What to Know About Recent Government Policies to Support People with Dementia and their Caregivers

These days, when the phrase “public health crisis” comes up, the mind goes first to COVID-19, the global pandemic countries around the world are still struggling against. But though the battle against Alzheimer’s and related dementias has in comparison been longer and more drawn out, dementia is very much thought of as a growing public health crisis, one that will continue to have a devastating impact on a global scale as the years go by. In America alone, over 6.5 million are currently living with dementia, a number that is projected to rapidly grow as the baby boomer generation—representing about 73 million people—continues to pass the age marker of 65 when the likelihood of dementia is known to increase.

The United States government has always been a key player in the fight against dementia, but recently it has made an even greater national commitment to address this serious threat to national health. Here are just three recent dementia-related public policies that older adults with dementia and their caregivers should know:

National Plan to Address Alzheimer’s Disease

The National Plan to Address Alzheimer’s Disease (NAPA), signed into law in 2011, put forth six goals to fight back against the continually rising prevalence of Alzheimer’s Disease in America:

1. Preventing and effectively treating Alzheimer’s Disease by 2025
2. Enhancing care quality and efficiency 
3. Expanding support for people with Alzheimer’s, their families and caregivers
4. Enhancing public awareness and engagement
5. Tracking data to recognize progress and drive improvement
6. Accelerating action to promote healthy aging and reduce risk factors

NAPA was designed to be reviewed and updated annually. The Department of Health and Human Services maintains reports detailing yearly progress and the development of new plan actions. Some key strategies developed under NAPA include:

• Identifying research priorities by holding research summits and listening to the needs of people in the community, and expanding research into prevention and treatment of dementia
• Improving understanding of the development of dementia in its earliest stages
• Coordinating dementia research across international nations and organizations
• Using research to improve medical practices and public health programs
• Enabling family caregivers to provide care while maintaining their own health, wellbeing and needs
• Improving access to timely and accurate diagnoses
• Increasing education and awareness, and making sure education spans different cultures and languages
• Standardizing dementia guidelines
• Exploring new models of dementia care

RAISE Family Caregivers Act

The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act was signed into law in January of 2018 to come up with a national family caregiving plan to:

• Promote greater use of person- and family-centered care in health care settings, including long-term care.
• Involve caregivers and their older loved ones in the evaluation and coordination of programs and services
• Identify quality sources of information, education, training, referrals and care coordination.
• Promote respite options for caregivers.
• Analyze financial security and workplace issues for caregivers.
• Deliver vetted services based on meeting the needs of family caregivers and their loved ones.

The RAISE Act recognizes the difficulties caregivers face in getting support, managing the financial burdens of caregiving and coping with balancing caregiving with work responsibilities, and seeks to provide practical solutions. To build a blueprint for these solutions, the RAISE Family Caregiver Advisory Council communicated directly with older adults and family caregivers to better understand their real-life struggles and what their most pressing needs are.

For more information on RAISE, you can read our in-depth look into the RAISE Act and what it means for family caregivers.

BOLD Infrastructure for Alzheimer’s Act

The BOLD Infrastructure for Alzheimer’s Act was signed into law in 2019, and aims to build the nation’s largest dementia infrastructure yet. BOLD authorizes the use of up to $100 million in funds over five years, with a focus on:

• The establishment of regional centers on dementia
• Public education and information campaigns
• Data collection on Alzheimer’s
• Caregiver support

One key thing to note about these recent government initiatives is that they touch on more than just drug research, which has been the primary focus of government funding the past. While finding a cure of dementia is, of course, important, both older adults and caregivers need support to live in a world without a cure. Recent government policy reflects this reality, and is doing more to provide solutions to gaps in family caregiver support, and better informed care and services for people living with dementia.

For people providing care for loved ones with dementia, it’s important to recognize that support is out there and is continuing to be improved upon. Many people who provide care to older adults do not recognize themselves as “caregivers”  and as a consequence do not turn to caregiver support programs for assistance, or even know what kind of assistance is out there. A good first step to learning more is reaching out to your local Area Agency on Aging. They can tell you more about the kind of programs and services these government initiatives build, support and improve, and can direct you to resources in your area.

This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00). Learn more here.