Alzheimer's Disease and Other Dementias

Part of LeadingAge's 2020 Policy Priorities

LeadingAge Advocacy Goals

  • Achieve LTSS financing reform to ensure that individuals with dementia and family caregivers have access to care and services.
  • Aging services organizations must be able to hire and retain a sufficient number of high-performing staff at all levels to meet the needs of individuals with dementia and, specifically, to staff memory care services.
  • Ensure full funding for federal programs under the Older Americans Act and financing for Medicare and Medicaid services for people with dementia.
  • Advocate for full funding for research into treatments and a cure for dementia.

The Issue

One in ten people age 65 or older has dementia. Today, approximately 5.7 million Americans live with Alzheimer’s disease or another form of dementia. By 2050, with the projected increased aging of the population, and the fact that people are living longer with chronic conditions, the number is expected to grow to nearly 14 million. The number of people affected by dementia rises considerably when the 16 million unpaid family caregivers are taken into account. All memory care residents, most nursing home residents, and large numbers of people served by other LeadingAge providers live with dementia. It is essential that programs serving individuals with Alzheimer’s disease and other dementias be fully funded and that funding is concurrently provided to support diagnosis, care coordination, and research into treatments and a cure.

Advocacy Action 2020

116th Congress

  • Care Planning for Alzheimer’s Disease Under Medicare: We will monitor the Improving HOPE for Alzheimer's (HR 1873), which will provide outreach and reporting on comprehensive Alzheimer’s disease care planning services furnished under the Medicare program.
  • Improving Care, Seeking a Cure: We support Concentrating on High-Value Alzheimer's Needs to Get to an End (CHANGE) Act of 2019 (S 1126) to provide better care and outcomes for Americans living with Alzheimer’s disease while accelerating progress toward prevention, treatment, and a cure.
  • Younger Onset of Dementia: We support the Younger Onset Alzheimer's Disease Act (S 901) to amend the Older Americans Act to assist individuals with younger-onset Alzheimer’s disease.
  • Appropriations for Research: We seek the fiscal year 2020 appropriations to support federal spending on Alzheimer’s research, consistent with the BOLD Infrastructure for Alzheimer's Act (P.L. 115-406), and to support Alzheimer’s and dementia-related programs of the Administration on Community Living - HHS.
  • Bipartisan Task Force: We support the work of the Bipartisan Congressional Task Force on Alzheimer's Disease and will provide help to inform the work of the over 150 members of the House and Senate who are members of the task force.

Executive Branch

  • ACL Activities: We track Alzheimer's related activities of the Administration on Community Living – HHS, including the Alzheimer’s Disease Programs Initiative, the National Alzheimer’s and Dementia Resource Center, and the National Alzheimer’s Call Center.
  • Alzheimer’s Advisory Council: We monitor the implementation of the Advisory Council on Alzheimer's Research, Care, and Services, which is run by the Assistant Secretary for Planning and Evaluation - HHS. The council includes all federal agencies that work with dementia, and meets quarterly to discuss programs that impact people with Alzheimer’s disease and other dementias and update the National Alzheimer’s Plan.
  • Family Caregiver Council: We monitor the implementation of the RAISE Family Caregiver Council, which is run by the Administration on Community Living – HHS, and is charged with developing a national family caregiving strategy.
  • Alzheimer’s Research Summit: We will monitor the implementation and recommendations of the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers to identify policy levers and proposals.

Actions You Can Take Now

  • Visit the Advocacy Action Center to let your representative and senators know that you support programs and policies that help people with dementia and their family caregivers.
  • Host a Coffee Chat with Congress in your community to help your members of Congress understand how policies impact services for people with dementia.
  • Mobilize with the Advocacy Champions toolkit and let your representatives and senators know you support research and program to address the needs of people with dementia and their families.

Additional Resources