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Alzheimer’s Caregiving

Getting Help with Alzheimer's Caregiving

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 services

As 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

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: adear@nia.nih.gov
Phone: 1-800-438-4380
www.nia.nih.gov/alzheimers

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:

Alzheimer's Association
Phone: 1-800-272-3900
www.alz.org

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
www.alzfdn.org

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 toll-free hotline, publications, and other educational materials.

Eldercare Locator
Phone: 1-800-677-1116
www.eldercare.gov

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: niaic@nia.nih.gov
Phone: 1-800-222-2225
TTY: 1-800-222-4225
www.nia.nih.gov/health

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 to see if they cover the cost of any of these services. See below for Medicare contact information.

Home Health Care Services

Home health care services send a home health aide to your home to help you care for a person with Alzheimer’s. These aides provide care and/or company for the person. They may come for a few hours or stay for 24 hours. Some home health aides are better trained and supervised than others.

What to know about costs:

  • Home health services charge by the hour.
  • Medicare covers some home health service costs.
  • Most insurance plans do not cover these costs.
  • You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

  • Ask your doctor or other healthcare professional about good home health care services in your area.
  • Search the Internet for "home health care" in your area.

Here are some questions you might ask before signing a home health care agreement:

  • Is your service licensed and accredited?
  • What is the cost of your services?
  • What is included and not included in your services?
  • How many days a week and hours a day will an aide come to my home?
  • Is there a minimum number of hours required?
  • How do you check the background and experience of your home health aides?
  • How do you train your home health aides?
  • Can I get special help in an emergency?
  • What types of emergency care can you provide?
  • Whom do I contact if there is a problem?

For more information about home-based long-term care, visit What Is Long-Term Care?

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

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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. They keep the person who is dying as comfortable and pain-free as possible, and provide care in the home or in a hospice facility. They also support the family in providing in-home or end-of-life care.

What to know about costs:

  • Hospice services charge by the number of days or weeks that services are provided.
  • Medicare or Medicaid may cover hospice costs.
  • Most insurance plans do not cover these costs.
  • You must pay all costs not covered by Medicare, Medicaid, or insurance.

How to find them:

Read about this topic in Spanish. Lea sobre este tema en español.

If you are interested in learning more about Alzheimer's & Dementia, please call us at 1-800-438-4380, Mon-Fri, 8:30 am-5:00 pm Eastern Time or send an email to adear@nia.nih.gov