Institute on Aging's Dementia Ecosystem

Does dementia affect someone you love?

I was 45 when my mom, Evelyn, first showed signs of dementia…she was only 68.

We both felt too

young! I had no

idea what to do, where to get help, or how to start. From day one, I was completely

overwhelmed.

I was told the first step was to get a neuropsychologist – how do you find a

neuropsychologist?!

That step and every step after was a struggle.

Everything about dementia is a long and complicated process.

Not to mention the

heartbreak –

some days my mom knows me…some days she doesn’t know who I am. It’s like I’m slowly watching her

fade away.

Because my siblings live far away, I am my mom’s primary caregiver. Finding a way to balance taking care of her and my life has been near

impossible. I found myself at a

crossroads – I needed space from my mom to concentrate on work and get a break. Her care and supervision is a demanding 24/7 job!

But, my mom also needed a full life with social engagement. It’s not easy to find solutions, and there are

limited care options for those

with dementia.

I finally found an amazing enrichment day center for those with dementia at the Institute on Aging. It’s been an incredible

help

since I get a break and can focus at work.

And my mom does better when she attends; she’s more social and aware. It’s been a huge

relief! I am excited they have found a new space because their building is closing. The new location in the Presidio is beautiful and peaceful - perfect for my mom.

I felt totally

alone. But I realized I wasn’t when I saw the numbers.

#1

1:05

65

seconds is how long it takes for another person in the U.S. to be diagnosed with dementia.

caregivers are family and friends.

Caregivers experience physical, emotional and financial stress.

80

percent of those with dementia live at home.

1in2

36%

people age 85+ in the Bay Area has dementia.

increase in those diagnosed with dementia by 2020 in San Francisco.

They are

staggering.

152,164 18.4

The average annual cost for formal and informal care for a person with dementia in San Francisco is

$

billion hours of care, valued at $232 billion, are provided by family and other unpaid caregivers.

These caregivers experience physical, emotional and financial stress.

Projected number of people 65 and older in the U.S. with Alzheimer’s Dementia Millions of people with Dementia

13.8 11.6

8.4

5.8 4.7

2010

2020

2030

2040

2050

My mom’s care is totally fragmented and disconnected.

senior centers

home services

hospice?

Evelyn’s in-home care

ho me nursing home?

assisted living?

Evelyn

support group

ort p p su my family support

respite care

mom’s day center professional in-home care

I dream of having a guide that can help me navigate this.

aging resource center community services

n tio a uc d e

education

n tio a orm f | in

money management

public policy

research

power of attorney legal

government aid & services

will

s vice r e s l lega

trust primary care physician

diagn osis

medical care

care manager

doctors

on-going medical treatment

mental health treatment

Someone with a map who can show me the way.

neuropsychologist

hospitals

nurses

You need a GUIDE.

No family should face dementia alone! We envision a world where those with dementia and their loved ones have a guide to help them through this life altering diagnosis, an ecosystem where they will find comfort, guidance, support, services, and education at any stage. We will accomplish this with a model where the wellbeing of the whole family is just as important as that of the person with dementia. Ultimately, this system will not only provide needed services but ensure that no one feels alone as they travel through this journey.

Medical Professionals

We envision creating an Ecosystem that provides much needed care and support for all who are impacted by dementia: the person diagnosed and their loved ones. Far beyond a 9-5 program, this system will provide families with support when and how they need it, whether it be during a sundowning episode or in the early morning hours. Connecting those in need with existing services as well as offering a new service that can respond in the moment of need, anyone could call any time and find a trusted partner 24/7 who can guide them to the best options in the moment.

In-Home Care

Residential Options

Legal

Enrichment Programs

Support Groups

Insurance

OUR VISION:

AN ECOSYSTEM WHERE THE WE THE PERSON WITH DEMENTIA.

A dementia diagnosis is not only life altering, it can feel life shattering for the person diagnosed and for those who love them. It’s an emotional blow that leaves you feeling lost and afraid. And once you wade through the emotional trauma, it’s near impossible to navigate the system to get the necessary care. We want to change all that with an ecosystem that supports the lives of those impacted and eases the challenges they experience. This system will provide 24-hour guidance, services, and mental and emotional support to the families impacted by dementia. We will be a trusted partner and guide from day one.

immediately when needed, helping loved ones handle daily challenges that all too often end in hospital visits. Current research shows that many families turn to emergency rooms when their loved one is agitated or showing challenging behavioral problems. They go to the ER because they have no other options or ideas. Our new system will provide 24-hour phone support to provide guidance and available options, including home care services, giving families much needed help in the moment.

This will be a 360-degree whole person and community program centered around the person with dementia and their family. At its core, the ecosystem aims to create as fulfilling, meaningful, and rewarding a life as possible for the person with dementia and their loved ones. Life does not end with a diagnosis. We will help to make the most of each day.

Creating meaningful days for those with dementia and their families begins with specialized care inside and outside the home with cognitively stimulating activities, arts, and other hobbies. When there are bad days – and we know those happen – we will provide respite care for family caregivers and a behavioral health team to help families cope with the emotional strain.

Our comprehensive system will connect families with our current services such as specialized home care, fiduciary, behavioral health counseling, enrichment day programs, and transportation services, as well as external healthcare providers, medical specialists, advocacy groups, and research organizations. Our goal is to provide assistance

Moreover, the system will include a more robust version of our Friendship Line, a warm line for older adults experiencing loneliness and isolation. The new enriched call center will provide the entire family with a mental health outlet to alleviate some of the emotional trauma experienced. What once was a confusing and chaotic healthcare map will be streamlined and easier for families to navigate, providing much needed respite in a difficult time.

We are seeking seed funding to develop the pilot for this vision, with the goal of creating a self-sustaining model. As the ecosystem is created, we will develop partnerships with health plans and government payers to build a functioning financial model. Our larger vision is that this scalable, self-sustaining model will be replicated by other organizations in any community that shows a need across the country.

As the ecosystem builds community support through an awareness campaign, our intent is to change the conversation around dementia from one of fear and apprehension to understanding and empathy. Through this model, we aim to give hope, relief, and support to thousands of those impacted by dementia in San Francisco each year.

ELL-BEING OF THE WHOLE FAMILY IS JUST AS IMPORTANT AS

FIN AN

S

EGIVER

CIALISTS L SPE

C AR

GA / LE

D ONES LOVE

L IA

SUPPOR T GR OU

P

C

UN COMM ITY

EALTH CARE H

PERSON WITH DEMENTIA

O PSYCHOL

W L A C I G

EN TER S

EL

LBE

IN G

EN HM IC ENR

TC

MAKING THE VISION A REALITY Actualizing the world-renowned ecosytem of excellence for memory-care, a comprehensive hub for those impacted by dementia.

The robust system will support thousands of individuals impacted by this disease including those diagnosed or showing signs, their families, and caregivers. Here, these individuals will find a hub connecting them to resources for all their needs. Additionally, a system of this magnitude will grow community support and awareness, creating more social understanding about the needs of people with dementia.

home care

Future Presidio home of our Enrichment Day Program

As the ecosystem grows roots in its pioneering work, additional enrichment day programs and other support systems can be expanded to more neighborhoods.

The goal: to build a self-sustaining system that can support older adults with dementia, their families, and caregivers throughout San Francisco.

Theecosystem serves as the model for similar programs throughout the country with its replicable structure. By providing care and support coupled with academic medical centers, advocacy groups, and other community partners, this gift will put San Francisco on the map as the most dementia supportive community in the country.

lifelong family support

24/7 availability

social connections

art therapy

tele-care

THE FUTURE: PRESIDIO LOCATION After two years of searching IOA has found the perfect fit for the new location in the revered Presidio.

The Presidio and the Presidio Trust have a longstanding history in San Francisco as does Institute on Aging. Whether it be through an incredible and welcoming park in the epicenter of a busy city or programs to provide places for elders, both organizations want a space for “inspiration, education, health, and enjoyment of all people.” These organizations want to partner to build a new space for the Enrichment Day Center. After all, the Institute is attempting to do the same as the Trust, “Saving and Sharing an American Landmark,” for what are our elders if not landmarks of our culture and society.

The Trust provides the perfect space for our Enrichment Day clients to thrive; the beauty and open spaces the Presidio delivers the perfect fit, including:

n

n n n n n

Meets required footprint and allows us to serve over 300 families Beautiful open spaces providing outdoor exploration Within two miles of current location Bus and parking access Least disruptive transition for clients Family friendly location

Last, but certainly not least a program such as this, contributes to the diversity of San Francisco. Many families with young children and seniors are being pushed out of San Francisco due to housing costs. It is imperative for a society to have many generations and intergenerational interactions to build a strong culture.

Carving out a space for seniors in the diversity of San Francisco only helps everyone.

YOUR LEGACY. A transformative gift of $20 million will open up a whole new world to those with dementia.

This gift creates a lasting legacy for the donor, whose namesake will be the title of the ecosystem, interlacing a family name with the betterment of the lives of those impacted by dementia.

An opportunity for the donor to act on their deeply held values, this gift will be a public testament of their dedication to creating life changing transformations for some of our community’s most vulnerable members As the beginning of a legacy, this gift will launch the pilot to create self-sustaining programs that will impact thousands for years to come.

Implementing the New Vision : Anticipated Investment Areas 24-Hour Guide Program Caregiver Support Community Awareness Campaign New Enrichment Centers in Other Geographic Areas Education and Trainings Specialized Home Care

Implementing the Vision Total $15,000,000

Thank you for your consideration. Questions?

Please contact: Tom Briody at tbriody@ioaging.org/415-750-4100

The Leadership of The Institute on Aging

J. Thomas Briody, MHSc President and CEO I am the third generation of family serving the needs of older adults. My grandmother recognized that there were many older people in her community that had no one to care for them and opened a “home for the aged”. My career has been dedicated to helping people to age in a healthier way. I am now experiencing this world in a much more personal way. My parents are 88 years old with early signs of dementia. While I should be “expert” in this arena, when you add the emotional aspects of it being your loved one, experience isn’t enough.

Roxana R. Blades, MBA Chief Financial and Administrative Officer My mother Rosa was diagnosed with Alzheimer’s in 2003 and passed away in October. During the 14-year span, my mother slowly deteriorated: reverted to her native language, lost her ability to walk, feed herself, etc. She also lost her ability to recognize her husband, daughters, grandchildren, and other loved ones. This experience has made our family stronger and we now talk about what we would want if diagnosed. Thank you to my mother for always showing us the path and how to face challenges.

Aaron McPherson, DPT, MBA Vice President of Integrated Care Services

Jacqueline Murray , MBA Vice President of Marketing and Communications

I have dedicated my career, at first clinically, and now administratively to serving older adults with dementia and other neurological disorders. I have continued to find that work is most fulfilling when I am able to connect with individuals with different stages of dementia at their level and provide care with dignity. It means so much to watch these individuals continue to live meaningful lives and to support their families through the aging process.

My stepfather passed away from dementia, at the end he couldn’t recognize me and always thought I was his sister. It was a long and difficult road for all of us: him, my mother, and myself. Living in Hawaii, we had no services or aid, and had no idea what the best next steps were – and my mom is a nurse!

We felt lost at sea. We muddled through and ultimately moved him to California for better care. I would have given anything to have someone guide us through it

Janice Vorfeld Chief Operating Officer I’ve been a hospice volunteer for years and have supported patients with Alzheimer’s disease. But none of that prepared me for being in the trenches with my family.

When my Dad was diagnosed with cancer, I jumped in to help. But I quickly realized that his caregiver, my step mom, was suffering from dementia, and Dad had been hiding it from us. By the time he died, she needed full time care. His only ask of us was that we make sure she was taken care of.

My brother and I did all we could but it’s so hard to navigate this disease.

Patrick Arbore, EdD Director & Founder, Friendship Line A population of people <60 who were mostly invisible in the 1980’s were people who experienced HIV Associated Dementia. I still recall with shock and horror the added grief when friends, who had already been diagnosed with HIV, were also experiencing memory loss. Not only were their bodies ravaged, but their minds were under attack as well. I remain alarmed about the number of older people who are diagnosed with cognitive impairment. We must never forget all people who are suffering and may suffer the loss of their memories because of dementia and those who care for them.

Dustin Harper, MBA Vice President of Strategic Partnerships It wasn’t until my experience at IOA that I had any real understanding of dementia. Of course, I knew about memory loss, but I had no previous insight into the debilitating behaviors and personality changes that can occur. The psychologist who trained me used to compare the brain of someone with dementia to a scratched CD – sometimes they get stuck and when they do it is really hard to watch or listen to, but if you can help get them unstuck, they still have plenty of songs to play.

Ashley Hill Senior Director, Home Care and Support Services In high school I volunteered at Skilled Nursing Facilities, where I developed a compassion for the aging population, specifically those diagnosed with dementia, seeing first-hand the challenges of the disease process. It was then I knew my calling was in Geriatrics, as I felt a large responsibility to advocate for those who are unable to advocate for themselves. Much of my career has focused on educating both families and caregivers about dementia, and highlighting opportunities for meaningful engagement.

The Institute on Aging Institute on Aging is a 40-year young non-profit organization dedicated to preserving the dignity, independence, and well-being of aging adults and people living with disabilities. The Institute believes the future should be something to look forward to, at every age, and brings together pioneering experts, seasoned champions and hands-on caregivers to make growing older better for elders and their families.

Specializing in providing programs and services for aging adults, the Institute is a nationally recognized thought leader and sought after by the New York Times, Washington Post, San Francisco Chronicle, and others for its insight and expertise in the aging space.

As the leading advocate for older adults and those who care for them, we offer a broad spectrum of services and support to help aging adults maintain their independence.

In addition to providing home care and case management services, we operate San Franciscoâ&#x20AC;&#x2122;s Elder Abuse Prevention Program; The Friendship Line, a free 24-hour suicide prevention warm line for seniors; enrichment centers for adults experiencing Alzheimerâ&#x20AC;&#x2122;s and dementia; behavioral health, the Program of All-Inclusive Care for the Elderly (PACE), which provides medical care, and rehab; and CONNECT, a free community referral service for all things elder.

Alongside traditional care models, the Institute has developed innovative and revolutionary care management models that transform the lives of aging adults while saving the Medicaid system millions of dollars.

Offering over 20 different programs, four new major initiatives have been launched over the last five years that included geographic expansion from the Bay Area into Southern California.

These expansions have created immediate enhanced quality of life for many aging adults, and the Institute has increased the number of lives it touches from 8,000 to 20,000 over 10 years. Its ability to build self-sustaining, life transforming, and community enhancing models position the Institute as the best suited to launch an all-encompassing dementia ecosystem.

We’re answering your call on aging.

As the leading advocate for older adults and those who care for them, we offer a broad spectrum of services and support to help seniors maintain their independence as long as it is safe to do so. In addition to providing home care and case management services, we operate San Francisco’s Elder Abuse Prevention Program; The Friendship Line, a free 24-hour suicide prevention “warm” line for seniors; adult day care centers for adults experiencing Alzheimer’s and dementia; the Program of All-Inclusive Care for the Elderly (PACE), which provides medical care, physical therapy and enrichment activities for older adults; and CONNECT, a free community referral service for all things elder.

Call Institute on Aging Connect: 415.750.4111

San Francisco 3575 Geary Boulevard San Francisco, CA 94118 415.750.4111 Marin 930 Tamalpais Avenue San Rafael, CA 94901 415.750.4111 Peninsula 881 Fremont Avenue, Suite A2 Los Altos, CA 94024 650.424.1411 San Mateo County 1660 South Amphlett Boulevard, Suite 219 San Mateo, CA 94402 650.424.1411 Santa Clara County 2033 Gateway Place, 5th Floor, Suite 500 San Jose, CA 95110 408.474.0685 San Bernardino/Riverside County 3200 E Guasti Road, Suite 100 Ontario, CA 91761 909.599.2323

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