities by protecting people’s health, wellbeing, and quality of life from climate change impacts. Many communities are already taking steps to address these public health issues and reduce the risk of harm.

BACKGROUND When we burn fossil fuels, such as coal and gas, we release carbon dioxide (CO2). CO2 builds up in the atmosphere and causes Earth’s temperature to rise, much like a blanket traps in heat. This extra trapped heat disrupts many of the interconnected systems in our environment.

One way climate change might affect human health is by increasing the risk of vector-borne diseases. A vector is any organism – such as eas, ticks, or mosquitoes – that can transmit a pathogen, or infectious agent, from one host to another. Because warmer average temperatures can mean longer warm seasons, earlier spring seasons, shorter and milder winters, and hotter summers, conditions might become more hospitable for many carriers of vector-borne diseases.

!

THE CLIMATE-HEALTH CONNECTION The potential increase of harmful vectors is related to a number of health risks: The development and survival of ticks, their animal hosts (such as deer), and the bacterium that causes Lyme disease are all strongly inuenced by climatic factors, especially temperature, precipitation, and humidity. Most occurrences of Lyme disease in the U.S. are in the Northeast, particularly Connecticut. An expansion of the geographic area in which ticks can survive may lead to more people having contact with infected ticks. In regions where Lyme disease already exists, milder winters result in fewer disease-carrying ticks dying during winter. This can increase the overall tick population, which increases the risk of contracting Lyme disease in those areas.

West Nile virus is another example of a vector-borne disease that may be inuenced by climate change. Preventing people from contracting West Nile virus is important, because there are no medications to treat or vaccines to prevent this virus in humans, and recovery from severe disease may take several weeks or months.

68 Delaware Journal of Public Health - September 2021

ACTIONS WE CAN TAKE TO PREPARE FOR CLIMATE CHANGE We can responsibly manage the problems facing our environment by taking sensible steps toward protecting human health and safety. Whether measures are meant to reduce future climate change impacts or address the health impacts of climate change that are happening already, early action provides the greatest health benets. It makes sense to invest in creating the strongest climate-health adaptation and preparedness programs we can.

Reducing the release of heat-trapping gases like CO2 can help protect our health and wellbeing by decreasing impacts on our climate system. Activities that reduce the amount of heat-trapping CO2 in the atmosphere are many of the same things we already know prevent health problems.

Active modes of transport like biking or walking can help reduce traffic-related air pollution and encourage physical activity, which has public health benets including reduced rates of obesity, heart disease, and diabetes.

STEPS TO SAFEGUARD PUBLIC HEALTH We also need to take actions that make our communities less vulnerable to climate change impacts already in progress. Many communities have programs to address climate-sensitive health issues. When it comes to managing the public health threats associated with vector-borne diseases, sensible steps include: Avoiding bug bites by using insect repellent or covering exposed skin with long-sleeved shirts, long pants, and hats.

Encouraging coordination between federal, state, tribal, and local officials, such as mosquito control program officers, to predict and pinpoint possible hot spots for insect outbreaks, so that the appropriate measures to protect public health can be taken.

U.S Department of Health and Human Services Centers for Disease Control and Prevention This document was funded through cooperative agreement U38OT000131 between the Centers for Disease Control and Prevention and the American Public Health Association. The contents of this document are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the American Public Health Association.

69

WARMER WATER AND

FLOODING INCREASE THE RISK OF ILLNESS AND INJURY Climate change poses many risks to human health. Some health impacts of climate change are already being felt in the United States. We need to safeguard our communities by protecting people’s health, wellbeing, and quality of life from climate change impacts. Many communities are already taking steps to address these public health issues and reduce the risk of harm.

BACKGROUND When we burn fossil fuels, such as coal and gas, we release carbon dioxide (CO2). CO2 builds up in the atmosphere and causes Earth’s temperature to rise, much like a blanket traps in heat. This extra trapped heat disrupts many of the interconnected systems in our environment.

Climate change also affects human health by impacting the quality and safety of both our water supply and our recreational water. As the earth’s temperature rises, surface water temperatures in lakes and oceans also rise. Warmer waters create a more hospitable environment for some harmful algae and other microbes to grow. Climate change can also lead to heavier downpours and oods. Flood waters often contain a variety of contaminants. In some cases, oods can overwhelm a region’s drainage or wastewater treatment systems, increasing the risk of exposure to bacteria, parasites, and other unhealthy pollutants.

THE CLIMATE-HEALTH CONNECTION Warmer waters and ood conditions introduce a number of public health concerns.

Certain marine bacteria that make humans sick are more likely to survive and grow as oceans get warmer.

Vibrio parahaemolyticus is responsible for diarrheal illnesses linked with consuming raw or undercooked oysters from the Gulf of Mexico. Vibrio vulnicus causes vomiting, diarrhea, and abdominal pain in healthy adults. Vibrio vulnicus is more severe than Vibrio parahaemolyticus and is responsible for most of the seafood-related deaths in the United States. Both can also cause serious infections through contact with contaminated water while swimming.

70 Delaware Journal of Public Health - September 2021

Naegleria fowleri (sometimes referred to as a “brain-eating ameba”) is a microbe that can be present in soil and warm freshwater. It usually infects people when contaminated water enters the body through the nose. Infections are occurring farther north, and warming waters may increase this risk.

Heavy downpours may increase exposures to diseases in drinking and recreational water. Floodwaters can contain disease-causing bacteria. They can also contain parasites and viruses. In addition, they can become contaminated with other harmful pollutants including agricultural waste, chemicals, and raw sewage.

Flooded materials in homes, schools, and businesses can cause mold to grow and be inhaled, contributing to respiratory problems.

ACTIONS WE CAN TAKE

TO PREPARE FOR CLIMATE CHANGE We can responsibly manage the problems facing our environment by taking sensible steps toward protecting human health and safety. Whether measures are meant to reduce future climate change impacts or address the health impacts of climate change that are happening already, early action provides the greatest health benets. It makes sense to invest in creating the strongest climate-health adaptation and preparedness programs we can.

Reducing the release of heat-trapping gases like CO2 can help protect our health and wellbeing by decreasing impacts on our climate system. Activities that reduce the amount of heat-trapping CO2 in the atmosphere are many of the same things we already know prevent health problems. Active modes of transport like biking or walking can help reduce traffic-related air pollution and encourage physical activity, which has public health benets including reduced rates of obesity, heart disease, and diabetes.

ACTIONS WE CAN TAKE

TO PROTECT OUR WATER We also can take actions to prepare our communities for present and future effects of climate change. In fact, some communities are already implementing effective programs to address climate-sensitive health issues associated with water quality. Cities like Philadelphia and Chicago have initiatives to convert non-absorbent land cover (concrete) to “green cover” (plants) that more efficiently absorb water. Portland, Oregon, has updated its laws to ensure that new buildings have designs and features that manage stormwater on-site.

Sensible steps to manage health threats associated with poor water quality could include: Public health agencies monitoring and testing drinking and recreational water for harmful contaminants.

Health officials tracking disease rates to help protect communities from risks.

Local governments and utility agencies taking steps to better manage stormwater and improve drinking water quality.

Public health agencies developing and implementing climate adaptation plans.

Private well owners monitoring water quality annually.

U.S Department of Health and Human Services Centers for Disease Control and Prevention This document was funded through cooperative agreement U38OT000131 between the Centers for Disease Control and Prevention and the American Public Health Association. The contents of this document are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the American Public Health Association.

71

An Interview with Lieutenant Governor Bethany Hall-Long James Ellison, M.D., M.P.H. Geriatric Psychiatrist; Swank Foundation Endowed Chair, Memory Care and Geriatrics; Editor in Chief, Journal of Geriatric Psychiatry and Neurology

James Ellison: Lieutenant Governor Hall-Long, thank you for offering to share your thoughts about the importance of dementia and the care of affected older adults in Delaware.

Lieutenant Governor Hall-Long: I’m glad to join you today. The challenge of dementia in our state is so real.

Alzheimer’s, and of course other dementias, are among the most important healthcare challenges facing us, we need to care for Delawareans. I call them the three A’s: autism, Alzheimer’s, and addictions. These are critical brain health issues.

JE: I know that not only as a legislator, but as a former health care clinician, and as a family member, you’ve been very concerned about the welfare of people with neurocognitive disorders such as dementia.

BHL: Dementia is one of the top health concerns for our state, as you know, as it is nationally. As we see our population age increasing, dementia is increasing and its effects on quality of life can be devastating.

Delaware has been very active in studying the problem, developing a state plan, and promoting our local version of Dementia Friendly America, which is Dementia Friendly Delaware. We need to continue developing our work force in our community and in long term care – that’s a major concern – and we have mapped out some of the concerns in our Behavioral Consortium report.

JE: Delaware has been a welcoming state for older adults, hasn’t it?

BHL: Yes, in addition to our own aging population we are one of the top destinations for retirees, particularly along our coastline and our beaches. And we are committed to helping our older population remain vibrant and active. We want to keep our community healthy, because a healthy community enjoys a better quality of life, and also keeps our state’s economy healthy.

JE: You have been active in supporting public health.

BHL: Yes, I continue as a professor in public health nursing, and I remain active clinically. During the pandemic, in my nursing faculty and Delaware Medical Reserve Corps role, I administered nearly 3,000 vaccines in the arms of Delawareans up and down the state! And I have been very committed to addressing the needs of our older adults through agencies including DSAAPD [the Division of Services for Aging and Adults with Physical Disabilities], Dementia Free Delaware, DPH [Division of Public Health], and the ongoing work of the Behavioral Health Consortium, which is a think tank of Delaware citizens and also experts in health care policies and delivery. We’re really excited about Dementia 72 Delaware Journal of Public Health - September 2021

Free Delaware, which grew out of the State Plan for Alzheimer’s.

JE: Dementia Friendly Delaware offers some great services, like the nurse navigator program and caregiver support training through the SAVVY Caregiver classes, to help support the care of people with dementia in their homes and the outpatient care system.

BHL: Right, and looking to the future, it is our hope that the state’s Bridge Clinics will be able to expand services to help address the needs of our cognitively impaired elders. Care coordination is so important - whether that care is coordinated through a nurse navigator, or through effective communication in our healthcare institutions - and it’s important for our senior centers and state service centers to be on board, too, to create that necessary seamless connection among support services. Another way we can make Delaware more dementia friendly is to educate everyone who comes into contact with older adults with cognitive challenges. We are educating our community members, law enforcement personnel, as you know, and our faith leaders, and working to support our Senior Centers’ accessibility.

JE: In addition to law enforcement, which learns about dementia through the Crisis Intervention Training programs, Delaware has sponsored dementia training for lawyers, hasn’t it?

BHL: Yes, I’m delighted that Delaware’s leading the way. The Bar Association really stepped up and made available training for the attorneys, who are dealing with families who are going through some very difficult times related to dementia. It’s hard for families stressed by dementia to make the difficult decisions they sometimes have to make, and they sometimes need to rely on the assistance of attorneys. By educating our legal system about dementia, we help support families who need legal services, for example when a surrogate decision-maker or guardian needs to step in. This allows families to keep a person with dementia safer, and they don’t feel so alone with the difficult decision-making that is sometimes necessary. It also ultimately reduces the cost to our care system that might occur if we were less proactive.

Hand in hand with this, we also want our families who are caring for people with dementia to be educated and know what resources are available. Many families aren’t aware of the resources which are open to them.

In Delaware we have the helpful 211 phone number, and also services through DSAAPD and the DSAMH [Division of Substance Abuse and Mental Health] Hope Line 1-833-9-HOPEDE (833-946-7333) to help people doi: 10.32481/djph.2021.09.008

find the resources they need. And caregivers can access the SAVVY Caregiver trainings, which are available free of charge in multiple locations around the state.

Caregiver support is so important because caregivers have to remember to take care of themselves, too.

Otherwise, they can get run down and burned out. We really value our caregivers and we encourage them to use these resources that are available to them, most of them free of charge.

In addition, Delawareans should know about the Nursing Home Residents Quality Assurance Commission – they have access to the executive director at 302-824-2956. And there is also an incident complaint referral center that they can access at 1-877-453-0012.

JE: I know you have also been supportive of optimizing the quality of care for people with dementia in our Long-Term Care facilities.

BHL: The importance of Long-Term Care is pretty incredible! We want to support care at home so long as that is appropriate and safe, so if we can increase early detection and intervention, we can improve the quality of life for people with dementia and their caregiving families and reduce the overall burden, including cost, associated with this dementia. And even with the most caring families, residential care of people with dementia sometimes becomes necessary – so it’s important to have that resource available.

Quality care of people with dementia in residential facilities requires skill and education. We have learned over the years that if clinicians and frontline workers in those settings have the training, they can do a better and safer job of providing care. That was the important principle that led to House Bill 159. We wanted to make sure physicians, nurses, and others received annual training around Alzheimer’s disease and other dementias. We need to recruit more dementia experts to our workforce, but we can also upgrade the expertise of our current families and workers.

JE: Between home care, residential care, emergency room visits and hospital admissions, the cost of dementia care highlights the magnitude of the burden on families and our state that we can attribute to Alzheimer’s Disease and the other devasting dementias.

BHL: Yes, the cost of dementia care is staggering.

Recently, the American Public Health Association published a report that estimated the cost of dementia care in the US exceeds 300 billion dollars per year, much of that from Medicare and Medicaid, but also a huge cost to caregivers keeping their loved ones at home. Costs keeps rising – in 2020 it’s estimated to pass 1.1 trillion dollars. Groups like Dementia Friendly Delaware, and the Behavioral Health Consortium, and advocacy groups, and our own Delaware Nursing Home Residents Quality Assurance Commission play such important roles. We need to support home care, and Delaware needs residential facilities to meet the challenges imposed by the care of people who not only have dementia, but also behavioral symptoms that

complicate care. And we need outpatient clinicians with expertise in dementia care in order to support the evaluation and treatment of people with dementia in our primary care practices.

JE: You’ll be excited to learn that a program which supports primary care of people with dementia, the ADC (Alzheimer’s and Dementia Care) program pioneered at UCLA, is about to become available at the Smyrna and Middletown ChristianaCare primary care practices. This is a program that offers the expertise of a dementia care specialist Nurse Practitioner to support detection, care planning, treatment, and the linking of families with resources.

BHL: Oh, that’s wonderful. Integrated and collaborative care models, you know, have so much to offer – they can prevent missed opportunities for improving care and supporting families. We’ve also seen the growth of telehealth in Delaware during the pandemic, which is another way that specialists can increase their accessibility, and also supplement primary care without requiring vulnerable or frail patients to travel to a distant specialist. Reaching families in this way is an important tool in our growing toolkit. Telehealth is particularly applicable when somebody is homebound, or it would be very difficult or disruptive or dangerous for them to try and travel.

JE: Before we end, today, are there other thoughts you’d like to share?

BHL: I think of care as including pillars that structure our interventions. Quality prevention is the first, and so important for families. Then treatment resources, which need additional support from wraparound services such as attention to social determinants, appropriate and accessible housing, and availability of transportation options. And we have to keep caregivers in mind – some of them while giving care to a person with dementia, need services themselves for medical or behavioral conditions or substance use disorders. We need to think of the family unit and support system holistically and make sure the resources that are needed are available and that families know how to access them. Then, we need to strengthen our care system by building a stronger workforce in healthcare and in residential facility care. We have just lived through the tragic loss of many of our most vulnerable elders in residential care during the pandemic – an experience that really highlights the importance of considering the needs of these members of our population.

JE: Thank you, Lieutenant Governor Hall-Long, for contributing your thoughts about dementia care in Delaware. And thank you for the important work you and your colleagues are doing to make care safer and more effective for our people with dementia and their support systems.

73

Diagnosis and Treatment of Alzheimer’s Disease: An Update Emily Bomasang-Layno, M.D., M.Sc. Department of Psychiatry, ChristianaCare Rachel Bronsther, M.D. Department of Psychiatry, ChristianaCare

INTRODUCTION Alzheimer’s Disease (AD) exerts a significant worldwide impact.

An estimated 44 million individuals currently live with this Major Neurocognitive Disorder. There are about 6.2 million Americans with AD dementia today and AD kills more people than breast cancer and prostate cancer combined. The National Institute on Aging estimates that the prevalence of AD doubles every five years beyond the age of 65 and as the population ages, a greater proportion of the population is affected. AD will cost the United States over $355 billion in 2021, rising to over $1.5 trillion by 20501 imposing a significant economic burden. Early diagnosis and treatment of neurocognitive disorders are critical in determining treatment approaches and shaping policy to prepare for the deluge of cases to come. This review describes current diagnostic approaches and treatment advances for AD.

CURRENT DIAGNOSTIC STRATEGIES The evaluation of a person with suspected memory impairment includes a comprehensive set of assessments aimed at characterizing the etiology of cognitive decline and identifying treatable pathologies. These assessments include a detailed medical history, physical and mental status examinations, basic labs, and neuroimaging studies. Additional tools may also include neuropsychological testing and advanced brain imaging techniques. Once reversible causes have been ruled out, clues for specific causes of major neurocognitive disorder are sought.

A history of multiple strokes, for example, may point towards a diagnosis of vascular dementia. A history of head trauma may suggest traumatic encephalopathy. A history of prolonged alcohol use disorder may support the diagnosis of an alcoholrelated dementia. In adults over 60, the most frequent cause of progressive cognitive decline is AD.2

EMERGING DIAGNOSTICS Finding earlier and more definitive ways to diagnose AD has been the subject of significant amounts of research, and testing advances have been seen in the last decade with expanded use of positron emission tomography (PET) and magnetic resonance imaging (MRI), as well as in the identification of biomarkers in cerebrospinal fluid (CSF) and more recently serum. While limited, some of these diagnostic advances are available to the public, though typically at a high price.

A high-level overview of emerging diagnostic strategies can be found below.

Volumetric Data In simple terms, volume changes in specific brain regions can predict the likelihood of progression from mild cognitive impairment (MCI) to AD. These volume assessments can be done 74 Delaware Journal of Public Health - September 2021

by radiologists or with the help of FDA-approved MRI volumetric data software packages such as Neuroquant and Neuoreader.

Hippocampal volume changes in particular are regarded as an important AD biomarker.3 Because of limited sensitivity of this measure in diagnosing AD, however, MRI studies are regarded as a contributor to the diagnostic process but not sufficient in themselves for determining a diagnosis.4

Diffusion Tensor Imaging Diffusion Tensor Imaging (DTI) is an advanced neuroimaging technique that uses the diffusion properties of water molecules to generate magnetic resonance images that correspond to changes in macroscopic axonal organization. This technique can be used to evaluate the structure of vertical cellular micro-circuits, termed “minicolumns.” Previous studies have demonstrated that minicolumns are known to be altered in a somewhat predictable and progressive manner during aging, MCI, and AD.5 Additionally, pathologic changes of cortex columnar architecture are associated with increased plaque load and cognitive decline.6 With the aid of proprietary software, DTI can be measured and used as a marker of neurodegeneration.

PET Scan Pathologic species of two proteins, amyloid-β (Aβ) and hyperphosphorylated tau accumulate in the brains of persons with AD. PET scans are able to assess for both proteins and serve as a reliable biomarker. Amyloid accumulation precedes clinically significant cognitive changes and tau accumulation progresses in step with cognitive decline, suggesting the value of PET scans for diagnosis and measurement of disease progression.7

CSF and Blood Tests Cerebrospinal fluid (CSF), accessible through lumbar puncture, surrounds the brain. Changes in the levels of Aβ and tau proteins in the CSF develop decades before the onset of clinically significant AD.8 Among the tests of CSF developed during recent decades, the most prominent are CSF Aβ42:Aβ40 ratio and the CSF tau phosphorylated at threonine 181 (P-tau181). CSF P-tau217, measurable in the peripheral circulation, is hoped to provide a biomarker with very high sensitivity and specificity.9 Because blood is more easily accessed than CSF, C2N Diagnostics in St. Louis, Missouri has developed and released a blood test called PrecivityAD which is available in most of the U.S. and to the European Union. The test uses mass spectrometry to detect specific species of beta-amyloid in serum which are lower in AD. The test is not presently covered by insurance, representing a significant cost that may be defrayed for eligible individuals through a financial assistance program. The test is not a standalone diagnostic tool; rather the results are a probability score and are intended to be interpreted in concert with other testing means.10 Additionally, research on plasma Aβ42:Aβ40 ratio and P-tau181 suggests potential value.11,12 doi: 10.32481/djph.2021.09.009

IMPLICATIONS OF NEW DIAGNOSTIC STRATEGIES: RISKS VS. BENEFITS Benefits Although some people express the wish not to know, almost 90% of people surveyed in a large US study expressed a wish to know their diagnosis. Sixty-five percent of respondents said that even if they were asymptomatic they would be likely or somewhat likely to accept a medical test to assess for AD.13 Early detection offers the benefits of earlier access to medications, inclusion in clinical trials, the opportunity for lifestyle modification, and knowledge useful to families in preparing for the future while the affected individual remains able to participate actively in decision-making.

Risks Early detection and disclosure, however, also carry risks. The mental health effects of receiving a diagnosis are known to be significant not only for patients but also for families. Multiple studies have documented a small increase in death by suicide in those with dementia, most prominently during the first three months after a diagnosis was made.14 This suggests the need for increased mental health support and monitoring particularly in the early months after a diagnosis is given, as well as the importance of educating family about suicide risk.

As treatment options for early stage dementia increase, the benefits and risks of early diagnostic assessment will become a matter of great significance.

CURRENT THERAPEUTIC STRATEGIES AND OPTIONS Several mechanisms have been proposed to account for the pathology of AD, and current treatments counteract these mechanisms. The most widely accepted disease models are the amyloid cascade hypothesis, the tau hypothesis, the cholinergic hypothesis, and the excitotoxicity hypothesis.

Our current AD medications were developed to address the cholinergic deficit that occurs early in AD. The selective loss of cholinergic neurons, an early pathologic finding in AD, results in a profound reduction in the neurotransmitter acetylcholine, which affects learning and memory neuronal circuitry.

Facilitating cholinergic transmission was therefore an early approach to AD treatment which resulted in several palliative medications still in use.15–17

Cholinesterase Inhibitors The primary action of the cholinesterase inhibitors is the reversible inhibition of cholinesterase, the enzyme which breaks down acetylcholine in brain synapses, thereby prolonging the effect of the diminished level of brain acetylcholine.18,19 Three cholinesterase inhibitors are currently used: donepezil, rivastigmine, and galantamine. Meta-analyses have shown that these agents delay decline in cognitive function, slow the decline in global clinical rating, and may delay the decline of activities of daily living (ADL) and emergence of adverse behaviors, as much as 6 to 12 months on average.20,21 Significant side effects include gastrointestinal symptoms, dizziness, vertigo, fatigue, insomnia, hallucinations, bradycardia, syncope, and muscle cramps.15 Donepezil is a reversible non-competitive acetylcholinesterase inhibitor shown to affect cognitive function, activities of daily living, and global clinical status. Benefits for the 10 mg dose

appear marginally larger than for the 5 mg dose. A larger 23-mg dose form is available, with disputed clinical advantages.20 Rivastigmine is a pseudo-irreversible inhibitor of acetylcholinesterase and butyrylcholinesterase and acts by binding to two active sites of acetylcholinesterase. It is called pseudo-irreversible because it dissociates slower than acetylcholinesterase.20 Adverse effects of the oral preparation are significant, but the transdermal form is more tolerable for many patients, although it can cause dermatologic reactions.22,23 Galantamine is a reversible competitive acetylcholinesterase inhibitor and modulator of nicotinic acetylcholine receptors.15 Theoretically, this agent will have greater effect in areas of the brain with low levels of acetylcholine.24 Its effects are similar to those of the other cholinesterase inhibitors.24

NMDA Receptor Antagonist Overstimulation of glutamatergic activity in the brain results in an excitotoxic overload of calcium flux into neurons through N-methyl-D-aspartate (NMDA) receptor ion channels.25,26 Excitotoxicity leads to a gradual loss of synaptic function and eventual neurodegeneration, correlating with the progressive decline in cognition and the pathological anatomy seen in AD.27 The NMDA receptor plays a critical role in glutamate synaptic transmission and in synaptic plasticity, thought to underlie learning and memory.28 Memantine, a low-affinity NMDA receptor antagonist, modulates NMDA receptors to reduce glutamate-induced excitotoxicity and is thought to palliate cognitive decline associated with AD in this way.27,28 Memantine is FDA-indicated for moderate to severe AD.29 It has been shown to improve activities of daily living scores, global function assessment scores, and stage of dementia assessment scores.30,31 It has also been suggested that it can be efficacious in reducing delusions, agitation/aggression, disinhibition, and diurnal rhythm disturbances.32 Although benefit is clear, its magnitude is modest.31 It is available as immediate and extended-release formulations, and as part of a combination pill with donepezil.15 The combination of a cholinesterase inhibitor with memantine appears to have synergistic benefits so it is a standard practice in the treatment of moderate to severe AD.33

Emerging Treatments The search for disease-modifying AD therapies has led to the development of medications which target the pathologic forms of amyloid beta (Aβ) protein and tau protein associated with this disease.34 The amyloid cascade hypothesis proposes that toxic forms of Aβ protein leads to neuronal death and synaptic dysfunction. Aβ pathology is an early finding in the disease.34,35 The tau pathology has been shown to correlate more specifically with the progression of cognitive impairment.36,37

TARGETING AMYLOID PATHOLOGY The neurodegenerative effects of AD are attributed in part to the effects of beta amyloid and hyperphosphorylated tau, though newer theories raise additional possibilities. Amyloid plaques and tau-containing neurofibrillary tangles remain necessary for a pathological diagnosis of AD.38 Several familial forms of AD have been linked to genetic mutations which alter the production of amyloid. CSF biomarker studies have also shown that Aβ42 peptides decline one to two decades prior to onset of symptoms in AD.39 Although insoluble aggregates and soluble dimers of 75

amyloid have been demonstrated to cause synaptic toxicity, the soluble aggregates are considered to correlate better with symptoms of AD and disease severity.40 Therapeutic agents have been developed to reduce different forms of pathologic Aβ, interrupt Aβ aggregation, or increase Aβ clearance from the CNS. Many tested agents, however, have failed to demonstrate efficacy and some have even caused worsening of cognitive or physical symptoms, raising questions about the amyloid hypothesis.41 Newer research techniques seek to improve drug evaluation by assuring that adequate measures are used and appropriate subjects enrolled in clinical trials.42

Passive Immunotherapeutics Following the early failure of a vaccine intended to develop a beneficial immune response in persons with AD, researchers developed passive immunotherapeutic agents: monoclonal antibody solutions created in biological systems for infusion into human subjects.43 The objective is to reduce peripheral and central effects of Aβ42.44 Several passive immunotherapeutic agents have failed clinical trials, but others remain in testing.

Aducanumab (BIIB037) is a human anti-Aβ monoclonal antibody that selectively targets aggregated forms of Aβ, including soluble oligomers and insoluble fibrils. Given as an infusion, aducanumab enters the central nervous system and decreases Aβ in prodromal or mild AD with Aβ PET-confirmed pathology, in a time and dose-dependent manner. Significant plaque reduction has been demonstrated. The main safety finding has been dose-related amyloid-related imaging abnormalities – edema/ effusion (ARIA-E) which are more common among Apo-E4 carriers. In subjects who received the highest dose of 10 mg/kg, researchers reported a significant decline in the progression of cognitive impairment (on the CDR-Sum of Boxes).45 In June of 2021, aducanumab was approved by the FDA for treatment of AD with the stipulation that a phase IV trial carefully assess its efficacy and safety. Subsequently, amidst some controversy about the accelerated approval process which occurred despite limited evidence of treatment benefit, the FDA revised the medication’s indication to target its use toward AD-related mild cognitive impairment or mild dementia.

Lecanemab (BAN2401) is a humanized IgG1 version of a mouse monoclonal antibody which selectively binds to large soluble Aβ protofibrils. Lecanemab has been shown to slow cognitive decline, increase CSF levels of Aβ (which drop in AD), and reduce total tau levels46 but further validation of current findings is needed to address concerns about the methodology of the initial studies.

Three clinical trials are currently in progress, looking at efficacy and safety among AD subjects (NCT03887455); efficacy and safety among early preclinical and preclinical AD subjects with early and intermediate amyloid (NCT04468659); and safety, efficacy, and tolerability of different dose levels among early AD patients (NCT01767311).

Donanemab (LY3002813) is an immunoglobulin directed towards a molecular target present only in brain amyloid plaques.

In a phase II trial among early AD subjects, there was some improvement in composite cognition scores and ability to do activities of daily living (ADLs), but secondary outcomes did not show a significant difference. ARIA-E were observed but were noted to be asymptomatic.47 A dose escalation study of single and multiple doses explored safety and tolerability and showed 76 Delaware Journal of Public Health - September 2021

40-50% amyloid reduction and 90% of subjects developed drug antibodies at three months after a single dose.48 Gantenerumab, an additional monoclonal antibody in testing, has a 20-fold higher affinity for Aβ oligomers than monomers.49 The earlier phase II trial was terminated for futility but there were dose-dependent effects observed indicating that higher doses may be necessary for efficacy.50 An analysis of a PET sub-study suggests that at higher doses, there is a robust reduction of amyloid at two years.51 There are currently ongoing trials evaluating pharmacodynamics of subcutaneous administration (NCT04592341); safety and tolerability of longterm administration (NCT04339413); safety and efficacy among early AD subjects (NCT03443973, NCT03444870); and safety, tolerability, biomarker, and cognitive efficacy among genetic early onset AD (NCT01760005).

Crenezumab is a monoclonal antibody which binds to monomers and aggregated forms of Aβ with a 10-fold higher affinity for oligomers.52 Earlier clinical trials did not meet clinical endpoints but there was note of a reduction in clinical decline in the higher dose group, as with gantenerumab.53 Ongoing trials currently are evaluating crenezumab and its effect on tau burden among presenelin mutation carriers and noncarriers (NCT03977584) and efficacy among preclinical AD (NCT01998841).

BACE Inhibitors β-site amyloid precursor protein cleaving enzyme (BACE) is an enzyme which performs the initial step in Aβ formation.41 Several agents have been developed to block BACE activity in order to reduce Aβ accumulation.

Clinical failures of BACE inhibitors among persons with mild to moderate AD and prodromal AD have occurred with lanabecestat (AZD3293, LY3314814), atabecestat (JNJ-54861911), and verbecestat (MK8931). Elenbecestat (CNP520) was the last remaining BACE inhibitor evaluated to potentially slow down the onset and progression of clinical symptoms associated with AD (NCT02565511). The trial was discontinued for safety concerns.54 BACE inhibitors are successful in inhibiting Aβ formation but they have not been shown to produce cognitive, clinical, or functional benefit in large randomized controlled trials (RCT).

Indeed, several BACE inhibitors were found to be poorly tolerated and some of them failed also in patients with prodromal AD. To some investigators, the failure of BACE inhibitors casts doubt on the value of blocking the formation of toxic Aβ in persons with AD.55

Anti-Aggregation Agents Another approach to interfering with the amyloid cascade is to block the aggregation of Aβ into oligomers and fibrils into amyloid plaques which may trigger the synaptic dysfunction and neuronal loss in AD. The soluble oligomers are considered the pathogenic form of Aβ associated with neurodegeneration.56 Scyllo-Inositol (ELND005) has been shown to neutralize toxic effects of Aβ oligomers, including amelioration of oligomerinduced synaptic loss.57 It is also thought to directly affect both Aβ clearance and myo-inositol regulation to improve cognitive function.58 Its efficacy outcomes in mild to moderate AD, however, have not been found to be significant.59 No ongoing trials are addressing its effect on earlier AD stages.

ALZ-801 is an improved prodrug of tramiprosate thought to inhibit the formation of amyloid oligomers without plaque interaction.60,61 It selectively blocks the formation of Aβ oligomers with some clinical efficacy among high risk APOE carriers at a high dose and a dose dependent preservation of hippocampal volume. This is an oral agent which has been shown to have adequate CNS penetration.60,62 Ongoing trials are looking into the effect of ALZ-801 on biomarkers (NCT04693520) and efficacy and safety (NCT04770220), both in APOE carriers.

TAU DIRECTED THERAPIES The lack of clear efficacy of amyloid-based therapeutics has led investigators to explore other upstream pathological processes involving other targets.46 Tau, a microtubule binding protein which forms neurofibrillary tangles (NFTs), is another histopathologic hallmark which characterizes AD. The accumulation of tau has been found to correlate more closely with severity of dementia than does amyloid load. There is evidence that Aβ accumulation can exacerbate tau pathology and vice versa.63 Tau protein has also been found to at least partially mediate some of the toxic effects of Aβ leading to synapse loss, dendritic simplification, and eventual cell death in AD.34 Initial approaches for tau-based therapies have focused on inhibition of kinases or tau aggregation or stabilization of microtubules. Most of these studies have been discontinued due to toxicity or lack of efficacy.64 Current trials are focused on tau immunotherapies.

Post-translational modifications and consequent loss of microtubule binding and tau misfolding lead to elevated levels of tau in the cytosol, making these processes viable targets.34,64 Other significant targets include cytoskeletal disruption and impairments in protein degradation mechanisms.64

Inhibition of Tau Aggregation Methylene Blue (MB) is a long-established medication with broad utility in many conditions due to its role in promoting mitochondrial activity as well as mitigating neuroinflammation.65 In animal models, MB has been shown to reduce Aβ levels and improved learning and memory thought to be mediated by an increase in Aβ clearance.66 It has been found to reverse tau aggregation67 and to promote clearance of tau filaments by inducing autophagy.64 Although some efficacy was noted in improving cognition and reducing tau pathology in animal studies, it has not demonstrated significant benefits in human trials. This has been attributed to MB reducing the number of tau fibrils but increasing the number of granular tau oligomers, which are thought to be essential for neuronal death.68 Curcumin is a natural plant product derived from turmeric root, with antioxidant and anti-inflammatory properties. It directly binds to β-pleated sheets of proteins and prevents aggregation.69 Like MB, it has also been shown in animal studies to reduce tau and Aβ pathology and ameliorate cognitive deficits.64 Previous trials have not shown any significant cognitive effects.70 A recent trial involving a small population showed only modest results (NCT01383161). The clinical development of curcumin as a therapeutic agent has been hindered by concern about bioavailability, poor water solubility at neutral or acidic pH, instability at basic pH, and rapid intestinal and first pass glucuronidation.69

Post Translational Modifications Protein phosphatase 2A (PP2A) is a protein that regulates signaling pathways. Sodium selenate is an antitumor agent which has been found to be a potent PP2A activator and reduces phosphoprylation of tau in animal studies in TBI71 and AD.72 In a phase IIa trial,73 it was found to be safe and well-tolerated but there were no subsequent efficacy trials. A recent trial utilized sodium selenate as an oral supplement to potentially slow down neurodegeneration, based on the hypothesis that insufficient selenium supply to antioxidant enzymes may contribute to AD pathophysiology.74 CDK5 inhibitors (flavopiridol and roscovitin) were developed primarily in oncology to prevent cell death. They compete with ATP for binding with CDK5, resulting in reduced activation of this kinase.75 They have not been tested for neurodegenerative diseases although it has been thought that cell cycle progression and/or mitosis may be valid targets for AD.76 Glycogen synthase kinase (GSK) 3β is highly expressed in the brain and has been implicated in tau phosphorylation. It is considered an important drug target due to its high specificity as a substrate.77 Tideglusib is an irreversible GSK3β that does not compete with ATP. A phase II trial on mild AD subjects, however, showed tideglusib to have no clinical benefit.78 An additional phase II trial showed no benefit to subjects with progressive supranuclear palsy (PSP). Lithium is another inhibitor of GSK3.

Studies among patients with MCI and AD have been limited, but a reduction in phospho-tau levels were noted and one study showed stabilization of cognitive symptoms. In a meta-analysis of 5 RCTs on GSK 3 inhibitors, however (two trials on Tideglusib and three trials on lithium), GSK3 inhibitors were deemed ineffective in treating MCI and AD as the studies were found to be too small.79

Microtubule Stabilization Compounds that stabilize microtubules may have therapeutic potential as the disruption of microtubule-based transport mechanisms contributes to synaptic degeneration.80 Epithilone D (BMS-241027) is a small molecule able to penetrate the blood brain barrier. It was found to increase microtubule numbers and reduce the number of axons in animal studies.34 There was also note of improved cognition and reduced tau pathology in mouse models but the phase I clinical trial was discontinued in 2013 (NT 01492374).

TPI 287 (Abeotaxane) is another microtubule stabilizing compound which was initially found to reduce hyperphosphorylated tau in the brain and to improve performance in animal models. It was subsequently trialed in patients with AD, progressive supranuclear palsy, and corticobasal syndrome. Severe hypersensitivity reactions, however, were observed in AD patients and clinical worsening and biomarker changes were seen in PSP and corticobasal syndrome.81 Davenutide (NAPVSIPQ) is an 8-amino acid peptide derived from activity-dependent neuroprotective protein (ADNP). ADNP deficiency is thought to lead to tauopathies.34 In animal models, davenutide was found to play a positive role in attenuating Aβ1-42-induced impairments in spatial memory and synaptic plasticity.82 It is thought to stabilize microtubules and reduce hyperphosphorylated tau levels.83 In a phase I trial, it was found to be well tolerated given intranasally among patients with MCI. Although there was note of potential efficacy in two tests of memory and attention, the study failed to detect a statistically significant difference on composite cognitive memory scores.84 77

Tau Immunization Approaches Active and passive immunization against phospho-tau peptides have the potential to modulate tau pathology. Antibodies pass through the blood brain barrier and enter the brain.34 One candidate active vaccine is AADvac1 which targets nonphsophorylated tau. In its phase I trial, patients were given 3 doses of the vaccine. Almost all developed an IgG immune response. The most common adverse effect was injection site reactions. There were no cases of meningoencephalitis or vasogenic edema after administration.85 A follow-up study was done on the same population and given three more doses plus two boosters with the primary objective being the determination of long-term safety. The most common adverse event was again local injection site reaction. Again, no cases of meningoencephalitis or vasogenic edema were observed. New micro-hemorrhages were observed in one Apo E4 homozygote.

IgG titers did regress over time indicating the need for more frequent boosters. A tendency towards slower atrophy on MRI was observed and there seems to be a slower decline on cognitive assessment in those with higher titers.86 ACI-35 is another active vaccine that targets phosphorylated tau.87 In animal studies, there was note of reduction in soluble and insoluble tau. The vaccine also did not induce marked CNS inflammation despite the multiple epitopes.75,88 A phase Ib-IIa trial is currently ongoing to determine safety, tolerability, and immunogenicity. It is expected to complete by 2023 (NCT04445831).

PASSIVE IMMUNIZATION Passive immunization potentially provides a possible solution to concerns about immunologic side effects with active immunization. There is greater specificity for the target epitope and the effects of immunization are likely to be transient.75 Anti-tau antibodies have been shown to enter neurons and bind to a cytosolic receptor which eventually leads to proteosomal degradation of the complex and inhibition of intracellular tau aggregation.89–91 RG7345 (RO6926496) is an antibody that recognizes tau phosphorylated at Ser422. Tau phosphorylated at this site is considered pathological.92 It has been shown to enter neurons and reduce tau pathology, but this trial was discontinued by Roche likely due to some pharmacokinetic issues (NCT02281786). No apparent safety or efficacy concerns.75 Gosuranemab (BIIB092) is an IgG4 monoclonal that recognizes a site in the N-terminal region. It was found safe and welltolerated with no adverse effects in the low and moderate dosage arms. Unbound N-terminal tau in the CSF was reduced but AD biomarkers were not reduced.93,94 There is currently a phase II trial for those with MCI and mild AD assessing safety and tolerability plus immunogenicity and efficacy of multiple doses in slowing cognitive and functional impairment (NTC 03352557). Expected completion of the study is in 2024.

Tilavonemab (ABBV-8E12, C2N-8E12) is an IgG4 antibody intended to work extracellularly. In vitro, this blocks uptake and inhibits seeded tau aggregation.63 No adverse reactions 78 Delaware Journal of Public Health - September 2021

were reported among PSP patients in phase I. Phase II trials included both PSP patients and AD patients. The trials for PSP were discontinued. The trials for AD patients, however, are still ongoing with the extension study expected to conclude July 2021 (NCT02880956, NCT03712787).

Zagotenemab (LY3303560) is a humanized version of the IgG1 antibody MC-1 with its primary epitope located in the N-terminal region.63 The initial phase I trial evaluated safety, tolerability, and pharmacokinetics in healthy individuals (NCT02754830) and among those with mild to moderate AD (NCT 03019536).

A phase II trial is underway evaluating efficacy among early symptomatic AD patients (NCT03518073). Study completion is estimated to be in October 2021.

Semorinemab (RO7105705, MTAU9937A) is an antibody designed to bind and intercept tau in the extracellular brain, blocking cell-to-cell spread.63 Initial phase I results showed no dose-limiting toxicities and no serious adverse effects.

The antibody was also detected in CSF.95,96 The phase II trial on prodromal to mild AD was completed January 2021 and primary endpoints were safety measures and CDR-Sum of Boxes (NCT3289143). The phase II trial on moderate AD is still ongoing at this time (NCT03828747).

BIIB076 (NI-105, 6C5 hulgG1/I) is a human IgG1 recombinant monoclonal antibody. Intravenous and subcutaneous forms were assessed up to 26 times highest predicted dose. Drug levels were measured in the serum and tau levels were measured in the CSF. No adverse effects noted.92 The phase I trial on ascending doses given to healthy volunteers and AD patients monitored adverse events as well as pharmacokinetics (NCT03056729). This study was completed in March 2020 but no results have been posted or published.

JNJ-63733657 is an IgG1 antibody with affinity for the paired helical filament.63 It recognizes an epitope in the mid region of tau. The phase I trial of ascending doses in healthy participants found this antibody to be generally safe and well-tolerated (NCT03689153). A second phase I ascending dose study was completed in December 2019 (NCT03375697) with no results posted yet. A phase II trial on efficacy and safety in early AD is currently ongoing and expected to complete by March 2025 (NCT04619420).

Bepranemab (UCB0107) is likely an IgG4 (Alzforum.org 2019b).

It also binds to the mid-region of tau, like JNJ-63733657.92 Two phase I clinical trials were completed in 2018 and 2019 (NCT03464227, NCT 03605082). There are two other phase I trials involving safety and tolerability in PSP patients. The phase II study involving AD patients is not yet recruiting at this time (NCT04867616).

TREATMENT OF NONCOGNITIVE SYMPTOMS OF DEMENTIA Noncognitive symptoms of dementia (NCSD) are symptoms that contribute significantly to functional decline, caregiver burden, and eventually, the decision for institutionalization.97 Early treatment, therefore, is essential. These symptoms present intermittently or persistently. The most prevalent and stable is apathy. Other symptoms include depression, anxiety,

irritability, and psychosis. The four key symptoms of wandering, aggression/agitation, delusions, and irritability have been found to be associated with more severe illness.98 Nonpharmacologic approaches are designated as the first line approach for treatment. Pharmacological interventions have been prescribed as well and are often seen as more expedient, though with variable benefit. Their use is complicated by adverse effects, dose-dependent increased mortality, and limited supporting evidence.99–101 The concern for risks associated particularly with antipsychotic use has resulted in boxed warnings by the FDA for atypical and conventional antipsychotics.99 Furthermore, none of these pharmacologic agents have been indicated for this use by the FDA so their use is off-label. The American Psychiatric Association’s (APA) guideline on antipsychotic use to treat agitation or psychosis in dementia recommends that antipsychotics be used when symptoms of agitation or psychosis are severe, dangerous, or cause significant distress to the patient, titrating doses only to the minimum effective dose, and to taper and withdraw once an adequate response is achieved.102 Ultimately, among the antipsychotics, there is no single agent that is able to provide both efficacy and safety emphasizing the need to individualize treatment based on a careful balance of benefits and adverse effects.103

has behavioral effects and modulates of neuroinflammation and oxidative stress, so these receptors are a potential drug target.115 Nabilone, a synthetic oral THC which is a partial agonist at CB1/2 receptors, is thought to potentially have some efficacy for agitation in moderate to severe AD.116 In a recent RCT evaluating nabilone efficacy and safety, it was found to be effective for agitation, although with some dose-related sedation. Observational studies have also shown promising results, particularly in cases with refractory symptoms.117 Two of three recent meta-analyses were unable to show conclusive results for cannabinoid efficacy in the treatment of agitation or aggression.118,119 The most recent meta-analysis, however, was able to show significant improvement in different NPS instruments and efficacy was associated with baseline dementia severity and dose.120

Serotonergic antidepressants offer a more promising pharmacologic approach to the treatment of NCSD. Citalopram, a selective serotonin reuptake inhibitor (SSRI), has been shown to have some efficacy for agitation in dementia.104 In a placebo controlled, double blind RCT, citalopram was found to meaningfully reduce agitation and caregiver distress. Some associated cognitive decline and cardiac side effects (QTc prolongation), however, hamper its long-term use.105,106 Results suggest that citalopram needs to be given at least nine weeks to allow enough time for a full response.107 The evidence for its use for this indication, nevertheless, remains compelling, and potentially could be a class effect for all SSRIs.108,109

Prazosin is a centrally acting alpha 1 receptor antagonist indicated for hypertension and symptoms of benign prostatic hypertrophy.

It readily crosses the blood brain barrier and in a small doubleblind trial, it has shown efficacy for agitation among patients with moderate AD using a flexible dosing titration up to a maximum of 6 mg TDD. It was also well tolerated.123 A completed but unpublished second trial looked into the efficacy of a fixed dose of 4 mg twice daily given for a longer period of study (NCT01126099). A phase III trial is ongoing to evaluate efficacy and dose titration (NCT03710642).

Some additional novel and/or repositioned agents are being studied as treatments for agitation in dementia.99 Four will be discussed here.

Dextromethorphan is a sigma-1 receptor agonist which has some mood-modulating properties.110 It is also a low affinity NMDA antagonist, a serotonin and norepinephrine reuptake inhibitor, a histamine H1 receptor agonist, and a neuronal nicotinic alpha-3 beta-4 receptor antagonist.99,111 Quinidine and deuteration appear to prolong dextromethorphan’s plasma half-life, reduce first pass metabolism, and facilitate brain penetration.112 Deuterated (d6)-dextromethorphan/quinidine (AVP-786) is currently being evaluated as a treatment for agitation in people with AD.113 Two phase III trials evaluating efficacy, safety, and tolerability have been completed, NCT 02442765 (February 2020) and NCT 02442778 (August 2020). The two trials reportedly showed mixed findings and failed to confirm the anti-agitation effect, probably due to differences in study design.113,114 Four ongoing trials are currently recruiting subjects (NCT04464564, NCT04408755, NCT03393520, NCT02446132).

Cannabinoids like tetrahydrocannabinol (THC) are agonists at cannabinoid receptors 1 and 2. Cannabinoid receptor activity

Brexpiprazole is a partial receptor agonist (D3, D2, 5HT1A) and receptor antagonist (5HT2A, alpha 1B/2C) which has been shown in phase II trials to be effective for agitation in patients with AD with improved safety profile compared with other second generation antipsychotics.121,122 Of note, brexpiprazole on a slow titration schedule, had higher efficacy and tolerability.

There are several ongoing phase III trials (NCT03594123, NCT03724942, NCT03548584, NCT03620981) to evaluate long term use, safety, efficacy.

Mirtazapine (NCT03031184, completed 06/2020) and lithium (NCT02129348, completed 01/2020) have also been evaluated for agitation in AD but results have yet to be published.

Escitalopram is being reevaluated for agitation as well (NCT03108846, ongoing recruitment).99

PUBLIC HEALTH IMPLICATIONS We may be standing at the brink of a new era of AD diagnosis and treatment, a development which will have significant public health implications. If early detection becomes a reality, the detected individuals will burden an already stressed system by new care needs. Resources may need to be directed at increasing public awareness of the health implications of dementia.

Dissemination of information about the effectiveness of treatments will be needed as well as work to remove the stigma associated with mental health disorders and the stigma of being treated for them. Furthermore, overall access to mental health services needs to be improved.124,125 The current advances should inspire hope, however, that many cases of dementia can be delayed or prevented as a result of earlier detection, lifestyle modifications, and new treatment approaches. We are on the verge of a paradigm shift in the way we approach AD. 79

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Cannabinoids for the neuropsychiatric symptoms of 85

My Loved One Has Dementia; Is In-Home Care An Option?

Anne Eidschun, C.S.A. Director/Owner, Griswold Home Care; Board Member, Delaware Association of Home and Community Care Jamie Ramage President/Owner, Comfort Keepers; Board Chair, Delaware Association of Home and Community Care

Caring for a loved one who is experiencing some level of dementia can become an overwhelming responsibility for any family member. There is no scholarly approach or analytical research that can provide answers to the questions about the road ahead that will tug at our hearts in a profound way. Decisions can only be made after you have information, guidance and support from a variety of resources. This article is a “Home Care and Dementia 101” course to help you begin this journey. The links provided to various resources can help “peel the onion” for those areas of particular interest based on your family circumstances.

WHAT DO I NEED TO KNOW ABOUT CAREGIVING AND DEMENTIA? According to the 2021 Alzheimer’s Disease Facts and Figures,1 the number of individuals with Alzheimer’s will increase from 58 million in 2021 to 88 million by 2050. In Delaware the number of people 65 and older with Alzheimer’s is noted at 19,000 in 2020 and this number is projected to increase to 23,000 by 2025.

Studies indicate that individuals with Alzheimer’s live an average of 4-8 years after diagnosis and it is possible that many will live as long as 20 years.

Approximately two thirds of dementia caregivers are women, 30% are age 65 or older; over 60% are married; over one half of caregivers are providing assistance to a parent or in-law with dementia. About 10% of caregivers provide help to a spouse with dementia. Approximately one quarter of dementia caregivers are those of the “sandwich generation” i.e., caregivers that are caring not only for an aging parent, but also for a child.2 This range of life expectancy means that the advancement of the disease can be a slow and uncertain progression leading to uncertainties as to the level of care that will be needed. Help may begin as “once in a while” assistance and then possibly escalate to 24/7 care over the period of years, which can be a difficult road map to manage. For family members providing the care, it may also impact their finances as well as the financial security of their loved one.

83% of the help provided to older adults comes from family members, friends and other unpaid caregivers. Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.

More than 11 million Americans provide unpaid care for people with these diseases. In 2020, caregivers of people with Alzheimer’s or other dementias provided an estimated 15.3 billion hours of informal (unpaid) assistance valued at $256.7 billion. 70% of the lifetime cost of care is borne by a family of caregivers in the forms of unpaid caregiving and out of pocket expenses. In Delaware, the number of unpaid caregivers of those with dementia is 46,000 and the hours of care equate to 67 million which is a total value of unpaid care of $1,141,000,000.2 86 Delaware Journal of Public Health - September 2021

MY LOVED ONE IS BEING DISCHARGED FROM A HOSPITAL OR REHABILITATION FACILITY. WHAT NOW? When your loved one is discharged, you and/or designated family members will be invited to a planning meeting with a team of professionals. The team will likely include a Social Worker, Physical Therapists (PT) and Occupational Therapists (OT), a nurse who is familiar with the patient, and a representative from a home care agency you may have selected to support the caregiving needs. Hospice may be involved if appropriate, and the doctor will have provided information to the staff prior to the meeting. The discussion will include personal care needs, PT and OT that may be provided in the home, and the need for durable medical equipment. The discharge team may recommend 24/7 care in the beginning, with the understanding that the hours can always be reduced.

The goal is to be certain that the discharge plan will result in maximum safety for the patient until your loved one is reacclimated to the home environment.

It is important to let the hospital or facility know if family members will be providing the needed care, since that will impact whether this person can be safely discharged. You also need to know if your loved one is sleeping throughout the night, if there are any new behaviors you need to be aware of, and if the care team thinks that your loved one can be left alone for any period of time. These are important questions since they will determine if the family can handle the caregiving on their own.

If you do decide that help will be needed from a professional home care agency, it is best to plan in advance of the discharge.

Regardless of the decision, having a plan is what is important. As Benjamin Franklin said, “If you fail to plan – you are planning to fail.” Planning is everything and it is wise to be educated about all your options.

WHAT DO I NEED TO KNOW ABOUT THE QUALIFICATIONS OF A PROFESSIONAL CAREGIVER? There are more than 100 licensed home care agencies in Delaware, encompassing different levels of licensure. Most home care agencies are licensed as Personal Assistance Services Agencies (PASA), which employ Direct Care Workers to provide nonmedical assistance. They may employ Certified Nursing Assistants or Home Health Aides, but it is not a license requirement. Home Health Aide-Only (HHAO) and Skilled Care licensed agencies only employ caregivers who have completed Home Health Aide or Certified Nursing Assistant training prior to their employment with the agency or have been employed by a Delaware facility overseen by Registered Nurses. Skilled Care agencies also employ therapists and Nursing staff (RN, LPN) to provide a higher level doi: 10.32481/djph.2021.09.010

of medical care in the home. Hospice agencies also can provide aide and nursing care in the home among other services. For a complete list of licensed agencies visit: https://www.dhss.delaware.gov/dhss/dhcq/ohflcmain.html

WHAT COMMUNITY RESOURCES ARE AVAILABLE AND HOW DO I INTEGRATE THEM INTO THE CARE PLAN?

Dementia specific training is an annual requirement for all Delaware agencies. It must include the following:

We are fortunate in Delaware to have many community resources to help caregivers and their loved ones who suffer from dementia.

Here are a few that you can research further based on interest.

• Communicating with persons diagnosed as having Alzheimer’s disease or other forms of dementia; • The psychological, social, and physical needs of those persons; and • Safety measures that need to be taken with those persons.

Other considerations when selecting a homecare agency include:

The Alzheimer’s Association provides information and support to people impacted by this disease. Services include information on caregiver support groups, caregiver training, newsletters and devices and programs to assist with the challenges of wandering. They also staff a 24-hour helpline (1-800-272-3900).

The Delaware Valley Chapter has an office in Wilmington and Georgetown. https://www.alz.org

1. How many caregivers will be assigned to my loved one?

2. Can I meet a caregiver ahead of time prior to having services?

3. What if I do not like the caregiver that you send to my home for assistance?

4. What happens if a caregiver calls out sick or does not show up for the scheduled shift?

5. What services are you able to provide according to your license? What can you not do?

WHAT CAN I EXPECT PROFESSIONAL CAREGIVERS WILL DO DURING THE HOURS THEY ARE PROVIDING CARE? As for any client, caregivers can assist with Activities of Daily Living (ADLS) and Instrumental Activities of Daily Living (IADLS). The ADLS include help with personal care such as toileting, bathing, dressing and mobility supervision. The IADLS may include everyday tasks such as laundry, meal preparation, light housekeeping, and errands. For clients with dementia, there is also a component of continually managing the behaviors of the disease, such as wandering, agitation, and anxiety, among others.

Caregivers who have dementia training understand how to keep a client engaged in conversation and cue them through the steps of the activity to be performed. They know how to manage unpredictable behaviors through redirection in order to accomplish tasks at hand, and keep both the client and themselves safe.

Most important for the dementia client is overall engagement.

Caregivers should understand what is meaningful to your loved one so that they are engaged. Engagement is different for every person and you want to be certain that the care plan meets your expectations and is appropriate for your loved one. It is helpful to develop an inventory about your loved one so that everyone who interacts with them knows something about them. Write things down that you want a caregiver to know about your loved one. An “About Me” document can include such things as your loved one’s favorite foods/snacks, hobbies, TV shows, games, places to visit, favorite clothing items, names of best friends, music they like, etc. When helping a client with dementia, knowing these types of things can help provide a roadmap for the caregiver so that they can more effectively interact with your loved one.

The Swank Center for Memory Care and Geriatric Consultation at Christiana Care is a comprehensive outpatient clinic for assessment of patients with neurocognitive disorders. The Swank Center’s clinicians are also a helpful source of resources for families of people with dementia. The professional staff works closely with primary care providers and additional specialists to develop an optimal plan for care. The Swank Center’s mission is to be a source of support for patients, their primary care treatment team, and family caregivers. More information can be found at https://www.christianacare.org Jewish Family Services of Delaware provides mental health counseling and support services to individuals and families within the community; their services are available to everyone, regardless of background, to ensure equal access to high quality support and resources. The JFS COMPASS program is an outpatient dementia care and caregiver support program providing personalized, comprehensive care planning and handson care management to meet the medical and social needs of patients and caregivers. Their interdisciplinary team collaborates with other professionals to help patients and their caregivers navigate their journey with dementia. For more information, visit https://www.jfsdelaware.org/compass Easterseals Delaware & Maryland’s Eastern Shore offers education programs and support for family caregivers. They can provide Adult Day Care for those with early stages of dementia and can provide connections to state agencies and other community providers. At the main campus, there is an assistive technology room that displays many different items to help a loved one suffering from dementia at various stages. Their staff can provide information on where to buy the items and can also help with financing when needed. https://easterseals.com/our-programs/adult-services Delaware Health and Social Services (DHSS) provides links to numerous support services available to Delawareans, one of which is an Alzheimer’s Toolkit. The Toolkit contains links to resources for Alzheimer’s signs and symptoms, treatment, and research among others. https://dhss.delaware.gov/dhss/dsaapd/alzheimers_toolkit.html A comprehensive list of State resources is available through the Delaware Aging and Disability Resource Center. Many families look to Adult Day Centers or Senior Centers to provide opportunities for their loved one with dementia to socialize, while the family caregiver can get a little break. Families can search for such services in addition to many others such as: food programs, 87

legal assistance, financial coaching, caregiver support, emergency response systems, specialized equipment, transportation, respite care and in-home care providers. http://www.delawareadrc.com/ Families may also want to consider learning about the qualifications for the Medicaid Waiver program which can help with the cost of in home and facility care. It is important to note that Delaware is one of the few states that has no waiting list for Medicaid Waiver programs. To gain further information about qualifications and to start the process call: 302-451-3660. https://assist.dhss.delaware.gov/ Geriatric Care Mangers can also be a great resource for families.

This professional is usually a licensed nurse or social worker who specializes in geriatrics, and they can help navigate the steps of the journey. They can be the “quarterback” and help with some of the decisions that may have to be made along the way. This is particularly helpful since they know the resources in the community and they know how to collaborate with the health system, which can include the hospitals, doctor office, facilities and rehabilitation centers. Their services are also helpful when there are many family members who may live out of state and they need someone to help with the overall coordination of a care plan. https://www.agingcare.com/local/geriatric-care-managers/de https://www.aarp.org/caregiving/basics/info-2020/geriatric-care-manager.html https://www.nia.nih.gov/health/what-geriatric-care-manager

WHAT ARE THE ADVANTAGES OF MAKING IT POSSIBLE FOR MY LOVED ONE TO REMAIN AT HOME? For the patient with dementia, being at home in a familiar environment is less disorienting and can offer security and peace of mind. They also have a better chance of continuing to follow their routine, which is important in the overall care plan. Maintaining routines like the ones they followed before dementia behaviors truly “set in” can help reduce anxiety and confusion.

In-home care can provide as much or as little assistance as a family requires. Family members often want to be just that: a wife, a daughter, a husband, and not a caregiver. Working with professional home care providers affords them the opportunity to be that family member, all the while keeping their loved one safe and happy in their own environment.

Support at home can help delay the move to long-term care facilities, but the progression of dementia may eventually require higher levels of care and 24/7 supervision. The timing of a decision to consider options outside the home may depend on the ability of the family, private or professional agency caregivers to manage the potentially unsafe behaviors that often accompany the disease.3

WHAT ARE SOME OF THE CHALLENGES THAT MY LOVED ONES AND CAREGIVER WILL FACE? Dementia is a disease that slowly progresses, and as previously stated, statistics tell us that a person can live from 4–8 years, but can also survive 20 years with the disease.1 The level of care can change from occasional visits and phone calls to your loved one not being able to be left alone. So, bottom line – responsibilities 88 Delaware Journal of Public Health - September 2021

will increase as the disease progresses and the caregiver stress level will most likely also increase.

One of the biggest challenges is that adult children may not be able to provide the level of care that is needed. It is one thing to pay bills – it is another thing to assist a loved one with toileting. Some children may find this to be a very difficult task because of the intimacy involved. This is when dignity begins to decline for your loved one. If you have moved your loved one to your home, it also means less privacy for you and your family members. Whether their own home or your home, there may also be modifications that must be made at the home to accommodate them, e.g., ramps, hospital beds, bathroom modifications, chair lifts, etc.

If there are children in the home, it is important to have a conversation with them, because they may not understand what is going on with their loved one. Family members also need to communicate with each other, and it is probably best to have one person who is the main contact for different aspects of the care so that there are not too many cooks in the kitchen.

The biggest challenge is going to be knowing when to ask for help. You want to get help before burnout, or something happens that you are not trained to handle. There can be physical changes that are a new challenge – like transferring your loved one from the bed to a wheelchair. If they cannot bear weight on their own feet, the transfer may mean that someone is going to get hurt because the transfer is not safe. There can also be behavioral changes, which may include more aggression or combativeness.

It is important to discuss these changes with the physician and seek advice.

AT WHAT POINT DO I CONSIDER MOVING MY LOVED ONE TO A FACILITY? When 24/7 care becomes necessary, it may be the tipping point for having new conversations with the doctor. If a caregiver is an only child, one cannot stay up for 24 hours to provide care.

Professional in-home caregivers can help support the family caregivers and relieve some of the burden of the 24/7 supervision.

Making a decision to move your loved one to a facility is not going to be easy, and it is best to gather information early in the process. You will want to learn about the services provided in the Assisted Living area (as opposed to the Memory Care area) and understand the qualifications for each. If you must move quickly, placement will depend on availability, and it might mean you cannot place them in your first choice of a facility. That is why it is important to gather information ahead of time.

The facility, the doctor, your home care agency professionals you might have engaged to assist with care, support group members, as well as personal clergy are all potential resources to support you as you take this important step.

HOW DO I FURTHER SUPPORT MY LOVED ONE IF THEY DO MOVE TO A FACILITY? During the recent pandemic, this was certainly a challenge, and many families and their loved ones suffered because of the lack of connection. It was hard enough for those without dementia – having cognitive issues presented a different level of stress for the loved one and their family members who could not visit.

During normal times, it is helpful to establish a routine – a plan of visitation, and perhaps keep a large calendar in your loved one’s room so that they can see the plan for every day. They may not remember, but you can use pictures/leave a sign each day letting them know who is visiting. As in the home environment, routine and structure are important. The idea is to develop a plan just as if they were home. This lets everyone know what is expected and defines the amount of time that will be spent. If possible, it would also be good to take them out of the building and go for ice cream, go for a ride, or go to lunch. Perhaps just take a walk outside. But the main point is to have a plan and have anyone who is going to visit or interact with your loved one become involved in the plan.

WHAT’S THE IMPORTANT MESSAGE? The dementia journey is unique to each person who is challenged by this terrible disease, and every family member will have their own feelings of how to deal with this reality. There are no answers that will perfectly fit every situation. Making the commitment to handle the in-home care for your loved one will be a growth experience for all involved, and when managed with care, the love that is shown and experienced by your loved one will matter.

There is a good chance that the family will also become closer,

as long as the challenges are met with reason and support is asked for when needed. At the same time, everyone will benefit if there is an honest conversation about whether home care can safely continue when the disease progresses into care that may or may not be manageable. Having support to help you at this critical time in the decision-making process is important for all concerned. We are all seeking peace of mind hoping that we made the right decisions along the way. That is possible when we lead with our heart and couple that with professional advice.

REFERENCES 1. Alzheimer’s Association. (2021). Alzheimer’s disease facts and figures. Retrieved from https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.12328 2. Alzheimer’s Association. (2021). Alzheimer’s disease facts and figures https://www.alz.org/media/Documents/delaware-alzheimersfacts-figures-2021.pdf 3. Bursack, C. B. (2020, Dec 15). The benefits of in-home care for dementia patients. Aging Care. Retrieved from https://www.agingcare.com/articles/alzheimers-presents-uniquechallenges-for-home-care-154829.htm

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Dementia Care in Delaware: The Role of Long-Term Care Resources Cheryl Heiks Executive Director, Delaware Health Care Facilities Association

Delaware has over 80 long-term care providers, including skilled nursing, intermediate care, and assisted living facilities. That number is growing. The state is fortunate to have providers specializing in pediatric care and others caring solely for individuals with intellectual and developmental disabilities. Skilled nursing facilities, staffed by licensed healthcare professionals, provide post-acute care including specialized therapies, medications, and medical equipment. Assisted living facilities (ALF) designed to provide personalized assistance with activities of daily living are state-licensed and increasing across the country. Some ALFs specialize in care for individuals with memory issues.

Assisted living services can be provided in stand-alone buildings or in a separate wing of a larger facility offering additional types of care. Residents in assisted living maintain contact with their primary care physicians and medical specialists.

In Delaware, an additional level of care is available, providing flexibility for residents and families. Intermediate nursing care provides regular nursing care to residents who do not require hospitalization or skilled nursing care but need services above the level of room and board. Delaware’s providers are a unique mix of non-profit and for-profit, regional leaders and single building facilities; some are family-owned. Many of the providers have long histories of caring for the elderly and disadvantaged. Nationwide, approximately 60% of nursing home residents rely on Medicaid to help pay for their care. The long-term care industry is highly regulated, and there are numerous state and federal rules about what long-term-care providers can and cannot do.

The American Geriatrics Society estimates that individuals with some form of dementia constitute 47.8% of nursing home populations in the United States. Delaware’s longterm care and senior living community serves people with dementia throughout the state. Dementia has many causes, including Parkinson’s, Alzheimer’s, CreutzfeldtJakob disease, and others. All these diseases cause deterioration in the brain and on an individual’s reasoning abilities, impacting their quality of life and can keep them from living safely independently. Although associated with seniors, other types of brain destruction can cause dementia, including head injury, stroke, and brain tumors.

People with Alzheimer’s Disease and other forms of dementia are four times more likely to need to spend time in a skilled nursing facility. Within the variety of post-acute options available, over two-thirds of Delaware’s long-term care providers provide some level of memory or dementia 90 Delaware Journal of Public Health - September 2021

care services.

Long-term care providers committed to providing care for older adults with dementia can improve the quality of life for these residents by offering services difficult to duplicate in other settings. The Journal of the American Medical Directors Association published a 2021 study,1 showing that residents with Alzheimer’s Disease and other dementias in nursing homes with Alzheimer’s units, higher licensed nurse staffing, and in more competitive markets with access to non-profit facilities had better end-of-life care/outcomes.

Modifications to state Medicaid nursing home payments and other forms of reimbursement may promote better end-of-life care/outcomes for this population. A 2018 study demonstrated improved quality of care factors for individuals who receive treatment in facilities with special care units for residents with dementia.2 Continued research and resources to understand and subsequent investments in what works is needed for residents with ADRD, regardless of their senior living environment.

In addition to those older adults with neurocognitive disorders, long-term care providers serve the needs of older adults with a range of psychosocial conditions including severe mental illness, substance use disorders, and homelessness.3 According to a 2019 national study published in the Journal of the American Geriatrics Society,4 behavioral health disorders affect 65% to 90% of nursing home residents. The care of this population presents growing challenges to long-term care providers because of their special treatment needs, which include specialized behavioral interventions as well as medications known to carry increased risk when used in older individuals. The American Health Care Association/National Center for Assisted Living provides links to CARES (“Connect with the Person, Assess Behavior, Respond Appropriately, Evaluate What Works, and Share with Others”) training, an approach for long-term care providers which emphasizes the reduction of off-label use of antipsychotics and promotes the implementation of additional care strategies for those individuals with serious mental illness.5 CARES training provides education on schizophrenia, bipolar disorder, schizoaffective disorder, major depression, PTSD, borderline personality, psychotic disorders, and dementia. The CARES training is only one educational program; long-term care and the general healthcare industry need additional resources.

An additional special challenge faced by long term care providers is the recognition of behavioral changes resulting from acute, treatable medical conditions. Ongoing healthcare assessment by trained nurses and counselors is essential to doi: 10.32481/djph.2021.09.011

prevent and treat such conditions in individuals residing either temporarily or long-term in communal living settings. The importance of nurses, physician assistants, and physicians who are familiar with the resident and have up-to-date access to their prior medical history, medication information, and any recent changes in their status remains an important key to quality care. For those individuals who reside in senior living environments and receive care from private health care providers, maintaining effective communication and keeping an accurate, current record of any changes in medication and medical diagnoses is essential to maintaining quality care. Technological advances have made it easier to share medical information between providers, when approved; to avoid duplicative tests; to reduce unnecessary health care costs; and to ensure all health care records stay as current as possible. A resident who receives care in a hospital or a surgery center, for example, needs their long-term care providers to have access to tests done in those settings. Those results contribute to good care and may prove critical in the event of a health emergency.

Delaware, like other states in the US, is experiencing an increase in the older population and an increase in the number of older adults in need of long-term residential care. By 2040, the number of Delawareans aged 60 and older will make up nearly 34% of the State’s population.

Projections show that by 2040, the “oldest old” (age 85 and older) population will grow 171.6%.6 The growth of our older population will necessitate greater availability of competent care for people with dementia and behavioral health conditions. It will be necessary to increase the number of behaviorally trained staff including psychiatric consultants and to improve access to more community providers. The increased cost of providing care suggests the need for reviewing reimbursement of care. States with aging populations require targeted investments in workforce development strategies to recruit and retain long-term care specialists, behavioral health consultants and medical professionals interested in geriatric care.

REFERENCES 1. Orth, J., Li, Y., Simning, A., Zimmerman, S., & TemkinGreener, H. (2021, February). End-of-Life care among nursing home residents with dementia varies by nursing home and market characteristics. Journal of the American Medical Directors Association, 22(2), 320–328.e4. https://doi.org/10.1016/j.jamda.2020.06.021 2. Joyce, N. R., McGuire, T. G., Bartels, S. J., Mitchell, S. L., & Grabowski, D. C. (2018, October). The impact of dementia special care units on quality of care: An instrumental variables analysis. Health Services Research, 53(5), 3657–3679. https://doi.org/10.1111/1475-6773.12867 3. Orth, J., Li, Y., Simning, A., & Temkin-Greener, H. (2019, August). Providing behavioral health services in nursing homes is difficult: Findings from a national survey. Journal of the American Geriatrics Society, 67(8), 1713–1717. https://doi.org/10.1111/jgs.16017 4. American Geriatrics Society. (2020). American Geriatrics Society Policy Brief: COVID-19 and nursing homes. Retrieved from https://agsjournals.onlinelibrary.wiley.com/doi/epdf/10.1111/ jgs.16477 5. Maust, D. T., Kim, H. M., Chiang, C., & Kales, H. C. (2018, May 1). Association of the centers for Medicare & Medicaid services’ national partnership to improve dementia care with the use of antipsychotics and other psychotropics in longterm care in the United States from 2009 to 2014. JAMA Internal Medicine, 178(5), 640–647. https://doi.org/10.1001/jamainternmed.2018.0379 6. Delaware Health Resources Board. (2020, Oct). 2019 Delaware nursing home & 2019 assisted living utilization reports: 20202025 Delaware nursing home bed projections. Retrieved from https://dhss.delaware.gov/dhss/dhcc/hrb/files/ nhalrptsbedproj2019_102220.pdf

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Palliative Care of the Patient with Dementia Raja Malhi, M.D. Physician, Supportive and Palliative Care, ChristianaCare Jennifer McElveen, D.N.P. Lead Nurse Practitioner, Outpatient Supportive and Palliative Care, ChristianaCare Linsey O’Donnell, D.O. Clinical Lead, Outpatient Supportive and Palliative Care Program, ChristianaCare; Clinical Assistant Professor, Sidney Kimmel Medical College, Thomas Jefferson University; Clinical Assistant Professor, Philadelphia College of Osteopathic Medicine

INTRODUCTION TO PALLIATIVE CARE

BRIEF OVERVIEW OF DEMENTIA

Palliative care is medical care that focuses on the relief of the symptoms and physical and mental stress of living with a serious illness. It can be provided alongside curative therapies at any stage of illness.1 Palliative care can identify problematic symptoms and provide better symptom management and quality of life compared to usual care.2–4 Studies show positive benefits including better symptom control, including mood and quality of life increased attention to caregiver needs, feeling more in control, as well as having decreased costs with improved utilization of health care resources.5 Numerous medical organizations include provision of palliative care as a best practice including the American College of Cardiology and American Heart Association guidelines for Advanced Heart Failure6 and the American Society of Clinical Oncology.7

Dementia is a major health problem affecting approximately 47 million people worldwide, and by 2050, the number is expected to increase to 131 million.8 Dementia is common yet under recognized public health problem in United States. The prevalence of dementia is around 15% in people older than 68 years. Alzheimer’s Disease is the most common cause of dementia and accounts for approximately 5.8 million cases. This number is projected to increase to around 13.8 million by the year 2050.9

The palliative care team typically includes physicians, advanced practice providers (physician assistants and nurse practitioners), nurses, social workers, and chaplain services, though the team can take many forms. For example, the physician may provide medications to treat pain, dyspnea, or other symptoms, while the patient is supported in psychosocial needs by social work, and spiritual needs by the chaplain. This team model provides exceptional care addressing a whole-person approach and offering a unique framework to address the many domains that can impact quality of life and cause suffering. Practically, the team hopes to provide expert treatment of symptoms of serious illness, complex communication, provide open discussion about treatment choices and advance care planning, while providing an extra layer of support working with other health care providers to support the patient and family physically, emotionally and spiritually.

Alzheimer’s Disease is the sixth leading cause of death and the fifth leading cause among people older than 65 years.9 There are several other causes of dementia (see Table 1).

Dementia not only affects the physical and cognitive functions, but also takes toll on the psychological, social, spiritual and financial aspects of patients and their loved ones. Average total cost per decedent for dementia ($287,038) was significantly greater than for those who died of heart disease ($175,136), cancer ($173,383), or other causes ($197,286). While Medicare expenditures were similar across groups, average out-of-pocket spending for dementia patients ($61,522) was 81% higher than for non-dementia patients ($34,068).10 There are several risk factors that contribute to development of dementia. Age and positive family history of dementia are the two most common identifiable risk factors.

Non-modifiable risk factors include:

• Age. Risk rises with age, especially after 65; • Family History. A positive family history puts an individual at a higher risk for developing dementia; and • Down Syndrome. Many people with Down Syndrome develop early onset dementia.

Table 1. Causes of Dementia 1.) Alzheimer’s Disease

Most common cause. Caused by plaque build-up in the brain.

2.) Vascular Dementia

Caused by damage to the vessels that supply blood to the brain.

3.) Lewy Body Dementia

Caused by balloon like clumps of protein deposit in brain.

4.) Frontotemporal Dementia

Caused by breakdown of nerves and cells in frontal and temporal part of brain.

5.) Mixed Dementia

Caused by combination of several causes listed above

6.) Disorders linked to Dementia:

Huntington Disease: genetic mutation causes nerve cell breakdown Traumatic Brain Injury: results from repeated head trauma Creutzfeldt- Jacob Disease: depositions of infectious prion proteins Parkinson’s Disease: people with advanced disease develop dementia

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doi: 10.32481/djph.2021.09.012

Modifiable risk factors for dementia include: • Diet and Exercise. Lack of exercise and unhealthy diet increase risk.

• Alcohol Intake. Excessive alcohol intake linked with early onset dementia.

• Diabetes Mellitus. Poorly controlled diabetes increases risk of dementia.

• Smoking. Increases chance of blood vessel disease and dementia.

• Air Pollution. Traffic exhaust and burning wood have been linked with dementia.

• Head Trauma.

• Sleep Disturbance. People with sleep apnea have a higher risk for dementia.

• Vitamin Deficiencies. Low levels of vitamins B6, B12, D and folate can increase the risk of dementia.

FAST SCALE The Functional Assessment Staging Tool (FAST) is a scale that was developed by Dr. Barry Reisberg, a leader in Alzheimer’s Disease. This scale primarily focuses on a person’s functional status and ability to perform activities of daily living. The FAST scale is divided into seven distinct levels11: 1. Normally Functioning Adult: free of cognitive and functional decline 2. Normally Functioning Senior Adult: complaints of forgetfulness and misplacing items 3. Early Dementia: individuals demonstrate subtle signs of mild cognitive impairment that may only be noticeable to close friends and family. Concentration becomes difficult.

This stage can last 2-7 years.

4. Mild Dementia: this is when most are diagnosed with dementia. Signs of cognitive impairment become evident.

There is increased difficulty with paying bills or preparing meals. Major or recent events are often forgotten. This stage can last an average of two years.

5. Mid-Stage Dementia: this person can no longer live alone. At this stage, there may be issues with wandering, hallucinations, and confusion. Stage 5 and 6 can last approximately four years.

6. Moderately Severe Dementia: person becomes dependent in their care and require assistance 24hrs a day. This stage is broken down into sub-stages: A. Need assistance with dressing B. Unable to bathe properly C. Difficulty with toileting themselves D. Urinary incontinence, occasionally E. Bowel incontinence, occasionally 7. Severe (End Stages) of Dementia: this is the stage when the body is shutting down and death is in the near future, likely within 2.5 years. This stage is broken down into sub-stages.

A. Speech becomes limited to half a dozen words.

B. Speech is limited to one word or less.

C. The ability to ambulate independently is lost.

D. Unable to sit up without assistance.

E. Ability to smile is lost.

F. Ability to hold head up independently is lost.

DYING WITH DEMENTIA OR DYING FROM DEMENTIA Dementia care has improved over the last few decades, however many patients and families still lack significant understanding of the disease. Population based studies estimate that 600,000 Americans with Alzheimer’s disease died in 2010.12 The median survival after diagnosis of dementia ranges from 3 to 12 years.13 The majority of these patients spent a significant time in the advanced stage of dementia and were confined in nursing homes at the time of the time of their death.14 There has been significant literature to support that dementia itself is a terminal illness, however this fact continues to remain understated. The terminal effects of advanced dementia were described in the Choices, Attitudes, and Strategies for Care of Advanced Dementia at End of Life (CASCADE) study. This study prospective followed 323 nursing home residents with advanced dementia for 18 months. This study corroborated the prior research showing high mortality rates among patients with advanced dementia.15 With a six month mortality rate of 25% and median survival of 1.3 years, advanced dementia is associated with life expectancy similar to commonly recognized terminal conditions such as congestive heart failure and metastatic breast cancer. Most common clinical complications were eating problems, febrile episodes and pneumonia.16 In addition to the common complications many patients with advanced dementia also experience several other distressing symptoms such as dyspnea, pain, pressure ulcers, agitation, and aspiration.

ANTICIPATORY PALLIATIVE CARE GUIDANCE FOR PATIENTS WITH DEMENTIA As dementia worsens, the majority of the decision-making responsibility is left to the health care proxies. These decisions can be challenging and take an emotional toll. In a prospective study, more than 90% of the proxies stated that the goal of care was comfort.16 The cornerstone of care of patients with advanced dementia is advance care planning.

Advance care planning should start early on in the disease process when the patient is still able to participate in the decision-making process. The first step should be filling out a written advance directive and choosing an appropriate surrogate decision maker.

Getting Palliative Care involved early in the disease trajectory has also been shown to have a positive effect on many clinical outcomes. Early referral to palliative care services was associated with more inpatient hospice utilization, prevention of overly aggressive treatments, and improved comfort and quality of life for persons with dementia and their families.17 Planning for an uncertain future can be challenging. Our role as palliative care providers is to educate the patients and their families about the disease trajectory and the expected complications. Treatment decisions for patients with advanced dementia should be guided by the patient’s wishes and goals of care. Keeping the patient’s best interest in mind, the health care providers and patient’s health care proxies must make shared decisions. For tips regarding advance care planning (see Table 2).

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Table 2. Tips for Advance Care Planning Start early

Ideally before patient loses decision making capacity

Establish directives

Preferably in writing.

Appoint a health care proxy.

Establish preferred goals of care.

Have conversations about disease trajectory

Continue conversations between health care proxies and providers regarding what to expect as dementia progresses.

Learn about dementia as a terminal illness (i.e.: expect loss of basic bodily functions such as ability to swallow and fight infections).

Discuss treatment preferences.

Consider the use of structured conversation guides

Preferably before complications arise.

Discuss treatment choices regarding specific clinical problems (cardiopulmonary resuscitation, artificial nutrition, mechanical ventilation).

Have conversations with health care providers regarding advantages and disadvantages of options based on evidence-based medicine.

Align treatment options with established goals of care.

Review directives and treatment options periodically

Review periodically or whenever there is a change in health status.

Update document(s) with any revisions to goals of care or treatment preferences.

COMMON PALLIATIVE SYMPTOM MANAGEMENT ISSUES IN PALLIATIVE CARE Palliative care focusing on quality of life for people with advanced dementia can improve symptom burden, prevent under treatment of symptoms and overtreatment with unnecessary and burdensome treatment, and can also reduce caregiver burden and enhance caregiver quality of life.18 Some of the distressing symptoms that Palliative Care can assist with are agitation, swallowing difficulties, pain, and hallucinations.

Agitation Agitation is common in Alzheimer’s Dementia (AD) and other dementias and has a significant impact on caregivers. Agitation is related to the severity of dementia and to specific types of associated psychopathology implicating frontal lobe dysfunction.

Agitation can occur frequently and can be a distressing symptom.

This symptom is disturbing for the individuals with Alzheimer Disease, may confer risk to the patient and others, and present a major management challenge for primary clinicians. A study conducted by Senanarong V, et al., is the largest and most comprehensive assessment of agitation reported. The data suggest that agitation in AD is a frontal lobe syndrome. Frontal lobe dysfunction may predispose AD patients to agitation by exaggerating behavioral responses to many types of coexisting psychopathology or environmental provocations.19 Agitation can take on many forms, such as wandering, crying out, and aggression. There are several reasons a person may be agitated, such as pain, stress, lack of sleep, constipation, and many other factors. It is presumed to cause distress to the individual and an increase in caregiver burden. Psychosocial support, nonpharmacological management, and pharmacological management might all be necessary to assist through this person’s trajectory.

Assisting families with methods to manage the agitation and 94 Delaware Journal of Public Health - September 2021

support their loved one can provide considerable relief to the caregivers. Examples of methods could include speaking calmly, playing soothing music, taking walks, distracting with enjoyed activities, and maintaining a daily routine. Educating the family on safety concerns is just as important. There may be times when they must protect themselves or call for assistance when there is a potentially dangerous situation.

Swallowing Difficulties According to Goldberg and Altman, dementia is the leading cause of death in the US, with mortality affected by aspiration, hydration, and nutritional status. The rate of patients being diagnosed with dementia is growing rapidly. The prevalence is estimated to double every five years after 65 years old, and at age 85 years, the prevalence is approximately 50%.20 When a patient with advanced Alzheimer’s Disease reaches the last six months to a year of their lives, they will likely have difficulty with eating and swallowing. This is a normal progression of their disease process.

It is also a difficult time for the patients, their families, physicians, and nurses. There is a false belief or optimism that artificial nutrition improves nutrition, therefore it improves quality of life.

Despite the numerous evidence-based studies that are available, artificial nutrition continues to be the primary recommendation.

Due to the progression of the disease and poor appetite, the individual begins to lose weight. This is a very distressing and overwhelming time for the caregiver. The caregiver may feel like a failure, and that they are not providing adequate care due to their loved one’s decline. Unfortunately, there will come a time when frequent coughing, increased congestion, shortness of breath, and possibly a fever will lead to a trip to the hospital. Due to the lack of understanding of the progression of dementia, some providers will recommend starting artificial nutrition via a percutaneous gastrostomy (PEG) tube when poor nutrition and/or dysphagia becomes an issue. According to the American Geriatric Society, feeding tubes are not recommended for older adults with advanced dementia.

Artificial nutrition in people with advanced dementia does not prevent aspiration pneumonia, reduce the risk of pressure ulcer development or infection, improve functional status, prevent and/or reduce the consequences of malnutrition, provide comfort and palliation, or reduce mortality”.21 In all actuality, feeding tubes can cause pain, infection, or bleeding at the site of the tube; increase aspiration risk; will not heal pressure ulcers, diarrhea, constipation, reflux, fluid overload or upper airway secretions in patients with heart or lung disease; and may cause a person to need to be restrained to prevent them from pulling the tube out.22 Placing a PEG tube for artificial nutrition is a medical procedure. It has not been found to increase mortality or quality of life in patients with end stage dementia. The number of patients living with dementia is growing and so are the number of peg tube placements. In a study conducted by Teno et al., it was found that the type of attending physician influenced whether or not a peg feeding tube was inserted during that hospitalization.23 This study also recommended that hospitals should educate healthcare providers on the lack of efficacy of PEG feeding tubes in persons with advanced dementia.

When a person living with advanced dementia loses the desire to eat, the family also experiences a loss. Careful hand feeding has been proven to be the best and safest way to provide nutrition to a person at the end of their lives. Comfort feeding encourages human contact and maximizes quality of life.24 Following the person’s cues on what they can and cannot tolerate will be the most beneficial. Spending that time with them to bond and enjoy their company is what increases quality of life. Initiating palliative care services early in the care of these patients can assist with psychosocial support and advance care planning. It is important that goals of care conversations take place when the individual is still able to participate. These discussions allow the person to make their wishes known concerning their health care choices prior to losing the ability to participate in their care.

Education, advance care planning, and communication are key to assisting patients living with advanced dementia to achieve the best quality of life.

Pain In their last 6-12 months of the life, people living with dementia most often suffer from restrictions in mobility and pain.

Decreased mobility leads to stiffness, achy joints/arthritis, pressure ulcers, and infections such as pneumonia and urinary tract infections. Many people with advanced dementia experience pain; it is one of the most common symptoms and persists over the course of disease.25 Untreated pain can present as depression, agitation, and challenging behavior due to a person’s inability to express the source of their pain. Pain is subjective, yet patients with dementia are limited when it comes to self-reporting their pain. Communication restrictions and restrictions in memory and executive function hinder the person in communication of their pain.25 The Pain Assessment in Advanced Dementia (PAINAD) scale is a frequently used tool. It evaluates behavioral categories breathing, vocalization, facial expression, body language, and consolability as indicators of pain. Behavior is more correctly interpreted if the caregiver knows the person with dementia well and over a longer period of time.

Non-pharmacological interventions may be used to relieve pain, such as massages, passive range of motion, application of heat, or ice. Relaxation techniques, decreased stimulation, music, naps, or the presences of someone they trust can be extremely helpful.

Pharmacological intervention such as analgesics may be needed at times. They are most beneficial if the source can be identified and treated appropriately. Often, primary care providers are not comfortable with treating pain at the end of a person’s life, and they will refer to palliative care. Palliative care providers specialize in identifying the source of discomfort and treat appropriately to prevent under or over treatment. Education to the family is also a priority which increases their comfort level on caring for their loved one.

CAREGIVER EXPERIENCE AND PALLIATIVE SUPPORT People living with advanced dementia are usually cared for by a family member, spouse, sibling, or adult children. Being the caregiver of a person with dementia can be extremely burdensome. Family members report being stressed, having anxiety, have feelings of being restricted, and having a poor quality of life. Through our experience with this population, we have observed many caregivers wanting to keep their family member home and not place them in a facility out of a sense of guilt. There is a sense of being a failure if they must resort to placement of their loved one. The sense of guilt may stem from making a decision you know is against your love ones wishes.26 Caregivers need a significant amount of support to assist them in caring for their loved one. They may begin having their own struggles with anxiety and depression. Grieving and a sense of loss begin long before the person actually passes away. It can start with the loss of personality or recognizing family members. Education on what to expect is not usually provided with routine physician follow-up. Studies looking at the needs of caregivers have shown that emotional and social support, improving coping strategies, and providing information about the illness and available support services can help reduce caregiver burden.27 A palliative care team is critical to the caregiver for education, support, and walking with them through this loss. Having the availability of clinicians, nurses, social workers, and chaplains can assist in improving their quality of life.

END STAGE DEMENTIA AND THE HOSPICE TRANSITION Dementia is a life limiting illness. While sometimes not thought of as a terminal illness, patients with advanced dementia may eventually die of consequences of the disease including pneumonia, eating problems, or febrile illness.16 Individuals can live with dementia for many years, which can make counseling regarding the end of life particularly difficult.

Hospice is a program, often offered as a Medicare benefit, which provides medical care focused towards comfort and quality of life in the last six months of life, if the disease takes its usual course.28 An increasing number of people with dementia are enrolling with hospice at the end of life, representing the fastest growing group of hospice users.29 Hospice provides a constellation of clinical and psychosocial supports to patients at the end of life including the services of an interdisciplinary team including physicians, nursing care, home 95

health aides, spiritual and emotional support as well as other medical professionals. Hospice also provides medical equipment and supplies, and medications, that are related to the hospice diagnosis. Patients can access care in the home, and during short term inpatient stays for symptom management and respite care.

Caregivers can expect bereavement support before and after the patient’s death.28 Hospice admission criteria typically uses the FAST score to determine a prognosis of six months or less in patients with dementia. The FAST score is a standardized scale that allows for assessment of functional changes throughout the course of Alzheimer’s disease.30 FAST Stage 7C is defined by the loss of the ability to walk independently with presence of limited speech (speech is limited to a half dozen or fewer intelligible and different words). At this stage, survival is often six months or less and patients are hospice appropriate.31 According to Medicare guidelines, in addition to being at least Stage 7 or beyond on the FAST scale, the occurrence of at least one of the following medical complications in the prior year indicates hospice eligibility: • Aspiration pneumonia, • Pyelonephritis, • Septicemia, • Multiple decubitus ulcers greater than or equal to stage 3, • Recurrent fever after antibiotics, • Inability to maintain sufficient fluid and calorie intake with 10% weight loss in previous six months, or • Serum albumen <2.5 g/dL. Other factors to suggest a decline in this time frame include numerous symptoms, signs, lab values and comorbidities that can be referenced on the CMS.gov website.

Studies have found hospice benefits for patients with advanced dementia include a lower probability of hospitalization during last 30 days of life,32 high probability of routine treatment of daily pain,33 and greater patient and caregiver satisfaction with care over a usual care group.34 Whether providing primary care, specialist care or specialty level palliative care, patients living with dementia should regularly be evaluated as to whether they are at the stage where hospice will benefit them and their caregivers. As a clinical best practice, this evaluation should be done with changes in status, hospitalizations or periodically during routine follow up visits.

OBSTACLES TO ADOPTION OF PALLIATIVE CARE Palliative care is one of the newest medical specialties certified by the Accreditation Council for Graduate Medical Education (ACGME) and was recognized as a medical sub-specialty in the US in 2006. As a field it is still growing and expanding its base of evidence and research. Recent studies of palliative care show that it provides a high value service to patients and families and new research is being done all the time, from cancer to Parkinson’s disease to cystic fibrosis. We are learning more all the time about how best to integrate palliative care principles into the care of patients with serious illness.

96 Delaware Journal of Public Health - September 2021

In contrast to palliative care, hospice services are more widely known. The beginnings of what eventually became hospice care was developed by Dame Cicely Saunders in the UK in the 1960s.

The US hospice benefit was authorized by the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982.35 The World Health Organization cites worldwide barriers to adoption of palliative care. These include national health policies and systems that do not include palliative care.36 In the US, despite the presence of the Medicare hospice benefit, palliative care is typically provided as a fee-for-service program. There are alternate payment models proposed and functioning including contracted rate, per-member-per-month, and accountable care organization shared savings programs.37 Fee-for-service can be a particularly difficult model given the palliative care focus on the interdisciplinary team and lacking payment models that match the service delivered.

Other barriers include a lack of awareness among policymakers, health professionals, and the public regarding palliative care and the benefits it provides, as well as cultural and social barriers around death and dying, and misconceptions including that palliative care is only for dying patents.38 Our team faces challenges every day, dispelling rumors and educating patients, colleagues and caregivers about palliative care. Sometimes medical teams worry that mentioning palliative care or hospice may cause a patient to lose hope, rather than reframing that it is equally acceptable to hope for better symptom control and understanding of a patient’s illness.

Prognostication in general, and recognition of the right time to refer to hospice and palliative care services, can be very difficult.

A seminal research study found that physicians would provide a frank prognostic estimate to cancer patients 375% of the time, with the remaining time providing a conscious over or underestimate.39 It is also difficult for a patient’s surrogates to understand of their prognosis. Recent research demonstrates that when asked to respond to hypothetical prognostic discussions, surrogates with relatives in intensive care were more likely to correctly interpret optimistic predictions rather than pessimistic ones.40 An additional roadblock to adoption of specialty level palliative care services into usual medical care is that these conversations take time. From introducing a palliative care referral, to the time it takes for the palliative care physician or team member to do a full symptom assessment and goals of care discussion, these are complex and nuanced conversations.

PALLIATIVE CARE IN THE STATE OF DELAWARE Delaware is a small state, and as such, there is a unique ability for health systems, care providers, and palliative care and hospice teams to work together to improve care of the seriously ill.

One example of that process in action was the development, in conjunction with the State legislature, of the DMOST: Delaware Medical Orders for Scope of Treatment. This is an essential document that provides an actionable medical order for treatment choices at the end of life.41 In 2011, the Center for Advancement of Palliative Care (CAPC) surveyed all states for access to in-hospital palliative care. Only

two states received an “F” rating: Delaware and Mississippi.

Thanks to work at the State and hospital level, in 2019 CAPC re-surveyed the states and Delaware was one of only four states with 100% access to palliative care, with a palliative care team represented in all hospitals. This is a key metric that Delaware must work to maintain, and demonstrates significant growth and understanding regarding the importance of palliative care.42 Similarly to the expansion of palliative care in hospitals throughout the past decades, palliative care is now also growing in community settings. Our service has embedded teams at ChristianaCare in the Helen F. Graham Cancer Center, Advanced Heart Failure Clinic, Cystic Fibrosis Clinic, and Primary Care, and has developed an In-Home program. Expansion into the community places palliative care where patients are, and where they feel most comfortable. However, this shift and growth requires ongoing education to not only the public, but also to the outpatient medical system.

This education process is supported by numerous stakeholders, from providers who have had excellent experiences with palliative care, to hospices, and health systems. One unique opportunity for some of the palliative care programs in the state came this year when the eBright Health Accountable Care Organization chose access to palliative care as a key metric to improve the health of their seriously ill population.

As much as specialty level palliative care is growing, the number of palliative care providers is limited, and there will never be enough of us to meet all of the palliative care needs of our communities. As such, one of our strategic initiatives is to educate and train all care providers in the delivery of primary palliative care: basic symptom management, goals of care and communication strategies, and advance care planning. Only by working together can we ensure our patients and their families have the respectful care that they deserve.

On the individual level, we encourage all health care providers in all fields, providers and support staff alike, to expand their knowledge about palliative care principles. Our team, and may other teams around the state, offer regular education opportunities.

On a national level we encourage our Senators and Representatives to support expansion of the palliative care workforce by passing the Palliative Care and Hospice Education and Training act (PCHETA) and expanding Medicare-funded graduate medical education (GME) slots to train medical professionals with provisions included for palliative care fellowships.

In conclusion, while palliative care may not change the course of serious illness, access to high quality palliative care can change the experience of living with serious illness by controlling symptoms, and empowering patients and families to make choices that help them live as well as possible.

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Symptoms in 400 patients referred to palliative care services: Prevalence and patterns. Palliative Medicine, 17(4), 310–314. https://doi.org/10.1191/0269216303pm760oa 5. Kavalieratos, D., Corbelli, J., Zhang, D., Dionne-Odom, J. N., Ernecoff, N. C., Hanmer, J., . . . Schenker, Y. (2016, November 22). Association between palliative care and patient and caregiver outcomes: A systematic review and meta-analysis.

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15. Meier, D. E., Ahronheim, J. C., Morris, J., Baskin-Lyons, S., & Morrison, R. S. (2001, February 26). High short-term mortality in hospitalized patients with advanced dementia: Lack of benefit of tube feeding. Archives of Internal Medicine, 161(4), 594–599. https://doi.org/10.1001/archinte.161.4.594 16. Mitchell, S. L., Teno, J. M., Kiely, D. K., Shaffer, M. L., Jones, R. N., Prigerson, H. G., . . . Hamel, M. B. (2009, October 15).

The clinical course of advanced dementia. The New England Journal of Medicine, 361(16), 1529–1538. https://doi.org/10.1056/NEJMoa0902234 17. Amano, K., Morita, T., Tatara, R., Katayama, H., Uno, T., & Takagi, I. (2015, March). Association between early palliative care referrals, inpatient hospice utilization, and aggressiveness of care at the end of life. Journal of Palliative Medicine, 18(3), 270–273. https://doi.org/10.1089/jpm.2014.0132 18. Eisenmann, Y., Golla, H., Schmidt, H., Voltz, R., & Perrar, K. M. (2020, July 21). Palliative care in advanced dementia. Frontiers in Psychiatry, 11, 699. https://doi.org/10.3389/fpsyt.2020.00699 19. Senanarong, V., Cummings, J. L., Fairbanks, L., Mega, M., Masterman, D. M., O’Connor, S. M., & Strickland, T. L. (2004).

Agitation in Alzheimer’s disease is a manifestation of frontal lobe dysfunction. Dementia and Geriatric Cognitive Disorders, 17(1-2), 14–20. https://doi.org/10.1159/000074080 20. Goldberg, L. S., & Altman, K. W. (2014, October 14). The role of gastrostomy tube placement in advanced dementia with dysphagia: A critical review. Clinical Interventions in Aging, 9, 1733–1739. https://doi.org/10.2147/CIA.S53153 21. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. (2014, August).

American Geriatrics Society feeding tubes in advanced dementia position statement. Journal of the American Geriatrics Society, 62(8), 1590–1593. https://doi.org/10.1111/jgs.12924 22. Ying, I. (2015, March). Artificial nutrition and hydration in advanced dementia. Can Fam Physician, 61(3), 245–248, e125– e128. https://pubmed.ncbi.nlm.nih.gov/25767168 23. Teno, J., Meltzer, D., Mitchell, S., Fulton, A. T., Gozalo, P., & Mor, V. (2014). The role of physician specialty and severely demented hospitalized nursing home residents’ peg feeding tube insertion. Health Affairs (Project Hope), 33(4), 675–682. https://doi.org/10.1377/hlthaff.2013.1248 24. Heuberger, R. A. (2010, October). Artificial nutrition and hydration at the end of life. Journal of Nutrition for the Elderly, 29(4), 347–385. https://doi.org/10.1080/01639366.2010.521020 25. Eisenmann, Y., Golla, H., Schmidt, H., Voltz, R., & Perrar, K. M. (2020, Jul). Palliative care in advanced dementia. 11, 699.

Doi https://doi.org/10.3389/fpsyt.2020.00699 26. Alzheimer’s Association. Greater Missouri Chapter. (2017).

Guilt and grief when moving your loved one to a care facility.

Retrieved from https://www.alz.org/media/greatermissouri/ guilt_and_grief_when_moving_your_loved_one_to_a_care_ facility.pdf 27. Birkenhäger-Gillesse, E. G., Achterberg, W. P., Janus, S. I. M., Kollen, B. J., & Zuidema, S. U. (2020, November). Effects of caregiver dementia training in caregiver-patient dyads: A randomized controlled study. International Journal of Geriatric Psychiatry, 35(11), 1376–1384. https://doi.org/10.1002/gps.5378 98 Delaware Journal of Public Health - September 2021

28. Centers for Medicare & Medicaid Services. (n.d.). Hospice.

Retrieved from https://www.cms.gov/Medicare/Medicare-Feefor-Service-Payment/Hospice 29. Aldridge, M. D., Canavan, M., Cherlin, E., & Bradley, E. H. (2015, January). Has hospice use changed? 2000-2010 utilization patterns. Medical Care, 53(1), 95–101. https://doi.org/10.1097/MLR.0000000000000256 30. Sclan, S. G., & Reisberg, B. (1992). Functional assessment staging (FAST) in Alzheimer’s disease: Reliability, validity, and ordinality. International Psychogeriatrics, 4(Suppl 1), 55–69. https://doi.org/10.1017/S1041610292001157 31. Brown, M. A., Sampson, E. L., Jones, L., & Barron, A. M. (2013, May). Prognostic indicators of 6-month mortality in elderly people with advanced dementia: A systematic review. Palliative Medicine, 27(5), 389–400. https://doi.org/10.1177/0269216312465649 32. Miller, S. C., Gozalo, P., & Mor, V. (2001, July). Hospice enrollment and hospitalization of dying nursing home patients. The American Journal of Medicine, 111(1), 38–44. https://doi.org/10.1016/S0002-9343(01)00747-1 33. Miller, S. C., Mor, V., Wu, N., Gozalo, P., & Lapane, K. (2002, March). Does receipt of hospice care in nursing homes improve the management of pain at the end of life? Journal of the American Geriatrics Society, 50(3), 507–515. https://doi.org/10.1046/j.1532-5415.2002.50118.x 34. Shega, J., Hougham, G., Stocking, C., Cox, D., Sachs, G. (2008, May). Patients dying with dementia experience at the end of life and impact of hospice care. Pain symptom Manage, 5(5), 499. Doi https://doi.org/10.1016/j.jpainsymman.2007.06.011 35. Centers for Medicaid & Medicare. (n.d.). Medicare hospice benefit: Early program experiences. Retrieved from: https:// www.cms.gov/research-statistics-data-and-systems/research/ healthcarefinancingreview/downloads/cms1192048dl.pdf 36. World Health Organization. (n.d.). Palliative care. Retrieved from: https://www.who.int/news-room/fact-sheets/detail/ palliative-care 37. Siderow, S., & Silvers, A. (n.d.) Alternative payment supports palliative care across the continuum. Retrieved from: https://www.media.capc.org 38. World Health Organization. (n.d.). Palliative care. Retrieved from: https://www.who.int 39. Lamont, E. B., & Christakis, N. A. (2001, June 19). Prognostic disclosure to patients with cancer near the end of life. Annals of Internal Medicine, 134(12), 1096–1105. https://doi.org/10.7326/0003-4819-134-12-200106190-00009 40. White, D. B., Ernecoff, N., Buddadhumaruk, P., Hong, S., Weissfeld, L., Curtis, J. R., . . . Lo, B. (2016, May 17). Prevalence of and factors related to discordance about prognosis between physicians and surrogate decision makers of critically ill patients. JAMA, 315(19), 2086–2094. https://doi.org/10.1001/jama.2016.5351 41. Delaware Department of Health and Social Services. (n.d.).

Are Delaware Medical Orders for Scope of Treatment (DMOST) different than advance directives? Retrieved from https://dhss.delaware.gov/dhss/dsaapd/dmost.html 42. Center to Advance Palliative Care. (n.d.). State by State report card for access to palliative care. Retrieved from: https://reportcard.capc.org/

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An Interview with Maggie Goonan James Ellison, M.D., M.P.H. Geriatric Psychiatrist; Swank Foundation Endowed Chair, Memory Care and Geriatrics; Editor in Chief, Journal of Geriatric Psychiatry and Neurology

James Ellison: Ms. Goonan, I’ve asked you to speak with me for this special issue of the DJPH in hopes that you might share your experience as a caregiver for a parent with dementia. Can you please start with a few words about yourself and your family?

Maggie Goonan: Of course – My name is Maggie Goonan.

My mom was diagnosed at age 68, about nine years ago, with dementia. At first, I don’t know that it changed my life too drastically. In the beginning, we were trying to keep her mind off of it since we had a lot of Alzheimer’s disease in our family. She knew how this would play out. We tried to keep her mind off that and on the positives -- she still had a lot of life to live. But as the disease started to progress, my father was also sick at the same time. This was challenging for us because her moods and her personality started to change, and she was more difficult to deal with. She had a lot of anxiety, a lot of depression, and she became unpredictable. Life became a roller coaster, just trying to navigate how she was feeling and keep up with the demands of her moods. It was incredibly stressful as we tried also to care for my father. It really was a full-time job, a lot for us to juggle.

JE: Your mother was not only declining cognitively, but like so many people with dementia, she was showing changes in personality and mood and behavior.

MG: Yes, and after my father passed away, when I stepped into the sole caregiver role, I had a better appreciation for what my dad had been dealing with, 24 hours per day. I realized this would be a 24 hour a day job, and it was a bit overwhelming.

JE: What stressors did you face in particular?

MG: Well, I think the emotional roller coaster for me was the hardest part, because my mom was always such a positive and upbeat person, always very happy. Seeing her in despair was the most stressful experience for me. She had always been someone who would try to keep a positive perspective.

JE: Do you think there are special challenges for a caregiver of somebody with dementia, as compared to caring for a person with other diseases?

MG: Yes, I do. My father had cancer – his journey was completely different. With him, I could still hold a conversation, and we could still laugh and talk. Our relationship didn’t change very much, it was still very much the same up until the very end, he could still give advice, and we could still reminisce. We could laugh at television shows that we watched together with my mom. But mom was different, she was no longer the same person. And she 100 Delaware Journal of Public Health - September 2021

changed, too, from one day to the next. So you just never knew who you were going to be dealing with that day. And then as dementia progressed even further, we couldn’t even have meaningful conversations. The dynamics of our relationship changed completely. She had always been the caregiver and now our roles flip-flopped, and I was taking care of her. Her care is all focused on “how do I best meet her needs?” every day. By necessity, our relationship is more one sided.

Also, when you are caring for someone with dementia, especially while they are still in their own home or in yours, you take on a lot of responsibility for all their day-to-day needs. For example, you need to remember things like making appointments, picking up their prescriptions and filling the pillbox, making time to do their laundry and grocery shopping, or being the driver for anywhere they need to go. I found this difficult, because it just didn’t seem like there were enough hours in the day. I still have two young children and work full-time, so at times it was quite a bit of juggling. Even now, with my Mom in a facility, I find myself lying in bed at night making notes in my phone to keep track of everything. Nowadays, it’s less about running my Mom around to appointments or doing grocery shopping, and more about what new ways I can try to make this stage in her life just a little bit better and what time each day I can fit in a visit with her.

JE: So, with dementia, she became unable to realize how you were caring for her?

MG: Yes, there were times when I became the target of a lot of her frustration, aggression and fear. And so I often felt like I couldn’t do anything right. But there were moments during that where she would have clarity, and she would just look at me and say, “I don’t know what I would do without you.” At those moments we could make that connection, and she was still in there. But for the most part, she was angry at me for what she was going through. And no matter how much I was trying to make things nice and make things right, make sure everything’s taken care of, she couldn’t understand my role.

JE: Such a difficult part of the burden of caregiving is loss of the former relationship. It sounds like sometimes she knew you were her ally, but not consistently?

MG: Yes. Whereas with my father, every day, he was thankful and appreciative. For me, it was an honor to take care of both of my parents, but he remained aware of what I was trying to do for him, and he was very appreciative, whereas with my mom, it she just was so upset and angry all the time, and she didn’t know where to direct it, or how to make herself feel better. doi: 10.32481/djph.2021.09.013

JE: What did you find helpful when you were trying to cope with her anger?

MG: Lots of times, I just had to step away from it. It would just get to be too much. And I would call my brother and say, “Hey, can you go and spend some time with mom today?”

I wasn’t sure how much longer I would be able to do it.

Leaning on other people was helpful just to give me a little bit of a break. I was very cognizant of the fact that she could not help how she was feeling or behaving so I constantly reminded myself of that. I was very careful not to react or respond to her with any frustration or anger because I did not want to have any regrets when all was said and done. Also, at one point during the height of her disruptive behaviors, someone reminded me that this was a phase that would not last forever. They reminded me that a phase would come when she no longer knew me or could speak to me.

And I knew when that time came, I’d wish for the days when she still called me by my name, even if it was in anger. That helped me have some perspective. I’ve spoken to so many others who are in the thick of it right now and at their wits end and I try to remind them of those things too.

JE: How did your parents’ friends react to their illnesses? Was it different with your mother’s dementia?

MG: Yes. With my father, help was coming from every direction, we had a lot of friends and family who were popping in with meals, and offering to come and spend a couple hours with him so I could run to the grocery store or pick up his prescriptions, whereas with my mom dementia makes people uncomfortable. With dementia, a person is not themselves anymore, or they can’t carry on a normal conversation. So it’s a lot harder for people to step in and lend a hand, I don’t think they’re as comfortable with it. That made it more difficult because the help was less available. I had seen that earlier when my mother’s brothers developed Alzheimer’s.

When we would visit them in the long-term care facilities, they couldn’t really talk or carry on a conversation, or they would get aggressive. Mom never shied away from that, you know, she leaned into that, and watching her deal with that and find ways to redirect them, or just to bring a smile to their faces, even if they couldn’t talk, you know, that was a big thing.

Sometimes she would come with a little boombox with music that she knew they liked. And when she put that on, it kind of changed their whole demeanor, or she’d bring them ice cream, which they both loved. Watching her with them. I learned a lot about how to try to relate to someone in this situation.

JE: Were there particular safety or physical challenges in caring for your mother at home as her disease progressed?

MG: Yes. She initially wanted to stay in her home after my father had passed, and she wasn’t happy about our hiring some in-home caregivers. When that didn’t work out, I brought her to my home, but that was difficult. She would wake up in the middle of night, disoriented, not being familiar because she

wasn’t in her home, and risked falling down a set of stairs or making her way out the front door in the middle of the night.

Even trying to get her into the car to drive anywhere was a challenge. She started to comfort herself with alcohol, and we had to monitor that. There were just so many possibilities for things to go horribly wrong in that setting, so I realized fairly early on that this was not safe for her.

JE: It must have been stressful for you to find alternatives.

How did you go about deciding to move your mother into a long-term care facility?

MG: Well, when the risks of having her in the home outweighed the benefits, we needed to make that decision.

There was still a great deal of guilt despite knowing we were doing the right thing for her. We started to visit some of the facilities. My cousin, who had been through this, said to me, “Maggie, the problems are not going to go away, it is just going to be different once she moves. You have to set your expectations appropriately.” So, I kept that in mind. I looked for a facility that would be nice enough for her, and where the people seemed really nice. We found one we thought was suitable and visited on Valentine’s Day. It really appealed to mom because she was feeling very lonely at home, even in my home. And things got better for a little bit after she moved there, but we soon saw that the facility wasn’t well equipped to deal with her when she became disruptive and combative.

JE: When her behavior became challenging for the facility, how did you handle that challenge?

MG: Soon, we were referred to another place that was known to be able to deal with difficult behaviors. Around this time, too, my mother was evaluated by the Swank Center. My mother’s medications had gotten sort of screwed up and the Swank Center got them squared away, which helped her disruptive behavior enough that could live in a facility with other residents and not be a risk to herself or to anyone else.

Finding a skilled dementia specialist made a huge difference.

Delaware is greatly in need of more dementia specialist neurologists and geriatric psychiatrists.

JE: So, the medication changes helped and in addition your mother was now in a facility that was more accommodating for people with behavioral difficulties. What were their special skills? How were they more successful?

MG: The director of nursing in that facility had a really, really good handle on how this disease affects people and what you can expect with it, and that overmedicating was not the way to go. She tried to avoid sending residents out to inpatient psychiatric facilities. She said she wanted to know who the person was in the disease and that was more difficult when they were overmedicated. She encouraged her staff to work through disruptive behavior episodes without over-relying on sedation. Their behavioral approach involved “containing” my mom during agitated times, making sure she was away 101

from others, diverting her attention. They took enough time with me to know who she was, and what her triggers were, and what kind of things made her happy. When she was being difficult, they knew what they could say to her, to distract her or to get her mind on something else, which would bring it down a notch.

JE: Yes, this seems another dimension of what you said earlier, how important it is for facilities to know their residents individually. As we wrap up this interview, I want to thank you for sharing so many helpful observations and ideas about your journey and that of your family. Are there any final comments that you want to make?

JE: Like you, it seems, this facility was able to remain in touch with your mother’s individual needs and personality and keep a connection with her as a person.

MG: My last comment is for other caregivers – to emphasize how important it is to care for yourself first! You need to take time for yourself and to ask others for help. There are people who want to help, and sometimes they don’t know how to offer or how to help, so you may need to be specific about what you need from them. And I wish we had more guidance in Delaware regarding which facilities are most helpful and what their particular strengths are. Our choices for where to find help for a person with dementia and difficult behaviors is limited. I’d like health care professionals to know more about how to choose the right facility for a loved one, what to look out for, and where to go first. And finally, if your loved one is having problems that are not responding to treatment from a primary care clinician or a facility, seek out a specialized consultation from a memory center, and use the resources that Delaware provides, including the Alzheimer’s Association. All of these resources help you realize you are not alone in this.

MG: Yes, they were managing her disease without losing track of who she was as a person. I am grateful to the staff, and I recognize that these facilities, doing this difficult work, need more staff and that their workers need to be better compensated. I often feel that there aren’t enough staff to attend to the needs of all the residents that are there. I think it’s just really important that they are able to pay some individual attention to some of these folks, so that they’re not just ignored. And communication between the facilities and hospitals, too, is so important. My experience with the ACE [Acute Care for the Elderly] unit at Wilmington Hospital, for example, has been outstanding – but in other hospitals my experience hasn’t always been so positive. I think it’s really helpful when a person with dementia can be cared for by nurses and doctors familiar with the special needs of persons with dementia. Another concern I had with my mother was when she would arrive at a hospital with bruises or dehydration, and there didn’t seem to be enough interest in how she got that way. Sometimes these bruises aren’t just, you know, part of being older. Fall risk or other problems that could be addressed should be recognized. I feel like falls are too common. In assisted living facilities, some of the regulations seem unprotective – In nursing homes, a hospital bed or a bed rail can prevent falls, but they’re not allowed in Delaware’s Assisted Living Facilities. My mom fell out of her bed in the facility several times and suffered back fractures. If we could have just been allowed to put a bed rail on her bed, maybe we could have prevented those things. She’s also taken many, many falls out of her wheelchair forward because she fell asleep in the wheelchair and hit her head. If seatbelts were allowed, that might be avoided. I understand they are trying to avoid restraints, but maybe there should be more flexibility, to evaluate the need for that kind of protective restraint on a case by case basis. It’s one thing to restrain someone still able to walk around freely, but it’s another thing when someone is wheelchair bound, can’t get up, but still wants to lean forward and could fall. I feel like some of these regulations are wellintended but increase safety risk for some residents.

102 Delaware Journal of Public Health - September 2021

JE: Thank you for your suggestions – and for letting others know about what you have learned in caring for your mother.

103

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FOCUS FOCUS FOCUS FOCUS FOCUS FOCUS 104 Delaware Journal of Public Health - September 2021

Breastfeeding Breastfeeding in in LMICs LMICs poses poses complex complex research research issues issues Breastfeeding Breastfeeding in ininfluence LMICs LMICs poses poses complex complex research issues issues • • Cultural Culturalfactors factors influence nursing nursing practices practicesresearch

• • Water Water insecurity insecurity can candisrupt disrupt exclusive exclusive breastfeeding breastfeeding Cultural Cultural factors factors influence nursing nursing practices practices Breastfeeding Breastfeeding in ininfluence LMICs LMICs poses poses complex complex research research issues issues •• Findings Findings help help reduce reduce HIV HIV transmission transmission via viabreast breastmilk milk Water Waterinsecurity insecuritycan candisrupt disruptexclusive exclusivebreastfeeding breastfeeding •• Cultural Culturalfactors factorsinfluence influencenursing nursingpractices practices •• Findings Findingshelp helpreduce reduceHIV HIVtransmission transmissionvia viabreast breast milk Read Read more more onpages 6––99 Readmilk Moreon pages6109-112 •• Water Waterinsecurity insecuritycan candisrupt disruptexclusive exclusivebreastfeeding breastfeeding Read Readmilk more moreon onpages pages66––99 •• Findings Findingshelp helpreduce reduceHIV HIVtransmission transmissionvia viabreast breast milk Read Readmore moreon onpages pages66––99

MAY/JUNE MAY/JUNE 2021 2021 MAY/JUNE MAY/JUNE 2021 2021

Fogarty Fogarty publishes publishes HIV HIV concept concept mapping mapping project project Fogarty Fogarty publishes publishes HIV HIV concept concept mapping mapping project project implementation implementation implementation implementation and and sustainment sustainment and andsustainment sustainment strategies strategies for for strategies strategies for for the the prevention prevention the theprevention prevention and and treatment treatment and and treatment treatment of of HIV HIV in inaagiven given of ofHIV HIVin inthe athe agiven given context,” context,” context,” context,” the the authors authorsnoted. noted. authors authors noted. noted.

The The findings findings The Theintended findings findings are are intended are are intended intended to to improve improve to toimprove improve the the scale-up scale-up the the scale-up scale-up of of evidenceevidenceFogarty Fogartyscientists scientistshave haveled ledaaconcept conceptmapping mappingexercise exercise of ofevidenceevidencebased based practices practices for for HIV HIVprevention prevention and andled intervention intervention programs programs targeting targeting Fogarty Fogarty scientists scientistshave have led aaconcept concept mapping mapping exercise exercise based based practices practices for for adolescent adolescent adolescents adolescents ininsub-Saharan sub-Saharan Africa.

Africa. programs for forHIV HIVprevention prevention and andintervention intervention programstargeting targeting for for adolescent adolescent HIV HIV prevention prevention adolescents adolescentsininsub-Saharan sub-SaharanAfrica.

Africa.

HIV HIVprevention prevention and and treatment treatmentin insub-Saharan sub-SaharanAfrica.

Africa.The Theauthors authors and andtreatment treatment in insub-Saharan sub-Saharan Africa.

Africa.

The Theauthors authors and suggest suggest approaches approaches that thatconsider consider the thedeterminants determinants and suggest suggestapproaches approaches that that consider the the determinants determinants and and mechanisms mechanisms identified identified in inconsider the thestudy study will will likely likelyhave haveutility utility mechanisms mechanisms identified identified in inthe the study study will willlikely likelyhave haveutility utility for for other otherhealth health conditions conditions and and contexts. contexts. for forother otherhealth healthconditions conditionsand andcontexts. contexts.

The Thefull fullarticle articleisisavailable availableat athttp://bit.ly/AHISA_concept_ http://bit.ly/AHISA_concept_ The Thefull fullarticle articleisisavailable availableat athttp://bit.ly/AHISA_concept_ http://bit.ly/AHISA_concept_ mapping. mapping. mapping. mapping.

PhotoPhoto

by Akintunde

by Akintunde Akinleye/NURHI Akinleye/NURHI PhotoPhoto

by Akintunde

by Akintunde Akinleye/NURHI Akinleye/NURHI

AAteam teamof ofscientists scientistshas hascompleted completedaaconcept conceptmapping mapping Aexercise Ateam teamof of scientists scientists has hascompleted completed aaconcept concept mapping mapping exercise to to identify identifyfactors factors that thatimpact impact the theimplementation implementation exercise exercise to toidentify identify factors factors that thatimpact impact the theimplementation implementation of of HIV HIVprevention prevention and and intervention intervention programs programs for for of ofHIV HIVprevention prevention and andintervention intervention programs programs for forwas adolescents adolescents in insub-Sah2aran sub-Sah2aran Africa.

Africa.

The Theproject project was adolescents adolescents in in sub-Sah2aran sub-Sah2aran Africa.

Africa.in The The project project was was published published as as an an open-access open-accessarticle article in the the journal journal published published as as an an open-access open-access article article in in the the journal journal Implementation ImplementationScience ScienceCommunications Communicationsand andisispart partof of Implementation Implementation Science Communications Communications and andisispart part of of the the NIH-Fogarty NIH-FogartyScience Adolescent Adolescent HIV HIVImplementation Implementation Science Science the theNIH-Fogarty NIH-Fogarty Adolescent HIVImplementation ImplementationScience Science Alliance Alliance (AHISA) (AHISA)Adolescent Initiative.

Initiative. HIV Alliance Alliance(AHISA) (AHISA)Initiative.

Initiative.

AHISA AHISAparticipants participantsresponded respondedto tothe thequestion: question:“In “Inyour your AHISA AHISAparticipants participants responded responded to tothe thequestion: question: “In “Inyour your experience, experience, what whatfactors factors have havefacilitated facilitated or orhindered hindered experience, experience,what what factors factors have havefacilitated facilitated or orhindered hindered implementation implementation of of evidence-based evidence-based HIV HIVprevention prevention or or implementation implementation of ofevidence-based evidence-based HIV HIVprevention prevention or treatment treatment for foradolescents adolescents in insub-Saharan sub-Saharan Africa?”

Africa?”or The The treatment treatment for for adolescents adolescents in in sub-Saharan sub-Saharan Africa?”

Africa?”

The The results resultswere weresorted sortedinto intothematically thematicallyrelevant relevantgroups groups results results were were sorted sortedinto into thematically relevant relevant groups groups and and each each statement statement was wasthematically ranked rankedon onits its importance importance each eachstatement statement was was ranked on onits its importance importance and andchangeability. changeability.

In In all, all,ranked 15 15distinct distinct themes themes emerged. emerged. and andchangeability. changeability.In Inall, all, 15 15 distinct distinct themes themes emerged. emerged.

“Workforce/Workflow” “Workforce/Workflow” and and “HIV “HIV Stigma Stigma and andAdolescent Adolescent “Workforce/Workflow” “Workforce/Workflow” and and “HIV “HIVStigma Stigma and andAdolescent Adolescent Development” Development” were wererated rated highest highest for forimportance, importance, and and Development” Development” were wererated rated highest for forimportance, importance, and andof “Threshold “Threshold Conditions Conditions for forhighest Treatment” Treatment” and and“Structure “Structure of “Threshold “ThresholdConditions Conditions for for Treatment” Treatment” and and “Structure “Structureof of Implementation Implementation Efforts” Efforts” were were rated ratedmost most changeable. changeable.

Implementation ImplementationEfforts” Efforts”were wererated ratedmost mostchangeable. changeable.

“Understanding “Understandingimplementation implementationscience sciencedeterminants determinants “Understanding “Understanding implementation implementation science science determinants determinants and and mechanisms mechanisms can canfacilitate facilitatethe the uptake uptake of ofsuccessful successful and andmechanisms mechanismscan canfacilitate facilitatethe theuptake uptakeof ofsuccessful successful

Former Former NIH NIH Director Director leads leads new new WHO WHO Science Science Council Council Former Former NIH NIH Director Director leads leads new new WHO WHO Science Science Council Council acknowledgedexperts expertsfrom fromaround aroundthe theworld worldin inthe thefields fields As Aspart partof ofits itstransformation, transformation,the theWHO WHO acknowledged As Aspart part of ofits itstransformation, transformation, the theWHO WHO has has established established aaScience ScienceCouncil Council to to has hasestablished established aahigh-priority Science ScienceCouncil Council to to provide provide advice adviceon on high-priority issues issues provide provide advice advice on on high-priority high-priority issues that that could could have have aadirect direct impact impactissues on on that thatcould could have haveaadirect directimpact impacton on global global health. health. global globalhealth. health.

Led Ledby byformer formerNIH NIHDirector DirectorDr. Dr.Harold Harold Led Ledby byformer former NIH NIHDirector Director Dr. Dr. Harold Harold Varmus, Varmus, its itsmembers members include include several several Varmus, Varmus, its members members include include several several past past and andits present present Fogarty Fogarty grantees, grantees, past pastand and present present Fogarty Fogarty grantees, grantees, such such as asDr. Dr. Adeeba Adeeba Kamarulzaman Kamarulzaman Former FormerNIH NIHDirector Directorand and Nobel Nobel laureate laureate such such as as Dr. Dr. Adeeba Adeeba Kamarulzaman Kamarulzaman of of the the University University of of Malaya, Malaya, Dr. Dr.Salim Salim Former FormerNIH NIHDirector Directorand and Dr. Dr. Harold Harold Varmus Varmus Nobel Nobel laureate laureate of ofthe theUniversity University of ofMalaya, Malaya, Dr. Dr. Salim Salim Abdool Abdool Karim Karimof ofCAPRISA CAPRISA in in South South Dr. Dr.Harold HaroldVarmus Varmus Abdool Abdool Karim Karim of of CAPRISA CAPRISA in in South South Africa, Africa,Dr. Dr.Mary-Claire Mary-ClaireKing Kingof ofthe theUniversity Universityof ofWashington Washington Africa, Africa, Dr. Dr. Mary-Claire Mary-Claire King King of ofthe the University of ofWashington Washington and and Dr. Dr. Jean Jean William William(Bill) (Bill) Pape Pape of ofUniversity GHESKIO GHESKIOin in Haiti.

Haiti. and andDr. Dr.Jean Jean William William (Bill) (Bill) Pape Pape of ofHeard GHESKIO GHESKIO in inEuropean Haiti.

Haiti.

Additional Additional members members are are Dr. Dr. Edith Edith Heard of ofthe the European Additional AdditionalBiology members members are areDr. Dr.Edith Edith Heard Heardof ofDr. the theAbla European European Molecular Molecular Biology Laboratory Laboratory in inGermany, Germany, Dr. Abla Mehio Mehio Molecular Molecular Biology Biology Laboratory Laboratory in inGermany, Germany, Abla AblaMehio Mehio Sibai Sibai of ofthe the American American University University of ofBeirut, Beirut,Dr. Dr.Denis Denis Sibai Sibaiof ofthe the American American University University of of Beirut, Beirut, Dr. Dr.Denis Denis Mukwege Mukwege who who isisaagynecologist gynecologist in in the the Democratic Democratic Republic Republic Mukwege Mukwege who who isisaYongyuth aYongyuth gynecologist gynecologist in inthe theDemocratic Democratic Republic Republic of of Congo Congoand and Dr. Dr. Yuthavong Yuthavong of ofthe theNational National Centre Centre of ofCongo Congo and and Dr. Dr.Yongyuth Yongyuth Yuthavong Yuthavong of ofthe the National Centre Centre for for Genetic Genetic Engineering Engineering and and Biotechnology Biotechnology in inNational Thailand.

Thailand. for forGenetic GeneticEngineering Engineeringand andBiotechnology Biotechnologyin inThailand.

Thailand.

Members Membersof ofthe theCouncil Councilserve servein intheir theirpersonal personalcapacity capacity Members Members of ofthe the Council serve serve in in their theirpersonal personal capacity capacity and and represent represent aaCouncil broad broadrange range of of disciplines disciplines encompassing encompassing and andrepresent represent aof abroad broad range range of ofbasic disciplines disciplines encompassing encompassing many many aspects aspectsof science, science, from from basic research research to toimpleimplemany manyaspects aspects of ofscience, science, from from basic basic research research to to impleimple- as mentation mentation science. science.

Members Members are are recruited recruited and and selected selected as mentation mentationscience. science.Members Membersare arerecruited recruitedand andselected selectedas as

22 22

acknowledged acknowledged experts experts from fromaround around the theworld world in inthe thefields fields of of basic basicscience, science, translational translational and andclinical clinical research, research, social social of ofbasic basicscience, science, translational translational and andhealth. clinical clinicalresearch, research,social social sciences, sciences, epidemiology epidemiology and andpublic public health. sciences, sciences,epidemiology epidemiologyand andpublic publichealth. health.

The TheScience ScienceCouncil Councilwill willhave havethe thefollowing followingfunctions: functions: The The Science Science Council Council will will have have the the following following functions: functions: ••Evaluate Evaluateurgent, urgent,high highpriority priorityscientific scientificissues issues and and ••Evaluate Evaluate urgent, urgent, high high priority priority scientific scientific issues issues and and provide provideinput input and and guidance guidance on on translating translating them them to to provide provide input inputimpact and andguidance guidance on ontranslating translating them them to to public public health health impact in infurtherance furtherance of ofWHO’s WHO’s mission. mission. public publichealth healthimpact impactin infurtherance furtheranceof ofWHO’s WHO’smission. mission.

••Identify Identifycurrent currentand andnew newscience scienceand andtechnology technologyissues issues ••Identify Identify current current and and new newscience science and andtechnology technology issues issues that thatWHO WHO needs needs to toaddress, address, including including global globalhealth health that thatWHO WHO needs needs to address, address, including including global global health health threats, threats, and and new newto advances advances with with aapotential potential for for direct director or threats, threats,impact and andnew new advances advances with withaapotential potentialfor fordirect director or indirect indirect impact on on global globalhealth. health. indirect indirectimpact impacton onglobal globalhealth. health.

••Provide Providestrategic strategicorientation orientationto toWHO’s WHO’sactions actionsin inscience, science, ••Provide Provide strategic strategic orientation orientationto toWHO’s WHO’sactions actionsin inscience, science, research research and andinnovation. innovation. research researchand andinnovation. innovation.

••Participate Participatein inthe therapid rapidand andconfidential confidentialreview reviewof ofWHO WHO ••Participate Participate in inthe therapid rapid and andrequested confidential confidential review of ofWHO WHO normative normativeproducts, products, when when requested by byreview the theDirectorDirectornormative normativeproducts, products,when whenrequested requestedby bythe theDirectorDirectorGeneral.

General.

General.

General.

••Undertake Undertakeother otherduties dutiesand andfunctions functionsconsistent consistentwith with ••Undertake Undertake other other duties dutiesand and functions functions consistent consistent with these theseTerms Terms of ofReference, Reference, when when requested requested by bythe thewith these theseTerms Termsof ofReference, Reference,when whenrequested requestedby bythe the Director-General.

Director-General.

Director-General.

Director-General.

More Moreinformation informationisisavailable availableat: at:https://www.who.int/ https://www.who.int/ More Moreinformation informationisisavailable availableat: at:https://www.who.int/ https://www.who.int/ groups/science-council. groups/science-council. groups/science-council. groups/science-council.

105

MAY/JUNE 2021 MAY/JUNE 2021

Fogarty Fogarty modelers modelers tap tap networks networks to to tackle tackle COVID-19 COVID-19

By Susan Scutti

By Susan Scutti

Relationship-building and a commitment to open science Relationship-building a commitment to openduring science underpinned Fogarty’sand many modeling triumphs underpinned Fogarty’s many modeling triumphs during the COVID-19 pandemic. “Our international work has the COVID-19 pandemic.

“Our international workViboud, has always been quite opportunistic,” said Dr. Cécile always been quite opportunistic,” said Dr. Cécile Viboud, senior staff scientist. In 18 years with Fogarty’s Division senior staff scientist.

In 18 years Fogarty’s Division of International Epidemiology andwith Population Studies, of International Epidemiology and Population Studies, Viboud has worked with pretty much any scientist wishing Viboud has worked with pretty much any scientist wishing to collaborate on modeling projects and respiratory virus to collaborate on modeling projects and respiratory virus surveillance. “We had this network of collaborators that surveillance.

“We had this network of collaborators that we had built for a long time and that helped Fogarty to we had built for a long time and that helped Fogarty to begin sharing COVID-19 information early on,” she said. begin sharing COVID-19 information early on,” she said.

In particular, collaborations with one team of Chinese In particular, withproductive.” one team ofDr. Chinese scientists havecollaborations been “incredibly Hongjie Yu, scientists have been “incredibly productive.”

Dr. Hongjie originally part of the Chinese CDC, had spent time at theYu, originally part of the Chinese CDC, had spent time at the U.S. CDC and the NIH several years ago. “He has since gone U.S. CDC and the NIH several years ago.

“He has since back to China and is now at Fudan University, where hegone has back togreat China and is now at Fudan University, where he has been a resource,” said been a great resource,” said Viboud.

“He also has a lot of Viboud.

“He also has a lot of good ideas.” good ideas.”

projections via the Scenario Modeling Hub have been our projections via the Scenario Modeling Hub have been our most policy-relevant work; we’ve sent them to the White most policy-relevant work; we’ve sent them to the White House, the CDC, the WHO and also some state governors.”

House, theinvited CDC, the and also some state governors.”

The CDC the WHO scientists to publish an MMWR The CDC invited the scientists to publish an MMWR report on May 5th to help formulate guidance for local report on MayWhen 5th toCDC helpDirector formulate local jurisdictions.

Dr.guidance Rochellefor Walensky jurisdictions.

When CDC Director Dr. Rochelle Walensky discussed the data at a White House press briefing, discussed the data at realized a White House press briefing, were Viboud said the team that their projections Viboud said the team realized that their projections actually being used. A paper that appeared in JAMAwere actually being used. paper that appeared in JAMA Internal Medicine lastAsummer is another undeniable Internal Medicine last summer is another undeniable standout. “This is the most read paper published in the standout.

“This the was mostitread paper publishedofinexcess the journal ever.

Notisonly the first estimation journal ever.

Not only was it the first estimation of excess mortality, but it also described conditions in New York mortality, buteastern it also seaboard, described conditions in New York to City and the and drew comparisons City and the eastern seaboard, and drew comparisons to the 1918 flu pandemic,” said Viboud. the 1918 flu pandemic,” said Viboud.

Another significant Another significant paper looked at the paper looked at of the early dynamics the early dynamics of the SARS-CoV-2 epidemic SARS-CoV-2 epidemic in Portugal and Also playing an instrumental in Portugal and Also playing an instrumental featured Fogarty’s Dr. role was Fogarty’s Chinese featured Fogarty’s role was Fogarty’s Chinese Nídia Trovão as co-Dr. postdoctoral fellow, Dr. Nídia Trovão Trovão’s as copostdoctoral Dr. lead-author.

Kaiyuan Sun,fellow, who happened lead-author.

Trovão’s Kaiyuan Sun, who happened pandemic work also to be visiting family in pandemic work also to be visiting family in included training China when the outbreak included training China when the outbreak scientists in lowbegan. Soon back in the scientists in lowbegan. in the and middle-income U.S., heSoon saw back the Chinese and middle-income U.S., he saw the Chinese countries (LMICs) authorities were providing countries (LMICs) authorities to use a portable open-sourcewere dataproviding on early Fogarty’s disease modeling team studied transmission chains among SARS-CoV-2-infected to use a portable open-source data on early genomic sequencing cases, including age, sex, individuals in China’s Hunanteam province.

Fogarty’s disease modeling studied transmission chains among SARS-CoV-2-infected genomic cases, including age,history, sex, platform sequencing to generate travel and exposure individuals in China’s Hunan province. platform to generate travel and exposure history, full SARS-CoV-2 genomes, create genomic databases, and and disease severity. “This was a big deal,” Sun said. He full SARS-CoV-2 genomes, create genomic databases, and and disease severity.

“This was a big deal,” Sun said.

He study virus mutation patterns and evolutionary dynamics. and the team quickly collected, translated and formatted the study virus mutation patterns and evolutionary dynamics. and the team quickly collected, translated and formatted the The immediate goal was to produce SARS-CoV-2 information and shared it online. “We were the first group to The immediate goal was to produce SARS-CoV-2 information andofshared it online.

“We were the first group sequences to aid in pandemic response.

Longer term, the share this type data and after us other groups began to to sequences to aid in pandemic response.

Longer better term, the share this type of data and after us other groups began to hope is that genomics will help LMIC scientists do the same.” hope is that genomics will help LMIC scientists better do the same.” understand the viral dynamics within their countries so understand the viralpublic dynamics within their countries they can implement health strategies to controlso For Sun, research is all about relationships and connecthey can implement public health strategies to control For Sun, research is all about relationships and connecthem. “They are no longer dependent on scientists in tions. For example, his former collaborator, Dr. Marco Ajelli them.

“They are no longer dependent on scientists in tions.

For example, his former collaborator, Dr. Marco Ajelli higher-income countries to identify, analyze and interpret at Indiana University, noticed Sun’s data sharing efforts higher-income countries to identify, analyze and interpret at Indiana University, noticed Sun’s data sharing efforts their results,” Trovão observed. online. Through Ajelli, the Fogarty team established a their results,” Trovão observed. online.

Through the Fogarty team established a relationship withAjelli, Fudan University and the Hunan CDC. relationship with Fudan University and the Hunan CDC. “Despite the pandemic, we were able to run virtual That resulted in an important Science publication that “Despite theand pandemic, we were able to runAfrica virtual That resulted Science publication workshops train many scientists from and estimated halfin ofan all important transmissions occurred beforethat patients workshops and train many scientists from Africa estimated half of all transmissions occurred before patients Asia on topics from sample processing to complexand showed symptoms, a unique feature of the SARS-CoV-2 Asia on topics frompave sample processing to complex showed symptoms, a unique feature ofcontribution the SARS-CoV-2 analyses; this will the way for improved surveillance virus and disease. Another significant came analyses; this will pave the way for improved surveillance virus and disease.

Another significant contribution came of COVID-19 variants globally and mitigate future from scientists in the Netherlands who used the data of COVID-19 variants globally and mitigate future from scientists in the Netherlands who used the data pandemics” said Dr. David Spiro, division director. compiled by Sun to estimate the virus’s incubation period, pandemics” said Dr. David Spiro, division director. compiled

by Sun to estimate quarantine the virus’s incubation instrumental in establishing guidelines.period, instrumental in establishing quarantine guidelines.

RESOURCES Deciding which pandemic-related project has been most RESOURCES Deciding which pandemic-related project has been most important is difficult, said Viboud. “Our six-month http://bit.ly/fogarty-modelers-covid important is difficult, said Viboud. “Our six-month 106 Delaware Journal of Public Health - September 2021

http://bit.ly/fogarty-modelers-covid

3 3

PROFILE Fogarty Fellow continues Zika and dengue studies as NIAID lab chief

By Susan Scutti

In 2015, an outbreak of Zika fever swept South America and the Caribbean. Although infection typically caused only mild symptoms in adults, thousands of pregnant women who became infected suffered miscarriages and more than 3,700 delivered babies with microcephaly or other congenital abnormalities. Zika virus is a relative of the region’s endemic dengue virus—both are mosquitoborne flaviviruses—so the epidemic raised questions about whether a prior infection with one of dengue’s four serotypes might alter a person’s risk of Zika disease, or vice versa. Fogarty Fellow Dr. Leah Katzelnick’s project answered this by showing a previous Zika infection increases the risk of dengue disease severity.

Dengue itself sparks a complex immune response, explained Katzelnick, now chief of the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) Viral Epidemiology and Immunity Unit. A first-time infection with dengue generally causes no symptoms, or only mild ones. However, a previously infected person has an increased risk of severe disease if re-infected. “My original Fogarty project was proposing to look at the dynamics of the dengue antibody response over time in relation to immunity,” said Katzelnick. “So, after your first infection, do your antibodies wane? Do only certain kinds of antibodies wane?”

Katzelnick, who was then a Berkeley-based collaborator working with a team in Nicaragua, arrived in South America in mid-2019—during the first post-Zika dengue epidemic. Witnessing “skyrocketing” cases, the team hypothesized that prior Zika infections might be causing “a more explosive dengue wave than we’d ever seen,” said Katzelnick. She quickly pivoted her research to study how Zika immunity modified dengue disease.

Surprisingly, this wasn’t the first time she’d changed course while a Fogarty Fellow. A political crisis in Nicaragua had prevented her planned arrival in early 2019, so she’d spent the first six months of her fellowship in Ecuador studying the dengue vaccine. Disheartened at first, Katzelnick soon embraced the “amazing opportunity

Leah Katzelnick, Ph.D., M.P.H. Fogarty Fellow:

2018-2019

US Institution:

University of California, Berkeley

Foreign Institutions: Universidad San Francisco de Quito, Ecuador National Virology Laboratory, Managua, Nicaragua Research area:

Connection between Zika and dengue infections

to see how you set up one of these huge cohort studies before joining my Nicaraguan colleagues.”

Each project revealed dengue’s insidious power in addition to different aspects of global health research.

In Nicaragua, she tracked a powerful epidemic as it progressed, while in Ecuador, she developed a companion test for the dengue vaccine. “The vaccine can actually increase your future risk of severe dengue disease if you’ve never had an infection. So, we were looking for a test that would say ‘yes’ or ‘no.’ Are you positive for dengue or not?” Direct contact with primary investigators on each project proved invaluable. “While I knew the data really well, I didn’t know how you actually do all this—coordinate a major cohort with thousands of people and bring experts in various areas together in a well-integrated system.” Along with project management skills, she learned about the patient consenting process and helped to build capacity. “I taught different classes in both countries on new statistical methods for analyzing clinical data and on the use of open source programs and tools.”

When her fellowship concluded at the end of 2019, Katzelnick transitioned to her current position at NIAID, where she continues to explore immune interactions between flaviviruses. “My Fogarty experience is the model for setting up our NIAID viral epidemiology and immunity lab,” she said. “The fellowship taught me how to connect with new researchers on a project, find shared goals and reciprocally share and transfer knowledge.” For Katzelnick, her Fogarty experience was “completely essential for feeling like a real researcher in global health.”

RESOURCES

4

http://bit.ly/leah-katzelnick 107

Q&A

DR. EMMY OKELLO, MD, PHD, FACC

Dr. Emmy Okello is chief of cardiology at the Uganda Heart Institute and honorary associate professor at Makerere University. Okello graduated from Mbarara University School of Medicine and earned his Ph.D. from Makerere University. He received advanced training at Case Western Reserve University through a fellowship of the Medical Education Partnership Initiative (MEPI)— managed by Fogarty and funded by PEPFAR, the NIH Common Fund and the National Heart, Lung and Blood Institute. In recognition of his rheumatic heart disease research, Okello was named a Fellow of the American College of Cardiology.

Why cardiology?

In low-income settings, we’re seeing an epidemiological transition to more coronary heart disease. Ugandans who are not exposed to high-income lifestyles are now presenting with heart attacks. This didn’t happen 20 years ago. Why? Is it diet? High sugar levels? Our economy is weak and cannot sustain an epidemic of heart disease, so the answer lies in prevention. Yet, to prevent, we must first understand what is causing this shift. Is it the traditional risk factors for coronary heart disease as described in the West? Or is there something unique to our environment—is infection contributing to coronary heart disease? This is what I’m working to discover.

Tell us about rheumatic heart disease.

Rheumatic heart disease (RHD), which afflicts 40 million people worldwide, begins with a childhood sore throat.

Most of the time, sore throats are triggered by viral illnesses, but 3 out of 10 times it is caused by strep A bacteria, which can result in streptococcal pharyngitis.

In some people, that causes the body’s immunity to act against itself, resulting in a febrile illness called acute rheumatic fever (ARF). Now, if you’re in the tropics, fever could mean malaria or other febrile illnesses, so ARF is often missed or confused with something else. Yet, if you identify rheumatic fever, you can treat and stop it—an antibiotic and aspirin is usually all it takes. Unfortunately, if this stage is missed, the disease progresses and years later, as young adults, these patients show up in the hospital with full-blown rheumatic heart disease, usually with heart failure due to irreversible damage to their heart valves. My Ph.D. research focused on the burden, risk factors and outcome of RHD in Uganda, where the prevalence is about 3% yet only 1-2% know their status. With 70% of Uganda’s 40 million population below the age of 35, RHD is an epidemic we cannot afford to manage. Our study also found 17% mortality, a result of late diagnosis when surgery is either impossible or unaffordable.

How did MEPI advance your career?

During my fellowship years, I was supported to conduct the first study of genetic susceptibility to RHD in Uganda. I also received advanced training in the U.S. at Case Western Reserve University. I focused on systems management that helped me grow as a scientific leader and advance as an early-career researcher. Peer-to-peer support was another part of the program and I continue to assist and promote faculty researchers at Makerere and the Uganda Heart Institute as a way to continue building research capacity in Uganda. When I went to Case Western, the culture was different, the medical system was different. Every day I was forced to think in new ways. It was life-changing! I learned how to run high-tech services, properly and under a lot of pressure, while delivering quality. When I came back, sometimes it was a little overwhelming because I knew how much needed to be done—back in Cleveland, everything ran like clockwork. Still, that became the motivation; I wanted to be part of the solution. For doctors from developing nations it is very important to see a system running properly. It changes your mindset and helps you understand that things can change.

What advice do you offer mentees?

Collaborate! Sometimes all you need is one colleague in a high-income country and another within your own country and from there you can build. It will take time to establish trust, to understand each other’s capacities and mutual interests. Eventually, though, you get to the point where you can apply together for grants and become part of studies implemented across the globe. In collaborations, we researchers from LMICs can contribute our reverse innovations and share our knowledge of diseases the current generation of HIC doctors do not know. We have questions about certain diseases that may be unique to our environment and sharing will be of mutual benefit. There’s so much opportunity to work together in a sustainable, respectful way.

RESOURCES http://bit.ly/emmy-okello

108 Delaware Journal of Public Health - September 2021

5

NIH breastfeeding research essential FOCUS to child F O Chealth US

to child health

Breastfeeding and infant nutrition in low- and middle-income countries pose complex research challenges.

supported study of about 1,000 mothers of newborns in Kenya, about 40% of those with formal employment had ended EBF by three months, the maternity leave period mandated by the government.

AA

UNICEF Ethiopia/2021/Nahom Tesfaye

A number of barriers exist in low- and middle-income For premature and sick infants whose mothers cannot countries (LMICs) and each poses unique research lthough six places, monthscultural of exclusive breastfeeding (EBF) nurse, Breastfeeding and infant has nutrition in low- successful and middle-income countries pose milk banking proven in countries questions.

In some practices mean women complex research challenges. long been by delay thebreastfeeding WHO to promote lthough sixrecommended months of exclusive (EBF) such Breastfeeding and Africa infant nutrition low- andPATH middle-income countries pose as South and inIndia. scientist Dr. discard has the antibody-rich colostrum or nursing. complex research challenges. hasfind longitbeen recommended by thehas WHO to promote healthy child development, stalled in Kiersten Israel-Ballard has studied the feasibility of Other mothers challenging toprogress balance breastfeeding healthy child development, progress has stalled in supported of about 1,000 of newborns some low-resource settings, jeopardizing efforts to reduce expanding thestudy practice to rural andmothers underserved areas in with formal employment or fulfilling household needs supported study of about 1,000 mothers of employment newborns in had some low-resource settings, jeopardizing efforts to reduce Kenya, about 40% of those with formal infant mortality.

Only about 38% of the world’s infants in LMICs. “Milk banks could play a critical role in for firewood and clean water. Milk banking has proven a Kenya, EBF aboutby 40% of those with the formal employment infant mortality.

Only about 38% of the world’s infants ended three months, maternity leavehad period benefit from EBFin forsome the first 180 days of difficult life. ensuring that exclusive human milk diets are possible successful solution locations but is to ended EBF by three months, the maternity leave period benefit from EBF for the first 180 days of life. mandated by the government. for mandated all infants, those who are most vulnerable, scale-up in rural areas. For moms living with HIV, drug byespecially the government.

A number ofreduced barriersthe exist in of lowand middle-income such as pre-term babies, and possibly including those therapies have risk transmission through A number of barriers exist in low- and middle-income For premature and sick infants whose zones, mothers cannot countries (LMICs) each still poses unique that research in emergency situations, aswhose conflict natural breastfeeding, but(LMICs) theand virus a danger must be For premature and sick such infants mothers cannot countries andiseach poses unique research nurse, milk banking has proven successful in countries questions.

In some places, cultural practices mean women or other humanitarian sheinsaid.

But nurse, milk banking has proven crises,” successful countries managed.

NIH studies have also explored other aspects questions.

In some places, cultural practices mean women disasters such as South South Africa and India.

PATH scientist discard the antibody-rich colostrum delay nursing. such as Africa India.

PATH scientist Dr. Dr. discard the such antibody-rich colostrum or delay nursing. turning this vision intoand reality will require an investment of infant nutrition, as the ability oforbreast milk to Kiersten Israel-Ballard has studied feasibility of Other mothers find itwith challenging balance breastfeeding Kiersten Israel-Ballard has studied thethe feasibility Other mothers it early challenging to balance breastfeeding in implementation research and establishment ofofethical help LMIC infants dealfind andtofrequent exposure expanding the practice to rural and underserved areas with formal employment or fulfilling household needs expanding the practice to rural and underserved areas with formal employment or fulfilling household needs guidelines and safety standards. to infectious diseases. Finally, advances in microbiome could play a critical role role in in for firewood clean water.

Milk banking hasproven provenaa in LMICs. LMICs.“Milk “Milkbanks banks could play a critical for firewood and and clean water.

Milk banking has research hold great potential to help scientists better ensuring that exclusive human milk diets are are possible successful solution in some locations but is difficultto to ensuring that exclusive human milk diets possible successful solution in some locations but is difficult Studies are also needed to learn more about breast understand the relationship between breastfeeding and for all infants, especially those who areare most vulnerable, scale-up in rural areas.

For moms living withHIV, HIV,drug drug for all infants, especially those who most vulnerable, scale-up in rural areas.

For moms living with milk itself, said Dr. Dan Raiten, a program director at infant health. such as pre-term babies, and possibly including thosethose therapies reduced of transmissionthrough through such asNational pre-term babies, and possibly including therapies havehave reduced the the riskrisk of transmission NIH’s Institute of Child Health andnatural Human emergency situations, such as conflict zones, breastfeeding, but the virus is still a danger that must be thein in emergency situations, such to asdo conflict zones, natural but the virusprovides is still athe danger that must be Development.

“What we’re trying is change Thebreastfeeding, notion that breastfeeding healthiest disasters or other humanitarian crises,” she said. the But managed. NIH studies have also explored other aspects disasters or other humanitarian crises,” she said. managed.

NIH studies have also explored other aspects paradigm importance ofan this very But start in life is founded on decades of research. turning and this recognize vision into the reality will require investment of infant nutrition, such as the ability of breast milk to turning this vision into reality will require an investment of infant nutrition, such as the ability of breast milk to biological system—the that human milk “Breastfeeding alternatives in with low-income in implementation research andnotion establishment of ethical help LMIC infants deal early andsettings frequentare exposure complex in implementation research and establishment of ethical help LMIC infants deal with early and frequent exposure guidelines standards. is more than and justsafety the sum of its parts,” Raiten noted.

He to infectious diseases.

Finally, content advancesand in microbiome often both inadequate in nutritional also guidelines and safety standards. toprone infectious diseases.

Finally, advances inleads microbiome research hold great potential to help scientists better recently convened a group of scientists to stimulate the very to bacterial contamination, which to research great help scientists better Studies are also needed to learn more gather about breast understand the potential relationship between breastfeeding nutrition research community, information a high risk ofhold diarrhea, and bothto factors contribute to and infant Studies are also needed to learn more about breast understand the relationship between breastfeeding and milk itself, said Dr. Dan Raiten, a program director at infant health. about what is established science and identify research the malnutrition we see with non-breast-fed babies,” the NIH’s National Institute of Childa Health anddirector Human at milk itself, said Dr. Dan Raiten, program infant health. gaps. Five work groups are exploring the biology and explained Dr. Robert Black, a professor at Johns Hopkins Development.

“What Institute we’re trying to do isHealth changeand the Human The notion that breastfeeding provides the healthiest the NIH’s National of Child ecology of breast milk, the impact of the infant-mother University who has led child nutrition studies for decades. paradigm and recognize the importance of is this very the start inthat life is founded on decades of the research.

Development.

“What we’re trying to do change The notion breastfeeding provides healthiest relationship, possible methodologies for advancing this Frequently examined topics include ways to encourage complex biological system—the notion that human milk “Breastfeeding alternatives in low-income settings are paradigm and recognize theimplementation importance of this very start in life and is founded on decades of research. research, and science. breastfeeding how to achieve sufficient nutrition from is more and thantranslation just the sum of its parts,” Raiten noted.

He often both inadequate in nutritional content and also complex biological system—the notion that human milk “Breastfeeding alternatives in low-income settings are Raiten saidconvened the setting is of of paramount concern.

“Context complementary foods while breastfeeding within recently a group scientists to stimulate the very prone to bacterial contamination, whichspecific leads to is more than just the sum of its parts,” Raiten noted.

He often both inadequate in nutritional content and also matters—the decisions made about infant feeding are societiesaand according Black. infant nutrition research community, gather information highsettings, risk of diarrhea, andtoboth factors contribute to recently convened a group of scientists to stimulate the very prone to bacterial contamination, which leads to going to be different depending on and youridentify context.

This about what is established science research the malnutrition we see with non-breast-fed babies,” infant nutrition research community, gather information a highexplained riskfactor of diarrhea, and both factors contribute to gaps. Five groups exploring theabiology and Dr. Black, a professor at LMIC Johns Hopkins initiative is awork response toare a global need, domestic need A significant isRobert that employment among what is established science and identify the malnutrition wehas seein with non-breast-fed babies,” ecology of breast milk, impact of the infant-mother University who led child nutrition studies for decades. andabout a fundamental needthe to understand the biologyresearch of mothers has skyrocketed the last 20 years, with gaps.

Five work groups are exploring the biology and explained Dr.working Robert Black, athe professor at Johns Hopkins human relationship, possible methodologies for advancing this Frequently examined topics include encourage milk.” about half now outside home.ways In ato Fogartyresearch,ofand translation andimpact implementation science. ecology breast milk, the of the infant-mother breastfeeding to nutrition achieve sufficient from University who hasand ledhow child studiesnutrition for decades.

Raiten said thepossible setting ismethodologies of paramount concern.

“Context complementary while breastfeeding specific relationship, for advancing this Frequently examinedfoods topics include ways towithin encourage in thisand section by made Susan Scutti matters—the decisions about infant feeding are societies and settings, according to Black.nutrition from Articles research, translation and implementation science. breastfeeding and how to achieve sufficient 6 going tosaid be different depending on your context.

This “Context http://bit.ly/breastfeeding-lmics Raiten the setting is of paramount concern. complementary foods while breastfeeding within specific Resources: initiative is a response to a global need, a domestic need A significant factor is that employment among LMIC matters—the decisions made about infant feeding are societies and settings, according to Black. and a fundamental need to understand the biology of mothers has skyrocketed in the last 20 years, with going to be different depending on your context. This human milk.” about half now working outside the home. In a Fogartyinitiative is a response to a global need, a domestic need A significant factor is that employment among LMIC and a fundamental need to understand the biology of mothers has skyrocketed in the last 20 years, with Articles in this section by Susan Scutti human milk.” about6half now working outside the home. In a FogartyResources: http://bit.ly/breastfeeding-lmics

6

Articles in this section by Susan Scutti Resources: http://bit.ly/breastfeeding-lmics 109

UNICEF Ethiopia/2021/Nahom Tesfaye

UNICEF Ethiopia/2021/Nahom Tesfaye

A

NIH breastfeeding NIH breastfeeding research essential essential to research child health

lthough six months of exclusive breastfeeding (EBF) has long been recommended by the WHO to promote healthy child development, progress has stalled in some low-resource settings, jeopardizing efforts to reduce infant mortality. Only about 38% of the world’s infants benefit from EBF for the first 180 days of life.

FOCUS ON BREASTFEEDING IN LMICS POSES COMPLEX RESEARCH ISSUES

Cultural factors influence breastfeeding practices

prelacteal feeds—the idea that you must give something to the baby before you start breastfeeding, such as honey or sugar water, explained Caulfield. This delays initiation, which in turn may limit production of a mother’s milk. “In Pakistan a large majority of babies have prelacteal feeds,” said Caulfield. “It’s very culturally driven.” Colostrum— the earliest breast milk produced after birth which is thought to be “unclean” in some cultures given its yellow color —was fed to a large majority of babies, more than 90% at each site. Yet, the practice of discarding colostrum still persists in some places, including Peru, according to another Fogarty-funded study.

Infants in low-resource settings may be malnourished and are likely to endure numerous intestinal infections in the first years of life. To better understand how that affects their health and development, an international team working in eight low- and middle-income countries (LMICs) followed about 2,000 newborns for their first two years of life. Known as MALBREASTFEEDING PRACTICES ED, the Etiology, Risk Factors and Interactions of Enteric Breastfeeding Prelacteal within hour Infections and Malnutrition and feeding of birth the Consequences for Child Health and Development project was 62% 13% Bangladesh funded by the Bill and Melinda 45% Brazil 6% Gates Foundation and co-led by Fogarty and the Foundation for the 12% 61% India NIH. The program—begun in 2009 41% Nepal 18% and still generating publications— operated study sites in Bangladesh, 75% Peru 8% Brazil, India, Nepal, Pakistan, Peru, South Africa 59% 2% South Africa and Tanzania.

82% Tanzania “MAL-ED was designed to Pakistan did not report data characterize very carefully the SOURCE: Data from the MAL-ED study. diet of the child, including breastfeeding and the introduction of complementary foods, as well as to characterize gut health,” explained Dr. Laura Caulfield, one of the project’s 120 principal investigators.

Beyond nutrients, breast milk contains substances that foster growth and development, plus a host of immune factors that decrease the likelihood of pathogens causing disease, explained Caulfield.

A common impediment to exclusive breastfeeding is

110 Delaware Journal of Public Health - September 2021

The central finding of the MAL-ED study surprised researchers: pervasive, lowlevel exposure to pathogens—and not necessarily having diarrhea or becoming ill—was associated with underdevelopment. Caulfield said that was disconcerting “because in essence we were saying that it’s not really getting ill but ‘under the iceberg’ kinds of things that cause growth faltering leading to stunting.”

In some countries, women give babies honey or sugar water before initiating breastfeeding.

Photo by Carla Mattal/HEP+

An examination of breastfeeding practices was included at all eight study sites. Despite WHO recommendations for exclusive breastfeeding for the first 180 days of life, the vast majority of babies—81%—transitioned to other forms of nutrition before that. Typically, exclusive breastfeeding lasted about a month before animal milks were introduced, quickly followed by solids. “The public health community also recommends breastfeeding be initiated in the first hour, which is best in terms of establishing a mother’s milk supply and helps with neonatal adjustment to the extra-uterine environment,” said Caulfield. Adoption of that guidance varied by country from 41% to 82%. (see chart)

4%

Possibly the most insightful MAL-ED paper examined the fact that women go in and out of exclusive breastfeeding all the time, said Caulfield. Most mothers, for example, will need to go somewhere and so ask family or neighbors to feed their infants.

The study’s finding suggests the difficulty in “how you support women who are breastfeeding, and, if there have been gaps, how do you help a woman re-establish her milk supply so that she can successfully return to exclusive breastfeeding,” said Caulfield.

FOCUS ON BREASTFEEDING IN LMICS POSES COMPLEX RESEARCH ISSUES

Research findings prevent HIV transmission by nursing In the days when HIV/AIDS was a death sentence, a recommendation against breastfeeding might have seemed the simplest way to prevent disease transmission to newborns. But scientists understood that would pose other risks. “We knew from the 1960s that early weaning often causes death in low-resource settings where risks of diarrheal and infectious diseases are high, and safe breast milk alternatives may not be available,” said Dr. Grace Aldrovandi, UCLA scientist and a lead investigator in an international clinical trials network. “The WHO came out with the recommendation that HIV-infected women should exclusively breastfeed for four months and then abruptly wean.”

The feasibility of this approach was tested by weighing the dangers of early weaning against the risks of HIV in a study in Zambia. “Much to our surprise, at the end of two years, the same number of children in the abrupt weaning group died of infectious diseases as those that we let breastfeed longer who got HIV,” said Aldrovandi.

These results “surprised the field,” yet, in time, “with the introduction of effective ART in sub-Saharan Africa, the calculus totally changed.”

Before ART became widely available in Africa, scientists explored various solutions to the problem of maternalchild HIV transmission through breastfeeding. For example, PATH scientist Dr. Kiersten Israel-Ballard created a simple process so that a mother with HIV could flash-heat her own breast milk in her own home. A feasibility trial in Tanzania, funded by the NIH’s National Institute of Child Health and Human Development, proved none of the samples contained bacterial pathogens and “also showed that if you gave mothers this option, many would use it,” said Israel-Ballard.

Breastfeeding is still a critical issue in LMICs, where a significant number of babies remain at risk of HIV. “If you’re a baby gestating in the womb of a woman with HIV who isn’t taking antiretrovirals, you have three bullets to dodge,” explained Aldrovandi. HIV can be transmitted from mom to baby in utero (about 10-15% of cases), during vaginal birth (about 20-30%) or through breast

Women face many barriers to exclusive breastfeeding in low- and middle-income countries.

milk (depending on duration, ranges between 5% and 25%). “At no point in this cascade is it 100%,” said Aldrovandi.

Photo by Tareq Salahuddin

To minimize risks of mother-to-child HIV transmission, scientists examined possible prevention strategies through the Promoting Maternal and Infant Survival Everywhere (PROMISE) study. Funded by the NIH’s National Institute of Allergy and Infectious Diseases, PROMISE identified the most advantageous antiretroviral (ART) drug regimen for reducing viral transmission during pregnancy and breastfeeding. “PROMISE underscored the importance of maternal viral suppression and getting optimal ART,” said Aldrovandi.

While ART lowers the amount of virus in a mother’s blood and decreases the amount transferred through breast milk, drug adherence is often less than perfect.

“As we all know it is difficult to adhere to the meds.

Breastfeeding lasts for a couple of years and that’s a long time for a mother to remain suppressed, given that her HIV infection is probably number 20 on her list of things she’s dealing with, such as taking care of other children, earning money and dealing with food insecurity,” said Aldrovandi.

“What we are hoping for is longer lasting ART modalities to keep the mother suppressed and decrease baby’s chances of becoming infected.” In the meantime, Aldrovandi continues to puzzle over why some babies get HIV through breast milk and others don’t.

“I did a study measuring HIV RNA in breast milk and the mammary epithelium is amazingly effective at keeping out virus. A woman can have a million copies in her blood but very little to none of it gets across,” said Aldrovandi. Yet, she had seen in the years before ART that babies infected in utero did a lot worse than babies infected via breast milk. Aldrovandi and many of her peers are trying to better understand the relationship between maternal microbes and infant microbes, and how that ultimately affects infant health.

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Water insecurity can disrupt exclusive breastfeeding

L

ack of access to clean water can be a barrier to consistent breastfeeding for women who are among the 1.42 billion people that UNICEF estimates live in areas of high or extreme water vulnerability. In a study of individuals knowledgeable about household water management in 16 low- and middle-income countries (LMICs), about 90% reported that water insecurity negatively impacted how infants were fed.

fruits and vegetables and limits cooking in terms of the longer boiling times needed to make foods palatable to infants. Unable to eat preferred foods, there is potential that infants may be missing necessary nutrients during this important period of their development.

UN Photo/JC McIlwaine

Senior study author Dr. Sera Lewise Young, a nutritional anthropologist at Northwestern University, got the idea for this body of work At some sites water inseduring her previous curity was described as study of food insecurity decreasing the frequency in Kenya. Young gave of breastfeeding episodes moms cameras and or delaying them, often asked them to take because women had to pictures of what is leave their infants to collect important when feeding water, said Arizona State their kids. “And I got University’s Dr. Roseanne back photos of what Schuster, lead author on you might expect: the resulting publication. failed crops and sick chickens and drunken “People felt that problems husbands drinking up with water can decrease the food money, but breast milk production, then there were all these either due to the mother pictures of water,” said not drinking enough water Mothers responsible for the household water supply often find it difficult to exclusively Young. Some showed or from the stress caused breastfeed, a study showed. how they had to leave by water insecurity,” their babies with neighbors while they went to queue Schuster said. In many countries, women are typically for water, which prevented exclusive breastfeeding. household water managers, which can be a difficult One memorable image showed a jug of murky water task to combine with childcare. “There are different taken from a river into which sewage from a prison ways that water problems affect women, some of was dumped. The woman who took the shot explained: this depends on local infrastructure and cultural “This is a picture of the water I use for my child. I can expectations,” Schuster noted. “One of the most either buy food and use this water or I can buy water interesting findings was how water was revealed to and have no money for food.” be integral to motherhood. Responses such as ‘A real mother should always have water at home’ suggest how Having seen through other mothers’ eyes, Young knew the burden of problems with water fall on women, and she needed to quantify water insecurity. She worked that they too thought of it as their responsibility, even with a consortium of global collaborators to develop when others could help.” the first validated, cross-culturally equivalent tool to assess water insecurity at the household level based on In the absence of sufficient, clean water, there was also data from 28 LMICs. The resulting tool, the Household concern that mothers could not properly wash their Water Insecurity Experiences Scale (HWISE), has been breasts before feeding. Others felt that breastfeeding adopted by the World Bank, UNICEF and others, Young women who drank polluted water could pass contamreported. “Organizations are recognizing that the inants on to their babies. Another important finding measurement of experiences of water insecurity is as was that water insecurity meant moms fed their babies important as measuring food insecurity.” in suboptimal ways: “At six months of age, the WHO recommends introducing complementary foods because The studies mentioned above were funded in part by a baby’s nutritional needs are changing. In particular, the NIH’s National Institute of Environmental Health infants need nutrient-dense foods at this age since Sciences, the National Institute of Mental Health and they eat such small quantities,” explained Schuster.

Fogarty.

Water insecurity hinders the ability to grow nutritious

9 112 Delaware Journal of Public Health - September 2021

OPINION

By Dr. Roger I. Glass, Director, Fogarty International Center

Observing four decades of progress on HIV/AIDS This summer marks 40 years since the CDC officially reported the first cases of the disease that came to be known as HIV/AIDS. Originally an almost certain death sentence, HIV is now largely a manageable chronic illness, thanks to global research efforts including those conducted and supported

by NIH. By the mid-1980s, HIV had begun to take hold in sub-Saharan Africa and other low- and middleincome countries (LMICs) with few resources to combat it. This growing need was a topic of discussion at the 3rd International AIDS Conference, held in Washington in 1987. Scientists recognized that research into this mysterious new disease was badly needed, not only in the developed world, but also in countries with different experiences in transmission, testing and patient care. But there was an enormous barrier—the lack of research capacity in areas most severely hit by the epidemic.

Fogarty’s Dr. Ken Bridbord, co-convenor of the conference, quickly sketched out ideas for a new initiative. The following year the Center launched the AIDS International Training and Research Program, known as AITRP, which provided significant research training to more than 2,000 individuals from at least 100 LMICs. This approach was groundbreaking and helped to build the level of expertise necessary for sustained research efforts to study the HIV/AIDS epidemic on the ground in the locations where suffering was greatest. Under the program, trainees from developing countries were selected to come to U.S. grantee institutions to learn from experts and work in well-equipped laboratories. Training courses were short- or long-term and covered many different levels and topics, including master’s and doctoral degrees, laboratory skills, proposal and paper writing, epidemiology, biostatistics, ethics and HIV/AIDS related biology. AITRP offered an unusual degree of flexibility, allowing the grantees to adapt to changing conditions.

AITRP trainees, newly empowered with knowledge, experience, mentors and an established network of collaborators, returned home with increased confidence and the ability to help their countries craft and implement locally relevant strategies to tackle HIV/AIDS. This enabled

10

them to work as equal scientific partners with their highincome country peers. The program also benefited U.S. institutions, as visiting trainees brought an added dimension to classroom discussions with their firsthand knowledge of conditions and needs.

At the start, AITRP awardees were immediate beneficiaries of NIH's considerable investments in AIDS research. Fogarty's research-capacity efforts laid the groundwork for other NIH investments and AITRP alumni became the major foreign collaborators on numerous NIH-supported research projects.

With proof of concept, Fogarty transformed its entire extramural portfolio to focus on building core foundational capacity through research training programs in bioethics, genetics, informatics, stigma, and health and economic development. To meet changing needs, Fogarty consolidated AITRP with an implementation research training effort to form the Fogarty HIV Research Training Program, which continues today.

Fogarty trainees contributed to scientific advances by helping to provide evidence that male circumcision and screening of the blood supply reduced HIV transmission; data that demonstrated the effectiveness of treatment as prevention; and confirmation that people living with HIV in low-resource settings could follow complex ART regimens.

Along the way, Fogarty has relied on NIH partners for support and expertise, including the Office of AIDS Research; Eunice Kennedy Shriver National Institute of Child Health and Human Development; National Cancer Institute; National Heart, Lung and Blood Institute; National Institute on Alcohol Abuse and Alcoholism; National Institute of Allergy and Infectious Diseases; National Institute of Dental and Craniofacial Research; National Institute on Drug Abuse; National Institute of Mental Health; National Institute of Nursing Research; and the NIH Offices of Dietary Supplements and Research on Women's Health.

Today, the research priorities have shifted toward treating HIV as a chronic disease, dealing with co-infections and studying the long-term effects of antiretroviral treatment.

Although much has been accomplished, we remain firmly committed to this battle. It’s time to end the HIV epidemic, both at home and abroad.

RESOURCES http://bit.ly/40-years-hiv-aids 113

PEOPLE Power confirmed as USAID administrator Ambassador Samantha Power was sworn in as USAID administrator in early May. Power previously served as U.S. Ambassador to the United Nations and as Senior Director for Human Rights and Multilateral Affairs on President Obama’s National Security Council. President Biden has elevated the USAID role to include a seat on the NSC.

Smith to helm Biden’s COVID-19 vaccine diplomacy Gayle Smith has been tapped to lead the U.S. vaccine diplomacy efforts to ensure COVID-19 vaccines are distributed equitably around the globe. Smith—who served as USAID administrator in the Obama administration—had been leading the ONE Campaign to eradicate poverty and preventable disease.

NINDS Director Koroshetz honored by UChicago The University of Chicago Pritzker School of Medicine has recognized Dr. Walter Koroshetz, director of NIH’s National Institute of Neurological Disorders and Stroke, with its distinguished alumni award. Koroshetz joined NINDS in 2007 and became director in 2015. Previously, he pioneered acute endovascular clot removal for stroke, which is now standard treatment.

Cubillos to lead global mental health research at NIH The NIH’s National Institute of Mental Health has announced Dr. Leonardo Cubillos will lead its Center for Global Mental Health Research. A psychiatrist, Cubillos earned his M.D. at Universidad Del Rosario in Colombia. Previously, he was senior health specialist at the World Bank and has also held several positions in Colombia’s health ministry.

South African bioengineer Douglas dies Fogarty collaborator Dr. Tania Douglas has died of cancer.

The University of Cape Town professor was editor of the first textbook on biomedical engineering in Africa, written by African authors and produced through a Fogarty grant. In 2019, Douglas received the South African Women in Science Award.

Fogarty grantee King receives Gairdner Award University of Washington professor Dr. Mary-Claire King has been honored with the 2021 Canada Gairdner International Award for transforming cancer genetics and oncology with her discovery of inherited susceptibility to breast cancer due to mutation of the BRCA1 gene. King has been a Fogarty grantee and has served on the Center’s advisory board.

Global HEALTH Briefs NCI issues plan for global health research

The NIH’s National Cancer Institute has released the five-year plan for activities of its Center for Global Health. Areas of scientific focus include new technologies, implementation science, cancer health disparities, clinical trials and cancer etiology.

Each area requires CGH to leverage expertise and resources from across NCI. Full plan: http://bit.ly/NCIglobalplan

WHO develops research guidance

The WHO has announced new guidance for research on genetically modified mosquitoes, addressing issues relating to ethics, safety, affordability and effectiveness. The recommendations were developed with TDR, the Special Programme for Research and Training in Tropical Diseases, and GeneConvene, an initiative of the Foundation for the National Institutes of Health.

News release: http://bit.ly/WHOmosquitoes

Scientists create virus database

Researchers who study pathogens that travel from animals to humans have created a database of nearly 1,000 viruses in preparation for the next pandemic. SpillOver is an open-source tool designed to rank viruses based on their risk of spreading to people.

Website: https://spillover.global/

GACD launches case study collection

The Global Alliance for Chronic Diseases has posted online a group of case studies relevant to different stages of implementation research of noncommunicable disease prevention and control policies, programs and strategies. The project examples include situational analyses, implementation research activities, scale-up guidance and economic evaluation.

Website: http://bit.ly/GACDcasestudies

2020 G-FINDER report on R&D released

The latest data on global investments in neglected disease research and development have been released in the annual G-FINDER report. The 2020 study’s trend analysis includes the impact of COVID-19-related changes in survey participation.

Full report: www.policycuresresearch.org/analysis/

11 114 Delaware Journal of Public Health - September 2021

MAY/JUNE 2021

Funding Opportunity Announcement

Deadline

Details

International Bioethics Training R25 Clinical Trial Not Allowed D43 Clinical Trial Optional

Jun 4, 2021

http://bit.ly/BioethicsTraining

Hubs of Interdisciplinary Research and Training in Global Environmental and Occupational Health (GEOHealth) U01 Research Project Cooperative Agreements U2R International Research Training Cooperative Agreements

Jul 8, 2021

http://bit.ly/geohealthhubs

Aug 2, 2021

http://bit.ly/launch-future-leaders

Aug 3, 2021

http://bit.ly/IDtraining

Launching Future Leaders in Global Health Research Training D43 Clinical Trial Optional Global Infectious Disease (GID) Research Training D43 Clinical Trials Optional Chronic, Noncommunicable Diseases and Disorders Research Training D43 Clinical Trial Optional Fogarty HIV Research Training for LMIC Institutions D43 Clinical Trial Optional D71 Clinical Trial Not Allowed G11 Clinical Trial Not Allowed

Aug 13, 2021

http://bit.ly/NCDtrain

Aug 20, 2021

http://bit.ly/NIHGlobalHIV

Ecology and Evolution of Infectious Diseases (EEID)

Nov 17, 2021

http://bit.ly/EEIDNIH

For more information, visit www.fic.nih.gov/funding

Global Health Matters May/June 2021 Volume 20, No. 3 ISSN: 1938-5935 Fogarty International Center National Institutes of Health Department of Health and Human Services Managing editor: Ann Puderbaugh Ann.Puderbaugh@nih.gov Web manager: Anna Pruett Ellis Anna.Ellis@nih.gov Writer/editor: Susan Scutti Susan.Scutti@nih.gov Designer: Carla Conway

All text produced in Global Health Matters is in the public domain and may be reprinted. Please credit Fogarty International Center. Images must be cleared for use with the individual source, as indicated.

SUBSCRIBE: www.fic.nih.gov/subscribe

Research!America recognizes Mary Fogarty McAndrew In its first virtual advocacy awards ceremony, Research!America recognized the contributions of many supporters, including advocate Mary Fogarty McAndrew, who received the 2020 Gordon and Llura Gund Leadership Award for her contributions in advancing global health science and improving the lives of those with intellectual and developmental disabilities (IDD).

Fogarty McAndrew is the daughter of Congressman John E. Fogarty, the namesake of both the Fogarty International Center at NIH and a foundation devoted to providing services for those with IDD, headquartered in Providence, Rhode Island. In a panel discussion during the program, Fogarty McAndrew recalled her father’s wish that there be a center at NIH that was laser-focused on global health. After his untimely death in 1967, she said his colleagues did just that.

“COVID-19 has taught us that making strategic investments in research and training and pandemic preparedness can save lives and lessen the impact of future disease outbreaks,” Fogarty McAndrew observed. “There are numerous former Fogarty trainees in laboratories and health ministries across Africa, Asia and Latin America. They are mobilizing teams to track the spread of coronavirus and its mutations, and are studying treatments and vaccines.”

Congressman Fogarty would approve of the contributions of both entities that bear his name, she added. “My father would be very happy with the way these organizations are making a difference at home and around the world.”

R ESOURCES http://bit.ly/AdvocacyAwards2021 115

Now is the Time for Delaware Families to Catch Up on Missed Immunizations Kate Smith, M.D., M.P.H. Program Manager, Immunization Coalition of Delaware

On August 23, 2021, the United States Food and Drug Administration (FDA) granted full approval to the first COVID-19 vaccine, Comirnaty (the vaccine developed by Pfizer-BioNTech), and President Biden urged those who were waiting for full approval of a COVID-19 vaccine to get one as soon as possible.

This national focus on increasing COVID-19 vaccination rates provides an important reminder of the role of immunizations in protecting Delawareans and their families from a range of other preventable illnesses. Unfortunately, the COVID-19 pandemic-related stay-at-home orders and safety precautions led many Delaware families to delay routine health care services, including well-child visits and vaccinations. This pause has left children, adolescents, and adults (including pregnant women) vulnerable and at risk of contracting a broad range of other dangerous illnesses.

Recent data from the U.S. Centers for Disease Control and Prevention (CDC) highlight that across the country, rates of administered doses of routine childhood and adolescent vaccines were substantially lower from March to May 2020 in comparison to the years prior, and the Delaware Division of Public Health recognizes that many children are behind on their vaccinations. Under-vaccination reopens the door to many diseases that were thought to be under control or eradicated, including measles, mumps, meningitis, or whooping cough.

Back-to-school season is an important time for families to get caught up on all appropriate vaccinations, especially since Delaware public schools require all children to receive vaccines for certain preventable diseases as a condition of enrollment. This is a seemingly small step that will have an enormous impact. Before the measles vaccine was available in 1963, almost every child became infected before age 15 and over 500 people died each year. Now, most physicians go their entire career without treating a single case. As a result of broad and effective childhood immunizations, children rarely die from what were once common illnesses.

Preventing disease outbreaks, especially as our health care resources are being stretched thin by COVID-19 and the Delta variant, is paramount. Hundreds of thousands of people are hospitalized with the flu each year, and tens of thousands die. The flu vaccine is approved for everyone over the age of six months, and is the best way to help protect against the flu, keep people out of hospitals, and prevent outbreaks.

On August 20, Governor Carney signed a proclamation stating that August was Immunization Awareness Month in Delaware. Parents and guardians take steps every day to keep their children healthy and safe: using car seats, holding hands when crossing the street, making sure everyone eats a healthy diet. Along with the National Immunization Awareness Campaign, the Immunization Coalition of Delaware urges you to get your flu shot, get your COVID-19 vaccine and booster, and have a conversation with your doctor today about catching up on appropriate vaccines for every member of your family.

116 Delaware Journal of Public Health - September 2021

doi: 10.32481/djph.2021.09.023

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Prevention of and Early Intervention for Cognitive Decline Due to Alzheimer’s Disease and Related Disorders Matthew L. Cohen, Ph.D. Department of Communication Sciences & Disorders, Delaware Center for Cognitive Aging Research, Center for Health Assessment Research and Translation, University of Delaware Alexis C. Ryan, M.A. ChristianaCare Alyssa M. Lanzi, Ph.D., CCC-SLP Delaware Center for Cognitive Aging Research, Center for Health Assessment Research and Translation, University of Delaware

An expected consequence of aging is the decline of so-called “fluid” cognitive abilities, including attention, processing speed, working memory, episodic memory, and executive functions.1,2 An average 85-year-old is not expected to perform as quickly or as accurately on tasks requiring these cognitive abilities as an average 25-year-old. As a result, everyday cognitive errors and inefficiencies such as slow word retrieval or walking into a room and forgetting one’s intention, which happen to everyone,3 become more frequent and significant with age.4,5 The biological and cognitive mechanisms of age-related cognitive decline are multifactorial and not entirely understood, but a growing body of evidence describes risk factors that can be mitigated and protective factors that can be enhanced to preserve cognition or slow the rate of decline.6 These same protective factors for brain health may be effective in mitigating the impact that Alzheimer’s disease has on a person’s daily functioning, potentially delaying their transition to dementia.7 Alzheimer’s disease (AD) is not a normal consequence of aging, although it does affect 10% of adults over 65, including 32% of those over 85, making it the most common cause of mild cognitive impairment (MCI) and dementia in older adults.8 MCI is a state at which a person has greater cognitive decline than expected for their age, but their cognitive weaknesses have not overpowered their ability to compensate for them.9 A person with dementia, on the other hand, is not able to successfully compensate for their cognitive weaknesses and therefore has functional challenges in everyday life and during completion of activities of daily living. Although symptom-alleviating drugs have been approved by the FDA, there are unfortunately no curative or disease-modifying pharmacological treatments for MCI or dementia from AD at this time.

Given the lack of definitive pharmacological treatments, research priorities are focused on preventing future cases through risk reduction, improving quality of life, improving the dementia workforce and quality of care, and optimizing the quality and inclusivity of health and social care systems.10 The importance of risk reduction, in particular, has been highlighted by recent evidence reporting that modifiable risk factors attribute to approximately 40% of dementia cases worldwide.7 One particularly new and noteworthy finding is the impact of untreated hearing loss, which was found to confer more individual risk for dementia than any other risk factor.7 Identifying atypically declining older adults early in the progression of the disease, creates an opportunity for the implementation of secondary prevention interventions that focus on delaying the transition to dementia (i.e., loss of independence).

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EVIDENCE FOR MULTICOMPONENT INTERVENTIONS Behavioral preventive interventions focus on promoting changes in lifestyle that improve overall health.11 In general, evidence for behavioral interventions in isolation (e.g., physical activity, psychosocial support, or cognitive training) is mixed – some studies report modest improvements in cognition while others find no significant benefit.7 The mixed findings are most likely due to the heterogeneity of intervention details, outcome measures, and case definitions. But because of the mixed evidence for each component in isolation, interest has turned to the efficacy of multicomponent interventions for people at risk for atypical cognitive decline with the intent to delay or prevent conversion to dementia.

The Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) has provided the strongest evidence to date for the beneficial effect of a multicomponent behavioral intervention for adults at risk for AD. This multicomponent intervention consisted of nutritional guidance, exercise, cognitive rehabilitation, and intensive monitoring and management of metabolic and vascular risk factors (e.g., diabetes, hypertension, hyperlipidemia).12 The researchers conducted a double-blind randomized controlled trial of 1260 adults (aged 60-77) at elevated risk for dementia to examine the efficacy of their intervention. The main finding was that participants in the intervention condition improved more on a composite score of performance-based cognitive measures than those in a control group who received only health education, counseling, and monitoring.13 The encouraging findings from this clinical trial have placed the FINGER research team at the forefront of guiding international efforts for AD risk reduction.

In fact, in 2020, the Worldwide FINGERS Network included investigators from 25 countries conducting trials to adapt, test, and optimize the FINGER framework for various cultural and economic settings.14 Furthermore, the strong findings from this trial have led to the initiation of numerous other clinical trials investigating multicomponent interventions, many of which are still enrolling participants.6 Two other large-scale clinical trials testing multicomponent interventions have been completed. The Dutch PreDIVA study cluster-randomized 3526 older adults (aged 70-79) to usual care or a 6-year nurse-led cardiovascular intervention consisting of lifestyle advice.15 This study found no significant benefit of the intervention, but investigators speculated that the lack of dementia prevention may have reflected good baseline cardiovascular health and high standards of usual care. doi: 10.32481/djph.2021.09.014

In another trial, the Multidomain Alzheimer Preventive Trial (MAPT), 1680 adults (age 70+) with memory complaints were randomly assigned to one of four groups.16 One group received a multidomain lifestyle intervention consisting of 43 group sessions of cognitive training, physical activity, and nutrition, and three preventative consultations. A second group received only nutritional supplementation with omega-3 fatty acids. A third group received both, and a fourth group received only a placebo capsule. The results were nuanced. Although there were not significant differences between any of the three intervention groups compared to placebo, post-hoc exploratory analyses revealed that when both groups receiving the multidomain intervention were pooled, they showed less cognitive decline than the other groups, particularly in participants with higher cardiovascular risk or amyloid positivity.17,18 The encouraging findings of the FINGER and MAPT studies compared with the null findings from the preDIVA study suggest the importance of active interventions. The passive health advice and monitoring provided to control group participants did not lead to benefits. Unfortunately, several aspects of the FINGER, MAPT, and similar multicomponent intervention studies make them difficult to implement in real-world clinical practice settings. For example, the length of the FINGER study intervention was two years, during which participants were expected to attend more than 430 in-person sessions (155 inperson cognitive training sessions, 264 in-person physical training sessions, 10 in-person nutritional counseling sessions, and 10 in-person visits related to management of metabolic and vascular risk factor). This would be financially and logistically impossible for most community-dwelling older adults, especially those in underserved communities who are in fact at the highest risk for dementia.8,19–21 Indeed, even given all of the financial and logistical support received by FINGER study participants, treatment adherence was nonetheless very poor, especially for the cognitive training sessions: only 12% of participants completed all sessions, 20% of participants completed half, and 37% of participants did not attend a single training session.22 Similarly, 40% of participants could not or chose not to adhere to the standardized physical training component.23 Another major barrier to implementation of a multicomponent intervention in clinical settings is that these programs may not be well-suited to individuals’ needs or capabilities. The intervention components are often structured, and lack personcenteredness, as participants are expected to adhere to each component. For example, in the FINGER study, all participants were expected to complete the 264 sessions of physical training, regardless of their baseline fitness levels, personal goals, and health risk factors. Acknowledging these limitations, the ongoing “Maintain Your Brain” study in Australia assigns participants only to those intervention modules that address that person’s risk factors, making it somewhat more person-centered.24 This intervention is also unique because it is delivered entirely through a custom online platform (self-paced video library), making it less burdensome, more accessible to rural communities, and more scalable. Whether engagement/adherence will be helped by improved accessibility remains to be seen. In addition, passive rather than active delivery of the intervention may be less engaging for some participants.

Finally, most multicomponent intervention studies are limited by their focus on decontextualized, performance-based cognitive test scores as outcome measures and the use of restorative rather than compensatory cognitive training. Restorative cognitive interventions (or “cognitive training” interventions) are those that attempt to repair weak cognitive domains (e.g., working memory), often through performance of rote tasks. A 2019 Cochrane Review of restorative cognitive interventions for mild to moderate dementia analyzed 32 studies that were conducted between 1988 and 2018.25 The findings depended on the control condition. When cognitive training was compared with a nointervention control group or condition, the authors found moderate-quality evidence for a small to moderate effect of cognitive training on composite measures of global cognition, and high-quality evidence of a moderate effect on semantic fluency tasks specifically that persisted for 3-12 months after treatment.

However, due to very poor evidence quality, it was not possible to determine whether the cognitive training interventions were associated with any meaningful gains on clinical disease severity.

When cognitive training was compared with alternative treatments, the authors found little evidence for an effect of treatment on global cognitive functioning, but this was only based on low quality evidence. However, the authors reported being moderately confident that restorative cognitive interventions were not associated with improvement beyond the alternative treatments on outcomes related to mood, behavioral or psychology symptoms, or daily functioning.

There is more encouraging evidence for this form of cognitive training when it is initiated before significant declines have occurred. The Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) trial, which randomly assigned 2832 older adults (aged 65-94) to one of three restorative training interventions: memory, reasoning, or processing speed. The intervention consisted of ten group sessions plus four booster sessions. The main findings were that each intervention improved participants’ completion of the trained cognitive task (for up to ten years in the case of speed and reasoning training), but with unclear effect on everyday living skills. At least 60% of participants, across every intervention group, reported less difficulty performing everyday living tasks compared to nontrained participants. However, those group differences were not observed on performance-based measures of daily function.26 Compensatory cognitive interventions, on the other hand, do not attempt to repair cognitive substrates, but rather teach the use of strategies and aids (e.g., calendars and note-taking systems) to directly improve adults’ completion of everyday living tasks.

Compensatory interventions have the advantage of being more person-centered than traditional cognitive training by allowing the individual to focus on specific everyday challenges that are meaningful to them in a way that leverages their cognitive strengths and existing practices.27,28 And because functional independence is the key difference between MCI and dementia, preserving one’s independent living skills by definition delays the transition to dementia.29 The multicomponent Mayo Clinic Healthy Action to Benefit Independence and Thinking (HABIT) program is relatively unique because it includes both compensatory and restorative components and focuses on quality-of-life as the primary 119

outcome rather than cognitive test scores. A comparative effectiveness trial of HABIT components recently evaluated the relative efficacies of different combinations of components on quality-of-life at one year.30 Results indicated that wellness education seemed to be the most effective of the components, and restorative cognitive therapy was the least. It is unfortunate that the preDIVA intervention (nurse-led lifestyle counseling) did not study quality-of-life outcomes other than depression symptoms (no effect of treatment), because it may have been more impactful on a person’s overall health and well-being than fully appreciated. On the other hand, perhaps the wellness education component of the HABIT was uniquely effective for QoL because it was led by psychologists, focused on self-efficacy (a priority for people with AD31), and focused on wellness beyond strictly cardiovascular health. Interestingly, when asked directly about which component of the intervention was most important, persons with MCI (pwMCI) and their care partners ranked the compensatory cognitive intervention first – above all other components – even though the wellness module was the most predictive of QOL at 1 year.31

EARLY IDENTIFICATION AND INTERVENTION IN THE STATE OF DELAWARE Although evidence for multicomponent interventions is still accumulating, there is a critical need and demand for services that can be implemented by clinicians working in healthcare settings with older adults at risk for and with early signs of dementia. The remaining sections of this article will provide a brief overview of some of the specific resources available to clinicians in the State of Delaware that focus on prevention and improving quality of life in older adults at risk for dementia. Readers are also directed to other articles in this issue.

Memory Ambassadors – Brain Wellness Education and Memory Screening

In 2017, a group called Memory Ambassadors was formed by clinicians within the Swank Center for Memory Care and Geriatric Consultation at ChristianaCare. This group travels to community sites (e.g., senior centers, senior living communities) to provide brain wellness education and free screenings of nutrition, balance, hearing, and memory to older adults throughout the State of Delaware. Faculty and clinicians who deliver this intervention are a collaborative, interdisciplinary team from ChristianaCare and the University of Delaware (UD), contributing skills from the fields of psychiatry, neuropsychology, speech-language pathology, social work, nutrition, and nursing.

The Memory Ambassador program begins with a series of interactive presentations from members of the team addressing brain wellness education, nutrition, and fall risk reduction. The cognitive aging presentation is organized around an acronym, D.A.N.C.E.R.S: Disease Management, Physical Activity, Nutrition, Cognitive Stimulation, Social Engagement, Relaxation, and Successful Sleep. As discussed elsewhere,32 Dr. Ellison created this acronym to help adults remember the evidence-based strategies for enhancing cognitive aging.

Following the presentations, the Memory Ambassadors’ program offers free confidential memory screenings to interested attendees.

The memory screenings, based on a self-report interview and a performance test, are conducted by a member of our team – and their supervised graduate students – and last approximately 10 minutes. At the end of the screening, the team member provides 120 Delaware Journal of Public Health - September 2021

feedback about the attendee’s performance and asks if they would like that information to be shared with their primary care clinician. Since 2017, close to 600 older adults have been screened by the program. In 2020, in the context of the COVID-19 pandemic, Memory Ambassadors transitioned to an online platform with good success. Interested older adults can sign up to attend an event free of charge, however, participation in online events requires stable internet and an electronic device. For more information on the Memory Ambassadors program, the reader is referred to the website: https://christianacare.org/es/swank-memory-ambassadors-program/.

Although the program began primarily as a service to the community, more systematic program evaluation is under way.

This is important because the value of brain health education may be obscured by the use of education as a control condition in multicomponent intervention studies. For example, the control group in the FINGER trial met with the study nurse in person three times over 24 months, during which time the nurse took blood pressure, weight, hip and waist circumference, and blood samples. Participants in the control condition were then provided written information about the significance of these health metrics alongside advice for seeking medical care if needed.12 Interestingly, the findings from the FINGER trial indicated that participants in the control condition also improved their composite test score over 2 years, despite expected declines in cognition due to age.13 Of note, some have hypothesized that the small differences between the conditions may be due to the high quality of the wellness education for the control group - better than what is received by most older adults in the United States, especially given that many older adults do not have a primary care doctor or attend wellness exams.33,34 The value of brain health education is also indicated by the finding that across multicomponent interventions, the highest adherence rates have been observed for the components related to cardiovascular monitoring and nutritional counseling,23 suggesting these components are perceived to be useful and not burdensome. And the Mayo Clinic HABIT trial identified wellness education as the strongest predictor of Quality of Life at 1 year.30

Proposal for a Delaware Center for Cognitive Aging Research

For the past few years, faculty from the University of Delaware and ChristianaCare have conducted collaborative research that span the disciplines of medicine, neuropsychology, physiology, and engineering; with particular emphasis in cognitive and psychosocial assessment,35–37 compensatory cognitive rehabilitation,27,28,32 neurovascular anatomy and physiology, magnetic resonance elastography,38–40 and psychiatric interventions for mood and behavior.41–43 As discussed in Martens et al. (this issue) there is an effort to formally establish a Delaware Center for Cognitive Aging Research (DECCAR). The mission of this proposed center is to support and advance research, education, and clinical training in Alzheimer’s disease and related disorders, to improve the timeliness and accuracy of the diagnosis, therapeutic interventions, person-centered clinical care, and quality of life for patients across the continuum from typical aging to dementia and families. For more information on this proposal, the reader is referred to Martens et al. (this issue) and https://sites. udel.edu/memory-research/. This website also has educational resources for clinicians (e.g., a patient handout on D.A.N.C.E.R.S. protective factors) and ways to refer patients to clinical trials and other research studies in Delaware.

CONCLUSION Alzheimer’s disease is and will continue to be a very significant public health problem, currently affecting approximately 19,000 Delawareans.8 Although there are no curative or diseasemodifying pharmacological treatments for AD, encouraging findings from the FINGER and MAPT trials have inspired significant efforts in Delaware aimed at behavioral preventive interventions and early identification of atypical cognitive decline.

For up-to-date information about these efforts, the interested reader can visit the websites of the Memory Ambassador program (https://christianacare.org/es/swank-memory-ambassadors-program) and the online home of UD memory research: https://sites.udel.edu/memory-research.

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FIGHT FLU Get your family vaccinated against flu this season. It’s the best way to protect you and your loved ones from getting the flu.

www.cdc.gov/fightflu 123

Lifelong Learning: A Key Weapon in Delaware’s Fight Against Cognitive Decline Ruth Flexman, Ph.D. Instructor, Osher Lifelong Learning Institute; Executive Director, Lutheran Community Services, Retired; Manager, Osher Lifelong Learning Institute, Retired; Program Coordinator, Osher Lifelong Learning Institute, Retired

The fear of cognitive decline increases with advancing years of age. No one wants to experience even mild memory loss, let alone the more severe symptoms of major neurocognitive disorder. Also known as dementia, major neurocognitive disorder’s effects include impaired memory and learning, problem-solving and reasoning, language, social interaction and behavior. Early symptoms include problems recalling recent events, difficulty finding the right words, altered mood and initiative, difficulty completing normal tasks, confusion, difficulty following story lines, a failing sense of direction, being repetitive and struggling to adapt to change. Ultimately, these changes lead to loss of independence.

No current medical treatment cures dementia. What is now known is that risk may be reduced and onset delayed. Lifestyle choices and brain-healthy behaviors make a difference. The brain can create new brain cells and connections throughout life. This highly significant discovery is relatively new. Now what is needed is for individuals, families and programs in the community to encourage experiences which promote cognitive fitness.

Demographic trends in Delaware project that the prevalence of dementia will increase since the number of older adults is growing and age is the most important risk factor for dementia.

Just under 400,000 residents of Delaware, almost 40 per cent of the population, are 50 and older. Delaware’s general population’s median age of 41.1 is almost three years higher than the overall U.S. median age. Delaware ranked fifth among all U.S. states in age, with 81,000 Delawareans age 65 and over. That amounts to 18.5 per cent of the state’s population. The proportion of Delaware’s population that is 60 and older is increasing more rapidly than other components of the population. Estimates project that 28.4 percent of Delaware’s population will be 60 and older by the year 2030, an increase of 41 percent from 2012.1

WHAT IS DEMENTIA? Dementia is an acquired disorder of cognition, and cognition includes a range of faculties necessary to get along in the world. Dementia brings on a loss of cognitive functioning sufficient to interfere significantly with independence.

Activities that previously were enjoyable and meaningful cannot be continued. As dementia progresses, full-time care may become necessary. Six areas of cognition are typically considered by clinicians diagnosing dementia. Some skills may be more impaired than others: Complex attention refers to the ability to sustain focus and switch between tasks. Learning and memory include acquisition of new memories and recall of past events. Executive function refers to skills that enable planning, organizing, remembering, prioritizing and paying 124 Delaware Journal of Public Health - September 2021

attention to tasks. Language includes understanding and expressing in both spoken and written forms. Perceptual-motor function incorporates spatial awareness and spatial reasoning, for example the ability to follow driving directions. Social cognition involves the understanding of others’ non-verbal communications to enhance interactions.2

ALZHEIMER’S DISEASE Many medical conditions can result in dementia, but Alzheimer’s Disease (AD) is considered the most frequent among older adults. Not everyone with dementia has AD but AD is the most well-known and common form of dementia. AD affects over six million people in the United States. By 2050, that figure may increase to more than 14 million. Symptoms include a decline in memory, changes in thinking skills, poor judgment and reasoning skills, decreased focus and attention and changes in language and communication skills. This irreversible degeneration of the brain disrupts memory, cognition, personality, and other functions. It eventually leads to death as the brain and body fail. AD is the sixth leading cause of death in the United States. The number of new cases of Alzheimer’s increases dramatically with age. In 2011, the average annual incidence in people age 65 to 74 was 0.4%. In people age 75 to 84 the annual incidence was 3.2% and for age 85 and older, the incidence was 7.6%. Because of the increasing number of people age 65 and older, the annual number of new cases of Alzheimer’s and other dementias is projected to double by 2050.

In Delaware, projected number of Alzheimer’s cases is 19,000 in 2020 with an expected 23,000 in 2025, a 21.1% increase.3

EARLY RESEARCH TO LOWER THE RISK OF DEMENTIA Understanding how the brain works is essential for understanding what happens with dementia. Until the 1960’s, brain cells were believed to decline with age but never to increase. Then an important discovery was made which would have highly significant impact. Dr. Marion Diamond, a professor at University of California in Berkley, provided the first hard evidence demonstrating the brain’s neuroplasticity, that is, its ability to develop and grow even in adulthood. She shattered the old paradigm of understanding the brain as a static and unchangeable organ that simply degenerated with advancing age. She began studying the brains of lab rats. Rats raised alone, in small and desolate cages, had more trouble navigating a maze than did rats that were raised in “enriched” cages with toys and rat playmates. Studying their brains under a microscope, Dr. Diamond found that the cerebral cortices of the rats in “enriched” cages were about six percent thicker than the rats in the “impoverished” cages.4 doi: 10.32481/djph.2021.09.015

These findings, published in 1964, were a pivotal contribution to the long-running debate between nature and nurture, which seeks to determine the extent to which a person is shaped by their genes or by their life experiences. Dr. Diamond showed that the structural components of the cerebral cortex can be altered by either enriched or impoverished environments at any age, from prenatal to extremely old age. Inspired by Dr. Diamond’s discoveries, scientists have continued studies on the effects of enriched environments.

RESOURCES IN DELAWARE TO PROMOTE MENTAL FITNESS

Research into aging and cognitive decline has identified 12 key risk-increasing factors that can be altered by lifestyle choices and interventions. Low education and limited social contact, as suggested by Dr. Diamond’s discoveries, are important members of this list. The other risk factors are hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, excessive alcohol consumption, traumatic brain injury and air pollution.5 Lifelong learning opportunities help to fight cognitive decline through increasing mental stimulation and social interaction.

A Guide to Services for Older Delawareans and Persons with Disabilities (Delaware Health and Social Services 2016-2017) offers many options for mental stimulation. This guide is available online at www.delawareADRC.com. At that internet site, select “Senior Centers” for a listing to find twenty-four Senior Centers in New Castle County, nine in Kent County and thirteen in Sussex County. Senior Centers offer a range of engaging experiences including recreational programs, exercise classes and topical programs to stimulate the mind and body. Games are fun and offer stimulation. Some centers have swimming pools. Meals in the Senior Centers provide nourishment and opportunities for social connections.10

Mental Stimulation Current research on mental stimulation has demonstrated the ability of neural networks in the brain to change through growth and reorganization. These changes, called neuroplasticity, range from individual neuron pathways making new connections to more extensive systematic adjustments such as cortical remapping. Examples of neuroplasticity include circuit and network changes that result from learning a new ability, environmental influences, practice, and psychological stress. Plasticity is more limited in an older brain, but remains an important contributor to development, learning, memory, and recovery from brain damage.

Cognitive reserve, or brain reserve capacity, is the term used to describe the greater functional resilience and resistance to cognitive decline possessed by people with higher baseline IQ, education, or occupational attainment. The findings of a study which explored the association between lifespan cognitive reserve and dementia risk indicated that high lifespan cognitive reserve is associated with a reduction in dementia risk, even in the presence of high levels of brain pathology.6 Multiple studies have confirmed that people with lower education have a higher risk for developing dementia.

Socialization People are inherently social creatures who form organizations that extend beyond the individual. These structures evolved hand in hand with behavioral, neural, hormonal, cellular, and genetic mechanisms to support them because the consequent social behaviors helped these organisms survive, reproduce, and care for offspring sufficiently long that they too reproduced.7 Human beings are adversely affected by loneliness, which has been shown to reduce life span and quality of life. One study of Perceived Social Isolation and Cognition found that loneliness was associated with poor overall cognitive performance, faster cognitive decline, a higher sensitivity to social threats and an increase in depression.8 Another study on loneliness and social isolation confirmed their association with lower cognitive function.9 Enhancing social participation and maintaining emotionally supportive relationships can help to prevent cognitive decline and reduce the risk for dementia.

Delaware residents are fortunate in having a variety of resources available to promote cognitive stimulation and social engagement.

Choosing a program depends on interests, background, current abilities and living location. Playing tennis, for example, requires higher levels of physical dexterity. Seated Yoga offers movement but requires less physical dexterity.

Another selection at www.delawareADRC.com is “Education,” where 54 options for opportunities in different educational areas are currently listed. “Volunteerism” is another choice and many options are available. Volunteer opportunities can also be found through churches and other organizations. Still another option for social engagement in Delaware is to choose “Recreational/Social,” which currently lists 50 opportunities for different physically and socially interactive activities.

For some Delawareans, the Osher Lifelong Learning Institute at the University of Delaware (OLLI) offers an outstanding opportunity for adults age 50 and older to increase their cognitive and social engagement. Although all states now have lifelong learning programs, Delaware’s program is one of the largest and oldest of such programs, having begun in 1980. New members often indicate they learned of OLLI from a friend who had enjoyed OLLI’s programs. Course listings and other information is available at www.olli.udel.edu. Members of Lifelong Learning increase their cognitive fitness through their participation in courses and social connections through their interactions with other members.

Osher Lifelong Learning New Castle County Between 2000 and 2019, the number of OLLI members in Wilmington taking classes has ranged from 2,100 to 2,400 per semester. Courses numbered around 65 plus 40 extracurricular activities for 14-week semesters. All instructors are volunteers and many members volunteer on committees. The program stimulates the brain in a multitude of dimensions and fosters socialization among members. History is a favorite course choice. Twenty-six courses covering both history in the United States and in other countries are offered. Participation in performing arts is excellent for stimulating multiple parts of the brain. Fifty-three courses are offered in music, including a Concert Band with about 75 members and a Chorus with about 65 members. Among the other musical groups are a Chamber Choir and Madrigals group, an orchestra, and ensembles for the study and performance of guitar, jazz, and rock music. Instruction is provided for people with various skill levels.

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Foreign language study provides another excellent means of stimulating the brain. OLLI members can choose from 38 courses in eight languages. Exercise classes at OLLI include swimming, cardio, balance, Tai Chi, and various levels of Yoga including Chair Yoga. OLLI also offers special lectures, travel, and opportunities for socialization at lunch, cookie socials and other events. The mental stimulation and socialization offered in grade and high school, and then in college, now continues for lifelong learners.

OLLI’s Summer Program offers four weeks of classes in July. For Summer 2019, 47 courses were offered. The highest number of classes were offered in History, General Studies, Literature and Health and Wellness which included Pilates and Yoga.

The Music Committee decided to do a study asking participants in Wilmington OLLI Chorus how they benefited from their experience. In Spring Semester 2008, a one-page form was distributed to the 72 members including the request “list the three most important benefits you feel you receive from participating in the Chorus.” Qualitative analysis resulted in the identification of eight categories: 1. Opportunity to sing with peers 72% 2. Friendship 64% 3. Learn new music 53% 4. Professional leadership 43% 5. Singing beautiful music 38% 6. Singing makes me feel happy 34% 7. Enjoy performing for appreciative audiences 30% 8. Singing improves my health 23% Responses from participants indicated that mental stimulation and socialization were indeed an important part of their experience. Other comments supported the benefits of chorus.

Members selected Chorus from 225 course choices, often remaining involved over many years. The average length of lifelong learning program membership was 8.1 years while the average for years in the chorus was 6.8 years. The longest chorus participation was 30 years reported by an 86-year-old. Singing is beneficial for health reasons because it expands the lungs and increases the flow of oxygen to the body and the brain.11

Osher Lifelong Learning Kent and Sussex Counties The Lewes/Dover OLLI serves Kent and Sussex Counties. The Lewes program began in 1989 and in 2010 in Dover. The same catalog advertises classes for Kent and Sussex counties with classes meeting in multiple locations. In Fall Semester of 2019, 166 courses were offered in Lewes/Ocean View and 43 in Dover.

History, Humanities, Health and Psychology, Life Skills and Recreation were the most popular courses. Lectures outside of classes were popular. During the summer of 2019, 71 instructors taught 48 classes in Lewes and 24 in Dover.

LEARNING LIFELONG CAN REDUCE THE RISK OF DEVELOPING DEMENTIA In addition to experiencing the joy of continued learning and social engagement, those who engage in lifelong mentally and socially stimulating activities reduce their risk for cognitive decline.3 Participating in social events, reading, dancing, playing board games, creating art, playing an instrument, and other activities that require mental and social engagement 126 Delaware Journal of Public Health - September 2021

stimulate cognitive fitness. OLLI Lifelong Learning offers opportunities in all of these areas and other opportunities are available in the community.

OLLI continued to offer its members life-enriching experiences even during the COVID-19 pandemic. In March of 2020, when the pandemic put an end to in-person classes, OLLI instructors and participants quickly learned to use Zoom.

Remote communication allowed the offering of 215 classes and participation of 1,934 members during the Spring 2021 Semester.

Classes on Zoom have allowed statewide participation. For Summer 2021 and Fall 2021 some classes will resume at former locations but most classes will now also be offered on Zoom. Even during a Pandemic, continued social connection and cognitive stimulation remain important for well-being and brain health.12

DELAWARE’S CHALLENGE TO FIGHT DEMENTIA For the fitness of Delaware’s large aging population, participation in mind expanding opportunities and social engagement is very important. Resources are available and new opportunities continue to develop despite the obstacles imposed by the pandemic. Preserving cognitive health for Delaware’s older adults is an important goal that can be promoted through healthy lifestyle choices including cognitive stimulation and social engagement. In this way, the sad consequences of cognitive decline can be delayed or diminished.

RESOURCES Mental Fitness Websites

https://www.brainwaves.com https://www.braingle.com https://www.gamesforthebrain.com https://www.games.aarp.org

Exercises and games contribute to developing mental skills by helping build mental stamina for sustained concentration and focusing attention. The exercises include verbal, spatial and logic stimulation so that new challenges will improve memory, creativity, and use of words to build links among brain cells. These options require knowing how to operate a computer but they do not require ability to walk or use transportation. https://www.DelawareADRC.com Search “Education” “Senior Centers” “Volunteerism” “Recreational/Social Activities” https://www.olli.udel.edu Select OLLI Wilmington or OLLI Kent/Sussex for classes and other educational activities at the Osher Lifelong Learning Institute at the University of Delaware https://www.asaging.org/mindalert American Society on Aging offers free online training and educational resources to help older adults maintain and enhance cognitive and mental function. The purpose is to train professionals to implement cognitive stimulating programs translating research related to enhancing cognitive function to cognitive health promotion activities. A wide range of topics is included including brain health, songwriting, meditation, storytelling and music as brainfood.

REFERENCES 1. U.S. Census Bureau. (2019). U.S. Census Delaware. Retrieved from https://census.delaware.gov 2. American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA; American Psychiatric Association, 593-595 3. Alzheimer’s Association. (2021) Alzheimer’s disease 2021 facts and figures. Retrieved from: https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf 4. Stannak. (2020, Mar 7). Marion Diamond Groundbreaking Findings on Brain Plasticity. Women in Science. Retrieved from: https://blog.stannah-stairlifts.com 5. Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., . . . Mukadam, N. (2020, August 8). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet, 396(10248), 413–446. Retrieved from https://www.thelancet.com/article/S0140-6736(20)30367-6/fulltext https://doi.org/10.1016/S0140-6736(20)30367-6 6. Xu, H., Yang, R., Qi, X., Dintica, C., Song, R., Bennett, D. A., & Xu, W. (2019, October 1). Association of lifespan cognitive reserve indicator with dementia risk in the presence of brain pathologies 1997 to 2018. JAMA Neurology, 76(10), 1184–1191. https://doi.org/10.1001/jamaneurol.2019.2455

7. Cacioppo, J. T., Hawkley, L. C., Norman, G. J., & Berntson, G. G. (2011, August). Social isolation. Annals of the New York Academy of Sciences, 1231(1), 17–22. https://doi.org/10.1111/j.1749-6632.2011.06028.x 8. Cacioppo, J. T., & Hawkley, L. C. (2009, October). Perceived social isolation and cognition. Trends in Cognitive Sciences, 13(10), 447–454. https://doi.org/10.1016/j.tics.2009.06.005 9. Lara, E., Caballero, F. F., Rico-Uribe, L. A., Olaya, B., Haro, J. M., Ayuso-Mateos, J. L., & Miret, M. (2019, November). Are loneliness and social isolation associated with cognitive decline?

International Journal of Geriatric Psychiatry, 34(11), 1613–1622. https://doi.org/10.1002/gps.5174 10. Delaware Health and Social Services. (2016). A guide to services for older Delawareans and persons with disabilities.

Retrieved from https://delawareadrc.com 11. Flexman, R. (2011). Why we sing. The LLL Review, 6(fall 2011).

12. Osher Lifelong Learning Institute. (2021). UD’s OLLI program - a year to adapt, grow and survive. Retrieved from www.olli.udel.edu

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Down Syndrome and Dementia: A Patient and Care-Giver Centered Approach Mary M. Stephens, M.D., M.P.H., F.A.A.F.P., F.A.A.D.M. Medical Director, Jefferson Continuing Care Program (JCCP); Clinical Lead, Christiana Care Down Syndrome Program; Associate Professor, Family and Community Medicine, Thomas Jefferson University Eileen Herge Occupational Therapist; Associate Professor CHP, Thomas Jefferson University Charmaine Wright, M.D., M.S.H.P. Medical Director, Christiana Care Center for Special Health Care Needs; Medical Director, Mary Campbell Center; Adjunct Assistant Professor of Medicine

LG is a 49-year old woman with Down syndrome (DS). She and 3 other women with intellectual disability live in a house in Delaware. These four women are assisted in their activities of daily living by a small team of round-the-clock caregivers.

LG used to need a little help with zippers but chose her outfit and dressed herself. She needed some assistance with food preparation but fed herself. Until early 2020, LG had spent the previous 10 years attending a daily morning gathering with fellow residents after eating a hearty breakfast. She loved pancakes and bacon. She was enthusiastic and friendly, often first to sit and the first to share the expected weather for the day. She played tennis two times a week and had done so for the past 20 years. In late 2019, LG started closing her eyes during morning program and wasn’t the first to share the weather. She did not want to participate in tennis and was easily frustrated by putting on the shoes she had worn for several years, once throwing them across the room.

Her balance was off and she had a fall at the courts. After checking her sleep apnea treatment, her thyroid function, her hearing and vision, LG was treated for depression.

However, she started eating fewer pancakes at breakfast.

She would hold food in her cheek for far too long and lost a small amount of weight as a result. She spoke much more quietly and often would shake her head yes or no when asked a question without a verbal reply. Her eyes were closed for much of the morning though she was awake.

Both LG’s family and health care team asked whether the changes we saw could all be from depression. What else could be going on and what would be LG’s expected course? What workup and management should follow? We considered Alzheimer’s dementia. Down syndrome (DS), caused by an extra copy of the twenty-first chromosome, is a significant risk factor for early onset Alzheimer’s dementia (AD). The mechanism is believed to be linked to overproduction of amyloid precursor protein (APP) linked to the extra copy of the twenty-first chromosome, with subsequent development of amyloid plaques and neurofibrillary tangles in the brain.1 Given the increase in lifespan for individuals with DS from the mid 20’s in the 1980s to 60 today, the number of older Americans with DS is increasing and members of the health care team need to better understand the unique characteristics of these individuals in order to optimize best practices for care.2,3 We will review common characteristics and co-morbidities of individuals with DS, review the epidemiology of AD and 128 Delaware Journal of Public Health - September 2021

clinical presentation of AD in this cohort, discuss practical considerations for diagnosis and treatment as well as strategies to maximize support for caregivers. Consistent with the National Plan to Address Alzheimer’s Disease, we will focus on the importance of the early detection of AD and what it means to patients, caregivers, and the healthcare system.

DOWN SYNDROME DS is the most common genetic cause of intellectual disability (ranging from mild to severe) and is associated with a number of common medical conditions including hypothyroidism, sleep apnea, vision and hearing abnormalities, seizure disorders, dental disease, autism, and mental health issues.3,4 The first evidence-based guidelines for adults with DS were only recently published and provide guidance on best practices for care of this vulnerable population, and also highlight the need for further research given the limited quality of the available evidence.2 The strongest recommendation from the guidelines is a strong recommendation to screen adults with DS for AD beginning at age 40 with a dual purpose of identifying AD along with potentially treatable medical conditions that may appear to be AD or contribute to functional decline.2 It is estimated that approximately 30% of adults with DS in their 50s and 50% of those in their 60s have AD. The average age for AD diagnosis in DS is 55. Clinical AD appears to be rare in individuals with DS prior to the age of 40, and experts urge caution in making a diagnosis prior to this age.2,3

WHAT DOES AD LOOK LIKE IN PATIENTS WITH DS? While some experts suggest that the later stages of AD in people with DS are similar to the general population of people with AD, the early stages of AD in DS are very variable.5 In a recent systematic review, “frontal-like symptoms” such as changes in fearfulness, lack of energy, withdrawal, disinhibition, and sadness were cited as the most common presentation of AD in people with DS. Changes in memory were reported less consistently. This may be in part due to baseline impairments in working memory in individuals with DS related to function of the hippocampus versus universal decline in working memory skills as a part of “normal” aging in DS. Gait dyspraxia (difficulty initiating walking or making turns, shuffling, fear and avoiding of obstacles such as stairs) and new onset seizures can be early markers of cognitive decline.6 doi: 10.32481/djph.2021.09.016

DIAGNOSING MILD COGNITIVE IMPAIRMENT (MCI-DS) AND AD IN PATIENTS WITH DS The most commonly used screening tool for evaluating the early indicators of dementia in DS is the National Task Group – Early Detection Screen for Dementia (NTG-EDSD).7 The instrument contains both signal items associated with an increased risk of AD (unexpected problems with memory, getting lost, gait changes, new seizures, confusion in familiar settings, personality change) and 51 questions in six cognitive or functional domains - Activities of Daily Living (ADL), Language, Sleep-Wake Change Patterns, Ambulation, Memory, and Behavior and Affect. In evaluating the sensitivity of the NTG-EDSD specifically for the detection of MCI-DS, the authors highlight some of the difficulties in using the instrument clinically, which include a lack of consensus with respect to the diagnostic criteria for MCIDS beyond a decline in cognitive abilities worse than expected for age, and for AD in DS in general since there are a lack of population-based standards.7 The NTG-EDSD scoring scale helps clinicians compare patients with DS to their own baseline as the questions are scored always been the case, always but worse, new symptom in the past year, or does not apply. The framework of analysis reflects transitions from “clinically stable” to concern for MCI-DS to suspicious for AD. One or more new concerns in the domains of Language and Memory appear to distinguish individuals who are cognitively stable vs. those with probable early AD (Sensitivity = 0.895 and Specificity = 0.802) or MCI-DS (Sensitivity = 0.806 and Specificity = 0.802).7 In practical terms for the busy clinician, the authors of this study suggest that the likelihood is extremely high that an individual with five or more concerns in the domains of Language and Memory has MCI-DS or AD and is high if there is at least one concern. In contrast, those with no concerns in the Language and Memory domain or few concerns overall or in signal items have a low likelihood of MCI-DS or AD. Using a criterion of five or more concerns overall, the study found a sensitivity of 0.868 for dementia (vs 0.417 for MCI-DS) with a specificity of 0.802.7

CLINICAL EVALUATION IN AGING PATIENTS WITH DS Annual assessment of thyroid function and periodic assessment for risk of sleep apnea are important in the lifespan care of individuals with DS. A decline in mean verbal IQ and decreased cognitive flexibility is seen in individuals with DS and untreated OSA.8 In patients with DS where there are concerns for functional decline other conditions to consider are depression, anxiety, vision/hearing changes, Vitamin B12 deficiency, celiac disease, structural heart disease, seizure disorder, polypharmacy, diabetes, kidney disease, or urinary tract infection. Somewhat unique to individuals with DS is atlantoaxial instability (AAI) presenting as functional decline. In general, the risk of AAI is much higher in younger individuals than older individuals with DS but can present as change in gait, handedness, or functional decline.

Individuals with DS may have difficulty expressing pain due to challenges with communication but this possibility should be explored. Validated scales for depression or anxiety do not exist for individuals with DS so clinicians have to be clinically suspicious and need to consider therapeutic trials as part of their diagnostic work up. Constipation is extremely common in individuals with DS and needs to be considered.

TREATMENT STRATEGIES Pharmacotherapy has shown little promise in the prevention or treatment of AD in patients with DS although the evidence is of low quality. Clinicians can consider a trial of medications to postpone expression of symptoms and to improve function slightly, but need to monitor for side effects.9 Pharmacotherapy and non-pharmacologic approaches to treat co-existing depression and anxiety, and improve quality of life are important considerations in the care of patients with AD and DS. Cognitive enhancers such as donepezil or rivastigmine are the only drugs approved by the FDA for the treatment of AD investigated in individuals with Down syndrome (DS). Symptom specific therapy may be necessary if a patient is impulsive or aggressive; both stimulant and antipsychotic medications may be used on an “offlabel” basis (based on evidence but not FDA indication) in low doses respectively.

ROLE OF THE INTERPROFESSIONAL TEAM IN THE CARE OF PATIENTS WITH KNOWN OR SUSPECTED MCI-DS OR AD Caring for and supporting patients with DS and MCI-DS and AD is best managed from an Interprofessional team approach to achieve the best outcomes.10,11 Patients with DS and MCI-DS or AD may demonstrate changes in behavior, personality, emotional responses and/or affect as well as difficulty with familiar activities such as self-care or decreased participation in activities they used to enjoy as the condition worsens. This can be stressful for caregivers when strategies that have been successful in supporting the patient with DS are no longer working.12 Having a network of Interprofessional providers with expertise in addressing these changes can help families and caregivers prepare for “next steps,” integrate adaptations to help the patient remain age in place and implement strategies to improve the quality of life for the patient and the caregivers.13 Social workers, case managers, nurses and occupational therapists can evaluate the needs of the patient and caregiver and provide recommendations to support patient participation in activities and routines which can improve patient overall health and well-being as well as reduce unwanted behaviors. Several national resources are available to provider information and resources on best practices in supporting patients with DS and MCI-DS and AD. Closer to home, regional and local resources with expertise in supporting patients with DS can provide more specific consultation and support tailored to the individual patient and caregiver needs.

The role of primary care becomes apparent when health disparity is demonstrated.14 As the mean age of survival for an individual with DS stretches to 60 years and beyond, the need for appropriate cancer screening is all the more relevant.15 Those with intellectual and developmental disabilities (IDD) are not screened for breast, colon, prostate, and cervical cancer at the rates of their similaraged peers without IDD. Thus, higher morbidity and mortality result. During the COVID-19 pandemic, those with IDD had higher risk of contracting, and also becoming sick and dying from the virus.16 The goal of the primary care physician is to recognize and manage the medical and socioeconomic disparity that exists for patients with DS, especially as they age. In the case of patients with DS and dementia, understanding the living situation, who speaks for the individual when they cannot speak for themselves, recognizing the potential for injury and abuse—all while providing quality health care—takes an interprofessional team.

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EMERGING RESEARCH The Alzheimer’s Biomarkers Consortium – Down Syndrome (ABC-DS) is a NIH-funded research initiative to evaluate the effectiveness of biomarkers for both diagnosis and prognosis. PET Scan is being studied for its role in both diagnosis and prognosis.

Amyloid PET is positive in nearly all individuals with DS by the age of 40 given the uniform presence of plaques and tangles, so is not helpful in diagnosis or prognosis, but Tau PET may play a role.

In 2018, the NIH launched the INCLUDE project (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) which funds multiple studies to address general health and quality-of-life needs for people with DS. Improving baseline health status and inclusive health practices that address health disparities may have a protective role or delay the onset of clinically significant signs and symptoms of AD. LG’s NTG-EDSD was suspicious for AD. She was started on donepezil but had diarrhea that was not improved by diet, other medications, and changing the timing of administration. Her case manager was instrumental in engaging LG in one on one smaller activities and a nutritionist helped plan 4-5 mini meals a day which LG enjoys. Her weight has stabilized though she continues to pocket food and her diet was downgraded to a minced and moist consistency to make it easier to chew. She goes for a walk once a day with a walker, sometimes on the tennis courts. She keeps her eyes open when she is chair dancing; music and singing are the most effective treatments for her withdrawal and lack of verbal response. Though the pandemic decreased her opportunities for engaging in community activities outside of her home, at the time of this writing, she was enjoying her first live music experience with friends on a sunny patio in her town.

REFERENCES 1. Millan Sanchez, M., Heyn, S. N., Das, D., Moghadam, S., Martin, K. J., & Salehi, A. (2012, March 1). Neurobiological elements of cognitive dysfunction in down syndrome: Exploring the role of APP. Biological Psychiatry, 71(5), 403–409. https://doi.org/10.1016/j.biopsych.2011.08.016 2. Tsou, A. Y., Bulova, P., Capone, G., Chicoine, B., Gelaro, B., Harville, T. O., . . . Whitten, M. S., & the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup. (2020, October 20). Medical care of adults with Down syndrome: A clinical guideline. JAMA, 324(15), 1543–1556. https://doi.org/10.1001/jama.2020.17024 3. Chicoine, B., Rivelli, A., Fitzpatrick, V., Chicoine, L., Jia, G., & Rzhetsky, A. (2021, April 19). Prevalence of common disease conditions in a large cohort of individuals with down syndrome in the United States. Journal of Patient-Centered Research and Reviews, 8(2), 86–97. https://doi.org/10.17294/2330-0698.1824 4. Coppus, A. M. (2013). People with intellectual disability: What do we know about adulthood and life expectancy?

Developmental Disabilities Research Reviews, 18(1), 6–16. https://doi.org/10.1002/ddrr.1123 130 Delaware Journal of Public Health - September 2021

5. Lautarescu, B. A., Holland, A. J., & Zaman, S. H. (2017, March).

The early presentation of Dementia in people with Down syndrome: A systematic review of longitudinal studies.

Neuropsychology Review, 27(1), 31–45. https://doi.org/10.1007/s11065-017-9341-9 6. Anderson-Mooney, A. J., Schmitt, F. A., Head, E., Lott, I. T., & Heilman, K. M. (2016, April). Gait dyspraxia as a clinical marker of cognitive decline in Down syndrome: A review of theory and proposed mechanisms. Brain and Cognition, 104, 48–57. https://doi.org/10.1016/j.bandc.2016.02.007 7. Silverman, W., Krinsky-McHale, S. J., Lai, F., Diana Rosas, H., Hom, C., Doran, E., . . . Schupf, N., & the Alzheimer’s Disease in Down Syndrome (ADDS) Consortium. (2021, May).

Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to ‘mild cognitive impairment’ in adults with Down syndrome. J Appl Res Intellect Disabil, 34(3), 905–915. https://doi.org/10.1111/jar.12849 8. Breslin, J., Spanò, G., Bootzin, R., Anand, P., Nadel, L., & Edgin, J. (2014, July). Obstructive sleep apnea syndrome and cognition in Down syndrome. Developmental Medicine and Child Neurology, 56(7), 657–664. https://doi.org/10.1111/dmcn.12376 9. Prasher, V. P., & Prasher, M. (2016, December). Folate, vitamin B(12), Down syndrome and Alzheimer’s disease. International Journal of Geriatric Psychiatry, 31(12), 1372–1373. https://doi.org/10.1002/gps.4519 10. Wranik, W. D., Price, S., Haydt, S. M., Edwards, J., Hatfield, K., Weir, J., & Doria, N. (2019, June). Implications of interprofessional primary care team characteristics for health services and patient health outcomes: A systematic review with narrative synthesis. Health Policy, 123(6), 550–563. https://doi.org/10.1016/j.healthpol.2019.03.015 11. Körner, M., Wirtz, M. A., Bengel, J., & Göritz, A. S. (2015, June 23). Relationship of organizational culture, teamwork and job satisfaction in interprofessional teams. BMC Health Services Research, 15(1), 243–243. https://doi.org/10.1186/s12913-015-0888-y 12. Iacono, T., Bigby, C., Unsworth, C., Douglas, J., & Fitzpatrick, P. (2014, October 25). A systematic review of hospital experiences of people with intellectual disability. BMC Health Services Research, 14(1), 505–505. https://doi.org/10.1186/s12913-014-0505-5 13. Jokinen, N., Janicki, M., Keller, S., McCallion, P., Force, L. T. and National Task Group on ID and Dementia Practices. (2013).

Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia.

Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1–24. https://doi.org/10.1111/jppi.12016 14. Krahn, G. L., & Fox, M. H. (2014, September). Health disparities of adults with intellectual disabilities: What do we know? What do we do? J Appl Res Intellect Disabil, 27(5), 431–446. https://doi.org/10.1111/jar.12067 15. Bull, M. J. (2020, June 11). Down Syndrome. The New England Journal of Medicine, 382(24), 2344–2352. https://doi.org/10.1056/NEJMra1706537 16. Doody, O., & Keenan, P. M. (2021, December). The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: A scoping review. Annals of Medicine, 53(1), 786–804. https://doi.org/10.1080/07853890.2021.1922743

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GLOBAL GLOBAL HEALTH GLOBAL HEALTH M HEALTH M AT AT TERS TERS M AT TERS

Inside this issue Inside this issue mHealth app reduces Inside this issue JULY/AUGUST 2021 JULY/AUGUST 2021

mHealth app reduces pregnancy, delivery mHealth appdelivery reduces pregnancy, risks in LMICs . . . p. 3 pregnancy, delivery risks in LMICs . . . p. 3

FOGARTY INTERNATIONAL CENTER • NATIONAL JULY/AUGUST INSTITUTES OF HEALTH HEALTH AND HUMAN SERVICES risks in OF LMICs . . . p. 134 3 2021• DEPARTMENT FOGARTY INTERNATIONAL CENTER • NATIONAL INSTITUTES OF HEALTH • DEPARTMENT OF HEALTH AND HUMAN SERVICES

NIH requests input on climate change and health NIH requests input on climate change and health NIH requests input on climate change and health

FOGARTY INTERNATIONAL CENTER • NATIONAL INSTITUTES OF HEALTH • DEPARTMENT OF HEALTH AND HUMAN SERVICES

PhotoPhoto

by Stockbyte/Thinkstock by Photo Stockbyte/Thinkstock

by Stockbyte/Thinkstock

Extreme weather events, rising sea levels and other aspects The RFI notes that climate change threats influence a of climateweather change events, pose substantial to human broad range ofthat health concerns including Extreme rising sea threats levels and other aspects The RFI notes climate change threatscommunicable influence a health.

Addressing these has been identified the Biden and noncommunicable diseases,including injuries, communicable hazardous of climate change pose substantial threats toby human broad range of health concerns Extreme weather events, rising sea levels and other aspects The RFI notes that climate change threats influence a Administration as an urgent that requires wholeexposures, mental health and death.

Somehazardous impacts are health.

Addressing these haspriority been identified by the“aBiden and noncommunicable diseases, injuries, of climate change pose substantial threats to human broad range of health concerns including communicable of-government approach.”

At the NIH, immediate—from hurricanes, heat Administration as an urgent priority that requires “a wholeexposures, mental health and death. Some impacts are health. Addressing these has been identified by the Biden and noncommunicable diseases, injuries, hazardous a working group has been meeting to waves, floods and droughts—while of-government approach.” At the NIH, immediate—from hurricanes, heat Administration as an urgent priority that requires “a wholeexposures, mental health and death. Some impacts are consider thehas agency enhance others result more gradual a workinghow group beencan meeting to waves, floods from and droughts—while of-government approach.” At the NIH, immediate—from hurricanes, heat research how on the implications changes, suchfrom as rising levels. consider thehealth agency can enhance others result more sea gradual a working group has been meeting to waves, floods and droughts—while of climateon change in theimplications U.S. and In the U.S. andas globally, structural research the health changes, such rising sea levels. consider how the agency can enhance others result from more gradual globally. than Institutes, racism and and discrimination place of climateMore change innine the U.S. and In the U.S. globally, structural research on the health implications changes, such as rising sea levels.

Centers and Offices are participating communities of color, underglobally.

More than nine Institutes, racism and discrimination place of climate change in the U.S. and In the U.S. and globally, structural in the effort, which isare co-chaired by resourced, health disparity Centers and Offices participating communities of color, underglobally. More than nine Institutes, racism and discrimination place NIEHS and Fogarty. committee populations and other historically in the effort, which isThe co-chaired by is resourced, health disparity Centers and Offices are participating communities of color, underinviting stakeholder input to inform the disadvantaged communities at NIEHS and Fogarty. The committee is populations and other historically in the effort, which is co-chaired by resourced, health disparity process. higher risk from the health impacts inviting stakeholder input to inform the disadvantaged communities at NIEHS and Fogarty. The committee is populations and other historically of climate Understanding process. higher riskchange. from the health impacts inviting stakeholder input to inform the disadvantaged communities at In a Request for Information theclimate health change. implications—including of Understanding process. higher risk from the health impacts (RFI) published the NIH Guide, potential benefits—of actions In a Request forin Information the healthhealth implications—including of climate change. Understanding The NIH is requesting advice on how to best advance six respondents arein asked to provide to prevent, mitigate and adapt to (RFI) published the NIH Guide, potential health benefits—of actions research priorities related to climate change and health.

In a Request for Information the health implications—including The NIH is requesting advice on how to best advance six advice on six are research climate change offers opportunities respondents asked priorities to providerelated research priorities related to climate change and health. to prevent, mitigate and adapt to (RFI) published in the NIH Guide, potential health benefits—of actions to climate change and health—innovative approaches, to to improve thesix social and environmental advice on six research priorities related The climate change offers determinants opportunities of NIH is requesting advice on how best advance respondents are asked to provide to prevent, mitigate and adapt to research priorities related to climate change and health. scientific infrastructure, partnerships to address health, especially for at-risk communities. to climate change and health—innovative approaches, to improve the social and environmental determinants of advice on six research priorities related climate change offers opportunities environmental injustice, partnerships rapid response scientific infrastructure, to capacity, address training health, especially for at-risk communities. to climate change and health—innovative approaches, to improve the social and environmental determinants of needs to build ainjustice, diverse climate change and healthtraining research Responses to the RFI must be e-mailed to NIEHS-RFIenvironmental rapid response capacity, scientific infrastructure, partnerships to address health, especially for at-risk communities. work force, anda dissemination translation of research CCHH@niehs.nih.gov

by Sept.

17, 2021.toThe RFI is needs to build diverse climateand change and health research Responses to the RFI must be e-mailed NIEHS-RFIenvironmental injustice, rapid response capacity, training findings intoand strategies that protect health. available at https://bit.ly/NIH_CChealth. work force, dissemination and translation of research CCHH@niehs.nih.gov

by Sept. 17, 2021. The RFI is needs to build a diverse climate change and health research Responses to the RFI must be e-mailed to NIEHS-RFIfindings into strategies that protect health. available at https://bit.ly/NIH_CChealth. work force, and dissemination and translation of research CCHH@niehs.nih.gov by Sept. 17, 2021. The RFI is findings into strategies that protect health. available at https://bit.ly/NIH_CChealth.

1.5M children have lost a caregiver to COVID-19 1.5M children have lost a caregiver to COVID-19 1.5M children have lost a caregiver to COVID-19 More than 1.5 million children around the world are estimated have lost children at least one parent, More than to 1.5 million around the custodial world are grandparent, or grandparent with them due to estimated to have lost at leastwho onelived parent, custodial More than 1.5 million children around the world are COVID-19-related deaths, according to with a study published grandparent, or grandparent who lived them due to estimated to have lost at least one parent, custodial in The Lancet.

The research—which covered the first 14 COVID-19-related deaths, according to a study published grandparent, or grandparent who lived with them due to months of the pandemic—highlights orphanhood as an in The Lancet. The research—which covered the first 14 COVID-19-related deaths, according to a study published urgent overlooked consequence of COVID-19 as and monthsand of the pandemic—highlights orphanhood an in The Lancet. The research—which covered the first 14 emphasizes that providing evidence-based psychosocial urgent and overlooked consequence of COVID-19 and months of the pandemic—highlights orphanhood as an emphasizes that providing evidence-based psychosocial urgent and overlooked consequence of COVID-19 and emphasizes that providing evidence-based psychosocial

FOCUS FOCUS FOCUS 132 Delaware Journal of Public Health - September 2021

and economic support to children who have lost a caregiver musteconomic be a key support part of responding thehave pandemic. and to childrento who lost a caregiver must be a key part of responding to the pandemic. and economic support to children who have lost a caregiver The analysis used mortality and fertility data to model must be a key part of responding to the pandemic. rates of COVID-19-associated orphanhood and The analysis used mortality and fertility data todeaths model of custodial and co-residing grandparents from March 1, of rates of COVID-19-associated orphanhood and deaths The analysis used mortality and fertility data to model 2020 to April 30, 2021, across 21 countries.

This study custodial and co-residing grandparents from March 1, rates of COVID-19-associated orphanhood and deaths of was funded part by the NIH’s21 National Institute on Drug 2020 to Aprilin30, 2021, across countries.

This study custodial and co-residing grandparents from March 1, was funded in part by the NIH’s National Institute on . . . continued onDrug p. 2 2020 to April 30, 2021, across 21 countries. This study . . . continued on next page . . . continued onDrug p. 2 was funded in part by the NIH’s National Institute on

. . . continued on p. 2 Scientists craft US-Latin American research agenda on child obesity Scientists craft US-Latin agenda child obesity • Migration, exercise, foodAmerican and social research environments requireon study

• Better measurement tools and solutions areon needed Migration, exercise, foodAmerican and systems-based social research environments require study Scientists craft US-Latin agenda child obesity Research capacity, implementation science should be strengthened • Better measurement tools and systems-based solutions are needed • Migration, exercise, food and social environments require study • Research capacity, implementation science should be strengthened more on pages 137-140 6–9 Read More onneeded • Better measurement tools and systems-basedRead solutions are Read more on pages • Research capacity, implementation science should be strengthened6 – 9 Read more on pages 6 – 9

JULY/AUGUST 2021 JULY/AUGUST 2021

NIH awards $100M for global HIV data analysis NIH awards $100M for global HIV data analysis The NIH has renewed grants to The NIH has renewed to the seven regional centersgrants that form seven regionalepidemiology centers that Databases form the International International epidemiology Databases to Evaluate AIDS (IeDEA) program and to Evaluate AIDS (IeDEA) program plans to award about $100 million and in plans to award about $100 million in total over five years. The 15-year-old total over five years.

The 15-year-old IeDEA program efficiently advances IeDEA program advances knowledge aboutefficiently HIV by pooling and knowledge about bymore pooling and analyzing de-identified health dataHIV from than two analyzing de-identified from more than two million people with HIVhealth on fivedata continents to answer million people with that HIV on five continents answer research questions individual studies to cannot research questions that individual studies cannot address. address.

The program addresses local, national and global The program addresses local, national and global questions about illness and death in people with HIV to questions about illness andending death in with HIV accelerate progress toward thepeople pandemic.

The to acceleratealso progress toward the pandemic.

The initiative provides dataending to international partners initiative also provides data to international partners such as the WHO and UNAIDS to inform global health such asInthe WHO and UNAIDS toglobal informhealth globalresearch health policy. addition, IeDEA builds policy. In addition, IeDEA builds global health research infrastructure to help the next generation of scientists infrastructure to help the next of scientists address questions important togeneration their geographical regions. address questions important to their geographical regions.

Finally, the program works to improve the quality of Finally, the program works improve the quality of data international health data bytoidentifying gaps in both international health data by identifying gaps in both data

and analytical methods and determining how to fill them. and new analytical methods and determining to fill The funding will enable the program how to add a them.

The new Research funding will enable(SRN) the program to add a collect Sentinel Network to prospectively Sentinel Research Network (SRN) to prospectively cardiovascular, cancer, lung, metabolic, substancecollect use and cardiovascular, cancer, lung, metabolic, substance use of and mental health data to characterize the sizeable impact mental health data to characterize the sizeable impact of noncommunicable diseases on people with HIV today. noncommunicable diseases onMentorship people withProgram HIV today.

The program’s Fogarty-IeDEA The continue program’stoFogarty-IeDEA Mentorship will help competitively selectedProgram early-stage will continue formulate to help competitively investigators hypotheses,selected conductearly-stage analyses, investigators formulate hypotheses, conduct analyses, write papers and participate in scientific meetings. write papers and participate in scientific meetings.

Half of the new funding for IeDEA comes from the NIH’s Half of the new funding for IeDEA comes from the NIH’s National Institute of Allergy and Infectious Diseases.

The National Institute of Allergy and Infectious Diseases. other half comes from NIH funding partners includingThe other halfthe comes from NIH funding Fogarty; Eunice Kennedy Shriverpartners Nationalincluding Institute Fogarty; the Eunice Shriver National of Child Health and Kennedy Human Development; the Institute National of ChildInstitute; Health and Development; National Cancer theHuman National Institute on the Alcohol Abuse Cancer Institute;the theNational NationalInstitute InstituteofonDiabetes Alcohol and Abuse and Alcoholism; and Alcoholism; the National Institute of Diabetes andon Digestive and Kidney Diseases; the National Institute Digestive andthe Kidney Diseases; National Institute on Drug Abuse; National Heart,the Lung, and Blood Institute; Drugthe Abuse; the National Lung, and Blood Institute; and National Institute Heart, of Mental Health. and the National Institute of Mental Health.

More information is available at IeDEA.org.

More information is available at IeDEA.org.

1.5M children have lost a caregiver to COVID-19 1.5M children have lost a caregiver to COVID-19 . ... .continued from previous continued from p.1 page . . . continued from p.1 Abuse (NIDA). Traumatic experiences, such as the loss Abuse (NIDA).

Traumaticare experiences, the loss of a parent or caregiver, associatedsuch with as increases of a parent or caregiver, are associated with increases in substance use, mental health conditions, and other in substance use, mental health conditions, andsupports other behavioral and chronic health conditions.

NIDA behavioral and chronic health conditions.

NIDA supports research aimed at understanding the impact of trauma on research aimedpreventing at understanding theuse impact trauma on young people, substance afterof experiencing young people, preventing substance after experiencing hardship and treating substance useuse in populations that hardship and treating substance use in populations that experience trauma. experience trauma.

“Studies like this play a crucial role in illuminating the “Studies like this play along-lasting crucial roleconsequences in illuminating COVID-19 pandemic’s forthe COVID-19 pandemic’s consequences for of families and the futurelong-lasting mental health and wellbeing families and thethe future mental and wellbeing of children across globe,” saidhealth NIDA Director Dr. Nora children across the globe,” said NIDA Director Dr. Nora D. Volkow.

“Though the trauma a child experiences after D. Volkow. thecaregiver trauma a child experiences after the loss of a“Though parent or can be devastating, the loss a parent or caregiver can be that devastating, there areofevidence-based interventions can prevent there are evidence-based interventions can prevent further adverse consequences, such as that substance use, further adverse consequences, such as substance use, and we must ensure that children have access to these and we must ensure that children have access to these interventions.” interventions.”

To estimate pandemic-associated orphanhood and To estimate pandemic-associated orphanhood andand caregiver deaths, the study used excess mortality caregiver deaths, thedata study excess mortality and COVID-19 mortality forused 21 countries that accounted COVID-19 mortality data fordeaths 21 countries accounted for 77% of global COVID-19 duringthat 2020 and for 77% of global deaths during and early 2021.

TheseCOVID-19 include Argentina, Brazil,2020 Colombia, early 2021. These include Argentina, Brazil, Colombia,

2 2

England and Wales, France, Germany, India, Iran, Italy, EnglandMalawi, and Wales, France, Germany, India, Iran, Poland, Italy, Kenya, Mexico, Nigeria, Peru, Philippines, Kenya, Malawi, Mexico, Nigeria, Peru, Philippines, Poland, Russian Federation, South Africa, Spain, United States Russian Federation, South Africa, Spain, United States and Zimbabwe. and Zimbabwe.

The authors estimate that 1,134,000 children lost a parent Thecustodial authors grandparent estimate thatdue 1,134,000 children lost a parent or to COVID-19-associated or custodial grandparent due to COVID-19-associated death.

Of these, 1,042,000 children were orphaned of a death. Offather these,or1,042,000 children were orphaned of a mother, both. Overall, 1,562,000 children are mother, father or both.

Overall,the 1,562,000 are estimated to have experienced death ofchildren at least one estimated have experienced the death ofgrandparent. at least one parent or atocustodial or other co-residing parent or a custodial or other co-residing grandparent.

The countries with the highest numbers of children who The primary countriescaregivers with the highest of children who lost include numbers South Africa, Peru, United lost primary Africa, Peru, United States, India,caregivers Brazil andinclude Mexico.South Countries with rates of States, India, Brazil and Mexico.

Countries with rates of COVID-19-associated deaths among primary caregivers COVID-19-associated deaths among include primaryPeru, caregivers greater than one per 1,000 children South greater Mexico, than one per 1,000 children include South Africa, Brazil, Colombia, Iran, UnitedPeru, States, Africa, Mexico, Brazil, Colombia, Iran, United States, Argentina and Russia.

Argentina and Russia.

The study found that for every country, COVID-19 The study found forgreater every country, COVID-19 associated deathsthat were in men than women, associated deaths wereand greater in men than women, particularly in middleolder-ages.

Overall, there were particularly in middleand older-ages. were up to five times more children who lost Overall, a father there than who up toa five times more children who lost a father than who lost mother. lost a mother.

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JULY/AUGUST 2021

mHealth app reduces LMIC pregnancy, delivery risks Pregnancy and childbirth are especially risky in rural Guatemala where about half of Indigenous Maya women deliver their babies at home with the assistance of midwives.

With little capacity to screen for complications—combined with language issues and the systemic discrimination Maya women face navigating health care facilities—the result is higher maternal and infant mortality rates than elsewhere in the country.

During a one-year randomized control feasibility study involving about 800 pregnancies, use of the screening app resulted in “a significant increase” in emergency referrals to care facilities and demonstrated the technology was feasible for use in the low-resource setting. The results were so impressive, the tool has been adopted as standard of care and used in several thousand births over the last five years.

One recent patient diagnosed with pre-eclampsia by a midwife using the mHealth app said she owes her life to the program. Her midwife used the app to connect her with a care navigator from a local organization, who accompanied her to the hospital where she delivered a healthy baby via cesarean section.

The intervention’s success is the result of close collaboration with the local organization, Wuqu' Kawoq (Maya Health Alliance). The Alliance recruited the necessary Guatemalan health care institutions and providers plus midwives to partner on the project. “Our work is important because we are one of the only groups to really understand the social determinants of health for Indigenous communities in rural Guatemala,” said Dr. Peter Rohloff, its chief medical officer and co-investigator. Throughout the study, he built these relationships, navigated the public health regulatory environment and facilitated the participation of the midwives in the design process.

NIH-funded researchers have developed and tested a mobile health screening tool in rural Guatemala that enables midwives to screen pregnant Maya women for complications and make referrals to health care facilities.

Courtesy of Bryan Watt, Photographers without Borders

NIH-funded researchers have developed and tested a mobile health solution that is helping to change that. By combining a $10 ultrasound device, blood pressure cuff and pulse oximeter that feed directly into a smartphone, Emory University’s Dr. Gari Clifford and colleagues have produced a screening and referral tool that enables midwives to spot issues and make referrals to health care facilities. Working closely with a local organization, the team developed an app to guide low-literacy midwives through a pictographic checklist of common complications. A positive indication triggers automatic communication with an on-call clinical team. Vital sign abnormalities also spur text message alerts.

The app includes audio instructions for how to deal with different scenarios recorded in the local Kaqchikel language for those who cannot read.

“We’re talking so much about decolonizing global health and shifting power dynamics and I think this is how you do it,” observed co-investigator Dr. Rachel Hall-Clifford, an anthropologist at Emory. “The co-design process— developing the program and the app with the women and implementing it—is so deeply meaningful and essential for creating sustainable programs.”

The project was largely funded by the Eunice Kennedy Shriver National Institute for Child Health and Human Development through Fogarty’s mHealth program. Since 2013, Fogarty has been working to catalyze mHealth innovation through multidisciplinary research that addresses global health problems, develop an evidence base for mHealth and strengthen research capacity. In Guatemala, 44 midwives were trained to diagnose and monitor key pregnancy complications as defined by the WHO. Several personnel involved received mentorship in research study design, technology development and scientific writing.

The scientists believe the program could be scaled up across Guatemala and holds potential for other lowresource settings. The team is currently building a new collaboration with Morehouse School of Medicine to adapt the program to serve an African American population in Georgia. “In global health, we are eager to get stuff done and start saving lives,” noted Hall-Clifford. “But it’s important to take a breath, and work with stakeholders to build long-term partnerships.”

RESOURCES https://bit.ly/mHealth_births

3 134 Delaware Journal of Public Health - September 2021

PROFILE Fogarty Fellow studies benefits of police education program in Tijuana, Mexico Tijuana is a border city in Mexico with a thriving red-light district that is a popular destination for drug and sex tourists traveling from the U.S. This to-and-fro traffic has contributed to an HIV epidemic, with prevalence as high as 10% among people who inject drugs (PWID). Policing practices such as syringe confiscation and arrest can be significant drivers of infection risk, while police referrals to treatment and other services can improve health and reduce drug-related harm. An innovative police education program is attempting to protect officers from occupational needlestick injuries while simultaneously harmonizing law enforcement and public health priorities. During his Fogarty fellowship, Dr. Javier Cepeda began studying the program’s results and evaluating whether changing policing practices through police education is cost effective, in terms of reducing HIV incidence. If so, he and his colleagues believe it may hold promise as a strategy to reduce HIV transmission among people who inject drugs in locations around the world.

Cepeda said he hopes his work will inform evidence-based decisions. “I thought economic modeling would be a really good way to bridge the science with policymaking.” By providing a cost-effectiveness analysis, the public health value could be demonstrated. “You can make the logical argument that if you change policing behavior—so they’re no longer confiscating syringes and instead referring people to drug treatment instead of prison—here’s the impact you would have on HIV transmission, which would drop because drug users are no longer sharing syringes and can get treated for substance use,” he noted. Policymakers can compare the cost of the intervention versus the disease burden if no action is taken.

As a first step, Cepeda and his colleagues conducted a baseline survey of 1,319 police officers who had reported syringe contact in Tijuana, where possession of syringes has never been illegal. Nearly half said they always or sometimes confiscated syringes, about 43% had made arrests for heroin possession and 37% had referred drug users to health and social programs. The officers’ knowledge of drug laws was low, with more than a third incorrectly believing syringe possession was a criminal offense and nearly three-quarters unaware that possession of small amounts of heroin had been decriminalized.

4

Javier Cepeda, PhD, MPH Fogarty Fellow:

2016-2017

US Institution:

University of California, San Diego

Foreign Institutions: Xochicalco University and Secretario de Seguridad y Proteccion Ciudadana de Tijuana Research area:

Cost analysis of a police education program

Cepeda said the mathematical modeling and economic evaluation skills he acquired during his Fogarty fellowship are now being applied to other settings. “For instance, in the U.S., there are interesting decriminalization proposals being discussed in Baltimore—if low-level drug offenders are no longer incarcerated, how much could be saved and spent on public health instead? The skills can be quite broadly applied, and that was very much thanks to Fogarty.”

The fellowship also helped him develop as a manager, Cepeda observed. Overseeing his first independent research project was like running a small business.

He is now applying those lessons learned in key leadership roles. In March 2021, he was appointed assistant professor at Johns Hopkins and serves on the International Journal of Drug Policy’s editorial board and on the Lancet Commission on Health and Human Rights.

Using the Fogarty fellowship data and training as his foundation, Cepeda went on to secure funding from the NIH’s National Institute on Drug Abuse (NIDA) to continue his work in Tijuana, which has also been supported by the NIH’s National Institute of Allergy and Infectious Diseases.

More recently, he has been funded by NIDA to study HIV stigma in Kyrgyzstan.

“It’s important to step outside your comfort zone,” he said, adding that he advises his mentees to apply for the year-long Fogarty Fellowship. “You’ll be so much better as a researcher with more skills plus you’ll become a more resilient person as well. When you’re out in the field, you’re driving a lot of the work and you have to learn how to be really independent.”

RESOURCES https://bit.ly/Cepeda_police 135

Q&A

ANDREW KAMBUGU, MBCHB, MMED

Dr. Andrew Kambugu is the Sande-McKinnell Executive Director of the Infectious Disease Institute (IDI) in Kampala, Uganda. He is also honorary lecturer at Makerere University and associate professor at the University of Minnesota. Kambugu earned his basic and residency medical degree from Makerere with Fogarty support and then received advanced training in infectious disease research in the U.S. Since then, he has been a principal investigator on numerous NIH grants involving topics such as Kaposi’s sarcoma and cervical cancer, in addition to a Fogarty training grant that is helping to enhance HIV research capacity in East Africa.

Tell us about your early career.

After five years of medical school and then my internship—all sponsored by the Ugandan government—I was surprised to find no openings for doctors in government departments, so I became a research assistant for projects at Makerere University. I was then selected as one of the first Ugandan trainees under Fogarty’s AIDS International Training and Research Program (AITRP) grant and my life has never been the same. In life there are significant forks in the road and this was one for me.

My training in the U.S. was transformative. That’s when I began to have an inkling that I might have a propensity for research even though I loved clinical medicine.

How did you benefit from Fogarty training?

During my time at Case Western Reserve University in the U.S., I honed my clinical and research skills. This was my baptism into research, from conception of the idea, undertaking a literature review to shape it into a good research question, writing up the full proposal and navigating it through the research ethics approval process. I then made all the logistical arrangements to undertake the study and to collect the relevant data, analyze it and write the paper. It gave me a good grounding in the nuts and bolts of research.

How did you progress on the research track?

When I returned to Uganda, I was asked to lead IDI’s prevention, care and treatment program. After seven years in that role, I became head of research and have been leading the entire Institute for three years now. I transitioned to research because of my conviction that the visibility of African leadership in research should be enhanced at IDI. We created a program that supports African scientists—many who are women—over the longer term so they can truly become independent research thought leaders. Another area of focus is implementation science. We were generating a lot of data from our HIV programs and I recognized we needed to use that information in crafting evidence-based interventions.

I also served as principal investigator on a CDCfunded national study that examined whether welltrained nurses could perform as well as doctors with respect to initiating and monitoring patients on antiretroviral therapy. The resulting data was published and helped influence government policy.

I am also a member of HIV advisory groups, which influence our health ministry’s development of treatment protocols. Finally, I have been principal investigator on several NIH research grants and am currently PI on a Fogarty grant focusing on HIV and co-infections. I began as a Fogarty trainee and evolved into a Fogarty PI, where I help cultivate the next generation of research leaders.

What are your priorities for the future?

The institute is keen to continue contributing to HIV knowledge through our research innovations and evidence-based programming. During a strategy planning meeting, we saw that the IDI has done a really good job of identifying people with HIV, putting them in care and making sure they adhere to medication. What else can we do? If you look at a map of Africa, Uganda is near a hotspot where there is a lot of human-animal interaction that could give rise to emerging infectious diseases. In 2016, we began to establish a global health security program by piecing together a growing portfolio of projects, including infection treatment and antimicrobial resistance.

When COVID-19 appeared, we felt vindicated for making an investment in emerging infectious diseases.

Data science is also a focus area for IDI, which has become a center of excellence in this space. I want to create an environment where younger scientists can build their careers as I have. Fogarty can take pride in seeing African research leaders like me, who had their initial exposure to global public health through their programs, now mentoring the next generation.

RESOURCES https://bit.ly/Kambugu

136 Delaware Journal of Public Health - September 2021

5

FFO OCCUUSS

Scientists Scientists craft craft US-Latin US-Latin American research research American agendaon on child child obesity obesity agenda

To identify common research questions and strategies to To identify common research questions and strategies to address this problem, Fogarty’s Center for Global Health address this problem, Fogarty’s Center for Global Health Studies, in collaboration with eight NIH partners, convened Studies, in collaboration with eight NIH partners, convened a workshop in November 2019 that brought together a workshop in November 2019 that brought together researchers from the U.S. and Latin America. One outcome researchers from the U.S. and Latin America. One outcome is a collection of articles examining cross-cutting areas is a collection of articles examining cross-cutting areas relevant to both regions, recently published as a special relevant to both regions, recently published as a special issue of Obesity Reviews, guest edited by Drs. Rafael Perezissue of Obesity Reviews, guest

by Drs. Rafael PerezEscamilla, Abby King and Juanedited Rivera.

Escamilla, Abby King and Juan Rivera.

Latin American countries have many commonalities, the Latin American countries have continues many commonalities, authors observed.

The region to have starkthe authors observed. region continues to have stark inequalities, withThe widespread poverty and associated inequalities, with widespread povertysanitation and associated conditions such as undernutrition, problems conditions such diseases. as undernutrition, sanitation problems and infectious This, coupled with political and infectious diseases. coupled with political instability and conflict, This, has caused multiple waves of local, instability and global conflict, has caused of local, regional and migrations overmultiple the pastwaves century.

At regional and global migrations the past century.

At the same time, Latin Americanover countries have undergone the same interrelated, time, Latin American countries have undergone several rapid transitions, particularly several interrelated, transitions, particularly economic, resultingrapid in high levels of disease.

Meanwhile, over a third of all U.S.-based Latinos are foreign-born and economic, resulting in high levels of disease.

Meanwhile, so come from this background.

This are context is important over a third of all U.S.-based Latinos foreign-born and understanding the drivers of childhood in the sofor come from this background.

This contextobesity is important region, as well as among U.S. Latinos. for understanding the drivers of childhood obesity in the region, as well as among U.S. Latinos.

At both national and local levels, Latin America and U.S. have been innovative policy Atthe both national and implementing local levels, Latin America and interventions to tackle obesity and noncommunicable the U.S. have been implementing innovative policy diseases, including taxes on sugar-sweetened beverages interventions to tackle obesity and noncommunicable and food warning labels.

However, the authors noted, diseases, including taxes on sugar-sweetened beverages studies and programs are too often siloed, resulting and food warning labels. However, the authors noted,in a fractured response are to a too highly interconnected regionstudies and programs often siloed, resulting in wide issue.

The publication highlights the many research a fractured response to a highly interconnected region-

wide issue. The publication highlights the many research

6

6

Researchers in to to Researchers in the the U.S. U.S. and and Latin LatinAmerica Americaare arecollaborating collaboratingononstrategies strategies reduce childhood reduce childhood obesity, obesity, aa growing growingglobal globalhealth healthproblem. problem.

Photo by Werther Azevedo Photo by Werther Azevedo

TT

prevalenceofofchildhood childhoodobesity obesitywithin within the the United United hehe prevalence States is at an all-time high, particularly among Latino States is at an all-time high, particularly among Latino populations where more than a quarter of children populations where more than a quarter of children ages to19are areobese. obese.This Thisrising risingtrend trendisismirrored mirrored across across ages 22 to19 the entire Latin American region.

Childhood obesity the entire Latin American region. Childhood obesity negativelyimpacts impactsquality qualityofoflife lifeand andsignificantly significantly increases increases negatively the risk of adult obesity, leading to increased morbidity the risk of adult obesity, leading to increased morbidity and mortality. and mortality.

synergies between synergies between Latin LatinAmerica Americaand andLatino Latinopopulations populations in the U.S. and is focused on nine cross-cutting in the U.S. and is focused on nine cross-cuttingareas areasofof special concern: the food, social and built environments; special concern: the food, social and built environments; migration; endocrine migration; endocrine disrupters; disrupters;implementation implementationscience; science; measurement challenges; capacity measurement challenges; capacitybuilding buildingand andsystems systems solutions. solutions.

The NIH has launched a variety of initiatives aimed at The NIH has launched a variety of initiatives aimed at developing innovative approaches to help children eat developing innovative approaches to help children eat well and stay fit. One example is the U.S. Environmental well and stay fit. One example is the U.S. Environmental influences on Child Health Outcomes (ECHO) Program, influences on Child Health Outcomes (ECHO) Program, which supports longitudinal studies to investigate which supports longitudinal studies to investigate environmental exposures on child health and development. environmental exposures on child health and development.

NIH has also joined with the CDC, the Department of NIH has alsoand joined theWood CDC, the Department of Agriculture, the with Robert Johnson Foundation Agriculture, and the Robert Wood Johnson Foundation to form the National Collaborative on Childhood Obesity to form the Nationalwhich Collaborative Childhood Obesity Research (NCCOR), promoteson improved methods, Research (NCCOR), which promotes improved methods, sustainable interventions and better surveillance across sustainable interventions and better surveillance across multiple relevant sectors. And, the NIH’s National Cancer multiple the NIH’s Cancer Institute,relevant Office ofsectors.

Disease And, Prevention and National Fogarty are Institute, of Disease Prevention and Fogarty are supportingOffice the Latin American Congress of Physical supporting Latin American Congress of Physical Activity andthe Health Research, the first research-focused Activity Health Research, scientificand conference of its kind.the first research-focused scientific conference of its kind.

In addition, a dozen institutes at NIH have funded 140 In addition, a dozen institutes at the NIHlast have funded projects in childhood obesity over five years,140 of which 110 in the Latino projects in supported childhood research obesity over theU.S. lastamong five years, of populations, while 30 supported Latin America. which 110 supported research inresearch the U.S.inamong Latino Still, there remains a pressing need to evaluate policy and populations, while 30 supported research in Latin America. environmental changes that potentially influence childhood Still, there remains a pressing need to evaluate policy and obesity, the authors concluded.

Continued supportchildhood for environmental changes that potentially influence cross-border research and training throughout the region obesity, the authors concluded. Continued support for and encouragement of partnerships researchers cross-border research and training between throughout the region in Latin America and in the U.S. working with Latino and encouragement of partnerships between researchers populations will help innovative in Latin America andto ingenerate the U.S.evidence working for with Latino tools and interventions that can have a broad populations will help to generate evidence forimpact innovative acrossand both regions. Breaking outhave of country-specific tools interventions that can a broad impactsilos will allow researchers to tackle a global health challenge across both regions. Breaking out of country-specific silos that has no borders. will allow researchers to tackle a global health challenge that has no borders.

Resources: https://bit.ly/Obesity_research

Resources: https://bit.ly/Obesity_research

137

FOCUS ON CHILDHOOD OBESITY

Researchers study factors influencing child obesity Food environments

Regional migration

Children living in Latin America and the U.S. have a high intake of sugar-sweetened beverages and other ultra-processed foods, all key contributors to obesity, noncommunicable diseases and mortality. The dimensions of food environments—the overall conditions that influence a person’s food and beverage choices—include availability, quality, cost, social norms and preferences.

The authors of one study reviewed the literature seeking an optimal policy package to improve food environments and help curb growing childhood obesity levels in Latin America and among Latino children in the U.S. Some countries have been leaders in implementing policies to improve food environments. Mexico was the first to tax sugar-sweetened beverages and ultra-processed foods, while Chile developed the world’s first mandatory frontof-package warning label system.

All migrants undergo a process of acculturation and past research links this to overweight and obesity, the authors of another paper began. The community energy balance framework (CEB), an ecological model, explores acculturation as a dynamic process by which a group or individual culture is modified through continuous, first-hand contact with a different culture. To elucidate how migration impacts childhood obesity, the authors used the framework to analyze data from the Mexican Family Life Survey. They found that children embedded in migrant networks are at greater risk of developing overweight or obesity relative to children with no network ties to the U.S. This suggests that the influence of migration on the nutritional behaviors of children remaining in the origin country can be strong and detrimental as families are major channels for cultural transmission.

Physical activity

Social environment A child’s social environment—including family members, peers, and teachers—influences their risk for childhood obesity through, among other factors, a child's weightrelated behaviors such as eating and physical activity.

Authors of another study reviewed the evidence on social environmental factors and the prevention and control of childhood obesity among Latino children in the U.S. and children in Latin American countries. They found evidence to support interventions targeting parenting and family factors, and the home environment. Other promising though less-studied contexts that deserve further evaluation include childcare, education, healthcare and neighborhoods. Yet, researchers and practitioners also need to examine how best to reach groups that are more collectivistic and family-oriented since the problem of overweight and obesity is not separate from context.

138 Delaware Journal of Public Health - September 2021

Endocrine disrupters Exposure to persistent organic pollutants (POPs) during the pre- and perinatal periods has been associated with lower birthweight and lower percentage of neonatal fat mass. Meanwhile, certain phthalates have been associated with higher birthweight in the presence of maternal hyperglycemia, while in utero organophosphate pesticide exposure has been related to higher birthweight in a single study, though only among infants of mothers with a specific genotype.

All together, this evidence suggests that the origins of Latino childhood obesity may be linked to the endocrine disrupting chemicals found in everyday products, according to the authors of an analytical review.

The food environment is one aspect researchers are studying in their effort to reduce childhood obesity.

Photo by David Snyder for Fogarty

To prevent obesity among Latino youth in the U.S. and Latin America, it is necessary to understand the specific context and interplay of physical activity (PA) and the built environment (BE). The authors of another study explored how interventions targeting the BE and PA prevent childhood obesity. They found that to be effective, interventions intended to transform the environment must also impact youth social structures, including families, schools and other organizations in which children participate. School setting interventions that aim to promote physical activity require simultaneous implementation of programs for healthy food environments, both within and outside school. Additionally, rural areas are often neglected and need to be included when considering school interventions.

FOCUS ON CHILDHOOD OBESITY FOCUS ON CHILDHOOD OBESITY

Network Network considers considers actions actions to to combat combat child child obesity obesity Valid measurement tools Valid measurement tools

Valid, reliable and culturally sensitive measurements are Valid, reliable and culturally sensitive measurements are needed to address childhood obesity, yet the right tools needed to address childhood obesity, yet the right tools depend on a project’s purpose, the population of interest, depend on a project’s purpose, the population of interest, the age of participants and various practical concerns. the age of participants and various practical concerns.

Greater Greater efforts efforts to to engage engage the the public public in in identifying identifying critical critical factors influencing behavior and designing factors influencing behavior and designing measures measures are are needed, needed, the the authors authors of of another another study study stated. stated.

Many of the measures available have been developed Many of the measures available have been developed largely to serve the interests of the research community largely to serve the interests of the research community and English language measurements dominate. Most and English language measurements dominate. instruments that assess parenting styles, feedingMost instruments that assess parenting styles, feeding styles and parenting practices were developed for styles and parenting practices were developed white American or European populations. Yet, for a study white American or European populations.

Yet, a study measuring parental influences on childhood obesity measuring parental influences on childhood obesity showed variability dependent on ethnicity, such showed variability dependent on ethnicity, such as Mexican Americans vs. Dominican Americans. as Mexican Americans vs.instruments Dominican Americans.

Additionally, many of the used to measure Additionally, many of the instruments used to measure feeding practices were developed with mothers only and so underrepresent fathers, whosewith role mothers has changed feeding practices were developed only in and parallel with shifts fathers, in maternal employment. so underrepresent whose role has changed in parallel with shifts in maternal employment.

Culturally relevant instruments, including adapting existing measures different countries and populations, Culturally relevantfor instruments, including adapting should be used to assess the effects of parenting styles, existing measures for different countries and populations, parenting methods and feeding practices among groups should be used to assess the effects of parenting styles, of differentmethods backgrounds because these factors parenting and feeding practices amonghave groups serious implications for interventions, the authors of different backgrounds because these factors have concluded. serious implications for interventions, the authors concluded.

Systems-based solutions

High levels of childhood obesity among Latin American Systems-based solutions populations can be conceptualized as the result of a High levels of childhood obesitythe among American complex system encompassing food,Latin school and populations can be conceptualized as the result of a transport systems, sociocultural and environmental complex system encompassing the food, school and influences, and numerous other interacting factors, transport systems, sociocultural and another paper in the series stated.

Yetenvironmental it is known that influences, and numerous other interacting factors, complex systems tend to settle in stable states and resist another paper in the series stated. Yet it is known that 8 complex systems tend to settle in stable states and resist

Better tools are needed to measure factors such as physical activity to aid Better tools are needed to measure factors such as physical activity to aid efforts to reduce childhood obesity. efforts to reduce childhood obesity.

disruptions that push them towards a new regime. disruptions that push them towards a new regime.

Efforts to reconfigure the system tend to trigger a Efforts to reconfigure the system tend to trigger a response against the intervention itself, often resulting in response against the intervention itself, often resulting in resistance to change and so resistance to new policies. resistance to change and so resistance to new policies.

Childhood obesity prevention efforts that need to operate Childhood obesity prevention efforts thatattain need better to operate within complex adaptive systems would within complex adaptive systems would attain better results though some application of systems science results though some application of systems science theory and methods.

The study authors proposed an theory and methods.

The study authors proposed action-oriented framework, essentially a roadmap,an which action-oriented framework, essentially roadmap, which incorporates systems science methods a for designing, incorporates systems science forchanges designing, implementing, evaluating andmethods sustaining to implementing, evaluating prevent childhood obesity.and Thesustaining frameworkchanges consiststoof six steps: foster multisectoral map the system, prevent childhood obesity. Theteam; framework consists of its context, and drivers; envision system-wide changes; six steps: foster multisectoral team; map the system, effect system-wide changes; monitor, learn, and adapt; its context, and drivers; envision system-wide changes; and scale and sustain.

The authors that new effect system-wide changes; monitor,suggested learn, and adapt; ways of working based on would a and scale and sustain.

Thesystems authorsthinking suggested thatbe new much more sustainable model of addressing childhood ways of working based on systems thinking would be a obesity thansustainable traditional siloed much more model models. of addressing childhood

Photo PhotobybyDavid David Snyder Snyder forfor Fogarty Fogarty

Nutrition Nutrition and and obesity obesity have have been been the the topics topics of of substantial substantial work across across the work the Americas, Americas, and and Latin Latin American American countries countries have carried out a variety of health surveys concerning diet, physical activity and other factors influencing childhood obesity. The explosion of mobile health applications and devices holds promise for improving individual and population-level accuracy in the physical activity area area and and may may even even be be applied applied to to other other health health activity behaviors, including including diet. diet. However, However, information information about about the the behaviors, surveillance surveillance systems systems of of specific specific countries countries can can be be difficult difficult to to access access and and is is not not always always readily readily available. available. In In addition, addition, some of these mobile tools are expensive, may some of these mobile tools are expensive, may be be less less acceptable for certain subgroups and often require acceptable for certain subgroups and often require significant training. significant training.

obesity than traditional siloed models.

Growing evidence and interest support applications of this type of systems-based, action-oriented framework Growing evidence and interest support applications of to reduce childhood obesity given the limited progress this type of systems-based, action-oriented framework that has been achieved, the authors noted. Crossto reduce childhood obesity given the limited progress sectoral and cross-disciplinary collaborations, training that has been achieved, the authors noted. Crossopportunities, a research culture open to embracing sectoral cross-disciplinary collaborations, systems and science and funding mechanisms thattraining support opportunities, a research culture open to embracing the application of the framework are needed to advance systems science and to funding mechanisms that in support public health efforts stem the rise in obesity US the application of the framework are needed to advance Latinx and Latin American populations and promote public health health equity. efforts to stem the rise in obesity in US Latinx and Latin American populations and promote health equity.

8 139

Research capacity building

should be tracked systematically and periodically across the region, the authors concluded. The complex, multicausal nature of childhood obesity urgently demands multidisciplinary, systems-oriented approaches for childhood obesity prevention. Finally, new cross-national childhood obesity research initiatives should begin to focus more on intervention, policy and implementation science.

Implementation science To understand the potential barriers and facilitators of implementing childhood obesity prevention and control policies and programs, the authors of another study examined various case studies on childhood obesity interventions implemented in different countries using the RE-AIM framework. One case study looked at front-ofpack warning labels in Mexico and Chile. A second focused on Ciclovías, or “open streets,” in Colombia and the Play Streets program in San Francisco, both of which close streets to cars and other vehicles. The third explored the Baby-Friendly Hospital Initiative (BFHI), which promotes among other things early breastfeeding, in Brazil and the U.S. Photo by David Snyder for Fogarty

Latin American countries and the U.S. could greatly benefit from developing a cohesive, unified childhood obesity research agenda that prioritizes multi-directional capacity building as a key pillar, suggested authors of a study devoted to the topic. For Latin American countries, this offers the potential to access otherwise limited funding and to learn from and work with leading U.S. experts. Early-career researchers could not only gain skills and technical expertise, but also expand their networks and increase opportunities to co-author scientific manuscripts stemming from these large international studies. By improving research capacity, locally relevant evidence would become available to guide effective policy action in Latin American countries, while in the U.S., this type of research would provide useful insights for understanding and resolving the childhood obesity epidemic among U.S. Latino populations.

In Latin America, Brazil, Mexico and Chile continue to be the leading producers of childhood obesity-related publications, and are, with Colombia, the countries most engaged with cross-national collaborations, according to the study. Its authors identified 612 childhood Across the case studies the obesity-related articles eligible Some Latin American countries have levied taxes on sugary beverages authors found that evidencefor analysis: 505 from Latin as a means of lowering child obesity. based advocacy, political will and America and the remainder evidence of scalability and impact are key to successful from U.S., excepting 17 north-south collaborations. launch and implementation of policies and programs.

The numbers of published articles focusing on either They also concluded that individual countries benefit by obesity, nutrition or physical activity are similar in north examining the practices in other nations. For instance, and south, yet complementary research areas—such as Mexico could learn from regulations enforced in Chile to sedentary behavior, systems science and policy studies— protect minors against the marketing of unhealthy foods are uncommon in Latin America. Added to that, sleep and beverages, while Chile and other countries could gain research is nascent despite the WHO now including from the experiences of two Mexican states that banned the sleep recommendations as part of its movement behavior sale to minors of products with non-nutritive sweeteners. guidelines for children.

Publications are only one component of research capacity, the authors noted. Physical activity researchers were less likely than obesity- or nutrition-centered researchers to be included in childhood obesity research teams, and have fewer funding opportunities, highquality graduate programs and networking opportunities.

Most researchers reported higher availability for nutrition-only research funding in Latin American countries, while international training was not accessible for most students seeking advanced degrees.

Given the importance of capacity building, progress

Still, context matters when implementing policies and programs. Successful interventions have necessarily followed different pathways of adoption in different countries. Implementation science makes an important contribution to the production of transferable lessons across Latin America and the U.S. and should be used for research and evaluation during policy and program development and application, the authors concluded.

Future analysis is needed to understand the value of different implementation science systems frameworks that can inform policy decision-making, context fit, equitable impact and cost-effectiveness.

9 140 Delaware Journal of Public Health - September 2021

OPINION

By Dr. Roger I. Glass, Director, Fogarty International Center

Research vital to inform humanitarian crises response With tens of thousands of refugees fleeing Afghanistan, earthquake survivors struggling to survive in Haiti and terrible wildfires burning across Greece, we are reminded that humanitarian crises touch us all and can cause severe health consequences. For example, forced migration can result in malnutrition, flooding can lead to polluted water that causes infections and illness, and smoke from fires can exacerbate asthma and other lung conditions.

UN Photo/Luke Powell

As the number of people experiencing humanitarian crises continues to climb worldwide, Fogarty’s Center for Global Health Studies has been leading an effort to examine how research can be done in the midst of these emergencies to improve response effectiveness.

Although each disaster may involve different health factors, they share many common characteristics that make research difficult.

Recently, the humanitarian project team commissioned and published a collection of case studies to highlight scientific studies conducted in the context of crises—such as armed conflicts, natural disasters, forced displacement and disease outbreaks. Unlike traditional research papers, the project examples go beyond what research was conducted to explain why the research was important and how it was conducted in these extremely challenging settings. The papers also identify scientific areas of high public health significance that can best be addressed through research during these events.

Together with our partners from across NIH, NGOs and academia, we are exploring how we can further support this critical type of research. We presented highlights of the article collection during a recent Fogarty advisory board meeting, where it sparked a robust discussion. We were encouraged to consider the mental health aspects of crises, as it is most often the case that people who are already vulnerable are the ones who suffer the most. It was also suggested that we help address the communication challenges that can arise due to power and cell service disruptions during disasters. It was noted that researchers

10

must proceed with care during crises and consider forming partnerships with organizations that have built up community trust and best understand local needs. Finally, we observed that investigators must remain cognizant of the purpose of their research and who it is intended to benefit.

Governments require not only evidence but real-time, realworld applications that can immediately reduce suffering and save lives.

The group also agreed that research in humanitarian crises taps into two key areas where Fogarty has substantial expertise—ethics and implementation science. Conducting research in this context poses unique ethical issues making it important to recognize the power differential that exists between scientists and vulnerable populations.

Also, there may be greater than normal potential for risk of suicide, physical or sexual abuse, or other harm. Researchers must anticipate and plan how to respond to these risks before their studies begin. They might establish community advisory boards to better understand cultural norms and gain input to help them shape the studies. Informed consent is another complex issue that requires careful consideration when working with vulnerable populations.

Researchers must also consider how they will deal with requests for medical or other assistance that may come during data collection.

Of course, once best practices have been developed, they must be adapted to suit the individual circumstances, local culture and available resources. We call this implementation science (IS), or the study of methods to promote the adoption of evidence-based practices, interventions and policies. Fogarty has been building research capacity and the knowledge base for IS for decades now so brings substantial expertise to this effort.

The next step under this initiative is a networking and mentorship forum that will be held in November 2021 to help build a cadre of researchers capable of tackling these difficult issues. That’s never been more relevant, as the humanitarian crises we face are becoming more common, complex and interrelated.

RESOURCES https://bit.ly/HumanCrises 141

PEOPLE Geneticist Lander named White House science advisor Dr. Eric Lander has been confirmed as the new head of the White House Office of Science and Technology Policy, which has been elevated to a cabinet-level position. A geneticist, Lander was most recently the president of the Broad Institute of MIT and Harvard.

Mathematician and hydrologist Kabat to lead HFSP The international Human Frontier Science Program Organization has announced Prof. Pavel Kabat as its new Secretary-General.

Previously, Kabat was research chief of the U.N.’s World Meteorological Organization and head of the International Institute for Applied Systems Analysis in Austria. He remains professor of global water and climate systems at Wageningen University.

Nicole Lurie to direct CEPI’s US activities The Coalition for Epidemic Preparedness Innovations (CEPI)—a foundation focused on vaccines—has appointed Dr. Nicole Lurie as its new U.S. director. Since 2017, she has led CEPI’s emergency response efforts, including for COVID-19. Lurie previously served as HHS Assistant Secretary for Preparedness and Response.

Abdool Karim to advise UN on technology Dr. Quarraisha Abdool Karim of the Centre for the Aids Programme of Research (CAPRISA) in South Africa is among 10 eminent scientists selected to advise the UN on unleashing the power of technology for development. A longtime Fogarty grantee, Abdool Karim holds positions at Columbia University and the University of KwaZulu-Natal.

Global health advocate Tachi Yamada dies suddenly Dr. Tadataka “Tachi” Yamada, former president of global health at the Bill and Melinda Gates Foundation, has died. Following an early career as a physician-scientist and professor at UCLA and the University of Michigan, Yamada was chairman of Research and Development at GlaxoSmithKline, and chief medical and scientific officer at Takeda Pharmaceuticals.

Former MEPI principal investigator Olayeye has died Renowned Nigerian virologist Dr. David Olaleye has died. As a principal investigator at the University of Ibadan, he helped establish the Medical Education Partnership Program, which was managed by Fogarty. In addition, he was a member of the PI Council of AFREhealth and adjunct professor at Northwestern University in Chicago.

Vivian Pinn receives distinguished service award Fogarty Senior Scientist emerita Dr. Vivian Pinn has been honored by the Association of Pathology Chairs with its 2021 Distinguished Service Award, in recognition of a lifetime of achievement. Pinn was the first African American woman to chair an academic pathology department in the U.S., at Howard University.

142 Delaware Journal of Public Health - September 2021

Global HEALTH Briefs NIH unveils its 2021-2025 strategic plan

The NIH’s new five-year strategic plan includes an emphasis on minority health and health disparities, research across the lifespan and data science. The plan also supports continuing and strengthening global partnerships such as the Health-Professional Education Partnership Initiative, AFREHealth and the Global Alliance for Chronic Diseases.

Website: https://bit.ly/2UXJZBq

Comments requested on women’s health In preparation for an upcoming conference on women’s health, the NIH is inviting comments to assist in identifying related research gaps and pitfalls in clinical practices. Input will be used to inform discussion and help shape the direction and scope of the meeting. The deadline is Sept.

15, 2021.

Website: https://bit.ly/NIH_women

UC launches new global health journal

UC Press is developing a new publication to showcase the latest research devoted to improving worldwide health outcomes, with a particular focus on studies conducted by scientists in low- and middle-income countries. The open-access, online journal, Advances in Global Health, will be edited

by Fogarty grantee Dr. Craig R. Cohen.

Website: https://online.ucpress.edu/agh

WHO suggests ethical principles for AI

Artificial Intelligence (AI) holds great promise for improving the delivery of healthcare and medicine worldwide, but only if ethics and human rights are put at the heart of its design, deployment, and use, according to new WHO guidance. The report examines the ethical and governance issues posed

by AI. Report: https://bit.ly/WHO_AI

Vaping is growing threat, WHO says

A new WHO tobacco control report finds that many countries are making progress in the fight against tobacco but e-cigarettes and related products pose an emerging health threat. The study estimates there are about 1 billion smokers globally, around 80% of whom live in low- and middle-income countries. Tobacco is responsible for the death of 8 million people a year, including 1 million from second-hand smoke.

News release: https://bit.ly/WHO_tobac

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JULY/AUGUST 2021

Funding Opportunity Announcement

Deadline

Details

Global Infectious Disease (GID) Research Training D71 Clinical Trials Not Allowed

Oct 28, 2021

http://bit.ly/IDtraining

Mobile Health: Technology and Outcomes in Low and Middle Income Countries R21 Clinical Trials Optional R33 Clinical Trials Optional

Nov 15, 2021

https://bit.ly/NIH_mHealth

Ecology and Evolution of Infectious Diseases (EEID)

Nov 17, 2021

http://bit.ly/EEIDNIH

HIV-associated Noncommunicable Diseases Research at LMIC Institutions

Dec 8, 2021

https://bit.ly/FogartyHIVNCD

International Research Scientist Development Award K01 Independent Clinical Trials Required K01 Independent Clinical Trials Not Allowed

Mar 9, 2022

https://bit.ly/IRSDAK01

For more information, visit www.fic.nih.gov/funding

Global Health Matters July/August 2021

NIH Director’s Blog Zooming in on global health research

Volume 20, No. 4 ISSN: 1938-5935 Fogarty International Center National Institutes of Health Department of Health and Human Services Managing editor: Ann Puderbaugh Ann.Puderbaugh@nih.gov Writer/editor: Mariah Felipe Mariah.Felipe@nih.gov Writer/editor: Susan Scutti Susan.Scutti@nih.gov Designer: Carla Conway

All text produced in Global Health Matters is in the public domain and may be reprinted. Please credit Fogarty International Center. Images must be cleared for use with the individual source, as indicated.

SUBSCRIBE: www.fic.nih.gov/subscribe

In past years, Roger Glass (top left), director of NIH’s Fogarty International Center (FIC), and I have taken an in-person group photo with the FIC fellows and scholars. This year, due to the international health and travel challenges posed by the global COVID-19 pandemic, a Zoom composite of some of the young researchers will have to do! I spoke to the group on the morning of July 13 as part of FIC’s week-long Global Health Program for Fellows and Scholars. The program provides collaborative, mentored global health research training in low- and middle-income countries. Individual students, postdoctoral fellows, or faculty from the U.S. and abroad apply for a 12-month placement at a participating global institution. The meeting has brought together 122 fellows and scholars (U.S. and international), seven Fulbright Fogarty Fellows, 16 alumni, and many others to the event.

As you can see in my photo, I had to be out of town this year, and I spoke to everyone buckled up while returning to the Washington, D.C. area. But I didn’t want to miss this opportunity to share my vision for global health research and point to some of the many opportunities available in global health for young academics from the U.S. and other nations.

Originally posted July 13, 2021 on https://directorsblog.nih.gov 143

Estate Planning to Protect Yourself and Your Assets in the Event of Incapacity as a Result of Dementia Jennifer Smith, J.D., LL.M and Jeremy Riley, J.D., LL.M. McCollom D’Emilio Smith Uebler LLC

INTRODUCTION People with dementia can be vulnerable as a result of their diminished capacity and therefore are more susceptible to becoming victims of unscrupulous predators. Because of their diminished capacity and inability to communicate effectively, people with dementia also may be neglected and not receive adequate care to meet their needs. For these reasons, our society should, and does, offer the ability of people that have, or will have, diminished capacity to control decisions with respect to their health and property after they are no longer able to make those decisions for themselves.

This article addresses some of the tools available under Delaware law that can be used by people to plan ahead for incapacity and safeguard their property and control their decisions and wishes with respect to health care and end-oflife situations. Some of those tools include a durable personal power of attorney, an advance health-care directive, a Delaware Medical Orders for Scope of Treatment form, and Last Will and Testaments and revocable trusts. This article also addresses the legal standards applied in determining whether and when a person has capacity to create these instruments and/or when such instruments become effective.

PLANNING TECHNIQUES Durable Personal Power of Attorney

A critical document that an individual must execute prior to becoming incapacitated is a durable personal power of attorney (“DPOA”). The DPOA allows a person, as the principal, to select an agent or agents to manage his or her property and financial affairs during the principal’s lifetime. In Delaware, DPOAs are governed by Title 12, Chapter 49A of the Delaware Code.

The DPOA can become effective immediately so that the agent can act on the principal’s behalf upon execution of the document, or the DPOA can become effective only at a future date or upon the occurrence of a future event or contingency (e.g., incapacity) specified in the DPOA.1 For purposes of the DPOA, “incapacity” is defined in 12 Del. C. § 49A-102(6) as the “inability of an individual to manage his or her property or business affairs.”2 The statute allows the principal to authorize one or more persons to determine in a writing or other record that the event or contingency has occurred.3 It is not necessary for a physician to be designated the authorized person and, therefore, a person without a medical background can determine whether the principal is incapacitated for the DPOA to become effective. The statute does provide, however, that if a DPOA becomes effective upon the principal’s incapacity and the principal has not authorized a person to determine whether the principal is incapacitated 144 Delaware Journal of Public Health - September 2021

(or the authorized person is unable or unwilling to act), the DPOA becomes effective upon a determination in a writing or other record by a physician or by the Court of Chancery or other court of competent jurisdiction that the principal is incapacitated.4 Needless to say, involving the Court would cause significant delays, so if the DPOA is drafted to become effective only upon the principal’s incapacity, a mechanism for making this determination should be clearly set forth in the DPOA. Similarly, to avoid uncertainty, the principal should specify in the DPOA whether the agent’s authority will continue or terminate if the principal regains capacity. Pursuant to 12 Del. C. § 49A-110(c), unless the DPOA provides otherwise, an agent’s authority is exercisable until the authority is terminated by, among other ways, revocation by the principal or termination of the DPOA.5 The DPOA may be terminated if, among other things, the principal revokes the DPOA and provides notice of the revocation to the agent, a terminating event set forth in the DPOA occurs, or the purpose of the DPOA is accomplished.6 If the DPOA is effective immediately upon execution, the principal and the agent each have the ability to manage the principal’s property and financial affairs as long as he or she is not incapacitated or the agent’s power is not revoked. However, if the power of attorney does not contain language indicating that it is durable (meaning that it becomes or remains effective during the principal’s incapacitation) or otherwise comply with the other statutory requirements, the agent’s authority to act under the power of attorney will terminate upon the principal’s incapacitation, potentially leaving the principal’s property and financial matters in disarray and subject to adverse consequences.7 In this situation, as discussed further below, an interested person may petition the Delaware Court of Chancery to appoint a guardian of the principal’s property, who may not be the person the principal otherwise would have appointed, and will result in annual court filings and costs.

In a DPOA, the principal can grant the agent broad powers including, but not limited to, the ability to execute contracts, transfer assets, access communications, and initiate litigation on behalf of the principal with respect to the principal’s real property, tangible personal property, stocks, bank accounts, business entities owned by the principal, estates, trusts, taxes, and gifts.8 The principal can also limit the DPOA to a specific power, such as selling a particular parcel of real property.9 The DPOA, however, does not grant the agent authority to make health care decisions on the principal’s behalf, as that authority is granted only under an advance health-care directive.

Because the DPOA grants the principal’s agent with significant power to manage the principal’s property, the person who the principal appoints should be someone the principal trusts and doi: 10.32481/djph.2021.09.017

and knows well. The principal should discuss the DPOA with the selected agent, preferably prior to executing the DPOA, to ensure that the agent understands his or her role and is willing to act on the principal’s behalf. If and when the agent acts on the principal’s behalf, the agent will be required to execute a certification appended to the DPOA, certifying, among other things, that the agent will act in good faith and within the scope of the powers granted under the DPOA.10

Advance Health-Care Directive and Health-Care Surrogates An advance health-care directive (“AHCD”) allows a person, as the “declarant”, to accomplish two important tasks: (1) to provide instructions or directions concerning the declarant’s health care decisions, including whether to provide or withhold artificial nutrition and hydration when the declarant has a “qualifying condition” (as defined in 16 Del. C. § 2501(r)) in certain end-of-life situations; and (2) to provide a power of attorney for health care by designating an agent to make health care decisions on behalf of the declarant.11 Title 16, Chapter 25 of the Delaware Code governs AHCDs in Delaware. In contrast to the DPOA, the declarant’s instructions and agent’s authority under the AHCD only become effective upon the declarant’s incapacitation and not before.12 However, if a declarant regains capacity, the power to make medical decisions reverts to the declarant.13 The questions, then, are when does a person have capacity and who makes that determination? “Capacity” is defined in 16 Del. C. § 2501(d) as “an individual’s ability to understand the significant benefits, risks and alternatives to proposed health care and to make and communicate a health-care decision.”14 Thus, if a person’s dementia affects his or her ability to understand and communicate about health care options and decisions, the agent under the AHCD will have power to act, subject to any instructions provided by the declarant in the AHCD. Pursuant to 16 Del. C. § 2503(e), the determination of whether an individual lacks or has recovered capacity must be made by the primary physician or other physician(s) as specified in the AHCD, provided, however, that an AHCD may include a provision accommodating an individual’s religious or moral beliefs by designating a person other than a physician to certify in a notarized document that the individual lacks or has recovered capacity.15 An AHCD may provide instructions, or allow an agent to make decisions, regarding any health care decision that the declarant could make if he or she were not incapacitated.16 For example, the AHCD could cover heath care decisions regarding: (i) the selection and discharge of healthcare providers and institutions; (ii) the acceptance or refusal of diagnostic tests, surgical procedures, programs of medication and orders not to resuscitate; and (iii) directions to provide, withhold, or withdraw artificial nutrition and hydration and all other forms of health care.17 However, provisions directing or authorizing the use or refusal of medical care that are contrary to public health laws are unenforceable.18 Like the DPOA, it is important for the declarant to discuss his or her wishes regarding heath care treatment with the selected agent and to select an agent who he or she trusts will follow the declarant’s wishes and instructions, if not otherwise stated in the AHCD.

In the absence of an instruction or agent under an AHCD or an appointed guardian, a “surrogate” may be appointed to “make a health-care decision to treat, withdraw or withhold treatment for an adult patient if the patient has been determined by the attending physician to lack capacity.”19 Section 2507 of Title 16 of the Delaware Code provides an ordering rule to determine who may act as the patient’s surrogate. First, any individual designated by a mentally competent patient to act as a surrogate by personally informing the supervising healthcare provider in the presence of a witness, who may not be the designated surrogate.20 Second, in the absence of a designation or if the designee is not reasonably available, any member of the following classes of the patient’s family who is reasonably available, in the descending order of priority, may act as a surrogate: (a) the spouse, unless a petition for divorce has been filed; (b) an adult child; (c) a parent; (d) an adult sibling; (e) an adult grandchild; (f) an adult niece or nephew; and (g) an adult aunt or uncle.21

Delaware Medical Orders for Scope of Treatment Another document through which persons can express their desires and control decisions about their own health care if and when they become incapacitated is a Delaware Medical Orders for Scope of Treatment (“DMOST”) form published by the Delaware Department of Health and Social Services pursuant to the DMOST Act, 16 Del. C. § 2501A, et seq.

The DMOST form contains medical orders that are intended to travel with the patient and pertain to the patient’s goals for care regarding the use of life-sustaining medical interventions when the patient is incapacitated and living with a serious illness or frailty, such that the patient’s health-care practitioner would not be surprised if the patient died within the next year.22 The DMOST form is separate from an AHCD and, unlike an AHCD, it must be signed by a health-care practitioner after discussion with the patient or the patient’s authorized representative regarding the DMOST form and its implications.23 According to the statute, the reason for the DMOST and the DMOST form is because “[d]ata reveal[s] that many individuals may reside or be situated in multiple locations such as home, acute care, and post-acute care settings near the end of life,” and that “[c]hanges in such settings require that an easily understood, standardized, portable document be available to communicate the individual’s care preferences.”24 The DMOST form is intended to accompany the patient, and to be honored by all personnel attending the patient in all health-care settings, including the patient’s home, a health-care institution, at the scene of a medical emergency, or during transport.25

Guardians of the Person and Property If no agent has been appointed under a DPOA and/or AHCD, or an agent or surrogate is unavailable, it may be necessary for an interested person to file a petition in the Delaware Court of Chancery for the appointment of a guardian of the person and/ or property of a disabled person.26 Pursuant to Court of Chancery Rule 175, the petition for appointment must include a lengthy list of information regarding the disabled person and it must be accompanied by, among other things, a physician’s affidavit, which must be executed by a medical or osteopathic doctor authorized to practice medicine and (i) give particulars as to the alleged disabilities, (ii) state the 145

date of the doctor’s last examination of the person with an alleged disability, and (iii) state the doctor’s opinion as to whether the person has a disability that interferes with the ability to make responsible decisions, and whether the person has sufficient mental capacity to understand the nature of guardianship in order to consent to the appointment of a guardian.27 Upon the filing of the petition, the Court will then appoint an “attorney ad litem” to represent the disabled person and to investigate the allegations of the petition, the fitness of the proposed guardian, and all other pertinent facts.28 Upon concluding the investigation, the attorney ad litem will report its findings and conclusions to the Court, including whether the wishes of the disabled person diverge from his or her best interests.29 After notice is provided to all potentially interested persons, the Court will hold a hearing to determine whether to appoint the guardian and whether to apply any restrictions on the guardianship.30 Within thirty days after appointment, the guardian is required to file a verified inventory of the disabled person’s property and, one year after appointment, the guardian must file an accounting with the Court and every two years thereafter unless ordered otherwise by the Court.31 Similar requirements are not imposed upon agents under DPOAs and AHCDs and, therefore, it is advisable to create those instruments to avoid the cumbersome, but necessary, guardianship process.

Last Will and Testaments and Revocable Trusts Regardless of your age, health, and financial situation, everyone should have an estate plan to provide for the orderly management and disposition of assets upon death. The most common estate planning tool is a Last Will and Testament, which dictates how the testator’s assets will be distributed at death and who will serve as the personal representative to administer the estate.

Another common estate planning tool in Delaware is a revocable trust. With a typical revocable trust, the trustor will retitle individually owned assets into the name of the trust and will also serve as trustee so that he or she may continue to manage and access the assets during his or her lifetime.

Revocable trusts can be great tools for incapacity planning, too, because the trust instrument creating the trust will name a successor trustee that will be appointed to serve if the trustor becomes incapacitated or dies. If a person has established a revocable trust, his or her Last Will and Testament typically will include a “pour over” provision, whereby the testator’s individually owned assets will be distributed to his or her trust upon death to be distributed in accordance with the provisions of the trust instrument.

To create a valid Last Will and Testament in Delaware, the testator must be of sound and disposing mind and memory,32 meaning that, at the time the Last Will and Testament is executed, the testator must: (i) be capable of exercising thought, reflection, and judgment; (ii) know what he or she is doing and how he or she is disposing of his or her property; and (iii) have sufficient memory and understanding to comprehend the nature and character of his or her act.33 Ideally, a Last Will and Testament and revocable trust should be created when the testator is competent and there is no concern of dementia. For various reasons, that may not always be 146 Delaware Journal of Public Health - September 2021

possible. Diminished capacity alone is not enough to invalidate a Last Will and Testament or trust, as long as the testator is deemed to have testamentary capacity in accordance with the standard set forth above.

Delaware courts have recognized that only a modest level of competence is required and “[c]ourts have long held there is a low standard for testamentary capacity.”34 For example, Delaware courts have declined to invalidate a challenged Last Will and Testament and/or trust for lack of capacity when the testator had a history of memory problems and suffered from delusions and Alzheimer’s disease35; a reduced mental capacity, a sudden change in living habits, and engaged in irrational behavior following a stroke36; and a personality change and periods of confusion in the months prior to the execution of the Last Will and Testament.37 In addition to challenges for lack of testamentary capacity, a potential beneficiary can allege that a Last Will and Testament or trust should be invalidated because the testator or trustor was unduly influenced by another person who benefitted from the alleged exertion of undue influence. To demonstrate undue influence, the challenger must demonstrate that the alleged influencer exerted “excessive or inordinate influence” on the testator or trustor so as to “subjugate his mind to the will of another, to overcome his free agency and independent volition, and to impel him to make a will that speaks the mind of another and not his own.”38 Assuming a person suffering from dementia has the requisite capacity to create a Last Will and Testament or trust, he or she is free to dispose of property as he or she wishes (subject to certain limitations regarding disinheriting a spouse).

However, if a person with diminished capacity desires to create or alter a Last Will and Testament or trust, the validity of those instruments may be more susceptible to challenges from potential beneficiaries, particularly if those beneficiaries received less than they otherwise would have received under a prior version of the Last Will and Testament or trust or under the intestacy laws, which would apply if no Last Will and Testament or trust were executed. Even if a challenge is defeated, the cost to litigate such an action can be significant and substantially diminish or completely wipe out the assets of the estate or trust.

Fortunately, Delaware law provides a couple of mechanisms to preclude challenges based on a person’s capacity.

First, Delaware permits the use of no-contest clauses in Last Will and Testaments and trusts.39 Such clauses attempt to prevent beneficiaries from initiating an action to contest the validity, or set aside or vary the terms, of a Last Will and Testament or trust.39 The no-contest provision typically provides that a potential beneficiary who unsuccessfully challenges the validity or terms of a Last Will and Testament or trust will be treated as if he or she predeceased the testator or trustor, and therefore will preclude the beneficiary (and usually his or her descendants) from taking any assets under the Last Will and Testament or trust. It should be noted, however, that the deterrent effect of a no-contest clause is negated if the testator or trustor completely disinherits a person in their Last Will and Testament or trust because the disinherited person stands to lose nothing if his or her challenge to the validity of the estate planning instruments fails.

Second, Delaware has enacted “pre-mortem validation” statutes, which provide a process whereby testators and trustors can, during their lifetime, notify potential beneficiaries (or individuals who are excluded as beneficiaries) of the existence of a Last Will and Testament or trust and require that any challenges to the validity of the Last Will and Testament or trust be brought within 120 days of receipt of the notification. The pre-mortem validation statutes that govern Last Will and Testaments and trusts are set forth in Sections 1311 and 3546 of Title 12 of the Delaware Code, respectively. If an action challenging the validity of the Last Will and Testament or trust is not initiated within the 120-day notice period, the beneficiaries that received (or were deemed to have received) the notice are generally precluded from later challenging the validity of the Last Will and Testament or trust.40 These options can be potent tools to thwart challenges to a person’s legitimate estate plan after death, and they should be given special consideration by testators and trustors that have a diminished capacity and particularly if they desire to create or amend estate planning documents to disinherit or provide for disparate distributions to similarly situated heirs.

CONCLUSION There are several tools available in Delaware to plan ahead for incapacity and allow people to control decisions with respect to their property and health care at a time when they can no longer make those decisions for themselves. Without these instruments, the disposition of a person’s property and decisions regarding health care are governed by Delaware’s default guardianship and surrogate statutes. These default options, however, may not be consistent with a person’s wishes and can be more costly and administratively burdensome. Thus, it is advisable for all Delawareans to consider their options and implement a comprehensive estate plan.

As discussed, it is prudent to execute these instruments in advance of any concerns of dementia. It is important to note, however, that experiencing some symptoms of dementia will not disqualify or prevent a person from executing valid planning documents.

The law generally recognizes that a person, even with diminished capacity, can create valid planning documents as long as they appreciate and comprehend the significance of their decisions and understand the documents they are executing. People that have experienced symptoms of dementia should especially be encouraged to seek assistance in creating their estate plan as soon as practicable to ensure that their decisions and goals with respect to their finances and health care treatment are respected.

11. See generally 16 Del. C. § 2503.

12. 16 Del. C. § 2503(c).

13. 16 Del. C. § 2503(d).

14. 16 Del. C. § 2501(d).

15. 16 Del. C. § 2503(e).

16. 16 Del. C. § 2503(a) 17. 16 Del. C. § 2501(h).

18. 16 Del. C. § 2502.

19. 16 Del. C. § 2507(a).

20. 16 Del. C. § 2507(b)(1).

21. 16 Del. C. § 2507(b)(2).

22. 16 Del. C. § 2503A(c).

23. 16 Del. C. § 2502A(d).

24. 16 Del. C. § 2502A(e).

25. 16 Del. C. § 2503A(e)(5).

26. 12 Del. C. § 3901(a) 27. Del. Ct. Ch. R. 175(a), (c)(4).

28. Del. Ct. Ch. R. 176(a).

29. Del. Ct. Ch. R. 176(a), (c).

30. Del. Ct. Ch. R. 176(e), 177.

31. 12 Del. C. §§ 3921(b), 3943.

32. 12 Del. C. § 201.

33. In re Langmeier, 466 A.2d 386, 402-03 (Del. Ch. 1983).

34. In re Purported Last Will & Testament of Wiltbank, 2005 WL 2810725, at *7 (Del. Ch. Oct. 18, 2005).

35. Matter of Kittila, 2015 WL 688868, at *11-12 (Del. Ch. Feb. 18, 2015); Sloan v. Segal, 2009 WL 1204494, at *15 (Del. Ch. Apr. 24, 2009).

36. In re Purported Last Will & Testament of Wiltbank, 2005 WL 2810725, at *7 (Del. Ch. Oct. 18, 2005).

37. In re Estate of West, 522 A.2d 1256, 1262-63 (Del. 1987).

38. In re Will of Cauffiel, 2009 WL 5247495, at *7 (Del. Ch. Dec. 31, 2009).

39. 12 Del. C. § 3329(a) 40. 12 Del. C. §§ 1311, 3546.

REFERENCES 1. 12 Del. C. § 49A-109(a).

2. 12 Del. C. § 49A-102(6).

3. 12 Del. C. § 49A-109(b) 4. 12 Del. C. § 49A-109(c).

5. 12 Del. C. § 49A-110(b), (c).

6. 12 Del. C. § 49A-110(a).

7. 12 Del. C. § 49A-104.

8. 12 Del. C. § 49A-203.

9. 12 Del. C. §§ 49A-201, 49A-204.

10. 12 Del. C. § 49A-105(c).

147

Scams and Exploitation: A Growing Hazard for Delaware’s Older Population Craig Weldon Chief Special Investigator, Investor Protection Unit, Delaware Department of Justice Jack Berlin, D.O. ChristianaCare

You wake one morning, get a cup of coffee, and sit down at your computer. You open your email and there it is: an email telling you that you purchased a brand-new iPhone and to call this number immediately if this is a mistake. You do, and it is done. You have just become a victim of a scam.

will they think?” Depending on how long the scams last, the financial losses can be devastating. Reports of suspected financial exploitation in the past three years have reveal losses ranging from a couple hundred dollars to hundreds of thousands of dollars, ruining victims’ lives.

Internet scams are flourishing in the pandemic as people are increasingly working remotely and online more frequently.

People working from home, the elderly, and those seeking companionship are easy prey for online bandits. Particularly, as the population ages and the Baby Boomer generation advances into retirement, the prevalence of dementia or cognitive impairment is increasing and providing scammers with vulnerable marks for their cons. According to a meta-analysis by the American Academy of Neurology, 6.7% of adults between the ages of 60-64 are already demonstrating mild cognitive impairment and decline greater than that of normal aging. Further to that, the incidence of dementia doubles every 10 years after the age of 60, as one in seven adults over the age of 70 has dementia and over 25% of adults over the age of 80 have at least mild cognitive impairment.

Several types of scams have become particularly prevalent during the pandemic:

All of this presents scammers with fertile ground to plant their scam seeds. Speaking quickly and fluidly, the scammers will especially prey on the elderly, seizing upon both seniors’ unfamiliarity with the internet as well as any cognitive decline. Fraudsters will utilize the complexity of computers and cell phones to disorient and confuse their victims, often leading to panic and eventual surrender of personal and financial information.

According to the FBI, there were a reported 18,077 cases of larceny in Delaware in 2019 alone. Of those cases 1,183 were victims over the age of 60. The report does not break down elder fraud, but the FBI does report that of those 18,077 crimes, 301 of them involved confidence, swindle, and false pretense. Likely, that is a conservative estimate with the actual number of scams being much higher.

Further to that, those seeking companionship increasingly turn to websites to meet each other. These websites offer little to no protection for users’ personal information and make it extremely easy for scammers to mask their true identity.

Scammers frequently validate their fraudulent profiles by impersonating people whose identities are easily verified with basic internet searches. The scammers typically try to move from the website to a direct form of communication, be it text message or personal email, as quickly as possible.

Even after a scam is identified, reporting can be an obstacle.

Embarrassment is often an overwhelming emotion for victims once they realize they have been scammed. Too often the question of “Who can help me?” takes a back seat to “What 148 Delaware Journal of Public Health - September 2021

ROMANCE/RELATIONSHIP SCAMS These are among the most elaborate and manipulative scams we see. The scam begins when an unsuspecting victim creates a profile on any one of the many websites dedicated to connecting people (e.g., OurTime.com, Match.com, ChristianMingle.com, etc.). In most instances the scammer has also created a profile, which is completely fake but may be based on a real person they have researched on the internet.

The scammer then searches and will try to make connections with specific “matches.”

Scammers look at this like fishing: throw as many lines into the water as you can and something will bite. Once a connection is made, the scammer quickly moves the communication away from the online site and to a more oneon-one setting. He will want to solidify the connection and will be very responsive to any communication they receive.

After several days of communication, the scammer will invent a situation where they urgently need help due to unforeseen circumstances – often, he tells the victim that he is overseas and does not have access to funds needed to rectify an emergency like an arrest or a lost passport. These stories can be elaborate and may seem farfetched to an outside observer, but they are completely believable to a victim who has become invested in the person he thinks he is speaking to.

The scammer will ask to have the funds sent to a local “friend” who can deliver it to them or in the form of gift cards.

Alternatively, he may ask the connection to open an account at an international bank. Each time he successfully takes money from the victim, the scammer becomes more invested – knowing that his scam works, the scammer becomes focused on how to take as much as they can before the victim either runs out of money or discovers the truth. Even when the scammer feels like he may be losing the connection, he will attempt to guarantee payment as much as possible. The scammer will only stop when he feels he cannot extract any more from the victim – or when a law enforcement agency gets involved. doi: 10.32481/djph.2021.09.018

LOTTERY SCAMS These scams begin when an email or text message alerts the recipient that he is the winner of a lottery or sweepstakes.

All the “winner” must do is contact the sender, and all details will be revealed. Once that happens, the scammer will usually inform the victim that he needs to pay taxes on the winnings before any funds can be released. As in other scams, the scammer will speak quickly to confound or confuse his victim.

He will tell of grand presentations and promise gifts when the winnings are presented. If the victim appears at all skeptical, the scammer will convey urgency (i.e., by claiming that the victim will pay higher and higher fees the longer they wait).

PACKAGE SCAMS These scams tell the recipient that a recent purchase is in transit and instructs them to click on a hyperlink to track the delivery. In reality, the link gives the scammer access to the victim’s computer or cell phone (e.g., by downloading malware). Once the scammer has breached the victim’s device, he will attempt to steal sensitive data including usernames and passwords.

GRANDPARENT SCAMS Notably on the rise recently, these scams occur when a caller identifies himself as a relative, usually calling a grandparent and telling them they were away and needed funds immediately. The reason given for the immediate need for funds include car accidents, arrests for questionable crimes, or owing a bill.

The easiest way to avoid any of these nightmares is to remember the tried-and-true adage: if something sounds too good to be true, it probably is. Still if you do find yourself lured into a trap, time is of the essence. The sooner you can get out of it, the better off you are. Talking to a trusted friend, relative or authority may shed the light you need to see the whole picture. I also recommend a basic internet search to verify facts, independently contact the companies that scammers claim to represent, and learn whether other people have been scammed by similar calls.

Several agencies and websites offer excellent resources that explain these crimes and offer tips, including: www.FBI.gov www.StopFraud.gov www.IC3.org www.ftc.gov de.gov/consumer I have spoken with several victims who have gone as far as changing their phone numbers, canceling phone contracts, and placing call blocks on their systems. Nonetheless, in my experience, once you are victimized, scammers will continue contacting you despite any drastic measures taken. I had a case in the Newark area where the scammers sent a pizza to the house with a note asking the homeowner to call them.

This particular scam hits very close to home for me: one day in my office at the Department of Justice, a coworker received a cell phone call that his son was in trouble and needed money right away. This coworker became so upset that he panicked and unfortunately began to fall prey to the scammer. It was not until I heard his concern that I made him slow down and ask the right questions. At the same time, I called his son, who unsurprisingly was in his apartment studying. Thankfully my coworker realized what was going on and hung up the phone, however he was nearly one of the countless people who have fallen victim to these scams.

Unfortunately, scammers are increasingly sophisticated and get better each year at covering their tracks. Getting law enforcement involved early may not mean that the scammers are caught quickly – but it does give a chance to share the information with other partners and to help other people avoid becoming victims. The IC3 (Internet Crimes Complaint Center) acts as the FBI’s clearinghouse for scam cases; all of the data shared in IC3 gets reviewed by investigators, who can analyze the information about each case and establish patterns and connections that allow federal and state law enforcement to stop these crimes from reoccurring. These connections help agents across the U.S. – and across the world – compile similar data to build much larger cases. As one example, a Delaware victim of a romance scam in Delaware reported what happened to her and was ultimately able to testify at a sentencing hearing for her scammer in the State of New York.

I am not singling out this coworker to pick on him – he is not a gullible or stupid person. As a DOJ employee, he knows much of the information I am sharing here. But he is also a father, and parents will understand that love for our children overrides every other thought in our minds. I share his experience because it underscores how these scams prey on our emotions and cause us, even the most vigilant, to suspend rational thought, become careless, and make bad decisions.

Keeping up with scammers is full-time work. They craft their scams to adapt to a changing world, and when opportunities appear they pivot and create new scams. It can be tempting to succumb to shame if you become a victim, but there is nothing to be ashamed of – by sharing your stories and communicating openly about them, you help us all benefit and prevent others from becoming victims. Stay diligent and work with all our partners in slowing the financial abuse of our elder population.

So now you know the scams and why they succeed. What do you do if you become a victim? How do you get out of a bad situation?

149

An Interview with Dr. Patricia Curtin James Ellison, M.D., M.P.H. Geriatric Psychiatrist; Swank Foundation Endowed Chair, Memory Care and Geriatrics; Editor in Chief, Journal of Geriatric Psychiatry and Neurology

James Ellison: Dr. Curtin, I am pleased that you are going to share with us some thoughts about your work as a geriatrician who treats people with dementia. Can you start by saying a little about yourself?

Dr. Patricia Curtin: Yes, I’m Patricia Curtin, the Section Chief of Geriatric Medicine at ChristianaCare.

I am the medical director of two ACE inpatient units in ChristianaCare. ACE stands for Acute Care of the Elderly.

One of these is on the Wilmington campus, the other is on the Newark campus. I am also Medical Director of Stonegates Retirement Community and Health Care Center. Finally, I am a board-certified internist and geriatrician who has been in the field of medicine for about 40 years, focusing on geriatrics for the past 22 years.

JE: You’ve chosen to focus your efforts on the care of older adults, whom many primary care or neurology or palliative care clinicians see in their practices. What is the difference between those providers and a geriatrician?

PC: Great question. Geriatricians usually go through either a family medicine or an internal medicine residency and then acquire additional training during a geriatric fellowship which can take an additional one to three years. Sometimes the final year is devoted to research. I did an internal medicine residency, including a chief resident year and then worked for seven years with the internal medicine faculty at the Medical Center of Delaware, now ChristianaCare. Our medical and nursing leadership saw the increasing numbers of older patients in our health system and felt the need to increase our expertise in the care of the older adult and their special needs. I went back to do a fellowship in geriatrics, which was the best decision I ever made.

JE: Why do you consider it such a good decision?

PC: Well, the way I did it, with seven years of general internal medicine experience, I was then able to focus on what is unique to older patients. I had wonderful mentors at Jefferson, where I attended medical school and my fellowship, and they taught me about the geriatric syndromes and the disorders that affect older adults, like dementia, delirium, falls, pressure ulcers, frailty, and medication issues such as polypharmacy.

JE: How did the fellowship training help you to focus on these conditions?

PC: I think I became more confident in my skills and knowledge in this area. To this day, I remember how I admired the geriatricians from whom I was learning. Even though we were practically the same age, many of them had more experience with older patients and they taught me to be more confident in adding or discontinuing medications and in looking at the patient through the lens of a geriatrician.

We know much more about the 40- to 60-year-old patients 150 Delaware Journal of Public Health - September 2021

because they have been studied more (especially in terms of medications, for example) – but the 85-year-old patient requires a different type of clinical judgment and decisionmaking. Whether it is about falls or frailty, confusion, or medications, we need to consider the effects of age when evaluating treatment goals and plans. Fellowship helped me learn quickly to be able to focus on how age affected the patients’ conditions and their care. In the past 22 years, I have continued my learning, of course, by reading the literature, attending conferences, being part of geriatric focused organizations, and working with other geriatricians, other colleagues and nursing. I am still learning every day; I’m humbled by what I’ve learned about how older adults are, and they are very different from younger patients. I also learn a lot from our older patients!

JE: You’ve mentioned some of the diseases that are different in the older population. What about different vulnerabilities?

Are there particular areas where the treatment must be tailored to the vulnerabilities of older adults?

PC: Yes, our older adults are more prone to potential complications such as side effects from medications or treatments, or even from tests. Even a CAT scan with contrast can be damaging to some older patients with renal compromise, where perhaps a 45-year-old might be unharmed. With respect to medications, for example for diabetes or arthritis, the medication options for those diagnoses in a younger patient might be potentially harmful for an older adult. We assess risks and benefits in a different way with older patients. Even though we try to base our treatment decisions on evidence, there are not as many studies for older adults. Even though some older adults may not look their age, their kidneys, livers, brains and hearts are the organs of an older person. We must really keep that in mind. There are changes as we age, and we must take that into account.

JE: Your perspective and the care you take with the treatment of older adults has made you a leader in Delaware. Can you say something about the ACE units that take care of our older adults at ChristianaCare’s Wilmington and Christiana hospitals and how they protect the special needs of the older adults?

PC: Back in 2001, we started out with a more global approach to improving the care of the older patients in our health system. We called it the WISH program (We Improve Senior Health), which still exists today. Partnering with our nursing colleagues and experts, we trained health caregivers in all disciplines to care better for older adults throughout our hospitals, through an evidence-based educational program that was based on the NICHE program (Nurses Improving Care for Health System Elders) out of NYU and the John Hartford Foundation. For the first few years, our doi: 10.32481/djph.2021.09.019

approach was to develop Senior Health Resource Team members, health caregivers with increased awareness and knowledge of geriatric care needs, on various patient care units. However, after a few years, we wanted to show that we could make an even greater impact if we had all staff trained in geriatrics on one unit. We opened our first ACE unit in 2004 at Christiana Hospital, a 39-bed unit, using the concept and the name (ACE) that had been developed by the Cleveland Clinic where the first ACE unit opened in 1989.

We showed improved outcomes, not only defined by length of stay, but also reduced readmissions, fewer falls, fewer complications, less polypharmacy, and reduced costs. Due to this initial success, in 2007 we opened the second ACE unit at Wilmington Hospital. I have been the Medical Director at Christiana since 2004, and in 2014, I also became the medical director at Wilmington Hospital’s ACE unit. Between these two units, we take care of about 4000 patients a year, with the average age of the patients being 82 years old. It’s wonderful!

But we have thousands of older adults throughout our health system, so we continue to train our providers in the WISH program too. We continue to show these improved outcomes, including significant cost savings and improved patient flow.

JE: You’re spreading the geriatrician’s perspective to nongeriatric units as well.

PC: Yes, that’s important to us. We still have work to do, because we’re learning all the time about how we can do things better. We have found that if you have a lot of caregivers trained in geriatrics on a unit as Senior Health Resource team members, the care is more coordinated, and really has the focus on the older adults’ needs, even when they’re mixed in with younger patients. Because of this work, we have been recognized as a NICHE Exemplar program for many years, A more recent innovation came recently from the IHI (Institute for Healthcare Improvement). We were one of the first 100 hospitals to join this initiative, the Age Friendly Health System (AFHS) program. In this initiative, the focus is on the “Four M’s”: What Matters Most to the patient - that’s key - Mobility, Mentation, and Medications. If we focus on those M’s to identify what is important to the patient, it organizes our approach to their care, no matter where they are in our health system, inpatient, or outpatient. The Age Friendly project has provided a new framework and a renewed approach to taking care of older adults. We have also attained Exemplar status in that program.

JE: Can you say something about the geriatrician’s role in treating dementia in Delaware?

PC: Sure. Geriatricians treat many patients with dementia.

We also have been dedicated to improving the care of patients with dementia in Delaware in various ways. We are often asked to share our expertise with groups or task forces such as the State Plan for Alzheimer’s Disease. I was part of that Steering Committee as well as the Implementation committee. I was honored and thrilled to be part of those groups, where we worked with the Alzheimer’s Association and the State, as I represented ChristianaCare. At that time, President Obama had mandated that each state

develop a plan and we were able to go beyond our walls at ChristianaCare and really work with our state and community partners. I know the State Plan is discussed in detail in one of the other articles in this issue of the DJPH. We’re still seeing the benefits of the State Plan, for example, in the excellent website dedicated to dementia care, and in the growth of the Swank Center for Memory Care and Geriatric Consultation, which was developed at ChristianaCare to provide the state with an important resource for families and patients with dementia.

JE: How valuable! Now, I’ve heard you say, several times, that we can never have all the geriatricians that we need in Delaware. But geriatricians do bring a special value to a healthcare system. And I wonder what opportunities you’ve seen for Delaware’s geriatricians to influence care in additional ways that we haven’t yet discussed. Do you have any other comments about it?

PC: Yes, with the increasing aging population, there will never be enough geriatricians, in America and around the world, so we must do the best we can. I’ve mentioned the WISH clinical education program, the ACE units, and the Age Friendly Health System 4Ms initiative. All of those can provide training and experience to providers who haven’t gone through a geriatric medicine fellowship and then they become multipliers of expertise or geriatric ambassadors to help us care for older patients. In addition, we teach geriatrics to residents and students. Most residency programs require some formal geriatric training, especially in Internal Medicine and Family Medicine. It’s still important to have a core group of geriatric experts, so we’re fortunate to have several geriatricians at ChristianaCare. Each does something a little bit different, and that has really helped us expand our reach to the outpatient world, to the retirement communities and nursing homes, to memory care units, to a memory center and geriatric consultation, fall prevention programs, to the primary care practices, and then also on the inpatient side. We’re not everywhere, but there are eight or nine of us and we occupy important positions. Also, we work well with each other and we tap each other for expert consultation and collaboration. We also work with our other specialists, internists, family medicine doctors, and other colleagues – and they can reach us for consultation and advice. Even though we may not be able to see every patient ourselves, we can help our colleagues keep geriatric care principles in mind as they manage their older patients. We have also played a key role with the creation of care management guidelines and order sets with a focus on best practice for patients.

For example, we have guidelines and orders sets for a fall prevention, delirium, skin integrity, and constipation. That way, we are arming the providers with tools to improve their care of older adults.

JE: Thank you for all that you’ve done to improve the care of older adults and for spreading the perspective of geriatric medicine throughout our provider community to enhance the care of older adults in general. And thank you for sharing your perspective with us today.

151

SPOTLIGHT

Helping Mothers Have Healthy Babies Sarah Wells University of Delaware; Intern, Delaware Academy of Medicine / Delaware Public Health Association

INTRODUCTION Infant mortality is the death of a child before the age of one year.

The infant mortality rate (IMR) in a population is a defining characteristic of the health of that community. Public health officials can use IMR to determine the health of a community and create strategies to improve health. In 2020, Delaware saw about a 7.0 infant mortality rate.1 This is higher than the national average of 5.7.2 There are a variety of risk factors that contribute to infant mortality, with the most common being preterm birth, low birth weight, and the social determinants of health.

Delaware’s IMR is higher than the national average, so I chose to create a program for infant mortality. I want to find out why the infant mortality rate is so high in Delaware, why there are differences in IMR between racial groups, and where, geographically, the highest rates of IMR are within the state.

This paper will provide the background, theory, and logic model to demonstrate the need for the implementation of the Helping Mothers Have Healthy Babies program.

BACKGROUND Infant mortality is described as the death of a child before the age of one year. Understanding the infant mortality rate (IMR) is key in comprehending the overall health of a society, and looking into infant mortality can give a window into the quality of healthcare provided in a population. It can be seen as an indicator of community health status, poverty, and socioeconomic status levels in the community, and of the healthcare and medical services provided within the community.3

INFANT MORTALITY RATE The rate of infant mortality is described as number of deaths per every 1,000 live births. The utilization of IMR can be crucial in understanding which areas of the world carry increased rates of infant mortality compared to other locations. Globally, there has been a decrease in infant deaths. In 1990, the rate was 65 deaths per 1,000 live births, and in 2018 it shifted downward to 29 deaths per 1,000 live births.4 The World Health Organization (WHO) also reported that in 2018 the region with the highest risk of infant mortality was the WHO African Region, at 52 deaths per 1,000 live births.4 This is seven times as high as the WHO European Region at 7 deaths per 1,000 live births.4 Though the United States is a developed country, it ranks 33rd out of 36 in infant mortality compared to other Organization for Economic Co-operation and Development (OECD) countries.5 The United States’ IMR falls around 5.9 deaths per 1,000 live births, compared to the average rate of 3.9 deaths per 1,000 live births of the other OECD countries.5 In 2018, the US saw over 21,000 infant deaths, and this continues to be a large burden on the population. The United States rates of infant mortality vary heavily by race, with non-Hispanic Black women bearing the highest rate at 10.8 deaths per 1,000 live births.2 Rates vary by 152 Delaware Journal of Public Health - September 2021

state as well, and in 2019, New Hampshire had the lowest IMR with 3.07 per 1,000, while Louisiana carried the highest IMR at 8.07 deaths per 1,000 live births.2 Delaware, the second smallest state in the United States, has an IMR of 7.0 deaths per 1,000 live births.6 This is significantly higher than the US national average of 5.9. Along with the rest of the country, women of color in the State of Delaware face higher rates of infant mortality as opposed to their White counterparts.

The rate for non-Hispanic Black women in Delaware is 12.6 deaths per 1,000 live births, which is higher than the national average, as opposed to White women, whose rate is only 4.8 deaths per 1,000 live births.7 Although the rates of infant mortality have been slowly decreasing nationally, there has been an increase in the African American and White infant mortality disparity ratio from 2.0 in 1980 to 2.4 in 2009.3

INFANT MORTALITY Infant mortality is the death of a baby within their first year of life.

There are several causes and risk factors that contribute to infant mortality. Globally, the top five causes of infant mortality include neonatal encephalopathy, infections (especially blood infections), complications of preterm birth, lower respiratory infections, and diarrheal diseases. These causes of death vary between older and younger infants. In the United States, the most common causes of infant mortality are birth defects, preterm birth and low birth weight, sudden infant death syndrome, pregnancy complications, and accidents.

Along with the factors listed above, there are significant racial disparities for rates of infant mortality- both in Delaware and in the United States. For those who have experienced greater social and economic disadvantage, there is an increased risk for infant mortality in these individuals or communities. The lack of health equity by racial and ethnic status, due to exclusion or discrimination, is known to influence health status.3 There are health disparities within both Delaware and the United States due to the racial and ethnic identity of citizens.

EPIDEMIOLOGY The State of Delaware is the second smallest state in the United States of America and is home to 990,334 residents.8 The state is split between only three counties - New Castle, Kent, and Sussex - and includes a variety of urban and rural landscapes and a diverse racial composition. The state is composed of 68.76% White residents, followed by 22.18% Black or African American, 3.87% Asian, 2.83% two or more races, 1.92% other race, 0.39% Native American, and 0.06% Native Hawaiian or Pacific Islander. Since over 20% of its population identifies as Black or African American, the state is placed 8th in the nation for a high proportion of residents within this community.8 In 2020, Delaware saw about a 7.0 infant mortality rate.1 This rate can be broken down by age of mother and the race/ethnicity of mother. doi: 10.32481/djph.2021.09.020

Figure 1 references the different infant mortality rates by age for women in Delaware compared to the United States. The rate for mothers aged 20-24 in Delaware is at 10.9, which is higher than the national average of 7.1. This age group presented the highest prevalence of infant mortality. Mothers aged 30-34 have the lowest infant mortality rate amongst Delaware mothers at 4.7.1

CORRELATES AND DETERMINANTS Preterm Birth Preterm birth is the leading cause of death for infants. In Delaware, the preterm birth rate is 10.7%, so 107.0 babies per 1,000 live births are born before 37 weeks’ gestation.7 This is higher than the national average of 10.2%.6 Delaware has a 1.38% disparity ratio (divide rate of population A by the best rate, population B, to find out how much more likely an event is to occur in a population over another) for preterm birth, and in Delaware, non-Hispanic Black women have the highest chance of delivering prematurely at 13.1%, while the White community has only an 8.8% chance.7 The preterm birth rate is disproportionally higher for Black women, and in Delaware, the rate is 51% higher than the rate among all other women.7

Low Birth Weight

Figure 1. Infant Mortality Rate and Mother’s Ages, Delaware, and the United States, 2020

Figure 2 identifies differences in IMR by Race/Ethnicity of women in Delaware, compared to the United States. Black women in Delaware have a 12.6 IMR, and they have the highest IMR in Delaware, while White women have the lowest IMR, which is 4.8.1 In 2020, Delaware saw 358 infant deaths in New Castle County, 96 in Sussex County, and 93 in Kent County.9

Low birthweight (LBW) is another contributor to infant mortality. Babies born at less than 2,500 grams are considered to be low birth weight. Babies born with low birth weight are more likely to develop breathing problems, bleeding in the brain, patent ductus arteriosus, necrotizing enterocolitis, retinopathy of prematurity, jaundice, and infections.11 Delaware’s rate of low birth weight is 9.0%, with the national average sitting closer to 8.0%. There are variances of the rate of low-birth-weight babies between different races/ethnicities in Delaware. Asian/Pacific Islander women have the lowest rate at 5.9%, Hispanic women have a 7.0% LBW rate, White women in Delaware have a 7.3% LBW rate, and the highest rate of LBW in Delaware is in Black/ African American women at 13.6%.12

Social Determinants The social determinants of health (SDOH) refer to the “conditions in which people live, learn, work, and play.”13 The pillars of SDOH include education, healthcare access, economic stability, neighborhoods, and community- these factors help shape the prevalence of infant mortality. These determinants are more than sociodemographic risk factors and play a key role in the health of individuals and their communities.

Demographic risk factors are individual level risk factors; those linked with poor birth outcomes include “race, socioeconomic status, maternal education level, marital status, and health behaviors such as smoking, nutrition, and prenatal care utilization.”14 The social determinants can be explained in individual, interpersonal, organizational, community, and public policy levels. Looking beyond demographics and into social determinants can help close gaps in health disparities by providing targeted health intervention and prevention initiatives.

Figure 2. Infant Mortality Rate and Mother’s Race, Delaware, and the United States, 2020

In Delaware, the City of Wilmington (located in New Castle County) has the highest rates of infant mortality. The IMR in Wilmington is 14.5, compared with New Castle County at 6.6. The non-Hispanic Black community has a higher IMR than average in the City of Wilmington at 16.9, and the value for non-Hispanic White women is not recorded. In this same period, it is shown that the IMR in the non-Hispanic Black community in New Castle County is 12.8, versus 4.6 in non-Hispanic White women, which is a 178% difference.10

The interpersonal level focuses on paternal involvement in the pregnancy and intimate partner violence (IPV). IPV during pregnancy is associated with greater risk of preterm birth and low birth weight deliveries, and both are high risk factors for infant mortality.14 At the organizational level, availability of and access to medical providers and hospital facilities have proven to have the biggest impact on infant mortality. Assessing a woman’s place of residence during the time of birth is important to understand her access to care. Women in rural or impoverished neighborhoods have a lower “proportion of medical specialists, such as obstetricians and neonatologists, relative to the number 153

of births.”14 Having less access to these specialists can increase infant mortality. The level of hospital facility is also a risk for infant mortality: Neonatal Intensive Care Units (NICUs) with high-level and high-volume (level III NICU’s) have proven to have lower levels of in-hospital infant deaths.14 The community level social determinants of health focus on neighborhoods, concentrated poverty, and racial segregation as risks for infant mortality. There are geographical factors that contribute to infant mortality, and there are some areas that have more protective infrastructures than others, which can help reduce that risk. Those protective factors can also be part of the organizational level of SDOH, such as access to high level treatment centers and an abundance of medical specialists.

There is also a correlation between neighborhood/concentrated poverty and higher rates of infant mortality.14 The African American community faces the poorest birth outcomes out of all the racial/ethnic groups in the United States. This community sees the highest rate of infant mortality, LBW, and preterm birth, and there is a correlation between racial segregation and infant mortality. They are the “most segregated group in the United States, and they are overrepresented in high-poverty neighborhoods.”14 Since there is an overrepresentation of the African American community in impoverished neighborhoods, there can be worse birth outcomes amongst this group.

At the policy level, there is a perpetual trend of reinforced inequality in education, housing the economy, and criminal justice that creates an environment of discrimination against minorities.15 Pabayo, et al. conducted an ecological study to find whether structural racism increases individual odds for infant mortality among White and Black infants in the US. They used 2010 US Cohort Linked Birth and Infant Death Data Files and looked at the following indicators of structural racism- electoral, employment, and justice system. The team then compared the proportions of Blacks to Whites in these indicators and used multilevel logistic regression to assess the relationship between structural racism indicators and infant mortality. His study found that racial disparities in maternal education and incarceration were found to be a risk factor for infant mortality. The study also observed a relationship between income and increased odds for preterm births.15

Babies Born Healthy Infant mortality is both a concern for the United States and for Delaware. Preterm birth, low birth weight, and other social determinants such as race, geographical location, poverty, education levels, and employment status contribute to the high rates of infant mortality. Working on narrowing the racial disparity ratio is crucial to lowering IMR. The Babies Born Healthy Program in Montgomery County, Maryland, helps at-risk pregnant women connect with programs and resources to help them stay healthy during pregnancy.16 This may include prenatal education, depression screening, substance abuse help, domestic violence help, and environmental safety issues. They provide education on preterm labor prevention, smoking, family planning, and more.

The target population for BBH is pregnant African American 154 Delaware Journal of Public Health - September 2021

women in Montgomery County, Maryland, since they are at the highest risk for both maternal and infant mortality. This program is trying to reduce health disparities and increase positive outcomes in this community. They provide services, like a safe sleeping environment, diapers, transportation to appointments, and more, which reduces many barriers to healthy pregnancies and healthy lives once the baby is delivered.

This program is something that can be modeled in the State of Delaware with the specified at-risk population. Providing resources and services for women in the non-Hispanic Black community can help improve birth outcomes.

The creation of a program in the State of Delaware should focus on providing care to a high-risk population in a high-risk area. This program can include care in the form of providing materials to mothers in need, providing transportation to prenatal care visits, insuring mothers have access to prenatal care, and proper education for new mothers on care pre/ post-partum. In Delaware, the highest risk population is nonHispanic Black women in the City of Wilmington, (1980119809).

THE HEALTH BELIEF MODEL The Health Belief Model (HBM) was introduced in the 1950s after being developed by G.M. Hochbaum and other social psychologists. At the time, Hochbaum was working for the U.S. Public Health Service and developed this theory to explain why people did not participate in public health programs across the U.S.17 From the original theory, published in 1958, it has been expanded by Leventhal, Rosenstock, and Becker18 The HBM is a combined approach that looks at both stimulusresponse theory and cognitive theory. The HBM claims that action can be explained by affecting the person’s valuation of the action and their perception of the likelihood that this action will produce the desired results. This approach investigates how a person’s perceptions influence behaviors. The HBM associates health behaviors with demographic factors- race, income level, education, etc.- and elevates these factors’ importance when referencing personal perceptions of health behaviors.

The HBM is made of six constructs: perceived susceptibility, perceived severity, perceived benefits, and perceived barriers were in the original theory; cue to action, and self-efficacy were added as the model evolved. Perceived susceptibility is described as a person’s own perception of their risk of obtaining an illness or disease. Perceived severity refers to a person’s feelings on the seriousness of contracting a disease or illness.

Perceived benefits are a person’s perception of the efficacy of different treatments available to reduce the risk of illness or disease. Perceived barriers are a person’s perceived obstacles to performing this health behavior or taking a recommended action. Cue to action is a stimulus to trigger a decision to accept a recommended health action. Self-efficacy refers to the level of confidence someone has in their own ability to perform a health behavior.

The HBM works to increase awareness of a health risk in people’s lives. For the purposes of Helping Mothers Have Healthy Babies (HMHHB), the HBM will assist in explaining

the risk factors for higher IMR by utilizing the constructs of perceived susceptibility and perceived severity. Helping Mothers Have Healthy Babies is focused on reaching nonHispanic Black women in the City of Wilmington, since this is the highest risk population in Delaware. To relay both perceived susceptibility and perceived severity, the program will pull from both national and state epidemiological data to educate this group on their risk for IMR. Utilizing the construct of perceived benefits, Helping Mothers Have Healthy Babies will help explain the benefits of seeking proper care for pregnancy, and barriers to treatment can be addressed.

Many of the barriers that women in the non-Hispanic Black community face involve the SDOH. The information presented will need to reflect the racial inequity that this population faces, and how the program aims to help bridge that gap. This educational presentation will help women understand the importance of receiving proper care during pregnancy, while also acknowledging the barriers faced by this population in this geographical location. Helping Mothers Have Healthy Babies will call people to act; to seek out change in their current health behaviors after learning the risks and benefits. Finally, Helping Mothers Have Healthy Babies will increase women’s self-efficacy in relation to their pregnancies and promote confidence in healthy pregnancies for this cohort.

HELPING MOTHERS HAVE HEALTHY BABIES Helping Mothers Have Healthy Babies includes definition and structure of the program, identification and management of stakeholders, website creation, education, and a communication plan. The program aims to help educate non-Hispanic Black women of reproductive age in the City of Wilmington (Zip Codes 19802, 19802, 19803, 19804, 19805, 19806, 19807, and 19809)19 on the high risk of infant mortality that is faced by this community. Helping Mothers Have Healthy Babies will produce present a webinar and create a website with access to the live webinar and a recording, along with access to information for doctor’s offices, transportation information, and connection to supplies for mothers and newborn babies.

The first section of the Helping Mothers Have Healthy Babies logic model is dedicated to outlining the program (Appendix A). The first objective is to outline the webinar, website, and survey materials, and create a timeline for their implementation. The timeline will be shared with collaborators. The next objective is to define the program goals and create a mission statement to share with interested collaborators. This objective is important for creating vision for the rest of the program. The collaborators will have a chance to participate in the formation of the mission statement and goals.

The next objective in the program is identification and engagement. Helping Mothers Have Healthy Babies will reach out to interested collaborators, including the March of Dimes, the Delaware Healthy Mother and Infant Consortium, and the Delaware Division of Public Health. Finding interested collaborators is essential for the creation of the webinar.

These collaborators will be able to provide insight into what information needs to be presented, and potentially present

information on the webinar. Once a group of interested collaborators is established, it will be turned into a formal list of stakeholders, and the collaborators will be updated periodically on the progress of the program.

The next objective is the creation of the website. The website is a key piece of Helping Mothers Have Healthy Babies. The site will include access to the webinar- both when it is streamed live and a recording- as well as access to information about connections to clinics/doctor’s offices for women for pre-and post-natal care, access to transportation information to get to and from these appointments, and a page for women to find resources for supplies needed during and after pregnancy for both mother and baby. The website will have a launch date of July 2021.

After the creation of the site, the formulation of the webinar and surveys can begin. The first objective is to reach out to the interested collaborators about content for the webinar. The webinar is scheduled for August, so the goal is to have 100% of the webinar planned and scheduled with speakers by July.

The creation of a survey for the attendees of their knowledge before and after the webinar is an important metric to see if the information provided in the webinar is helpful. The data from the surveys will provide insight for the effectiveness of the webinar and can help shape future initiatives.

The final piece of Helping Mothers Have Healthy Babies is the communication plan. These objectives are essential to the program, since this is how the program will reach the target audience. The main goals of the communication plan are to advertise using emails or brochures in different doctor’s offices, clinics, hospitals, and emergency rooms in the Wilmington area. There will also be a social media initiative for the program as well. Throughout the time of communication initiatives, a list of interested attendees will be formulated from the time they register for the event. This list will be utilized to send updates about the website, webinar, and future events.

DISCUSSION Social Determinants of Health Infant Mortality relates to the SDOH, since the SDOH are where people play, work, live, and learn. Many of the challenges that non-Hispanic Black women face in infant mortality are attributed to the SDOH. These factors are more than just the sociodemographic risk factors, and they play a vital role in the health of these women and babies. The prevalence of infant mortality is shaped by access to education and healthcare, economic stability, the neighborhoods women live in, and the community that surrounds them. Multiple factors in the SDOH can work together to create barriers for women seeking care. Looking at a woman’s place of residence at the time of pregnancy can be an important factor in assessing access to care. Women in neighborhoods that are rural, or face impoverishment, have a smaller chance of finding the proper medical specialists required for pregnancy.

On top of that, some women do not have access to healthcare or transportation to get to appointments. For those who do not have healthcare, the emergency department may be a primary source of care.

155

It is known that the African American community faces the poorest birth outcomes of all racial/ethnic groups in the United States. In 2017, the IMR in African American women was 2.3 times as high as non-Hispanic Whites.20 The IMR in 2017 was 11.0 for non-Hispanic Black women, versus 4.7 in non-Hispanic White, and 5.8 in all races.20 This community faces a disproportionate amount of people living in poverty, as compared to other racial groups. In Delaware, about 7.3% of the White community lives in poverty, while 17.3% of the Black community does. The poorest birth outcomes- highest rate of infant mortality, LBW, and preterm birth- are not accidental or isolated incidents. They are related to the racial segregation of the Black community and the high percentages of those living in poverty.21 The SDOH include ways to take effective actions at the individual interpersonal, organizational, community, and public policy levels. The Helping Mothers Have Healthy Babies program will work in multiple levels; at an organizational level, the program provides access to care, transportation, and baby supplies; on an individual level, it provides education and encouragement for how to reduce the risk of infant mortality for women and their babies.

These determinants play a key role in the health of both mothers and babies. Understanding the impacts the SDOH have on the health of individuals and the health of communities plays a vital role in implementing initiatives that create change.

Epidemiology Epidemiology looks to find the causes of health outcomes and diseases in populations.22 Health is viewed at a community level, and it looks at the distribution of health-related events in different populations. Epidemiological data is crucial to understanding the cause of a health-related problem, which, in this case, is infant mortality. This data helps assess where the problem could be stemming from and allows for a plan to control the problem.

Health Inequity/Equity Health inequities, as described by the World Health Organization, are “differences in health status or in the distribution of health resources between different population groups, arising from the social conditions in which people are born, grow, live, work and age.”23 These barriers in distribution of health resources can be attributed to the differences in social and economic policies between different groups. These policies can create barriers for some groups to seek certain treatment over others.

Health inequity in infant mortality stems from institutional racism, class oppression, and gender discrimination and exploitation.24 Health inequity can then trickle down into power and wealth imbalance and create disparities in education, housing, and healthcare for Black women. Utilizing the social determinants of health to address health inequity can start to tackle problems created by institutional racism, class oppression, and gender discrimination and exploitation.24 Addressing transportation, quality of education, availability of food, job security, safe affordable housing, and a living wage can start to create an environment that allows for Black women to deliver healthy babies in a healthy environment.24 156 Delaware Journal of Public Health - September 2021

Other Tasks During this internship with the Academy of Medicine/ Delaware Public Health Association, I had a chance to hand in a literature review, annotated bibliography, theory paper, logic model, and logic model comprehension paper. The deliverables created and submitted all fell under the topic of infant mortality and contributed to the Helping Mothers Have Healthy Babies program. Though I have had previous experience with the creation of these documents, I have enjoyed the experience of creating them to use for the program. Doing the research and program creation from start to finish was a gratifying experience, and one that will help me in the future. In the beginning, it was a bit daunting to do research and find a topic that I was passionate about, but once I chose infant mortality, I was able to dive into the deliverables.

My favorite part of this process was the creation of the literature review. I loved spending time finding out everything I could about the topic of infant mortality- the epidemiological data, the causes, disparities, and social determinants. I enjoyed bringing all this information together into one paper that I could reference and utilize as my background for the creation of the Helping Mothers Have Healthy Babies program.

WEBPAGE DESIGN As a final portion of my internship with the Academy/DPHA, I created a webpage for the Helping Mothers Have Healthy Babies program. This webpage is in the design of the program in the “website creation” section of the logic model. Though the webpage created does not fully reflect its intended design, it still provides information on the background of the program.

This webpage includes a background, causes, and program plan section. All the information on the site came from the research done in this final paper- with the addition of more visual aids (graphs) to help keep the reader engaged. This was my first experience with making a webpage, and I enjoyed the experience.

The hardest part was determining which information would be valuable to the site, and which information needed to be cut. I enjoyed creating a deliverable for others to see, and creating this site added to my internship experience.

CONCLUSION My time interning for the Delaware Public Health Association and Delaware Academy of Medicine was extremely valuable. The experience of finding a topic to create a program for that could be implemented in Delaware was a task I took seriously and one that excited me. I found the experience to be challenging in some ways- mostly lack of previous experience and fatigue from online learning. I also found the experience to be encouraging.

I am starting my master’s degree (MPH) from the University of Delaware next year, and I will be working as a research assistant.

This internship allowed me to work in an environment that will set me up well for graduate school in the fall.

I enjoyed creating a program from start to finish on my own, and I spent a lot of time learning about other programs created for infant mortality that helped shape my program. I was able to learn from others’ successes or failures and try to make a program that would really help my target group- non-Hispanic Black women of reproductive age in the City of Wilmington.

REFERENCES 1. America’s Health Rankings. (2020). Explore Infant Mortality in the United States | 2020 ... Infant Mortality. https://www.americashealthrankings.org/explore/health-ofwomen-and-children/measure/IMR_MCH/state/ALL 2. Centers for Disease Control and Prevention. (2020, September 10). Infant Mortality. Centers for Disease Control and Prevention. https://www.cdc.gov/reproductivehealth/ maternalinfanthealth/infantmortality.htm 3. State Infant Mortality Toolkit. (2009). Why Focus on Infant Mortality. http://www.amchp.org/programsandtopics/dataassessment/InfantMortalityToolkit/Documents/Why%20 Focus%20on%20IM.pdf 4. World Health Organization. (2018). Infant mortality. World Health Organization. https://www.who.int/data/gho/data/ themes/topics/indicator-groups/indicator-group-details/GHO/ infant-mortality

13. Centers for Disease Control and Prevention. (2021, March 9).

Social Determinants of Health. Centers for Disease Control and Prevention. https://www.cdc.gov/socialdeterminants/index.htm 14. Reno, R., & Hyder, A. (2018). The evidence base for social determinants of health as risk factors for infant mortality.

Journal of Health Care for the Poor and Underserved, 29(4), 1188–1208. https://doi.org/10.1353/hpu.2018.0091 15. Pabayo, R., Ehntholt, A., Davis, K., Liu, S. Y., Muennig, P., & Cook, D. M. (2019, December). Structural racism and odds for infant mortality among infants born in the United States 2010.

Journal of Racial and Ethnic Health Disparities, 6(6), 1095– 1106. https://doi.org/10.1007/s40615-019-00612-w 16. Maryland Department of Health. (2020). Babies Born Healthy. https://phpa.health.maryland.gov/mch/Pages/BBH.aspx 17. Boston University School of Public Health. (2019).

Behavioral Change Models. The Health Belief Model. https://sphweb.bumc.bu.edu/otlt/MPH-Modules/SB/ BehavioralChangeTheories/BehavioralChangeTheories2.html

5. America’s Health Rankings. (2018). Findings International Comparison | 2018 Annual Report | AHR. America’s Health Rankings. https://www.americashealthrankings.org/learn/ reports/2018-annual-report/findings-international-comparison

18. Rosenstock, I. M. (1974). Historical origins of the Health Belief Model. Health Education Monographs, 2(4), 328–335. https://doi.org/10.1177/109019817400200403

6. 2020 March of Dimes Report Card United States. (2020). https://www.marchofdimes.org/materials/US_ REPORTCARD_FINAL_2020.pdf

19. Wilmington, Delaware (DE) Zip Code Map. (2016). Locations, Demographics. Wilmington, Delaware (DE) list of zip codes. https://www.city-data.com/zipmaps/Wilmington-Delaware.html

7. March of Dimes. (2020). 2020 March of Dimes Report Card Delaware. 2020 March of Dimes Report Card. https://www.marchofdimes.org/peristats/tools/reportcard.aspx

20. U.S. Department of Health and Human Services. (2019, November 8). Office of Minority Health. Infant Mortality and African Americans - The Office of Minority Health. https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=23

8. World Population Review. (2021). Delaware Population 2021. https://worldpopulationreview.com/states/delaware-population 9. County Health Rankings and Roadmaps. (2020). County Health Rankings & Roadmaps. County Health Rankings & Roadmaps- Infant Mortality. https://www.countyhealthrankings.org/app/delaware/2020/ measure/outcomes/129/data?sort=desc-0 10. Delaware Health and Social Services. (2018). 2018 Annual Report - Delaware Health and Social Services - State of Delaware. https://dhss.delaware.gov/dhss/dph/hp/2018.html 11. March of Dimes. (2018, March). Low birthweight. March of Dimes Low Birthweight. https://www.marchofdimes.org/complications/low-birthweight.aspx 12. America’s Health Rankings. (2020). Health of Women and Children- Low Birthweight. America’s Health Rankings, Health of Women and Children- Low Birthweight.

21. Poverty Rate by Race/Ethnicity. (2020, Oct 23). Kaiser Family Foundation. https://www.kff.org/other/state-indicator/poverty-rate-by-raceethnicity/ 22. Centers for Disease Control and Prevention. (2016, June 17). What is Epidemiology? Centers for Disease Control and Prevention. https://www.cdc.gov/careerpaths/k12teacherroadmap/epidemiology.html 23. World Health Organization. (2018, February 22). Health inequities and their causes. World Health Organization. https://www.who.int/news-room/facts-in-pictures/detail/ health-inequities-and-their-causes 24. Crear-Perry, J. (2017). Health Equity to Address Black Infant Mortality. http://www.healthystartepic.org/wp-content/uploads/2017/08/ NBECNYCRegionalHealthyStart17.pdf

157

APPENDIX A Logic Model - Helping Mothers Have Healthy Babies Goal

Define & Structure

Identification & Engagement

Website Creation

Education

Implementation Activities/ Objectives

Short Term Deliverables

Mid Term Outputs

1

Create outline for webinar, website, and survey materials

4/2021- Create timeline of surveys, webinar, and website development

5/2021- Lock down timeline to share with collaborators

2

Define program goals/ outline & mission statement to provide to interested collaborators. Allow for edits from collaborators.

4/2021 – Define goals, program outline, & mission statement

5/2021 – Finalize the goals, program outline, & mission statement

6/2021 – content is edited as needed

1

Reach out to interested 4/2021- Outreach to collaborators for support gather interested parties (March of Dimes, DHMIC, DPH)

5/2021- Meeting for all interested in program

All parties involved are brought in on the program

2

Develop a list of interested collaborators

4/2021- Develop list of those contacted as a collaborator for the webinar

Create finalized list of collaborators for the program

List of collaborators updated as needed

1

Create a website with resources and information for the target audience about IMR in Delaware. Identify items that need to be added to the website.

Website launch 7/2021

6/2021- 50% of women in target population aware of website launch and resources

7/2021- all women in target population aware of website resources.

Website launch in7/2021.

2

Create page on site for Webinar to be accessed live.

Once the webinar has passed, upload recording.

5/2021- create a place on the site for discussing upcoming webinar.

7/2021- webinar date in 7/2021

Upon webinar completion, it is uploaded to the site.

3

Page created on site for access to clinics/doctor’s offices for women for pre/post-natal care

5/2021- create page on site for where women can find places for care

Maintenance and updates in this section of the site as needed

4

Create page on site for access to transportation to and from appointments

5/2021- create page on site for women to find transportation for their appointments

Maintain this section of the site

5

Create page on the site for access to supplies for newborn babies and pregnancy

5/2020- create section of site for women to find free supplies for their pregnancies/babies

Maintain this section of the site

1

Reach out to interested collaborators about webinar creation

5/2021- reach out to all collaborators for webinar content

6/2021- collaborators have responded

Webinar scheduled for 8/2021

2

Webinar Creation

5/2021- start working with collaborators on webinar content

6/2021- 50% of webinar is scheduled

7/2021- 100% of webinar is scheduled with speakers.

3

Survey Creation

6/2021- create pre/post webinar survey to see what the audience has learned

7/2021- 75% of registered attendees take the pre webinar survey

8/2021- 75% of registered attendees take the post webinar survey

158 Delaware Journal of Public Health - September 2021

Long Term Outcomes

Goal

Communication Plan

Implementation Activities/ Objectives

Short Term Deliverables

Mid Term Outputs

Long Term Outcomes

1

Advertise for website/webinar in clinics and doctor’s offices in the Wilmington area (1980119809)

5/2021- Contact these locations to talk about the website/webinar

6/2021- Decide a form of communication to patients with these offices (brochures, emails, etc)

Continue to provide

2

Outreach to interested attendees

5/2021- Research where to reach those that are eligible for the program

6/2021- Provide information to clinics/ doctor’s offices about program, so they can tell their patients

All women interested in the program are invited to join

3

Outreach to ER/Hospitals to distribute information to eligible women

5/2021- Reach out to hospitals in target zip codes

6/2021- 50% brochures distributed to hospitals

7/2021- 100% brochures distributed

4

Create brochures to distribute to offices

5/2021- create brochures to be distributed to offices about the webinar/website

6/2021- 50% of brochures distributed

7/2021- 100% brochures distributed; more creation and distribution of brochures as needed

5

Create virtual advertisement/ flyer to be emailed to offices

5/2021- use information from brochure and create virtual format to distribute to offices

6/2021- 50% offices emailed

7/2021- 100% offices emailed

6

Create list of attendees to provide registrars of the webinar a chance to stay updated with future updates and initiatives

6/2021- Develop list of those registered as an attendee

Create finalized list with those who are attending the webinar

7

Create social media accounts (Facebook, Instagram, Twitter)

5/2021- Create accounts

Update accounts with information about upcoming webinars/ events, website information, etc.

8

Utilize Facebook to run an ad to reach target audience

5/2021- Create ad to run on Facebook to reach target audience

6/2021- Run ad on Facebook using a small geographic location to reach target audience

Run/update ads necessary

159

Post-Traumatic Bio-Behavioral Rehabilitation of Adult Female Victims Kathleen Brewer-Smyth, Ph.D., R.N., C.R.R.N., F.A.A.N. Associate Professor, School of Nursing, College of Health Sciences, University of Delaware Harold G. Koenig, M.D. Professor, Psychiatry and Behavioral Sciences, Associate Professor, Medicine, Duke University Health System; Adjunct Professor, Department of Medicine, King Abdulaziz University, Saudi Arabia Katherine Kafonek, Ph.D., M.S. Assistant Professor, Criminology, California State University, Fresno Tyler Adams, B.A. Department of Psychological and Brain Sciences, College of Arts and Sciences, University of Delaware Adrian Raine, D. Phil Richard Perry University Professor, Departments of Criminology, Psychiatry, and Psychology, University of Pennsylvania Douglas A. Granger, Ph.D. Founder and Chief Scientific Strategy Advisor, Salimetrics LLC and Salivabio LLC; Emeritus Chancellors’ Professor, Institute for Interdisciplinary Salivary Bioscience Research, University of California Irvine; Adjunct Professor, Johns Hopkins University

ABSTRACT Objective: To determine if low resting basal AM cortisol and flat diurnal cortisol slope that has been reported in female abuse victims, which is dysregulated in the same way in female violent perpetrators, could be corrected and if healthier diurnal cortisol patterns are associated with less aggression in adult female victims.

Design and Methods: A non-experimental, naturalistic study evaluated if bio-behavioral rehabilitation could occur for females living in a Delaware homeless mission and participating in their programs. Basal salivary cortisol (AM, PM & slope), aggression, neurological conditions, general health, alcohol use, having been a victim of abuse, religion, spirituality and forgiveness were evaluated over one month between 2018 and 2019.

Results: T tests revealed significant improvement in mean cortisol (AM, PM & slope), aggression, emotional/ behavioral dyscontrol, and health over one month while participating in the mission’s programs. Paired t-tests however were only significant for aggression and health. Healthier cortisol was significantly correlated with greater time since last alcohol, greater time since last abuse, less aggression, better health and greater religion, spirituality and forgiveness.

Conclusion: Community programs could be cost effective methods of post-traumatic bio-behavioral rehabilitation. Forgiveness may play a critical role for abuse victims. A larger sample and more settings are needed, although these findings are promising.

INTRODUCTION Female abuse victims disproportionately make up homeless populations. They can cycle in and out of prisons to homelessness due to multiple related problems1 including having been a victim of adverse childhood experiences (ACEs) such as childhood sexual abuse (CSA),2,3 alcohol misuse,4,5 and traumatic brain injuries (TBI),6,7 which may all be risk factors for committing violent crimes.8–12 Importantly, we are not implying that victims of abuse are to be blamed, but rather that we recognize their unresolved trauma may result in risk factors for behaviors that need early detection and evidence-based prevention interventions.

ACEs could result in poor bio-behavioral health outcomes throughout the lifespan.13–16 It is therefore critical to intervene to prevent or mitigate these outcomes. However, little effort seems to be focused on addressing life-long consequences of stress after traumatized children become adults. Further study is needed to support evidence-based interventions to enhance resilience and brain plasticity in adult female victims as most research has been with children.

160 Delaware Journal of Public Health - September 2021

The stress hormone cortisol can be dysregulated later in life among victims of abuse.17 Cortisol is a primary product of the hypothalamic-pituitary-adrenal (HPA) axis, a key component of the stress response. Normally, a resting basal cortisol diurnal pattern shows a peak in the morning and then a gradual decrease throughout the day, creating a steep diurnal cortisol slope between morning (AM) and evening (PM). Stress such as from CSA can precipitate long-lasting HPA axis dysfunction of the psychobiological stress system resulting in cortisol dysregulation.18 HPA axis dysregulation, including low AM cortisol and flatter slope, have been reported in both female victims19,20 and perpetrators of violence.9,10,17 Women with greater intimate partner violence victimization had a flatter cortisol slope compared to women with less of victimization.21 Criminals with greater abuse histories than controls have low diurnal cortisol.22 Low AM cortisol was related to trauma symptoms in women23 and aggression in adolescents.24,25 Importantly, low AM cortisol and flatter slope were only related to recently committing a violent crime, but not past lifetime violent crime history of doi: 10.32481/djph.2021.09.021

those currently incarcerated for a nonviolent crime,10 suggesting that cortisol dysregulation may normalize as violent behavior decreases. Which occurred first, and what contributed to these changes is unknown. It is not known if or how dysregulated HPA function could be rehabilitated in adult females, or if rehabilitated HPA regulation could decrease violence or aggression.

There have been numerous cortisol studies, yet very few evaluate interventions to improve diurnal cortisol regulation or biobehavioral outcomes of adult victims. Interventions to improve biological health of children who experienced ACEs show promise.26 However, studies have not determined if cortisol dysregulation in adult females can be corrected, how to correct it, or if behavior improves if cortisol improves. It is critical to study this to establish evidence-based interventions to decrease the exorbitant human and financial cost.27–29 Homelessness is a serious problem globally in even the wealthiest nations.30 Homelessness in the U.S. increased by 0.7% from 2016 to 201731 and by 3% from 2018 to 2019, the third straight year of increases.32 Between 38-42% of the homeless in the region where this study was conducted were female.33,34 Social support could impact physiological responses to acute stress,35 but it is not known if it can improve cortisol diurnal patterns associated with past stress. There is evidence however, to support the hypothesis that social support could play a role in normalizing a dysregulated cortisol diurnal rhythm.36 Social support and other resources from homeless shelters, often run by faith-based communities,37 could promote resilience in victims of ACEs and prevent long-term post-traumatic sequelae.2,38–41 It is critical to study community supportive resources to determine if they can help promote resilience to HPA axis dysregulation in females.

The purpose of this study was to test the hypothesis that homeless women would have higher AM basal cortisol, steeper cortisol diurnal slope, and less bio-behavioral outcomes such as alcohol use, aggression and violence over a one-month time frame living in a supportive shelter and participating in their programs. We examined females for resting basal AM and PM salivary cortisol, past abuse, health, alcohol use, aggression, violence and length of time living in the homeless mission and attending their programs.

Because this is a faith-based setting, faith-based measures were also assessed. An additional aim was to test the hypothesis that the main variables would be correlated with cortisol.

METHODS This non-experimental, naturalistic, longitudinal pilot study evaluated women (N =21) living in a faith-based homeless mission in the Mid-Atlantic region of the United States over one month. Women may obtain housing at this mission for a night or apply to be in the longer-term residential program. Homeless women may live at this mission for up to two years if they follow the rules and participate in the mission’s programs to help them become independent. All women living in the mission were given the opportunity to be in the study. The response rate was 80%.

Women were only included in the study if they were in the longerterm residential program where they could be followed over time, over age 18 years, not on medications such as steroids that can influence cortisol levels, and not pregnant or having other medical conditions that could influence cortisol levels.

The mission statement of the setting is to serve the homeless, addicted and impoverished through Christ-centered programs to meet their spiritual, social and physical needs. Their primary goal is to restore people to a right relationship with God, their families and society. Each resident woman receives individual counseling and group education and training to be equipped to become a productive member of society. The women participate in daily programs and share responsibilities such as cooking and cleaning. The programs offer Bible-based rehabilitation for a fresh start.42 The Women’s Discipleship Lifechange Program consists of 2- 4 hours of Biblically-based individual counseling per week, daily morning and evening chapel services, recreation, education enhancement until achieving high school competency, and 6-8 hours of classes per week. Class topics include the Christian lifestyle based on the Bible, spiritual disciplines (prayer, Bible study, worship, giving), addiction rehabilitation, resisting temptation i.e. substance use, finances and budgeting, nutrition, work ethic, relationship boundaries, anger management, abuse, career planning and numerous other Bible-related topics. Classes and counseling are coordinated together.

The University of Delaware Institutional Review Board (IRB) approved the study and all procedures were carried out in accordance with the protocol. All participants were able to read and signed informed consent forms after they passed a brief quiz assuring that they understood the consent form. All interviews were private, participants’ information is confidential and was not reported to the mission staff to assure that participants felt safe providing accurate information. Confidentiality could only be broken if a participant posed a threat to themselves or others, which did not occur.

Measures Alcohol use was measured with the Alcohol Use Disorders Identification Test (AUDIT), a valid, reliable measure consistent with other alcohol use scales (Cronbach’s alpha.67-.88).43–45 Timeline Followback (TLFB) was also used to evaluate alcohol use retrospectively.46–49 Self-reports have been reliable.50 Retest reliability was r=.73-1. for outpatients with severe mental illness.51 Violence propensity was evaluated with the Buss-Perry Aggression Questionnaire, (BPAQ) a valid reliable measure of violence propensity.11,52 This is a 29-item Likert scale. Internal consistency for subscales and total score range from .72 to .89; retest reliability over 9 weeks ranged from.72 to .80.52 Higher scores indicate greater violence propensity.

Adverse experiences in childhood (ACE) and adulthood were investigated with Muenzenmaier’s scale,53,54 slightly modified to assess frequency and severity of sexual and physical abuse before and after age 18. Validity and reliability was reported in tests of women of similar age, ethnic background, and education including mentally ill women and female prisoners.9,10,53,54 Self-reports were verified by evidence of injuries with physical examinations. Higher scores indicate greater frequency and severity of abuse.

Salivary Cortisol was evaluated similar to previous studies for comparison,9,10,17 immediately upon awakening (AM) before they ate, drank, smoked or exercised, and again before dinner (PM). Participants were asked not to eat, drink anything other than water, smoke or exercise between their noon meal and the 161

PM saliva collection. AM and PM were re-assessed on a second day within one week of initial measures55 and again after one month over two days within one week. An average was computed for the two AM cortisol measures at the initial collection and again after one month. The average was also calculated for the two PM measurements at both time periods. Cortisol slope was determined by subtracting PM average from AM average at each time period. Variables that could impact cortisol are controlled as participants all lived in the same environment, ate the same meals at the same time, were exposed to the same light, had the same sleep-wake routines, and the same homeless socio-economic status. Saliva samples were collected with passive drool then transported on ice to freezer storage until they were assayed in a University of Delaware lab with commercially available immunoassay kits without modification to the manufacturer’s recommended protocols. All assays have been validated as outlined in the product inserts (see www.salimetrics.com).

Religion/ Spirituality (R/S) was measured with the Duke University Religion Index (DUREL)56 because the setting is faith-based. The DUREL has been used for many years in mental health studies.57,58 Test-retest reliability (r = 0.91), internal consistency (Cronbach’s α = 0.78–0.91), convergent validity with other R/S measures (r’s = 0.71–0.86), and factor structure have been confirmed in numerous studies.59 Higher scores indicate greater R/S. Forgiveness was measured with the Heartland Forgiveness Scale (HFS), an 18-item, self-report questionnaire to assess dispositional forgiveness (general tendency to forgive).60 The HFS has three subscales: tendency to forgive self, other people, and situations beyond anyone’s control (natural disaster). Internal consistency Cronbach alpha was HFS self, .72 - .76; other, .78 - .81; and situations, .77 - .82; test-retest three-week stability was self, r=.72; other, r=.73; situations, r=.77; and 9-month stability was self, r=.69; other, r=.69; situations, r=.68.60 Higher scores indicate greater forgiveness.

Health was measured with the Optum™ SF-12v2® Health Survey, a short version of the SF-36v2® of the Medical Outcomes Study61,62 with 12 questions for self-report of functional health and wellbeing.63 It is a practical, reliable, valid measure of physical and mental health that takes 2-3 minutes to complete and is widely used to measure population health64 and health-related quality of life in the Medicaid population with physical and behavioral conditions in similar cohorts.65 Participants also underwent a brief medical history and physical examination to validate selfreports and detect evidence of abuse and conditions that could impact results. Higher SF-12v2® scores indicate better health.

Neurological conditions such as traumatic brain injury (TBI) were assessed with the reliable, validated,66,67 physical examinations by a nurse specialist and Quality of Life in Neurological Disorders (Neuro QOL)68–71 short forms, which measure physical, mental, and social effects of neurological conditions from the Patient-Reported Outcomes Measurement Information System (PROMIS). Neuro-QOL Emotional and Behavioral Dyscontrol with internal consistency, (Cronbach α) 0.93 can be completed in 2 minutes.68 Higher scores indicate greater emotional and behavioral dyscontrol.

162 Delaware Journal of Public Health - September 2021

Statistical Analyses Data were analyzed with IBM SPSS Statistics 26. Frequencies, distributions and descriptive statistics and means were computed for each variable to compare measures at the initial interview to measures at a one-month follow up. Differences in variables between the initial measures and one-month follow up were analyzed with student t tests and paired t tests. Pearson correlations were also analyzed to detect relationships between the main variables and cortisol.

RESULTS Participants were females aged 22 to 59 years. Six identified as Caucasian, 12 African American, 1 Hispanic/ Latino and 2 reporting mixed racial ethnic background. This is consistent with the ratio of racial/ ethnic backgrounds of women at this setting.

Fourteen reported that they had been abused as children and 14 reported having been a victim of abuse after age 18. Thirteen were being treated for a mental health condition (e.g. bipolar disorder, anxiety, depression). Fourteen had a neurological history, primarily TBI. Six sustained at least one TBI before becoming homeless; 3 had a history of more than one TBI. Four admitted that they had been arrested and incarcerated in the past. Four reported having committed a violent act for which they were never caught or convicted.

T tests revealed significant improvement in mean cortisol (AM p=.010, PM p=.000, slope p=.033); aggression (p=.000); Emotional and Behavioral Dyscontrol (p=.000) and health (p=.000) over one month while participating in the mission’s programs. Paired t-tests however were only significant for lower aggression (p=.015) and better health (p=.002). Steeper cortisol slope correlated with greater time since last alcohol (r=.925, p=.000) and time since last abuse (r=.904, p=.000). Higher AM cortisol correlated with greater time since last alcohol (r=.931, p=.000) and time since last abuse (r=.911, p=.000). Lower PM cortisol correlated with less aggression (r=.648, p=.043); better health (r=-.678, r=.003); greater religious attendance (r=-.650, p=.002); private religious activity (r=-697, p=.001); intrinsic religiosity (r=-.741, p=.000); and forgiveness of self (r-.-755, p=.000), forgiveness of others (r=.751, p=000), and forgiveness of situations (r=-.762, p=.000).

DISCUSSION Aggression decreased and health improved over one month while living at the mission and participating in their programs.

A healthier diurnal cortisol pattern significantly correlated with better health, greater time since last alcohol, greater time last abuse, less aggression, and greater religion/ spirituality and forgiveness. Forgiveness may play an important role in victims’ rehabilitation.2 These findings suggest that living in a supportive homeless mission and participating in their faith-based programs may attenuate the bio-behavioral concomitants of chronic stress.

The majority reported no intention of acting upon aggression measured in surveys. More time since the last victimization by abuse correlated with a healthier cortisol pattern, which is encouraging for the future of abuse victims.

Longer time since last alcohol use also correlated with a healthier cortisol pattern. Evidence suggests that alcohol directly stimulates the HPA axis and effects glucocorticoid receptors that contribute to the development of alcohol use disorders, their severity, chronicity, progression and relapse risk.72

Limitations Causation cannot be determined by this non-experimental design.

Future research should study more participants prospectively over a longer period of time. Because homeless shelters can vary depending upon geographical region, faith-based beliefs, leadership, management, and funding sources, further study is needed in more settings.

CONCLUSIONS Based on these correlations, those who were abused most recently, used alcohol most recently, had greater aggression, poorer health and lower religion and forgiveness had the most unhealthy cortisol pattern, which is likely related to past abuse and violent behavior.9,10,17 Further study is needed with larger more diverse populations and more settings to determine if faith-based missions could impact cortisol by providing protection from abuse, restricting alcohol and promoting religious principles such as forgiveness.

It has been reported that there are no mechanism-informed interventions for ACEs victims in order to prevent or reverse adverse health outcomes.73 Homeless shelters however, could help correct bio-behavioral correlates of previous chronic stress in adult females through social and other support.38–41 More research is needed to determine the best evidence-based interventions for adult female victims. More research needs to focus on abuse in underserved, low socioeconomic, aging populations, and to determine the degree to which bio-behavioral changes associated with stress are reversible. Forgiveness may play a critical role.

It is not clear if the results are simply due to these women being housed in a supportive and protective shelter or if the faith-based programs unique to this shelter contributed to these results, yet faith-based measures correlated with healthier cortisol. Further study is needed with more settings. These findings support the need to study a larger more diverse sample to statistically adjust for related variables to answer these questions.

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39. Banyard, V., Hamby, S., & Grych, J. (2017, March). Health effects of adverse childhood events: Identifying promising protective factors at the intersection of mental and physical well-being. Child Abuse & Neglect, 65, 88–98. https://doi.org/10.1016/j.chiabu.2017.01.011 40. Brewer-Smyth, K., & Koenig, H. G. (2014, April). Could spirituality and religion promote stress resilience in survivors of childhood trauma? Issues in Mental Health Nursing, 35(4), 251–256. https://doi.org/10.3109/01612840.2013.873101 41. Toussaint, L., Shields, G. S., Dorn, G., & Slavich, G. M. (2016, June). Effects of lifetime stress exposure on mental and physical health in young adulthood: How stress degrades and forgiveness protects health. Journal of Health Psychology, 21(6), 1004–1014. https://doi.org/10.1177/1359105314544132 42. Sunday Breakfast Mission. (2021) Retreived from https://sundaybreakfastmission.org/ 43. Babor, T. F., Higgins-Biddle, J. C., Saunders, J. B., & Monteiro, M. G. (2001). The Alcohol Use Disorders Identification Test (AUDIT) Guidelines for Use in Primary Health Care Manual.

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Drug and Alcohol Dependence, 42(1), 49–54. https://doi.org/10.1016/0376-8716(96)01263-X 49. Sobell, L. C., Sobell, M. B., Leo, G. I., & Cancilla, A. (1988, April). Reliability of a timeline method: Assessing normal drinkers’ reports of recent drinking and a comparative evaluation across several populations. British Journal of Addiction, 83(4), 393–402. https://doi.org/10.1111/j.1360-0443.1988.tb00485.x 50. Sobell, L. C., Sobell, M. B., Riley, D. M., Schuller, R., Pavan, D. S., Cancilla, A., . . . Leo, G. I. (1988, May). The reliability of alcohol abusers’ self-reports of drinking and life events that occurred in the distant past. Journal of Studies on Alcohol, 49(3), 225–232.https://doi.org/10.15288/jsa.1988.49.225 51. Carey, K. B., Carey, M. P., Maisto, S. A., & Henson, J. M. (2004, November). Temporal stability of the timeline followback interview for alcohol and drug use with psychiatric

outpatients. Journal of Studies on Alcohol, 65(6), 774–781. https://doi.org/10.15288/jsa.2004.65.774 52. Buss, A. H., & Perry, M. (1992, September). The aggression questionnaire. Journal of Personality and Social Psychology, 63(3), 452–459. Retrieved from http://search.proquest.com/ docview/73223875?accountid=10457 https://doi.org/10.1037/0022-3514.63.3.452 53. Meyer, I. H., Muenzenmaier, K., Cancienne, J., & Struening, E. (1996, March). Reliability and validity of a measure of sexual and physical abuse histories among women with serious mental illness. Child Abuse & Neglect, 20(3), 213–219. https://doi.org/10.1016/S0145-2134(95)00137-9 54. Muenzenmaier, K., Meyer, I., Struening, E., & Ferber, J. (1993, July). Childhood abuse and neglect among women outpatients with chronic mental illness. Hospital & Community Psychiatry, 44(7), 666–670. https://doi.org/10.1176/ps.44.7.666 55. Stalder, T., Kirschbaum, C., Kudielka, B. M., Adam, E. K., Pruessner, J. C., Wüst, S., . . . Clow, A. (2016, January).

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Cleaning and disinfecting items of someone that has COVID-19 Wear disposable gloves for these tasks and wash your hands after removing gloves. If you don't have gloves, wash your hands immediately following.

PERSONAL ITEMS OR SURFACES

LAUNDRY • Don’t shake out laundry before washing.

• Wash clothes in the warmest temperature for the fabric.

• Dry clothes completely.

• Use a separate basket for the person’s dirty laundry. Line it with a disposable or washable liner to keep basket clean.

• Use a detergent or soap and water to clean dirt from surfaces and objects.

• To kill the virus, use a household disinfectant cleaner, a household bleach solution, or alcohol solutions with at least 70% alcohol.

• Use the right product for the surface.

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CELL PHONES • Unplug phone from any device or cable.

• Spray a soft, lint-free cloth with a non-abrasive disinfectant or 70% isopropyl alcohol.

• Gently clean the phone and phone case with the cloth.

• Do not spray liquid on the phone as it could damage it.

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COVID-19 Vaccine Hesitancy in Delaware’s Underserved Communities Sharron Xuanren Wang, PhD: Department of Sociology and Criminal Justice, Delaware State University Nicole Bell-Rogers, EdD, FNP-C, RN: Department of Nursing, Delaware State University Dorothy Dillard, PhD: Center for Neighborhood Revitalization and Research, Delaware State University Melissa A. Harrington, PhD: Delaware Institute of Science & Technology, Delaware State University

ABSTRACT Background and Objective: Vaccine hesitancy may be one of the greatest challenges to conquering the COVID-19 pandemic. Underserved communities across the U.S. have been suffering from the pandemic in unique ways, and vaccine hesitancy may exacerbate or prolong these issues. However, the prevalence of vaccine uptake and hesitancy in these vulnerable populations is unknown. The present study aimed to investigate: (1) prevalence of COVID vaccine uptake and COVID vaccine hesitancy in Delaware’s underserved communities; (2) factors (i.e., demographic, socioeconomic characteristics, as well as COVID-related behaviors) associated with vaccine hesitancy; and (3) specific concerns about COVID vaccines.

Materials and Methods: Data were extracted from a survey conducted in Delaware’s underserved communities from March 4, 2021 to May 25, 2021. Logistic regression analyses were used to assess factors associated with vaccine hesitancy.

Results: Results from our survey indicated that vaccine uptake is lower in Delaware’s underserved communities than Delaware overall and the national average. In addition, a considerable proportion of participants were categorized as vaccine hesitant. We also found that being black increased the likelihood of vaccine hesitancy for the COVID-19 vaccine, which is consistent with prior studies on vaccine hesitancy. Results also indicated that having been tested for COVID in the past decreased the odds of vaccine hesitancy. However, we did not find that demographic or socioeconomic characteristics played a role in vaccine hesitancy in Delaware’s underserved communities.

Conclusion and Relevance: Our study represents a critial first step in understanding the determinants driving COVID vaccine uptake and hesitancy. Identifying key factors and causes for vaccine hesitancy may help in establishing novel strategies that counteract low vaccination rates in underserved communities.

INTRODUCTION The COVID-19 pandemic has had a strong negative impact on the health and wellbeing of Americans since March 2020.

Vaccines are a key element for decreasing the number of new infections, minimizing the likelihood of severe infections, and slowing down the pandemic. On Monday, May 25, 2021, President Biden announced that 50% of U.S. adults had been fully vaccinated against COVID-19. On the same day, about 42% of adults in Delaware had been fully vaccinated, and 53% had received at least one dose. Delaware started to administer vaccines on a rolling basis starting December 15, 2020. The first eligible groups included healthcare personnel, emergency medical services agencies, and long-term care staff and residents (Phase 1A). Starting January 19, 2021, eligibility expanded to 65 and older frontline essential workers (Phase 1B). The COVID vaccine became available to all Delawareans age 16 and older on April 6, 2021.1 By May 25, 2021, Delaware had administered 889,500 doses of COVID vaccines. Data from My Healthy Community, a Delaware Environmental Public Health Tracking Network, show that in Delaware more females than males have received at least one dose of the vaccine, and compared to Whites, Blacks have received at least one dose of the vaccine at a lower rate (i.e., 55% of Whites and 40% of Blacks by May 25, 2021).

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Racial and ethnic minorities have been not only disproportionately affected by the pandemic in terms of economic impact and mortality but also in terms of rate and speed of vaccination. A Kaiser Health News report found that Black Americans were vaccinated at rates 2 to 3 times below white Americans.2 The lower rate of vaccination among African Americans might be attributed to structural reasons (i.e., lower access to primary care, limited availability of vaccines in minority neighborhoods). Vaccine hesitancy may be one of the greatest challenges to conquering the COVID-19 pandemic.

Vaccine hesitancy refers to the delay in acceptance or refusal of vaccines despite the availability of vaccine services.3 In 2019, the World Health Organization (WHO) listed vaccine hesitancy as one of the top ten threats to global health.4 Vaccine hesitancy can be influenced by various factors, including race, ethnicity, age, sex, and socioeconomic background.5–8 Considering the history of medical abuse and racial discrimination in the healthcare setting toward Black Americans, many studies have suggested that Black Americans are more likely to express hesitancy toward COVID-19 vaccines.7 One study conducted in May 2020 using panel data estimated that 31% of the U.S. population expressed vaccine hesitancy. Recent studies have also reported a higher level of vaccine hesitancy among females and Black respondents.9 In addition, socioeconomic status was also doi: 10.32481/djph.2021.09.022

negatively associated with vaccine acceptance. Another report using data from December 2020 suggested that 49% of Black Americans expressed COVID vaccine hesitancy, compared to 34% of Whites.10 Ending the COVID-19 pandemic through vaccination programs may require a deeper understanding of who is hesitant and why.

An array of factors contribute to vaccine hesitancy including mistrust of healthcare workers and the “3 Cs,” which include complacency, convenience, and confidence.11 Underserved communities across the U.S. have been suffering from the pandemic in many different ways. However, research and action plans geared toward helping these vulnerable populations are limited.12 Using data collected from March 2021 to May 2021, the current study explores vaccine hesitancy in Delaware’s underserved communities. Specifically, this present study investigates: (1) the prevalence of COVID vaccine uptake and COVID vaccine hesitancy in Delaware’s underserved communities; (2) factors (i.e., demographic, socioeconomic characteristics, as well as COVID-related behaviors) associated with vaccine hesitancy; and (3) concerns about COVID vaccines.

The study hopes to shed light on the determinants of vaccine hesitancy, thus providing new strategies for outreach among disadvantaged communities to promote COVID vaccination and narrow health disparities caused by the pandemic.

RECRUITMENT The study was approved by the Institutional Review Board at Delaware State University. All study participants were 18 years of age or older and were residents of Delaware’s most underserved communities as defined by health and sociodemographic indicators. We defined underserved communities as areas, geographically indicated by census tract, experiencing high rates of poverty, unemployment, and health disparities.

Delaware’s Division of Public Health (DE DPH) adopted the Community Health Index (CHI) as the common indicator for characterizing community health at the census tract level. The CHI is a composite score derived from life expectancy, infant mortality rate, percentage of high school graduates, and child poverty rates. It serves as a proxy of community health. DE DPH used the CHI scores to identify the Delaware communities with the greatest need in addressing the social determinants of health that drive health disparities. As expected, these communities have concentrated poverty, limited health resources, and large minority populations. We have selected these communities as our study sites because they experience the greatest need for intervention specific to COVID-19 and health disparities in general.

among the residents. We worked with WHP and SCHS to develop a recruitment protocol, recruitment materials, and information appropriate for the residents of the study sites; to establish partnerships with the community-based organizations and clinics serving the residents; and to maintain working relationships with the study sites.

DATA AND METHODS Data were extracted from a survey conducted from March 4, 2021, to May 25, 2021. The survey contained questions about demographics, socioeconomic characteristics, COVID-related beliefs and practices, general health, and testing and vaccinerelated questions. Questions on the survey were adopted from the COVID-19 Community Response Survey developed by John Hopkins University and the NIH Common Data Elements (CDEs). Surveys were conducted electronically through REDcap on iPads at the study sites. Nurses, student interns, staff, and participants wore masks at all times, sanitized their hands and IPADs frequently, and remained 6-feet apart. By May 25, 2021, 307 participants have been recruited in the study.

Figure 1 displays a map showing the residency of participants based on their zip code. After excluding participants residing outside of Delaware, age younger than 18, and Hispanics from the study (due to the very small sample size of Hispanics, we did not examine this sample characteristic in order to protect the identities of the study participants), 293 participants remained in the analysis. Figure 1 was created based on the zip codes provided by 266 participants. Forty-two participants did not indicate zip code, and their location was based on zip codes of the study sites.

Figure 1. Map of Participants’ Residence in Delaware Based on Zip Code

We collaborated with two trusted community health advocacy agencies, Wilmington Hope Commission (WHC) and the Sussex County Health Coalition (SCHC). WHC and SCHC currently serve as key coordinating organizations in Delaware’s COVID-19 response. They also have established partner networks comprised of community-based health providers and clinics, non-profit organizations, and faith-based organizations based in our communities of interest. The community-health providers and clinics have established trust and a good rapport 169

Measures The outcome variable of interest is a binary variable vaccine hesitancy (yes=1/no=0). Vaccine hesitancy was operationalized with a multiple-choice question, “Why have you not received your COVID vaccine?” The answers to the question included: • I am not qualified; • I do not want to get vaccinated; • I am qualified, but I had a hard time finding available vaccines; • I am unaware of the availability of the vaccine; • Other; • Prefer not to answer; and • Don’t know.

Respondents who chose the answer “I do not want to get vaccinated,” “Prefer not to answer,” and “Don’t know” were coded as vaccine hesitant, consistent with prior research.9 We further assessed the open-ended specified answers for those who picked “Other.” We coded the answers expressing any vaccine hesitancy to a numerical value of one (1).

A set of socio-demographic characteristics are used as covariates. We included information on race (Black and others), age, educational level, current employment status, whether participants experienced job loss during the pandemic, whether participants had health insurance, family income in 2020, and the number of people living in the household. We used Black (Yes = 1; No = 0) as an indicator for race. Due to the small sample size, we grouped respondents identified as White, Asian, Native American, Pacific Islander, and other race into “others.” It should be noted that the majority of respondents coded as “others” were whites (about 80%). We also included whether respondents have been tested for COVID infection (yes = 1; no=0) and whether respondents have ever tested positive for COVID infection (yes = 1; no=0) as covariates.

Lastly, we included COVID-related behaviors and practices.

The questions were extracted from the COVID-19 Community Response Survey. The questions asked whether the respondents have made any changes to their lifestyles or daily activities because of the COVID-19 pandemic. The list includes: • More handwashing than usual (yes= 1/no=0); • More use of hand sanitizer than usual (yes= 1/no=0); • More cleaning in your home than usual (yes= 1/no=0); • More disinfecting surfaces in household than usual (yes= 1/no=0); • Disinfecting or wiping down groceries (yes= 1/no=0); • Disinfecting or wiping down mail or packages (yes= 1/ no=0); • Stocking up on food and supplies; avoiding or cancelling domestic traveling (yes= 1/no=0); • Not ordering take out from restaurants (yes= 1/no=0); and • Wearing a mask when out in public (yes= 1/no=0).

We further generated a variable named the COVID Cautiousness Scale to indicate the level of cautious behaviors during the pandemic. Specifically, we added up all the COVID-related behavioral questions for which the respondent indicated a yes.

Each yes was assigned a value of one (1). Therefore, score on the 170 Delaware Journal of Public Health - September 2021

COVID Cautiousness Scale range from 0 to 11. A higher score indicates the respondent displayed more cautious behavior during the pandemic. It should be noted that this scale has not been validated as a reliable measure of COVID cautiousness for the general population. The investigators simply used this score as a proxy to measure the level of cautiousness for each participant.

Methods

To investigate prevalence of COVID vaccine uptake and COVID vaccine hesitancy in Delaware’s underserved communities, we calculated the percentages of respondents who received COVID vaccines and those who reported that they would not get the vaccines. We used the logistic regression model to predict the factors associated with vaccine hesitancy. Lastly, we ran chi-square analyses to explore whether vaccine-related concerns in the underserved communities differed by race. It should be noted that missing data is a common issue in research focused on hard-toreach populations. For some variables, we had a relatively large number of missing responses. Some of the questions might be too sensitive to answer for our participants (i.e., income) or the available answers were not applicable (i.e., number of people in household for homeless individuals). Under these circumstances, the missing variables might not be missing completely at random (MCAR). Therefore, a complete case analysis might yield biased results. In this preliminary study, we used a missing indicator approach to handle missing responses in the analysis. The missing indicator approach is suggested to be efficient when the sample size is relatively small and thus may be reasonably applied to the present study.13

RESULTS Table 1 displays characteristics of the sample. The percentage of missing responses for the covariates was included. The average age of the sample was 44.36 (SD=14.55). Blacks were oversampled; 73% of the sample identified as black, and 27% identified as white, Asian, Native American, and others. We grouped all the non-black respondents into “other races.” About half of the respondents identified as male and half as female (see Table 1).

Regarding the highest educational level, 21% reported less than high school, 43% received a high school diploma, and 32% reported having at least some college degree. In terms of current employment status, 41% reported that they were working, 25% were unemployed, and 25% were not in the labor force. Moreover, 48% of our sample reported that their 2020 household family income was less than $20,000. In terms of job status during COVID, 34% of the respondents reported that they experienced job loss. The average number of people living in the household was 2.44 (SD=1.73), and 82% of respondents had health insurance. To measure participants’ behaviors and cautiousness during the pandemic, we constructed a COVID cautiousness scale using a set of questions on the survey. The average score was 8.56 (SD=3.31).

Regarding COVID testing and vaccine status, 65% of our sample have tested for COVID infection in the past, and 15% of the sample indicated that they have at some point received a positive COVID test result. Thirty percent of our sample has received at least one dose of the COVID vaccine. It should be noted that this number is smaller than the average reported for Delaware overall, 53%. In terms of vaccine hesitancy, 60% of the unvaccinated sample were categorized as vaccine hesitant (42% of the total sample).

Table 1 – Study Characteristics Sample size

293

Socioeconomic and demographic characteristics Race (%) Black

73.13

Others (Whites, Asian, Native American, and Others)

26.87

Total

100

Mean age

44.36 (SD=14.55)

Missing on age (%)

24.49

Sex Male

48.98

Female

48.98

Missing

2.04

Total

100

Education (%) Less than high school

21.09

High school diploma

42.86

Some college degree and higher

31.63

Missing

4.42

Total

100

Current employment status Working

40.48

Unemployed

24.49

Not in labor force

24.83

Missing

10.20

Total

100

Health Insurance (%)

81.98

Job loss during COVID (%)

33.67

Family income in 2020 <$20,000 (%)

47.96

# of people in the household Missing on # of people in household (%) COVID Cautiousness scale

2.44 (SD=1.73) 27.21 8.56 (SD=3.31)

COVID testing questions Tested for COVID (%)

65.19

Tested Positive for COVID among tested (%)

14.68

COVID Vaccine Questions Covid Vaccine (%)

30.38

Vaccine hesitancy among not vaccinated (%)

60.29

Vaccine hesitancy among all sample (%)

41.98

171

Table 2 presents odds ratios of the logistic regression model predicting vaccine hesitancy. The outcome of interest was the binary variable indicating vaccine hesitancy. Vaccine hesitancy was coded 1 and otherwise 0. The covariates included demographics (i.e., race, age, square of age, and sex), socioeconomic characteristics (i.e., educational level, current employment status, health insurance, job loss experience during the pandemic, and number of people in the household), COVID-related behavior and testing characteristics (i.e., COVID Cautiousness scale, tested for COVID, and tested positive for COVID). We also included indicators for survey month to control for the changing vaccine policies over time. Finally, a set of variables indicating missing data were included as covariates (see Table 2).

Results from the logistic regression estimates suggested that being black (OR=2.02, p=0.035) increased the odds of vaccine hesitancy by 100% compared to other races while holding all the covariates constant. Another noteworthy significant result involved COVID testing (OR=0.4340, p=0.016). Results indicated that if the respondents had tested for COVID in the past, the odds of vaccine hesitancy decreased by 57% while holding all the covariates constant. The missing indicator on education is also statistically significant at the p <0.05 level, further indicating that missingness on education might have significant effect on vaccine hesitancy. Other than being black and having tested for COVID, we did not find other significant effects of demographic and socioeconomic characteristics on vaccine hesitancy.

We took the mean of each of the covariates in the logistic regression model and estimated the predicted probabilities of vaccine hesitancy for blacks and others (see Figure 2). The predicted probability of vaccine hesitancy for blacks was 0.42 (SE=0.04) and for others was 0.26 (SE=0.06) for a typical Delawarean living in underserved communities.

Finally, our survey included a set of questions about concerns potentially contributing to vaccine hesitancy among blacks in DE’s underserved communities. The set of concerns included: (1) I am allergic to vaccines; (2) I don’t like needles; (3) I’m not concerned about getting sick from COVID; (4) I’m concerned about side effects; (5) I don’t think vaccines work well; (6) I don’t trust that the vaccine will be safe; (7) I don’t believe the COVID pandemic is as bad as they reported; (8) I don’t want to pay for it; and (9) I don’t know enough about how well the vaccine works.

A simple percentage calculation reported that among those respondents who expressed vaccine hesitancy, 33% were concerned about side effects, 25% did not trust the vaccine would be safe, and 21% indicated that they did not like needles.

We conducted chi-square analyses to evaluate whether there were any significant differences in vaccine-related concerns between blacks and non-blacks (see Table 3). At the p < 0.1 level, the chisquare test result suggested that more blacks expressed concern

Figure 2. Predicted Probabilities of Vaccine Hesitancy by Race in DE’s Underserved Communities

172 Delaware Journal of Public Health - September 2021

Table 2. Logistic Regression Predicting Vaccine Hesitancy Odds Ratio

Robust SE

P value

2.0161*

0.6689

0.035

REF

REF

REF

Age

1.0994

0.1066

0.328

Square of age

0.9982

0.0012

0.129

Missing on age

0.5038+

0.1924

0.073

Male

1.4078

0.407

0.237

Missing on sex

0.9255

0.9394

0.939

Less than high school

REF

REF

REF

High school diploma

0.8860

0.3461

0.757

Some college degree and higher

0.7654

0.3329

0.539

Missing on education

0.1019*

0.1007

0.021

Currently working

1.2171

0.4741

0.614

Currently unemployed

1.4204

0.5705

0.382

REF

REF

REF

Missing on employment information

1.6553

0.8945

0.351

Have health insurance

1.0315

0.4275

0.940

Job loss during COVID

1.1365

0.352

0.680

Family income in 2020 <$20,000

1.6635

0.6004

0.159

# of people in the household

0.8482+

0.0835

0.095

Missing on # of people in household

0.4608+

0.2019

0.077

COVID Cautiousness scale

1.0142

0.0469

0.760

Tested for COVID

0.4340*

0.1499

0.016

Tested Positive for COVID among tested

0.8794

0.3723

0.762

Mar-2021

REF

REF

REF

Apr-2021

1.7026

0.6262

0.148

May-2021

1.2958

0.5253

0.523

0.3202

0.6528

0.576

Black Others

Currently not in labor force

Survey was conducted in

Constant Pseudo R2 = 0.1909 N=293

Table 3. Concerns of COVID Vaccine Among Respondents Who Expressed Vaccine Hesitancy Sample (%)

Black (%)

Others (%)

Chi2 test

P value

(1) I’m allergic to vaccines

5.69

7.22

0

1.9895

0.158

(2) I don’t like needles

21.14

18.56

30.77

1.8345

0.176

(3) I’m not concerned about getting sick from COVID

13.01

11.34

19.23

1.1281

0.288

(4) I’m concerned about side effects

32.52

31.96

34.62

0.0659

0.797

(5) I don’t think vaccines work well

8.94

11.34

0

3.2380+

0.072

(6) I don’t trust that the vaccine will be safe

25.2

23.71

30.77

0.5418

0.462

(7) I don’t believe the covid pandemic is as bad

2.44

1.03

7.69

3.8236+

0.051

(8) I don’t want to pay for it

3.25

3.09

3.85

0.037

0.847

(9) I don’t know enough about how well the vaccine works

18.7

16.49

26.92

1.4667

0.226

N

123

97

26 173

that the vaccine would not work well compared to others in the sample (Chi2=3.24, p=0.072). Another significant result was that more non-black respondents indicated that they did not believe the pandemic was as bad as reported compared to blacks.

workers, friends, and family. During these conversations, those who have received the vaccine can share personal accounts of their experience. This particular strategy has been shown to be effective at reducing hesitancy at the local level.14

DISCUSSION

Notably, strategies to combat hesitancy would greatly benefit from collaborations with trusted community partners (academic, healthcare providers, and community agencies) and the implementation of public health initiatives.16 Such efforts would help build targeted public health approaches between underserved minority communities and the medical community to address the longstanding health disparities that predate the COVID-19 pandemic. While COVID-19 is a public health emergency of international concern, as declared by the World Health Organization (WHO) in July 2020, efforts to combat the pandemic and its sequelae must begin at the local level.14,17 The present study demonstrates the benefits of working with community partners in determining vaccine hesitancy issues, and it is believed that the same community partnerships may aid in carrying out strategies to alleviate vaccine concerns. There is a great need for innovative public health projects/programs that circulate timely, evidence-based information to targeted audiences (e.g., social media, online platforms, local news outlets, occupational health clinics, and other traditional methods) while also focusing on community engagement. Key elements to reduce vaccine hesitancy should be practical and aimed toward minority ethnic groups with low vaccine uptake to reduce misinformation and increase confidence.16

The COVID-19 pandemic has caused a major disruption to people’s lives on a global scale. COVID testing and vaccines are essential to combat the pandemic. Recent research has suggested that economically vulnerable communities across the country have been more severely affected by the pandemic. Testing and vaccine rates among these communities remain lower than other communities. It is important to explore the factors that potentially contribute to vaccine hesitancy in vulnerable communities. Our study represents a first step to understanding the determinants driving COVID vaccine uptake and hesitancy. Identifying key factors and causes for vaccine hesitancy and ways to counteract low vaccination uptake are primary steps to addressing this issue.

Interventions to address and improve uptake levels specific to this study may inform other communities in their pursuits to increase vaccine uptake while also providing incite on how to reduce health disparities among vulnerable populations now and in the future.

Results from our survey indicated that vaccine uptake is lower in Delaware’s underserved communities than Delaware overall and the national average. In addition, a considerable proportion of participants were categorized as vaccine hesitant. We also found that being Black increased the likelihood of vaccine hesitancy for the COVID-19 vaccine, which is consistent with prior studies on vaccine hesitancy. However, we did not find that demographic or socioeconomic characteristics play a role in vaccine hesitancy in Delaware’s underserved communities.

Underserved communities show lower rates of COVID vaccination when compared to others, and many of the respondents in our survey indicated that they would not get the vaccine. These attitudes, along with other risk factors, could prolong the health crisis for underserved communities. Our study has important implications for public health. For instance, it may be beneficial for government and public health services to reach out to vulnerable communities and spread awareness about the safety, effectiveness, and importance of getting vaccinated for COVID-19. Harrison indicated that vaccine hesitancy surrounding the COVID-19 vaccine involves several subthemes, including public and individual concerns about vaccine safety and effectiveness, lack of trust regarding vaccination efforts, vaccine misinformation, and the push for vaccine uptake.14 Many of our participants indicated that they do not think the vaccine works well or do not know enough about how well it works. Such knowledge might be limited among vulnerable communities for a variety of reasons, such as lower health literacy; lack of access to primary care; socioeconomic status; political, religious beliefs and values; and lack of outreach among these communities.15

Public Health Implications

Specific efforts to understand the surrounding community and causative factors for hesitancy will be further explored as our survey continues. Potential solutions to vaccine hesitancy might involve increased communication on the benefits and safety of vaccines, in addition to targeted approaches that address specific hesitancy issues in a given community. Other strategies that can be employed to reduce hesitancy include encouraging conversation among local community members, neighbors, co174 Delaware Journal of Public Health - September 2021

DISCLOSURES This project is supported by the National Institute of Health (Grant number: 3 P20 GM103653-09S1)

ACKNOWLEDGEMENTS The authors would like to thank Mr. Matthew Billie, student interns, and student nurses for their support in data collection.

They would also like to thank the community partners Wilmington Hope Commission and the Sussex County Health Coalition for their support. Lastly, the authors would like to thank the Delaware CTR ACCEL for providing REDcap access to conduct the survey and Drs. Suzanne McCahan and Stephan DiDonato for their assistance using REDcap.

REFERENCES 1. Carney, J. (2021, Mar 30). COVID-19 Vaccination Program Will Open to Delawareans 16+ on April 6. Retrieved from: https://news.delaware.gov/2021/03/30/covid-19-vaccinationprogram-will-open-to-delawareans-16-on-april-6/ 2. Recht, H., & Weber, L. (2021, Jan). Black Americans are getting vaccinated at a lower rates than White Americans. Kaiser Health News. Retrieved from: https://khn.org/news/article/black-americans-are-gettingvaccinated-at-lower-rates-than-white-americans/ 3. Butler, R., & MacDonald, N. E., & the SAGE Working Group on Vaccine Hesitancy. (2015, August 14). Diagnosing the determinants of vaccine hesitancy in specific subgroups: The Guide to Tailoring Immunization Programmes (TIP). Vaccine, 33(34), 4176–4179. https://doi.org/10.1016/j.vaccine.2015.04.038 4. World Health Organization. (2019). Ten Threats to Global Health 2019. Retrieved from: https://www.who.int/news-room/spotlight/ten-threats-toglobal-health-in-2019

5. Fisher, K. A., Bloomstone, S. J., Walder, J., Crawford, S., Fouayzi, H., & Mazor, K. M. (2020, December 15). Attitudes toward a potential SARS -CoV-2 vaccine: A survey of US adults. Annals of Internal Medicine, 173(12), 964–973. https://doi.org/10.7326/M20-3569 6. Kreps, S., Prasad, S., Brownstein, J. S., Hswen, Y., Garibaldi, B. T., Zhang, B., & Kriner, D. L. (2020, October 1). Factors associated with us adults’ likelihood of accepting COVID-19 Vaccination. JAMA Network Open, 3(10), e2025594. https://doi.org/10.1001/jamanetworkopen.2020.25594 7. Pogue, K., Jensen, J. L., Stancil, C. K., Ferguson, D. G., Hughes, S. J., Mello, E. J., . . . Poole, B. D. (2020, October 3). Influences on attitudes regarding potential COVID-19 vaccination in the United States. Vaccines, 8(4), 582. https://doi.org/10.3390/vaccines8040582 8. Troiano, G., & Nardi, A. (2021, May). Vaccine hesitancy in the era of COVID-19. Public Health, 194, 245–251. https://doi.org/10.1016/j.puhe.2021.02.025 9. Doherty, I., Pilkington, W., Brown, L., Billings, V., Hoffler, U., Paulin, L., & Kumar, D. (2021). COVID-19 vaccine hesitancy in underserved communities of North Carolina. MedRxiv. DOI: https://doi.org/10.1101/2021.02.21.21252163 10. Karpman, M., Kenney, G. M., Zuckerman, S., Gonzalez, D., & Courtot, B. (2021). Confronting COVID-19 vaccine hesitancy among nonelderly adults. Robert Wood Johnson Foundation and Urban institute Retrieved from: https://www.rwjf.org/en/library/research/2021/02/confrontingcovid-19-vaccine-hesitancy-among-nonelderly-adults. html 11. MacDonald, N. E., & the SAGE Working Group on Vaccine Hesitancy. (2015, August 14). Vaccine hesitancy: Definition, scope and determinants. Vaccine, 33(34), 4161–4164. https://doi.org/10.1016/j.vaccine.2015.04.036

12. Kantamneni, N. (2020). The impact of the COVID-19 pandemic on marginalized populations in the United States: A research agenda.

13. Sperrin, M., Martin, G. P., Sisk, R., & Peek, N. (2020, September). Missing data should be handled differently for prediction than for description or causal explanation. Journal of Clinical Epidemiology, 125, 183–187. https://doi.org/10.1016/j.jclinepi.2020.03.028 14. Harrison, J., Berry, S., Mor, V., & Gifford, D. (2021, June).

“Somebody like me:” Understanding COVID-19 vaccine hesitancy among staff in skilled nursing facilities. Journal of the American Medical Directors Association, 22(6), 1133–1137. https://doi.org/10.1016/j.jamda.2021.03.012 15. Lackner, C. L., & Wang, C. H. (2021, August). Demographic, psychological, and experiential correlates of SARS-CoV-2 vaccination intentions in a sample of Canadian families.

Vaccine: X, 8, 100091–100091. https://doi.org/10.1016/j.jvacx.2021.100091 16. Robertson, E., Reeve, K. S., Niedzwiedz, C. L., Moore, J., Blake, M., Green, M., . . . Benzeval, M. J. (2021, May). Predictors of COVID-19 vaccine hesitancy in the UK household longitudinal study. Brain, Behavior, and Immunity, 94, 41–50. https://doi.org/10.1016/j.bbi.2021.03.008 17. World Health Organization. (2020, December 24). Ten global health issues to track in 2021. Retrieved from: https://www.who.int/news-room/spotlight/10-global-healthissues-to-track-in-2021

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DEMENTIA – LEXICON Alzheimer’s Disease A neurodegenerative process that includes the destruction of brain cells and changes in cognition and behavior that make a person unable to function independently. It is the most frequent cause of cognitive decline in later life.

Atlantoaxial Instability (AAI) A condition that affects the bones in the upper spine or neck under the base of the skull. The joint between the upper spine and base of the skull is called the atlanto-axial joint. In people with Down syndrome, the ligaments (connections between muscles) are “lax” or floppy.

Aphasia Loss of or impaired ability to understand or express language (or both).

Cerebral Cortex The outer layer of the upper part of the brain, composed of folded gray matter and playing an important role in consciousness..

Cognitive Decline An acquired impairment of one or more of the following important domains of brain function: memory, new learning, multitasking, problem-solving, abstraction, language expression or comprehension, visuospatial function, or social cognition. This is often self-reported.

Dementia A general term for an acquired cognitive decline severe enough to interfere with independent functioning (i.e.: loss of memory, language, problem-solving and other thinking abilities, etc.). This term has been replaced by the term “Major Neurodegenerative Disorder.”

Disparities Differences.

Frontal Temporal Dementia A neurocognitive disorder occurring less frequently than Alzheimer’s Disease. It affects approximately 5% of those with dementia, and often effects behavior and language in its early stages.

Incidence TThe occurrence of new cases of disease or injury in a population over a specified period of time.

Lewy Body Disease A progressive neurodegenerative disorder that leads to a decline in thinking, reasoning and independent function because of damaging microscopic deposits in brain cells. These deposits are different than the plaques and tangles seen in Alzheimer’s Disease.

Neocortical The large 6-layered top region of the cerebral cortex that is unique to mammals.

Prevalence The proportion of persons who have a condition at or during a particular time period

Sensitivity The ability of a test to detect the health problem that it is intended to detect.

Specificity The ability of a test to correctly generate a negative result for people who don’t have the condition.

Vascular Dementia A common type of acquired cognitive decline caused by damage to the flow of blood to the brain, which results in damage to brain cells.

176 Delaware Journal of Public Health - September 2021

DEMENTIA – RESOURCES National Resources Alzheimer’s Association: https://www.alz.org Greater Philadelphia Chapter: https://www.alz.org/pa Alzheimer’s Disease and Down Syndrome: https://www.ndss.org/resources/alzheimers/ American Academy of Developmental Medicine & Dentistry: https://www.aadmd.org American Association on Intellectual & Developmental Disabilities: www.aaidd.org Center for Developmental Disabilities Evaluation & Research: https://shriver.umassmed.edu/programs/cdder/aging_idd_education/ Geriatric Care Managers: https://www.agingcare.com/local/geriatric-care-managers/de https://www.aarp.org/caregiving/basics/info-2020/geriatric-care-manager.html https://www.nia.nih.gov/health/what-geriatric-care-manager Jenny’s Diary: https://www.learningdisabilityanddementia.org/jennys-diary.html Learning (Intellectual) Disability & Dementia: https://www.learningdisabilityanddementia.org/ Medicaid Waiver Program: https://assist.dhss.delaware.gov/ National Down Syndrome Society (NDSS): https://www.ndss.org/ National Task Group on Intellectual Disabilities & Dementia Practices (NTG): https://www.the-ntg.org/

Delaware Resources Behavioral Health Consortium: https://ltgov.delaware.gov/behavioral-health-consortium/ Delaware Aging and Disability Resource Center: http://www.delawareadrc.com/ Delaware Association of Home and Community Care: https://dahcc.org/ Delaware Health and Social Services, Services for Aging and Adults with Physical Disabilities: https://dhss.delaware.gov/dhss/ dsaapd/alzheimers_toolkit.html Delaware Nursing Home Residents Quality Assurance Commission: https://courts.delaware.gov/dnhrqac/ Delaware Senior Resource Network: https://www.delawareseniorresourcenetwork.com/ Easterseals Delaware & Maryland’s Eastern Shore: https://easterseals.com/our-programs/adult-services Jefferson Elder Care: http://www.jefferson.edu/university/health-professions/jefferson-elder-care.html Jewish Family Services, COMPASS Program: https://www.jfsdelaware.org/compass Memory Ambassadors: https://christianacare.org/es/swank-memory-ambassadors-program/.

Swank center for Memory Care and Geriatric Consultation: https://www.christianacare.org

Phone Numbers Alzheimer’s Association: 1-800-272-3900 Delaware Hope Line: 1-833-9-HOPEDE (1-833-946-7333) Medicaid Waiver Program: 1-302-451-3660 Nursing Home Residents Quality Assurance Commission, Executive Director’s Office: 302-824-2956 Incident Complaint Referral Center: 1-877-453-0012

Health Screenings, Tools, and More Aging and Down Syndrome: A Health & Well-being Guidebook: http://www.thearc.org/document.doc?id=4489 Alzheimer’s Store: https://www.alzstore.com/ American Geriatric Society Beers Criteria (Updated): http://www.ospdocs.com/resources/uploads/files/Pocket%20Guide%20to%202015%20Beers%20Criteria.pdf AGS Alternative Medications: http://www.healthinaging.org/files/documents/tipsheets/BeersAlternatives_2015.pdf Charting the Life Course: http://www.lifecoursetools.com/ Check for Safety: Home Fall Prevention Checklist for Older Adults: https://www.cdc.gov/homeandrecreationalsafety/pubs/english/ booklet_eng_desktop-a.pdf Early Detection Screen for Dementia (NTG-EDSD): https://www.the-ntg.org/ntg-edsd Health Risk Screening Tool: https://replacingrisk.com/health-risk-screening-tool/ PCHC Differential Diagnosis Considerations for Symptoms of Dementia: https://www.pchc.org/images/PDFs/Forms/Dementia_ Differential_Diagnosis_Checklist_1118.pdf Vanderbilt Healthcare Toolkit for Adults with ID/DD: https://iddtoolkit.vkcsites.org/ For more information please contact: E. Adel Herge (Adel.Herge@jefferson.edu) or Mary M. Stephens (Mary.Stephens@jefferson.edu)

177

Delaware Journal of

Public Health

Submission Guidelines

updated April, 2020

About the Journal Established in 2015, The Delaware Journal of Public Health is a bi-monthly, peer-reviewed electronic publication, created by the Delaware Academy of Medicine/Delaware Public Health Association. The publication acts as a repository of news for the medical, dental, and public health communities, and is comprised of upcoming event announcements, past conference synopses, local resources, peer-reviewed content ranging from manuscripts and research papers to opinion editorials and personal interest pieces, relating to the public health sector. Each issue is largely devoted to an overarching theme or current issue in public health.

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Information for Authors Submission Requirements The DJPH accepts a wide variety of submission formats including brief essays, opinion editorials pieces, research articles and findings, analytic essays, news pieces, historical pieces, images, advertisements pertaining to relevant, upcoming public health events, and presentation reviews. If there is an additional type of submission not previously mentioned that you would like to submit, please contact a staff member.

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2. The public health importance of the paper.

3. One sentence summarizing the main message(s) of the paper, which may be used to disseminate the paper on social media.

The initial submission should be clean and complete, without edits or markups, and contain both the title and author(s) fulls name(s). Submissions should be 1.5 or 4. For individual or group randomized trials, provide the double spaced with a font size of 12. Initial submissions date of trial registration and the NCT number from must also contain a cover letter with concise text www.Clinicaltrials.gov or other approved registry. (maximum 150 words). Once completed, articles In the cover letter only, not in the paper. Do NOT should be submitted via email to Elizabeth Healy at include the trial registration or NCT number in the ehealy@delamed.org as an attachment. Graphics, images, abstract or the body of the manuscript during the info-graphics, tables, and charts, are welcome and initial submission. encouraged to be included in articles. Please ensure that all pieces are in their final format, and all edits and track All manuscripts must be submitted via email to Elizabeth Healy at ehealy@delamed.org. changes have been implemented prior to submission.

178 Delaware Journal of Public Health - September 2021

To view additional information for online submission requirements, please refer to the website for the Delaware Journal of Public Health: https://djph.org/sample-page/submit-an-article/.

Submission Length While there is no prescribed word length, full articles will generally be in the 2500-4000-word range, and editorials or brief reports will be in the 1500-2500-word range. If you have any questions regarding the length of a submission, or APA guidelines, please contact a staff member.

Copyright Opinions expressed by contributors and authors do not necessarily reflect the opinions of the DJPH or affiliated institutions of authors. Copying for uses other than personal reference or interest without the consent of the DJPH is prohibited. All material submitted alongside written work, including graphics, charts, tables, diagrams, etc., must be referenced properly in accordance with APA formatting.

Conflicts of Interest Any conflicts of interest, including political, financial, personal, or academic conflicts, must be declared prior to the submission of the article, or in conjunction with a submission. Conflicts of interest are any competing interests that may leave readers feeling misled or deceived, and/or alter their perception of subject matter. Declared conflicts of interest may be published alongside articles in the final electronic publication.

Additional Documents and Information for Authors Please Note: All authors and contributors are asked to submit a brief personal biography (3 sentences maximum) and a headshot along submissions. These will be published alongside final submissions in the final electronic publication. For pieces with multiple authors, these additional documents are requested for all contributors.

Abstracts Authors must submit a structured or unstructured abstract along with their article.

The word limit is 200 words, including headings. A title page should be submitted with this abstract as well.

Structured abstracts should employ 4-5 headings: Objectives (begins with “To…”) Methods Results Conclusions A fifth heading, Policy Implications, may be used if relevant to the article.

Trial Registration information is required for clinical trials and must be included in the final version abstract All abstracts should provide the dates(s) and location(s) of the study is applicable.

Note: There is no Background heading.

Nondiscriminatory Language Use of nondiscriminatory language is required in all DJPH submissions. The DJPH reserves the right to reject any submission found to be using sexist, racist, or heterosexist language, as well as unethical or defamatory statements.

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Index of Advertisers The Nation's Health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 American Public Health Association ChristianaCare's Continuing Medical Education. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 ChristianaCare The DPH Bulletin - August 2021 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 Delaware Division of Public Health 2021 John Scholz Stroke Education Conference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Medical Society of Delaware 13th Annual Delaware Histories Makers' Award. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Delaware Historical Society Prevent Opioid Misuse. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89 Center for Disease Control Making the Decision . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167 Public Health Communications Collaborative Submission Guidelines. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178 Delaware Journal of Public Health

180 Delaware Journal of Public Health - September 2021

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Delaware Academy of Medicine / DPHA 4765 Ogletown-Stanton Road Suite L10 Newark, DE 19713

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The Delaware Academy of Medicine is a private, nonprofit organization founded in 1930. Our mission is to enhance the well being of our community through medical education and the promotion ofpublic health. Our educational initiatives span the spectrum from consumer health education tocontinuing medical education conferences and symposia.

The Delaware Public Health Association was officially reborn at the 141st Annual Meeting of the American Public Health Association (AHPA) held in Boston, MA in November, 2013. At this meeting, affiliation of the DPHA was transferred to the Delaware Academy of Medicine officially on November 5, 2013 by action of the APHA Governing Council. The Delaware Academy of Medicine, who’s mission statement is “to promote the well-being of our community through education and the promotion of public health,” is honored to take on this responsibility in the First State.

ISSN 2639-6378