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Caring for the Caregiver

Support Groups & Services

The challenges of caring for elders can result in caregivers ignoring their own physical and emotional health. Caregivers often don't recognize the symptoms of stress that they are experiencing. For a simple self-test, see the American Medical Association's Caregiver Self-Assessment Questionnaire (PDF). If you take the test and find you do have a number of symptoms associated with high levels of physical and emotional stress, contact your primary care doctor for an appointment, take the questionnaire with you, and discuss next steps, such as finding a therapist or support group, or taking medication.

You may also want to talk with your clergyperson, a trusted friend, or a close family member. Securing support from other family members, friends, and community groups is essential. It may be hard to ask for and/or accept help, but you cannot do it all alone. Think in terms of concrete actions that can help. Could a friend pick up groceries for you or your elder? Could a neighbor do yard work for you or give you a lift to the doctor's? Could a friend or relative keep the elder company so that you can take a break—go to a movie, the gym, take a walk or a drive, or do some shopping for yourself? Perhaps you could set up a regular visit from a friend (yours or the elder's) so that you don't feel so isolated or overloaded. You may not be able to reciprocate, but don't worry. The people who care about you want to help, and you may be able to return the help at a later time.

You may feel that you are the only one dealing with an elder who is demanding, difficult, or belligerent. You may feel sad that your elder is in need and confused about your new role as caregiver. You may also be dealing with siblings or other family members who criticize you or do not share in caring for the elder. Some caregivers find support groups helpful. They allow caregivers to share their experiences, exchange information, and point each other toward organizations that have been particularly helpful. Some support groups may be linked to stress management or exercise classes.

Support groups also encourage caregivers to care for themselves and help remind you that it is not selfish for caregivers to attend to their own needs. Many support groups are run by professionals, such as social workers, and can help caregivers devise productive strategies for dealing with intra-family conflicts or tensions that may arise around difficult caregiving decisions.

There are many organizations to help you find a support group suited to your needs. Some are organized around a particular city or region, while others are focused on the kind of illness an elder may have. Support groups can be in person or they can be online. There are also some health care providers that provide caregiver support groups. Call your doctor or your health insurance provider to get referrals to groups covered under your health plan.

One of the best ways to find support groups in your area is through the Family Caregiver Support Program in your state. Contact your local Area Agency on Aging (AAA) through the Eldercare Locator, 800-677-1116 toll free.

If you want to talk with caregivers who are in similar situations, the AARP Web site has online forums where you can ask and answer questions, share your caregiving experiences, and learn from others. There's even an online group dedicated to discussing the film Caring for Your Parents.

The National Family Caregiver Support Program (NFCSP)

The NFCSP is administered through the U.S. Administration on Aging (AoA) and its nationwide "aging network," made up of 56 state government agencies and 655 Area Agencies on Aging (AAAs), with more than 25,000 local community programs, such as senior centers and Councils on Aging (COAs).

The program targets two groups: adults who are caring for elders and the disabled, and grandparents who are caring for grandchildren. The information below focuses on eldercare services.

NFCSP primarily serves family caregivers of adults 60 years of age and older, and people of any age with a diagnosis of Alzheimer's. There are no income eligibility requirements for information or services. The overall goal of the program is to enhance the caregiver's ability to keep elders at home and in their communities, in a safe and supportive environment. Each program works to provide support in five key areas:

  1. Information about available services, Outreach & Partners, and local programs
  2. Assessment of needs and access to services through one-on-one assistance to identify options and gain access to community-based services
  3. Training, support, and counseling, such as caregiver support groups and training classes to assist caregivers in making decisions, solving problems, and managing stress
  4. Respite programs to provide temporary relief through in-home care, or adult day care or emergency respite (see Respite Services)
  5. Supplemental services, on a limited basis, for home modifications and repair, transportation, and other things it may be difficult for the caregiver to do

Within these five broad areas, each state program designs its own programs, publications, and resources. The NFCSP has made it a priority to provide caregiver support services and resources that are culturally and linguistically sensitive. AAAs and COAs have developed partnerships with organizations linked to specific ethnic and cultural groups. These partnerships make it possible to get publications translated into languages other than English and/or to have bilingual staff available to answer questions on the phone and link caregivers from diverse communities to the broad array of elder services and resources.

The NFCSP program gives priority to caregivers with the greatest social and economic need, but it is also open to middle-income families. There are no income-related eligibility criteria for adult day care and respite programs, although there are limited slots available in these programs. There are no eligibility criteria for case management services that are provided free for the first six months. Eldercare advisers offer an initial needs assessment free of charge. (Additional services may require a nominal fee.)

Each state has its own version of NFCSP. To see the profile of the Family Caregiver Support program in your state, go to the National Conference of State Legislatures Web site or call 202-619-0724. You can also contact your local Area Agency on Aging (AAA) through the Eldercare Locator, 800-677-1116 toll free.

Additional Information for Specific States

Below, you'll find additional state-specific information on caregiver support. The states included have high percentages of elders and/or high elder populations.

Alabama

Alabama Cares offers support for caregivers by providing information, counseling and access to resources to help them in their caretaking responsibilities. These programs vary by area and local program descriptions.

California

California Area Agencies on Aging run caregiver support services.

Florida

The Florida Department of Elder Affairs administers volunteer-based programs to offer respite services to caregivers.

Illinois

The Illinois Department on Aging and the thirteen Illinois Area Agencies on Aging have Caregiver Resource Centers throughout Illinois. To locate a local Caregiver Resource Center, contact your local AAA.

Michigan

Area Agencies on Aging offer caregivers counseling and support groups. These programs vary by locality.

Nevada

Caregiver support programs can be found by contacting the Regional Offices of the Department of Aging Services of Nevada.

New York

The New York Elder Caregiver Support Program assists caregivers in their efforts to care for elders. Programs vary by local AAA chapter.

Ohio

Local AAAs offer caregiver support in the form of counseling and support groups. These programs vary by area.

Pennsylvania

The Pennsylvania Family Caregiver Support Program is available through local AAA chapters. Caregivers and seniors can find local programs and services by visiting the Department of Aging website and clicking on the "Your Local Resources" link.

Texas

Texas is part of the National Family Caregiver Support Program. Services are run through local AAAs.

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