The Family Caregiving Advisory Council heard expert presentations on the intersection between the National Alzheimer’s Project Act (NAPA) Council and its own mission to guide the creation of a national caregiving strategy during its Aug. 12, 2020 meeting. The caregiving council is tasked by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018 (the RAISE Act) to create a National Family Caregiving Strategy.

View a video recording of the Aug. 12, 2020 council meeting and the presentation slides.

Syncing with the National Alzheimer’s Project Act

Katie Brandt, director of Caregiver Supports Services at the Massachusetts General Hospital and cochair of the National Alzheimer’s Project Act (NAPA) Advisory Council, and Helen Lamont, long-term care policy analyst at HHS, designated federal official of the NAPA Advisory Council, and member of the RAISE Advisory Council, gave a presentation on the parallels between the recommendations issued by the NAPA Advisory Council and the Family Caregiving Advisory Council’s tentative federal recommendations to better support family caregivers.

The National Alzheimer’s Project Act was signed into law in 2011. Similar to the RAISE Act, NAPA legislation called for HHS to create a federal advisory council, including federal and nonfederal members, to make recommendations on Alzheimer’s disease and related dementias. The NAPA council first released its national plan to address Alzheimer’s disease in May 2012, which is updated annually. The NAPA council has convened quarterly since September 2011, apart from April 2020, and is expected to make an update to the national strategy in October 2020. With each update, the NAPA council’s recommendations are transmitted to the HHS Secretary and can be considered by Congress for federal funding and policy priorities.

Although states are not explicitly sent recommendations from the NAPA council, some of its recommendations are directed toward states. Due in large part to the NAPA council’s efforts, all but one state has a state plan on Alzheimer’s, many informed by the NAPA council’s recommendations.

Topics covered by the NAPA national strategy include research, clinical care, and long-term services and supports. The five goals for the NAPA council’s national strategy are:

1. Prevent and effectively treat Alzheimer’s and related dementias by 2025.
2. Optimize care quality and efficiency.
3. Expand supports for people with Alzheimer’s disease and their families.
4. Enhance public awareness and engagement.
5. Track progress and drive improvement.

In their combined presentation, Brandt and Lamont highlighted the following similarities between the NAPA and RAISE councils:

• Many caregivers for older adults also care for those with dementia.
• Many caregivers work with Down Syndrome and I/DD communities, who have a higher risk of developing dementia.
• Both councils recognize the important role of caregivers as well as the importance of integrating caregivers into health care systems.
• Both councils recognize accessible, affordable, and culturally competent long-term services and supports as essential.
• Both councils seek to advance research on care models and interventions to address caregiver needs and person- and family-centered plans.

The NAPA and family caregiving advisory councils will continue to work together on their common goals and inform one another of important, evidence-supported practices to consider for both national strategies.

Refining the Goals for the National Strategy

Greg Link, director of the Office of Supportive and Caregiver Services at the Administration for Community Living (ACL), and Wendy Fox-Grage, project director at the National Academy for State Health Policy (NASHP), led a discussion to refine the Family Caregiving Advisory Council’s goals to help shape its recommendations to Congress. The council adopted the following goals:

1. Family caregivers’ physical, emotional, and financial well-being will meaningfully improve as a result of expanded awareness, outreach, and education.
2. Family caregivers are recognized, engaged, and supported as key partners by providers of health care and long-term services and supports.
3. Family caregivers have access to an array of flexible person- and family-centered programs, supports, goods, and services that meet the diverse and dynamic needs of family caregivers and care recipients.
4. Family caregivers’ lifetime financial security and employment security is protected and enhanced.
5. Family caregivers are engaged stakeholders in a national research and data-gathering infrastructure that:
   1. Documents their experiences;
   2. Translates evidence into best practices
   3. Develops person- and family- centered interventions; and
   4. Measures progress toward development of a National Caregiver Strategy.

Next Steps

The Family Caregiving Advisory Council currently is working on its report to Congress. The council’s three subcommittees will meet to discuss and draft recommendations that will be scheduled for consideration by the full council this fall.

The council’s work is supported by a unique collaboration between The John A. Hartford Foundation, ACL, and NASHP. With generous support from The John A. Hartford Foundation, NASHP created the RAISE Family Caregiver Act Resource and Dissemination Center. The center will continue to provide the council with resources to inform and disseminate its work with state and federal policymakers, diverse stakeholders, and the public.