Alzheimer's disease is a form of dementia that affects parts of the brain that control thought, memory, language, and functional status.  Alzheimer's disease is an irreversible, progressive brain disease that results in death of the individual.  In more than 90 percent of people with Alzheimer's disease, symptoms do not appear until after age 60.  The causes of Alzheimer's disease are not known, but are believed to be associated with a combination of genetic, environmental, and lifestyle factors.

In 2014 the Legislature directed the Department of Social and Health Services to convene an Alzheimer's disease working group (working group) to develop a state Alzheimer's plan.  In 2016 the working group released the "Washington State Plan to Address Alzheimer's Disease and Other Dementias" (Plan).  The Plan includes information about trends in Alzheimer's disease and other dementias in Washington and identifies seven goals to address Alzheimer's disease in Washington.  The seven goals relate to:  (1) public awareness; (2) preparation for growth in the dementia population; (3) the well-being of people living with dementia and their families and caregivers; (4) access to comprehensive supports for family caregivers; (5) early identification of dementia and provision of dementia-capable, evidence-based health care; (6) the availability of dementia-capable long-term services and supports in the setting of choice; and (7) innovation and research related to the causes of and interventions for dementia.  Since the issuance of  the report, the working group has been renamed the Dementia Action Collaborative.

The Dementia Action Collaborative (Collaborative) is established to assess the current and future impact of Alzheimer's disease and other dementias on Washington residents.  Specifically, it must examine progress in implementing the Washington State Alzheimer's Plan (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 rectify disparate effects of Alzheimer's disease and other dementias on people of color, and develop a strategy for a state response to this public health crisis.

In addition, the Collaborative must also review and revise the Washington State Alzheimer's Plan.  The revisions must evaluate and address:

• population trends related to Alzheimer's disease and other dementias, including demographic information related to Washington residents living with Alzheimer's disease and other dementias and disparities in the prevalence of Alzheimer's disease and other dementias between different racial and ethnic populations; and
• existing services, resources, and health care system capacity, including the types, cost, and availability of dementia services; dementia-specific training requirements; public safety and long enforcement needs for responding to persons with Alzheimer's disease and other dementias; the availability of home and community-based resources; the availability of long-term dementia care beds; state funding and Alzheimer's disease research; and advances in knowledge regarding brain health, dementia, and risk reduction related to Alzheimer's disease and other dementias.

The Collaborative must submit an updated Plan to the Governor and the Legislature by October 2023, and provide annual updates.

The Governor must, at a minimum, appoint members of the Collaborative who include:

• a representative of the Governor's Office;
• a representative and an alternate from the Aging and Long-Term Support Administration at the Department of Social and Health Services (DSHS);
• a representative and an alternate from the Developmental Disabilities Administration at the DSHS;
• a representative and an alternate from the Department of Health;
• a representative and an alternate from the Health Care Authority;
• a representative and an alternate from the Office of the State Long-Term Care Ombuds;
• at least one person with Alzheimer's disease or another dementia;
• a caregiver of a person with Alzheimer's disease or another dementia;
• a representative of the University of Washington's Memory and Brain Wellness Center;
• a representative of an organization representing area agencies on aging;
• a representative of an association representing long-term care facilities in Washington;
• a representative of an association representing physicians in Washington;
• a representative of a Washington-based organization of volunteers, family, and friends of those affected by Alzheimer's disease and other dementias;
• a representative of an Alzheimer's advocacy organization;
• an attorney who specializes in elder law;
• an Alzheimer's disease researcher;
• a representative of an organization representing emergency medical service providers in Washington;
• an expert in workforce development;
• a representative of the Washington State Council on Aging;
• a representative of the Governor's Office of Indian Affairs;
• a licensed behavioral health provider with expertise in Alzheimer's disease and other dementias;
• a representative of a health care organization that primarily serves people of color; and
• a nurse with expertise in serving individuals with Alzheimer's disease or other dementias.

The Collaborative must be co-chaired by the Secretary of the DSHS, or the Secretary's designee, and either the member representing an Alzheimer's disease advocacy organization or the member representing the Washington-based organization of volunteers, family, and friends of those affected by Alzheimer's disease and other dementias.  The Secretary of the DSHS must convene the Collaborative and submit reports, and the DSHS must provide administrative support.

(In support) The Dementia Action Collaborative (Collaborative) is a group of experts, family members, and others who have worked for the last five years to develop the state's Alzheimer's plan and implement its recommendations.  This bill requires that the Collaborative update the plan based on the work that has been done and the changes to the population and demographics.  This bill lays out specific issues for the Collaborative to address in an updated state Alzheimer's plan, including the availability of services for individuals with dementia and support for families.  This bill formalizes the reporting and recommendation process of the Collaborative so that policymakers have updated information.  This bill will assure that there is a consumer voice on the Collaborative.
 
This bill is about building a strong, supportive future for people affected by Alzheimer's disease and other dementias.  There are over 100,000 people in Washington living with Alzheimer's today and the number will nearly double by 2040.  By the time they turn 50 years old, 30 percent of people with Down syndrome will have dementia and by 60 years old, that number reaches 50 percent which makes dementia an important issue to families with a child with Down syndrome.  Washington needs to assure that it has the services and supports available to persons experiencing Alzheimer's and dementia and their families.  The Collaborative's initiatives have had tangible impacts, such as the legal planning tool and pro bono clinics, and provided useful resources tailored to the Black and African American communities.  The Collaborative needs to continue its work with an eye toward existing gaps in service availability and health equity to reach communities of color who are disproportionately impacted by Alzheimer's disease and dementia.

(Opposed) None.