Daily Herald (August 25)
Doctor’s Orders: Self-care for caregivers of individuals with dementia or Alzheimer’s disease
If you’re caring for a loved one with dementia or Alzheimer’s disease, you’re not alone. In Utah, there are more than 150,000 unpaid caregivers for loved ones with dementia. These caregivers provide 177 million hours of care for loved ones each year valued at $2.2 billion. In the United States, there are more than 16 million unpaid caregivers providing 18.5 billion hours of care valued at $234 billion.
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Hi Kathleen, Thanks for your questions! Caregiver support is an important priority, and there are a number of resources that can help you learn more.
Respite care programs vary from state to state, so checking with the Eldercare Locator to find your local Area Agency on Aging or Aging and Disability Resource Center is a good place to start. You can learn more about these offices in this section of our website: https://acl.gov/help/getting-started.
ACL has launched two Advisory Councils that are working on the very questions you raise about how to best help caregivers. Read more about their work, and the legislation that is making them possible, here: https://acl.gov/news-and-events/acl-blog/supporting-community-living-caregiving-advisory-councils.
Are you a family caregiver in need of information or assistance? Are you interested in learning more about programs and services that may be of assistance to you or your loved one? The Eldercare Locator, a public service of the U.S. Administration on Aging, is the first step to finding resources for older adults in any U.S. community. Just one phone call or website visit provides an instant connection to resources. The service links visitors to state and local Area Agencies on Aging and community-based organizations that serve older adults and their caregivers.
To learn more about how to develop a program to support caregivers, check with one of the organizations active in this work, which are listed below.
Family Caregiver Alliance - National Center on Caregiving
Established in 2001 as a program of the Family Caregiver Alliance, the National Center on Caregiving (NCC) works to advance the development of high-quality, cost-effective policies and programs for caregivers in every U.S. state. Uniting research, public policy and services, the NCC serves as a central source of information on caregiving and long-term care issues for policy makers, service providers, media, funders, and family caregivers throughout the country.
National Alliance for Caregiving
Established in 1996, The National Alliance for Caregiving is a nonprofit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.
The Alliance was created to conduct research, analyze policy, develop national programs, increase public awareness of family caregiving issues, strengthen state and local caregiving coalitions, and represent the U.S. caregiving community internationally. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance's mission is to be an objective national resource aimed at improving the quality of life for families and care recipients.
Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of older age. CAN serves a broad spectrum of caregivers ranging from the parents of children with special needs to the families and friends of wounded soldiers. CAN is a nonprofit organization providing education, peer support, and resources to family caregivers nationwide free of charge.
Generations United (GU) is the national membership organization dedicated to improving the lives of children, youth, and older people through intergenerational strategies, programs, and public policies. GU represents more than 100 national, state, and local organizations representing more than 70 million Americans. With its emphasis on public policy, advocacy and programming, GU has served as a resource for policymakers and the public on the economic, social, and personal imperatives of intergenerational cooperation.
The Brookdale Foundation Group—Relatives as Parents Program (RAPP)
Established in 1996 in response to a growing need for enhanced services and supports for grandparents raising grandchildren, The Brookdale Foundation Group established RAPP to encourage and promote the creation or expansion of services for grandparents and other relatives who are surrogate parents due to the absence of the parents. Currently, RAPP provides supportive services, primarily to relative caregivers caring for children outside the foster care system, through an extensive network of support groups.
This website was created by the United States Department of Agriculture (USDA) Cooperative Extension System. Caregivers and advocates can access a wide range of information and materials designed to help them learn about and provide supportive services to family and relative caregivers. Topics include disaster preparedness, military families, grandparents raising grandchildren, housing, and nutrition.
What is being done to support the caregiver and to give the person time for themselves? How does one develop a volunteer program for caregiver relief? Are caregivers aware of respite care in LTC and how is it paid for??