IDD and Dementia. 5.4 Services for Caregivers of Persons with IDD and Dementia


General information is available for family caregivers from the Alzheimer's Association (2015) and the National Down Syndrome Society (2014). Training programs and educational materials have been developed to help facilitate education and training among family caregivers of individuals with IDD and dementia (McCallion & Janicki, 2002; Watchman, 2007). Family caregivers who must make adaptations to their home to accommodate dementia stage-related changes can access guides to adapting home for dementia, such as those of the Alzheimer's Association (Alzheimer's Association, 2014b,c; Jokinenet al., 2013).

The Administration for Community'sNational Family Caregiver Support Program (Title IIIE of the Older Americans Act), provides funding for community-based programs to support the important role of family caregivers, including family caregivers of individuals with IDD and dementia. Although caregiver programs available locally vary, any adult family members or other informal caregivers aged 18 and older providing care to individuals of any age with AD and related disorders may be eligible for services. Although funding is limited, services may include the following:

  • Access assistance services to help caregivers locate services from a variety of private and voluntary agencies

  • Counseling and training services in the form of counseling, peer support groups, and training to help better cope with the stresses of caregiving

  • Respite services for temporary relief--at home or in an adult day care or institutional setting--from caregiving responsibilities (ACL, 2014a)

In a majority of states, the Lifespan Respite Care Programs coordinate systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs (ACL, 2013).

The Administration on Community Living also sponsors the Alzheimer's DiseaseSupportive Services Program (ADSSP), which provides grants and supports to states in their efforts to expand the availability of community-level supportive services for persons with dementia and their caregivers. In addition, the Alzheimer's Disease Initiative: Specialized Supportive Services (ADI-SSS) project is designed to fill gaps in dementia-capable LTSS for persons living with Alzheimer's disease and related dementias and their caregivers. The ADSSP and ADI-SSS projects fund efforts to ensure that people with dementia of all ages and their family caregivers have access to a sustainable HCBS system that is dementia capable. One area that all grantees participating in the 2014 ADI-SSS projects address is the improvement of the quality and effectiveness of programs and services dedicated to individuals with IDD and dementia, or those at high risk of developing dementia. Grantees funded in 2014 are targeting services to individuals with IDD and dementia and provide training targeted at their caregivers and providers (ACL, 2014b).Grantees funded in 2015 have the option to target services to individuals with IDD and dementia and provide training targeted at their caregivers and providers.

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