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Support for People with Dementia, Including Alzheimer’s Disease

The following article is taken from U.S. Department of Health and Human Services, Administration for Community Living. It is lengthy and occasionally technical, but we find there are helpful data and resources within. Scroll to the bottom for information about the National Alzheimer’s Call Center.

Dementia is a term applied to brain diseases that affect people’s ability to think, as well as their daily functioning. Alzheimer’s disease is the most common cause of dementia occurring mostly among older adults, but there are forms of dementia that can impact people at younger ages. ACL provides grants that support state and community efforts to increase the availability of dementia-capable home and community-based services and supports for people living with Alzheimer’s disease and related dementia (ADRD) and their caregivers.

Alzheimer’s Disease Programs Initiative (ADPI)

The Alzheimer’s Disease Programs Initiative (ADPI) was formed by merging ACL’s two separate state and community dementia programs, ADSSP and ADI-SSS (see ADPI Predecessor Programs section below). ADPI has three components, which are designed to bring dementia-capable home and community-based services (HCBS) and support to individuals living with ADRD and their caregivers:

  • Cooperative agreement/grants funding states, communities, and Tribal entities for the development and implementation of dementia-capable person-centered HCBS and supports, as well as partnerships with public and private entities to identify and address the unique needs of persons with ADRD and their caregivers;
  • Cooperative agreement/grant funding in support of the National Alzheimer’s Call Center; and
  • Contract to fund the activities of the National Alzheimer’s and Dementia Resource Center (NADRC).

In an effort to fill some identified gaps in existing systems that support caregivers and people with ADRD, the ADPI dedicates resources for states and community-based organizations with proven capability in the provision of both services and training to targeted special populations. There are resources set aside to support Tribal entities in the development of culturally competent services and training in ADRD. Through the ADPI, ACL issues three classes of competitive grants under a single program umbrella.  Eligible entities are those states intending to develop/expand the dementia capability of their HCBS system, community-based organizations (CBO) operating within an existing dementia-capable system committed to the expansion of the capability of their system, and Tribal entities desiring to develop culturally competent ADRD supports and services. Eligible CBOs are those prepared to address identified dementia service gaps through expansion of their on-going activities. Collectively these grants seek to achieve the following objectives:

  • Create state-wide, person-centered, dementia-capable home and community-based service systems;
  • Translate and implement evidence-based supportive services for persons living with ADRD and their caregivers at the community level;
  • Work with public and private entities to identify and address the special needs of persons living with ADRD and their caregivers; and
  • Offer direct services and supports to persons living with ADRD and their caregivers.

ADPI Predecessor Programs

Below are brief summaries of the two programs that preceded ADPI. Both programs met their objectives prior to being merged into ADPI in 2018.

Alzheimer’s Disease Supportive Services Program (ADSSP)

From 1992 until 2018, ADSSP grants supported state efforts to expand the availability of community-level supportive services to persons living with ADRD and their caregivers. The program began as the Alzheimer’s Disease Demonstration Grants to States, and was created by Section 398 of the Public Health Services Act. ADSSP evolved over the years, moving from innovative practices and evidence-based grants to programs focusing on building dementia capability within state systems. In its latter years, efforts funded by ADSSP focused on the development of systems that ensure access to sustainable, integrated long-term services and supports capable of meeting the needs of persons living with ADRD and their caregivers. The services and supports helped many individuals with ADRD remain independent and healthy in the community.

States that benefited from the ADSSP grant program included the following activities in their programs:

  • Delivery of supportive services and facilitation of informal support for persons living with ADRD and their family caregivers using proven models and innovative practice;
  • Translation of evidence-based models that have proven beneficial for persons living with ADRD and their family caregivers into community-level practice; and
  • Advancement of state initiatives toward coordinated systems of home- and community-based care, linking public, private, and nonprofit entities that develop and deliver support services for individuals living with ADRD and their family caregivers.

Alzheimer’s Disease Initiative-Specialized Supportive Services (ADI-SSS)

From 2014 until 2018 the ADI-SSS grant program filled gaps in dementia-capable long-term services and supports at the community level for persons living with, or at high risk of developing, ADRD and their caregivers. ADI-SSS program funding was open to a wide variety of both public and private, dementia-capable, entities. The program supported quality, person-centered services that help people with ADRD remain independent and safe in their communities. The ADI-SSS program supported (1) the development, improvement, and provision of supportive services to persons living alone with ADRD in communities; (2) programs and services dedicated to individuals aging with intellectual and developmental disabilities with ADRD or those at high risk of developing ADRD; and (3) behavioral symptom management training and expert consultation to family caregivers.

For More Information

The links and summaries below describe resources that are available to individuals and the disability and aging network. If you are seeking support related to ADRD, ACL and our grantees are here to help.

National Alzheimer’s and Dementia Resource Center (NADRC)

The ACL-funded NADRC provides technical assistance to ACL and its grantees and also serves individuals and organizations outside ACL’s ADRD grantee community.

The NADRC website provides a broad range of program-related materials to aid grantees, professionals, and formal and informal caregivers. Materials on the NADRC website include issue briefs, webinar recordings and related PowerPoint presentations, and numerous tools that support service providers and caregivers.   

National Alzheimer’s Call Center

The ACL-funded Call Center is operated by the Alzheimer’s Association is available 24 hours a day, seven days a week at 1-800-272-3900. The Call Center serves people in 56 states and territories 365 days a year, providing information, expert advice, care consultation, and referrals at both national and local levels. Trained professional staff and social workers with master’s degrees are available at all times. The Call Center can help with questions about memory problems and how to deal with challenging behaviors, and staff can provide tips for taking care of someone with Alzheimer’s disease or other forms of dementia. When people call the National Alzheimer’s Call Center, they may be referred to local Alzheimer’s Association chapters, Aging and Disability Resource Centers, Area Agencies on Aging, Adult Protective Services, Alzheimer’s Disease Centers, adult day services, and other service providers.

Last modified on 05/04/2021; accessed February 09, 2023

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