Organizations That Take Care of Caregivers
AARP’s Caregiving Resource Center provides family caregivers with information, tools and resources to help them on their caregiving journey. The site also provides access to caregiving experts in various issue areas, who provide information through blogs, webinars and one-on-one interaction through social media channels. Family members and friends can find a supportive online community that offers a safe space to connect with others experiencing similar challenges as they care for a loved one.
Specializing in caring for those with Alzheimer’s and other dementias, the Alzheimer’s Association has links with details on what to expect for each disease stage. It also explains behaviors specific to Alzheimer’s and links caregivers to local respite care and activities, legal and financial advice and resources, and local caregiver support groups. Also included are pragmatic stress tests and caregiver message boards.
The Alzheimer’s Foundation provides online tips, a toll-free hotline, educational and social services, professional development, advocacy and grants, as well as a link for teens to connect, educate others and support caregiving teens. The Foundation puts its stamp of approval on facilities that meet their strenuous standards for good care for those with Alzheimer’s, hosts a national memory screening day and a national brain game challenge.
The American Association of Caregiving Youth is geared toward supporting the 1.4 million children and teens who are caregiving for parents and grandparents. They provide counseling and support services, education and advocacy. The Association works directly with schools to help students remain academically successful while they are in the caregiving role.
The ARCH (Access to Respite Care and Help) National Respite Network connects caregivers directly to local respite and crisis care services, assists and promotes the development of quality respite and crisis care programs, and advocates for respite in all forums.
The Caregiver Action Network (CAN) (formerly the National Family Caregivers Association) offers practical lists for immediate help with caregiving: patient file checklist, doctors office checklist, how to find a support group, medication checklist, independent living assessment and helpful videos. This easy-to-navigate site takes caregivers through step-by-step processes to help get a handle on caregiving.
Caregiver Support Services supports family and professional caregivers through direct services such as trainings on medication, on how to become a personal assistant or a nursing assistant, case management, employee assistance, Alzheimer’s and HIV/AIDS, as well as self-advocacy and other pertinent services.
This website offers informative articles about common caregiving concerns for family caregivers, and hosts a directory of services.
CaringBridge.org connects families and friends who are experiencing a significant health challenge through private websites where people can share updates and support.
E Care Diary provides the tools and resources to simplify caregiving, including the Care Diary, a medication- and appointment-management tool that helps families store and share their loved ones’ information in a secure, private place.
A free nationwide directory assistance service, eldercare locator helps older persons and their family caregivers locate local support resources. It is administered through the National Association of Area Agencies on Aging in Washington, D.C.
The Family Caregiver Alliance supports caregivers through information, education, services and research. It also advocates for family caregivers, including a new initiative to foster a consumer movement to improve healthcare quality, coordination and communication for elders and their caregivers. FCA also connects caregivers to services and support groups and has an ongoing story project. FCA’s National Center on Caregiving advances the development of high-quality, cost effective policies and programs for caregivers in every state. The Family Care Navigator is a state-by-state, online guide to help families locate government, nonprofit and private caregiver support programs.
To hire trusted care for a loved one in your home, the Home Instead Senior Care network of locally owned franchises has been providing in-home care for elders since 1994, so older adults can age in their home, and caregivers can get a well-earned break. For either a few hours a day or 24-hour care, Home Instead’s caregivers are screened, trained, insured and bonded.
Through Lotsa Helping Hands anyone can create private Web-based communities to organize care and help for people in need, with a group calendar for scheduling and sign-ups for tasks from providing respite to meals, rides and visits. There is a place for announcements, a message board and an information section for families to store and retrieve health data, emergency contacts, medications and legal and financial records for designated members.
The Medicare.gov landing page for caregivers has resources, stories and newsletters about taking care of someone on Medicare. There are easy links to find out if procedures are covered, as well as finding someone to talk to about a multitude of potential nuts-and-bolts questions, from coverage to urgent care to complaints on kidney dialysis.
A coalition of 40 national organizations that conducts research and policy analysis, develops national programs and works to increase public awareness of family caregiving issues across the life span.
The National Adult Day Services association connects family caregivers with adult day centers and supports the interests of adult day services’ providers. It provides members with advocacy, educational and networking opportunities, technical assistance and research, and communications services.
The National Association of Professional Geriatric Care Managers is a nonprofit professional development organization whose mission is to advance professional geriatric care management through education, collaboration and leadership. Members are also listed on the site, where they can be linked to caregivers. The site explains care management and how to finding the best geriatric care manager, and offers easy links for families to search for one via zip code.
The National Family Caregiver Support Program provides grants to states and territories, based on their share of the population ages 70 and older, to fund a range of supports that help family and informal caregivers to care for their loved one at home for as long as possible. Overseen by the Administration on Aging, the NFCSP provides five types of services: information to caregivers about available services, assistance to caregivers in gaining access to the services, individual counseling, organization of support groups, and caregiver training, respite care, and supplemental services, on a limited basis. These services work with other state- and community-based services to provide a coordinated set of supports for caregivers.
The National Institute on Aging’s National Alzheimer’s Education and Referral Center has a section for Caregivers with tip sheets and resources on behaviors, care, communication, relationships, safety, caregiver health, legal and financial issue and stages. It has an extensive list of publications on caregiving and papers on the latest in Alzheimer’s research. And there’s an easy-to-navigate, thorough and helpful Frequently Asked Questions section.
For caregivers or elders considering long-term care, this clearinghouse run by the Administration on Aging answers questions about the nature of long-term care, who needs it, how much it costs (with a state-by state breakdown), how it can be paid for, who provides care within long-term care facilities, details on Medicare and Medicaid coverage of long-term care, even legal help for LGBT elders considering long-term care. Not only does the site explain why everyone needs to plan for long-term care, but also it takes one through the step-by-step process.
United Hospital Fund’s Next Step in Care program provides information and advice to help family caregivers and healthcare providers plan safe and smooth transitions for patients between care settings. All materials for family caregivers are available in English, Spanish, Russian and traditional Chinese, and they emphasize careful planning, clear communication and ongoing care coordination.
The Rosalynn Carter Institute for Caregiving is an advocacy, education, research and service unit of Georgia Southwestern State University. It has its own training center, caregiving management certificate program, scholarship and fellowship opportunities, as well as caregiver resources.
Run by the U.S. Department of Veterans Affairs, it provides support and services for family caregivers of veterans.
The Well Spouse Association provides peer support and education about the special challenges and unique issues facing “well” spouses. Members speak out on their caregiving situations, providing a window into the not-so-well-known world of the estimated 6 million spousal caregivers in America and many more around the world.