HCS PARTNERSHIP: DEMENTIA ACTION COLLABORATIVE

HCS PARTNERSHIP:

DEMENTIA ACTION COLLABORATIVE

By Lynne Korte

As of 2020, there were an estimated 120,000 people living with Alzheimer’s or other dementia in Washington, and the number is expected to rise to 140,000 by 2025. In addition, there are around 295,000 family members caring for a person with dementia. While this can be a rewarding experience, caring for a loved one with dementia can also be challenging and of long duration. The anticipated increase in the number of people with dementia spurred a call to action in 2014. The Washington state legislature authorized development of the first state plan to address Alzheimer’s disease along with the appointment of an Alzheimer’s Disease Working Group (ADWG) to accomplish the task. The ADWG, which included expertise from multiple sectors and community partners, was spearheaded by DSHS under the leadership of Bill Moss, former ALTSA Assistant Secretary. The group worked together to better understand the impacts of dementia, the needs of Washingtonians living with dementia, and the opportunities to improve our state response to address the needs. A key takeaway from this early work was the importance of connection and coordination between public health, health care and long-term care. The Washington State Plan to Address Alzheimer's Disease and Other Dementias with its 7 aspirational goals recognizes the need to collaborate over time. When the plan was published in 2016, the enabling legislation expired. The ADWG, though, wanted to see the plan implemented. With the support of DSHS, the members of the ADWG decided to continue on voluntarily and renamed themselves the Dementia Action Collaborative (DAC). The DAC has continued, fueled by the passion of its partners, to operate as an effective collaboration of multi-sector public and private partners committed to preparing our state for the future.

The DAC focused its first years on actions that could be accomplished through heightened collaboration and existing resources. Over the last several years, DAC advocates put forth several successful proposals to the state legislature to fund high-value priorities. “It takes all of us working together across the DAC

subcommittees to get all this excellent work done, said Bill Moss. “One of the very effective actions was getting the legislature to fund part-time, dedicated staffing at the HCA, DOH, and DSHS for the DAC. This allows us to reach out to both publicly-funded and private partners – to increase awareness and focus the State on dementia.” Several collaboratively developed publications such as the Dementia Road Map and Dementia Legal Planning Toolkit serve to keep the work visible and are used to start conversations Dementia – which impacts a person’s memory, problem-solving and other thinking abilities severely enough to interfere with daily living, and often accompanied by behaviors that put them at risk – cries out for a multi-sector coordinated approach from our varied systems to improve the quality of care and quality of life. “I have been consistently amazed,” said Kris Rhoads, PhD, Chair of the DAC Health Medical subcommittee and a neuropsychologist from the UW’s Memory and Brain Wellness Center, “at how many large organizations have been involved from the very beginning, and how much coordination and collaboration has shaped the shared vision and goals for the DAC. It has been so important to be able to leverage this passion into platforms that build community, including the cross-institutional work.” What has been impressive with the DAC is the ongoing passion and commitment. Even during the pandemic, when meetings turned virtual, the DAC tracked between 1,800 and 1,900 hours of in-kind work per year from its dedicated partners as they continued to work on recommendations within the plan.

“There is so much awareness that has been raised, and stigma tackled and lowered since the DAC has started,” said Maureen Linehan, Chair of the DAC LTSS Subcommittee and former director of Aging and Disability Services of King County.

“This has had a widespread positive impact. It was our consumer partners who initiated the idea for the Dementia Road Map: A Guide for Family and Care Partners – and the result has been very successful and helpful across both professionals and family caregivers.”

What is the Dementia Action Collaborative?

The Dementia Action Collaborative is a publicprivate collaboration that crosses multiple sectors. Representatives include: • Providers of health care and dementia care specialties • Representatives from the Health Care

Authority and the Department of Health • Providers of home and adult day care • Association representatives from longterm care settings • The Washington Association of Area

Agencies on Aging (W4A) and the Ombuds office • Alzheimer’s organizations • Representatives from policy/advocacy groups such as AARP, State Council on

Aging and the Developmental Disabilities

Council • Members of Washington state’s House of

Representatives and the Senate • People with dementia and family caregivers.

In this legislative session, a bill (SHB 1646) passed that codifies the Dementia Action Collaborative as the body to update the Washington State Plan to Address Alzheimer’s Disease and Other Dementias. With this new bill, the DAC is established to assess the current and future impact of Alzheimer's disease and other dementias on Washington residents. It will examine progress in implementing the Plan, adopted in 2016, assess available services and resources for persons with Alzheimer's disease and other dementias and their families and caregivers, examine strategies to address disparate impacts of Alzheimer's disease and other dementias on people of color, and develop a strategy for an effective state response. The group will submit an updated plan to the Governor and Legislature by October 2023. Unlike the first plan, in which the legislation expired upon publication, this bill provides continuity through 2028 and requires recommendations to the Governor and Legislature each year.

The DAC Progress Report 2021 shares the many activities and accomplishments from 2016 through 2021. To access resources or learn more: Dementia Action Collaborative or Lynne Korte at Lynne.Korte@ dshs.wa.gov.