In 2012, two significant events set the nation in a new direction related to Alzheimer's disease and related dementias (ADRD): The formation of the Administration for Community Living (ACL) and publication of the first National Plan to Address Alzheimer’s Disease. The National Plan is updated annually by the Office of the Assistant Secretary for Planning and Evaluation (ASPE). ASPE also convenes the Advisory Council on Alzheimer's Research, Care and Services (the Council) – composed of various federal agencies, people with dementia, caregivers, providers, and researchers – to provide recommendations that inform the National Plan.
Since the National Plan was first released, both ACL and its sister agencies have collaborated closely with each other and ASPE to address these irreversible, progressive brain conditions, which affect approximately 5.5 million Americans and that estimates suggest will impact approximately 13.8 million people in the U.S. by 2050. These dementias can cause significant emotional, physical, and financial strain on the individual living with the condition, as well as their family.
The goals of the National Plan are to lead the federal government to comprehensively:
- Prevent and effectively treat ADRD,
- Enhance care quality,
- Expand supports for people with ADRD and their caregivers,
- Enhance public awareness,
- Improve data tracking, and
- Reduce risk factors.
The National Plan, serves as both a strategic roadmap, through which ASPE coordinates efforts across the federal government to address ADRD, and a progress report. It has been used to accelerate research, study and implement new models of care, and expand services and support for people with dementia and their families.
ACL has been a key partner on this work since its inception. Programs within ACL’s Administration on Aging have funded states, tribes and territories to offer ADRD supports and services and, in 2014, ACL extended the reach of HHS’s ADRD programing to bring resources directly to the organizations delivering home- and community-based services (HCBS). ACL used the recommendations of the Council to identify three gaps in care and services that then became requirements for ACLs Alzheimer’s Disease Programs Initiative (ADPI):
- Finding and serving people living alone with dementia,
- Supporting people living with intellectual and development disabilities and dementia, and
- Supporting caregivers.
ACL has awarded 152 dementia-specific grants to states and community-based organizations through the ADPI, serving more than 90,000 people living with dementia and their caregivers with almost 2.4 million hours of direct services. These grants have also resulted in the training of just under 100,000 professionals in the delivery of dementia-capable care. Early in the implementation of the Plan, ACL, the Centers for Disease Control and Prevention and the National Institute on Aging collaborated to educate professionals on ways in which they can inform, educate and empower community members, people living with dementia and their family caregivers and engage them in research studies. The ACL Alzheimer’s and dementia programs have a longstanding commitment to the provision of culturally and linguistically appropriate services. In the last ten years, the ADPI funding has resulted in programs and resources designed to support people living with dementia and caregivers from a broad range of historically underserved communities including, but not limited to, African Americans, Asian Pacific Islanders, Latino, Native Americans/Native Alaskans and Persians.
One of ACL’s most significant accomplishments was increasing awareness of people with intellectual and developmental disabilities (IDD) who are at high risk for developing dementia. Since 2014, ACL’s ADPI State and Community Grant Program has funded 99 grants that are helping advance knowledge and services dedicated to support people with IDD and dementia or who are at risk of developing dementia, with notable emphasis on people with Down syndrome. Through ACL’s grants, tens of thousands of service providers and family caregivers have been trained in IDD and dementia, which has led to a greater understanding of the benefits of early screening and the implementation of the NTG Early Detection Screen for Dementia (EDSD) tool.
We know from studies that people are happier and healthier when they live in the community as opposed to institutions such as nursing homes. To help people with IDD and ADRD remain in their communities, ACL’s grant programs are expanding the reach and uptake of dementia-capable home and community-based services through targeted services, supports and education, making them more accessible and dementia-friendly. ACL’s National Alzheimer’s Disease Resource Center is serving as a hub of information, providing technical assistance to ACL grantees, and providing information and resources available to the broader community.
As we mark ten years since the creation of ACL and the National Plan to Address Alzheimer’s Disease, ACL and ASPE celebrate all that our partners and stakeholders have done to improve the lives of people with dementia and their families. But we all know we have a long way to go to achieving our larger goals. We will continue to roll up our sleeves and partner across HHS, the federal government, and with others who share our mission. Until a cure is found, all of us will continue press forward to reduce the impact of Alzheimer’s disease and related dementias on individuals, families and communities.
Additional information on ACL’s supports for people with ADRD can be found here.
About the Authors
Alison Barkoff, ACL Acting Administrator and Assistant Secretary for Aging, has worked on issues related to community living since her youth. The sibling of an adult brother with developmental disabilities and a civil rights attorney, Alison is a lifelong advocate for community living – both professionally and personally. As part of countless coalitions of people with disabilities, older adults, and advocates, she has fought to uphold the rights of people with disabilities and older adults and advance policies to ensure their access to health care, housing, employment, education, and all other facets of community life.
Dr. Tisamarie Sherry, ASPE Deputy Assistant Secretary for Planning and Evaluation, is a primary care physician and health economist whose research has focused on improving health care delivery, financing and policy to better serve people with mental illness, substance use disorders and disabilities. A graduate of both Princeton and Harvard Universities, she has devoted her career to using research to inform and improve public policy, particularly within the Department of Health and Human Services.