Caring for the Caregiver

More Caregiver Resources

There are many other resources for information, support, and more. The following organizations will help you understand and manage your role as a caregiver.

National Organizations

  • AARP has free online seminars for caregivers, such as "Managing Caregiving Details: The Basics" and "Planning for the Care of Aging Parents." For help with conversations with an elder who is too sick or frail to live independently, check out "Providing the Care."
  • Children of Aging Parents (CAPS) 800-227-7294 toll free, offers caregiver support programs in 13 states for adult children caring for elderly parents.
  • Family Caregiver Alliance 800-445-8106 toll free, is a national network that addresses the needs of families and friends providing long-term care at home. The Web site includes information, free publications, and an online caregiver support discussion group.
  • National Alliance for Caregiving provides information for caregivers on how to take care of themselves while providing care. Click on "Family Caregiving 101."
  • National Family Caregiver Support Program, U.S. Administration on Aging Resource Page provides links to government, nonprofit, and commercial caregiver Web sites. It also includes information and articles on a variety of topics. Call 202-619-0724 for a caregiver support program near you.
  • National Family Caregivers Association provides useful tips and guides for all aspects of family caregiving.
  • Rosalynn Carter Institute for Caregiving works to establish local, state, and national partnerships committed to building quality long-term care systems and providing greater recognition and support for caregivers. Visit the Web site for publications, workshops, and conferences.
  • Well Spouse Foundation (also known as the Well Spouse Association), 800-838-0879, is a nonprofit organization providing support and other resources to husbands, wives, and partners of chronically ill or disabled individuals. Click on "About Us," then "Join a Support Group," and select your state to find a support group nearby.
  • Women's Health Information Center 800-994-9662 toll free, offers useful resources on topics that affect women caregivers. The Web site is part of the U.S. Department of Health and Human Services' Office of Women's Health.

Faith-Based Organizations

Faith-based organizations have a long tradition of providing assistance to those in need, whether they are members of that faith or not. Faith-based organizations coordinate volunteers to help and visit with the elderly and sponsor meal programs and other direct services at places of worship. Many faith-based organizations run their own retirement communities and/or nursing homes. The following organizations are just a few examples of the kinds of services provided by faith-based organizations. Check with your clergy or religious affiliation for additional resources.

  • Association of Jewish Family and Children's Agencies (AJFCA) 800-634-7346 toll free, links concerned family members of frail elders living in distant cities, through its Elder Support Network, with Jewish Family Services Agencies in that community.
  • Catholic Charities, 703-549-1390, provides social service programs that may include home visiting programs, adult day health, visiting nurse services, a foster grandparents program, caregiver support programs, and basic needs services (food, fuel, utility, and rental assistance). To find a chapter near you, visit the Web site, and enter your state into the search box.
  • Faith in Action 877-324-8411 toll free, provides volunteers who can give caregivers non-medical assistance, such as picking up groceries or running errands, friendly visiting, reading, or helping to pay bills.
  • Lutheran Services in America has more than 300 health and human service organizations that provide care, ranging from health care to disaster response. Visit its Web site and click on "Find Services Near You," then "Search by Service" (or Location or Organization name), and then "Aging Services," to find 24 different services to help elders and their caregivers.

Disease-Specific Organizations

Sometimes the information caregivers need is specific to a particular disease or condition.

  • Alzheimer's Association has extensive information about Alzheimer's disease, updates on research and treatments, training for caregivers and for people with dementia, and short-term counseling. Contact its 24/7 Helpline at 800-272-3900 for information, referral, and support.
  • American Cancer Society (ACS) provides health information, support groups, and other resources for caregivers, including a caregiver discussion board. For your nearest ACS chapter, visit the Web site and click on "Find ACS in your Community," then enter your Zip Code.
  • American Diabetes Association provides diabetes research, information, and advocacy. For information about caregiver support groups and other resources in your area, visit the Web site and click on "In Your Area," then enter your Zip Code, then "Find a Recognized Education Program."
  • The American Heart Association provides information and resources for patients, as well as information specifically designed for caregivers.
  • The American Stroke Association, provides outreach to stroke survivors and their caregivers through a national call center, 888-4-STROKE (888-478-7653) toll free. To reach the support group registry, visit the Web site and click on "Life after Stroke," then "For Family Caregivers," then "Getting Support" then "Support Groups," then "More." The locator will help you find the chapter nearest you.
  • The Arthritis Foundation 800-283-7800 toll free, offers resources in English and Spanish, including detailed information about arthritis, drug treatments, and pain management, as well as help lines and message boards.
  • Compassionate Care ALS provides educational and legal resources, respite opportunities, instruction and guidance, subsidies for assistance, and conversations with ALS patients and their caregivers, families, and friends.
  • COPD-Support, Inc. provides information on organizations, support groups, and online meeting places for patients with emphysema, chronic bronchitis, and chronic asthma, and their caregivers.
  • The Leukemia and Lymphoma Society 800-955-4572 toll free, provides information on the diseases and both online and in-person group support for caregivers. Visit its Web site and click on "Chapter Finder," then enter your Zip Code.
  • The National Multiple Sclerosis Society 800-344-4867 toll free, has a useful Web site that includes publications for caregivers.
  • National Parkinson Foundation supports related research, patient care, education, training, and outreach. Support groups are listed on its Web site.
  • The Wellness Community, 888-793-WELL (888-793-9355) toll free, provides support for cancer patients and their caregivers, and has online and in-person support groups in Spanish and English.

Return to the beginning of the handbook...