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Getting Help with Alzheimer's Caregiving

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Some caregivers need help when the person is in the early stages of Alzheimer's disease. Other caregivers look for help when the person is in the later stages of Alzheimer's. It's okay to seek help whenever you need it.

Alzheimer's caregiver calling ADEAR Center for information and referral servicesAs the person moves through the stages of Alzheimer's, he or she will need more care. One reason is that medicines used to treat Alzheimer's disease can only control symptoms; they cannot cure the disease. Symptoms, such as memory loss and confusion, will get worse over time.

Because of this, you will need more help. You may feel that asking for help shows weakness or a lack of caring, but the opposite is true. Asking for help shows your strength. It means you know your limits and when to seek support.

Build a support system

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According to many caregivers, building a local support system is a key way to get help. Your support system might include a caregiver support group, the local chapter of the Alzheimer's Association, family, friends, and faith groups.

Resources for Alzheimer's care

Here are some places that can give you support and advice:

NIA Alzheimer's and Related Dementias Education and Referral (ADEAR) Center
Email the ADEAR Center
Phone: 1-800-438-4380

The ADEAR Center offers information on diagnosis, treatment, patient care, caregiver needs, long-term care, and research and clinical trials related to Alzheimer's disease. Staff can refer you to local and national resources, or you can search for information on the website. The Center is a service of the National Institute on Aging (NIA), part of the Federal Government's National Institutes of Health. They have information to help you understand Alzheimer's disease. You can also get hints on other subjects, including:

Alzheimers.gov
Explore the Alzheimers.gov portal for information and resources on Alzheimer’s and related dementias caregiving from across the federal government.
Phone: 1-800-438-4380

Alzheimer's Association
Phone: 1-800-272-3900

The Alzheimer's Association offers information, a help line, and support services to people with Alzheimer's and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage Alzheimer's disease. Call or go online to find out where to get help in your area. The Association also funds Alzheimer's research.

Alzheimer's Foundation of America
Phone: 1-866-232-8484

The Alzheimer's Foundation of America provides information about how to care for people with Alzheimer's, as well as a list of services for people with the disease. It also offers information for caregivers and their families through member organizations. Services include a hotline, publications, and other educational materials.

Eldercare Locator
Phone: 1-800-677-1116

Caregivers often need information about community resources, such as home care, adult day care, and nursing homes. Contact the Eldercare Locator to find these resources in your area. The Eldercare Locator is a service of the Administration on Aging. The Federal Government funds this service.

National Institute on Aging Information Center
Email the NIA Information Center
Phone: 1-800-222-2225
TTY: 1-800-222-4225

The NIA Information Center offers free publications about aging. Many of these publications are in both English and Spanish. They can be viewed, printed, and ordered online.

Direct services: Groups that help with everyday care in the home

Here is a list of services that can help you care for the person with Alzheimer's at home. Find out if these services are offered in your area. Also, contact Medicare (or call 1-800-633-4227) to see if they cover the cost of any of these services.

Home care services

Home care services—not to be confused with home health care services—send a home care aide to your home to help you care for a person with Alzheimer's. These aides provide personal care and/or company for the person. They do not provide skilled medical care. Aides are usually not medical professionals. They assist with daily activities such as bathing and dressing and may even help with light housekeeping, transportation, and errands. Home care aides may come for a few hours or stay for 24 hours.

What to know about costs:

  • Home care services generally charge by the hour. Some services charge a flat rate for staying overnight.
  • Medicare and private health insurance may cover some home care costs, though nonmedical care is generally not covered. Check with your health plan.
  • Long-term care insurance may cover personal care and homemaker services.

How to find them:

  • Ask your doctor or other healthcare professional, family, and friends to recommend home care services in your area.
  • Use an online tool such as the Home Care/Hospice Agency Locator tool from the National Association for Home Care and Hospice.

Home health care services

Home health care aides are skilled, licensed medical professionals who come to your home and help you recover from a hospital stay, illness, or injury. Aides provide skilled nursing care, physical, occupational, or speech therapy, and other medical services coordinated by your doctor. You need a doctor’s order for home health care services.

What to know about costs:

How to find them:

  • Your doctor, health care professional, or hospital discharge social worker can give you a list of agencies that serve your area.
  • Use the Home Health Compare tool from Medicare.gov.
  • Contact the Eldercare Locator or call 1-800-677-1116.

Meal services

Meal services bring hot meals to the person's home or your home. The delivery staff do not feed the person.

What to know about costs:

  • The person with Alzheimer's must qualify for the service based on local guidelines.
  • Some groups do not charge for their services. Others may charge a small fee.

How to find them:

Adult day care services

Adult day care services provide a safe environment, activities, and staff who pay attention to the needs of the person with Alzheimer's in an adult day care facility. They also provide transportation. The facility may pick up the person with Alzheimer's, take him or her to day care, and then return the person home. Adult day care services provide a much-needed break for you.

What to know about costs:

  • Adult day care services charge by the hour.
  • Most insurance plans don't cover these costs. You must pay all costs not covered by insurance.

How to find them:

Respite services

Respite services provide short-term care for the person with Alzheimer's at home, in a healthcare facility, or at an adult day center. The care may last for as short as a few hours or as long as several weeks. These services allow you to get a break to rest or go on a vacation.

What to know about costs:

  • Respite services charge by the hour or by the number of days or weeks that services are provided.
  • Most insurance plans do not cover these costs. You must pay all costs not covered by insurance or other funding sources.
  • Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care.
  • Medicaid also may offer assistance. For more information on Medicare and Medicaid, see Paying for Care.
  • There may be other sources of funding in your State. Visit the ARCH National Respite Locator for more information.

How to find them:

Geriatric care managers

Geriatric care managers make a home visit and suggest needed services. They also can help you get needed services.

What to know about costs:

  • Geriatric care managers charge by the hour.
  • Most insurance plans don't cover these costs.
  • Medicare does not pay for this service.
  • You will probably have to pay for this service.

How to find them:

Counseling from a mental health or social work professional

Mental health or social work professionals help you understand your feelings, such as anger, sadness, or feeling out of control and overwhelmed, and help you deal with any stress you may be feeling. They also help develop plans for unexpected or sudden events.

What to know about costs:

  • Professional mental health counselors charge by the hour. There may be big differences in the rates you would be charged from one counselor to another.
  • Some insurance companies will cover some of these costs.
  • Medicare or Medicaid may cover some of these costs.
  • You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

  • It's a good idea to ask your health insurance staff which counselors and services, if any, your insurance plan covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

Hospice services

Hospice services provide care for a person who is near the end of life and is no longer receiving treatment to cure his or her serious illness. Hospice services keep the person who is dying as comfortable and pain-free as possible in the person’s home or a hospice facility. They also support the family by providing end-of-life care. You can stop hospice services at any time if you wish to receive curative treatments again.

What to know about costs:

  • Medicare, Medicaid, Veterans Health Administration, or private insurance plans may cover all hospice costs.
  • If you receive hospice services in an assisted living facility or nursing home, you may need to pay room and board. You must pay all costs not covered by Medicare, Medicaid, or other insurance.
  • Some nonprofit organizations and hospice providers help cover hospice costs on a sliding scale for low-income patients.
  • Once you’ve chosen to receive hospice services, any medicines or treatments intended to cure your terminal illness will not be covered.

How to find them:

This content is provided by the NIH National Institute on Aging (NIA). NIA scientists and other experts review this content to ensure it is accurate and up to date.

Content reviewed: December 24, 2019

nia.nih.gov

An official website of the National Institutes of Health