(Alzheimer’s Disease Education and Referral Center) Some caregivers need help when the person is in the early stages of AD. Other caregivers look for help when the person is in the later stages of AD. It’s okay to seek help whenever you need it. As the person moves through the stages of AD, he or she will need more care. One reason is thatmedicines used to treat AD 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 your caregiver support group, the local chapter of the Alzheimer’s Association, family, friends, and faith groups.
Call the ADEAR Center at 1-800-438-4380, the Alzheimer’s Association at 1-800-272-3900, and the Eldercare Locator at 1-800-677-1116 to learn about where to get help in your community. Below we list other national and local resources that can help you with caregiving.
Information Resources
Here are some places along with their phone numbers that can give you support and advice:
Alzheimer’s Disease 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 AD. 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, 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:
talking with the doctor
financial and legal planning
medicines
comfort care at the end of life
alzheimers.gov
www.alzheimers.gov
This website a free resource about Alzheimer’s disease and related dementias from the Federal Government. It has an overview of the disease as well as information about treatment options, planning and paying for care, and advice for caregivers. Each section contains links to authorative, up-to-date resources from agencies and organizations with expertise in these areas.
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 AD and their caregivers. Local chapters across the country offer support groups, including many that help with early-stage AD. Call or go online to find out where to get help in your area. The Association also funds AD 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 AD as well as a list of services for people with AD. 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 helpful publications about aging. Many of these publications are in both English and Spanish. They can be viewed, printed, and ordered from the Internet. The NIA, along with the National Library of Medicine, also offers a website specially designed for seniors called NIHSeniorHealth, which is available at www.nihseniorhealth.gov.
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 AD 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
What they do:
Send a home health aide to your home to help you care for a person with AD. 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 health care professional about good home health care services in your area.
Look in your phone book under “home health care.”
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?
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?
Home Health Care Services
Some home health care services are very good; others are not. You should get as much information as possible about a service before you sign an agreement. You need to ask home health care providers for references from people who have used their services. If possible, check for any complaints filed against a service. At Medicare’s Home Health Compare,www.medicare.gov/HomeHealthCompare, you can learn more about some of the home health care providers in your state. Or call Medicare for the same information. You can also check with community, county, or State agencies that regulate health services or contact or contact the Better Business Bureau in your area.
Meal services
What they do:
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 AD 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:
The Eldercare Locator can help at 1-800-677-1116 or www.eldercare.gov. Or, call the Meals on Wheels organization at 1-888-998-6325 or visit their website at www.mowaa.org.
Adult day care services
What they do:
Provide a safe environment, activities, and staff who pay attention to the needs of the person with AD in an adult day care facility
Provide a much-needed break for you
Provide transportation—the facility may pick up the person, take him or her to day care, and then return the person home
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:
Call the National Adult Day Services Association at 1-877-745-1440, or visit their website atwww.nadsa.org. You also can call the Eldercare Locator at 1-800-677-1116, or visit their website at www.eldercare.gov.
Respite services
What they do:
Provide short stays, from a few days to a few weeks, in a nursing home or other place for the person with AD
Allow you to get a break to rest or go on a vacation
What to know about costs:
Respite services charge by the number of days or weeks that services are provided.
Medicare or Medicaid may cover the cost of up to 5 days in a row of respite care in an inpatient facility. See below for more information on Medicare and Medicaid.
Most insurance plans do not cover these costs.
You must pay all costs not covered by Medicare, Medicaid, or insurance.
How to find them:
Visit the National Respite Locator Service at http://archrespite.org/respitelocator.
Geriatric care managers
What they do:
Make a home visit and suggest needed services
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:
Call the National Association of Professional Geriatric Care Managers at 1-520-881-8008, or visit its website at www.caremanager.org.
Counseling from a mental health or social work professional
What they do:
Help you deal with any stress you may be feeling
Help you understand your feelings, such as anger, sadness, or feeling out of control and overwhelmed
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
What they do:
Provide care for a person who is near the end of life
Keep the person who is dying as comfortable and pain-free as possible
Provide care in the home or in a hospice facility
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:
National Association for Home Care and Hospice at 1-202-547-7424 orwww.nahcagencylocator.com
Hospice Foundation of America at 1-800-854-3402 or www.hospicefoundation.org
National Hospice and Palliative Care Organization at 1-800-658-8898 or www.nhpco.org/find-hospice
Government Benefits—Financial Help from Federal and State Government Programs
Federal and State Government programs can provide financial support and services.
Medicare
Medicare is a Federal Government health insurance program that pays some medical costs for people age 65 and older. It also pays some medical costs for those who have gotten Social Security Disability Income (discussed later in this section) for 24 months.
Here are brief descriptions of what Medicare will pay for:
Medicare Part A
Hospital costs after you pay a certain amount, called the “deductible”
Short stays in a nursing home for certain kinds of illnesses
Medicare Part B
80 percent of the costs for certain services, such as doctor’s fees, some tests, x-rays, and medical equipment
Medicare Part D
Some medication costs
You can find more information about Medicare benefits on the Internet at www.medicare.gov, or call 1-800-633-4227, TTY: 1-877-486-2048.
Medicaid
Medicaid is a combined Federal and State program for low-income people and families. Medicaid will pay the costs of some types of long-term care for some people and their families. You must meet certain financial requirements.
To learn more about Medicaid:
Phone: 1-877-267-2323
TTY: 1-866-226-1819
www.medicaid.gov
Or, contact your state health department. For a state-by-state list, visit www.medicaid.gov/medicaid-chip-program-information/by-state/by-state.html.
Program of All-Inclusive Care for the Elderly (PACE)
PACE is a program that combines Medicare and Medicaid benefits. PACE may pay for some or all of the long-term care needs of the person with AD. It covers medical, social service, and long-term care costs for frail people. PACE permits most people who qualify to continue living at home instead of moving to a long-term care facility. PACE is available only in certain States and locations within those States. Also, there may be a monthly charge. You will need to find out if the person qualifies for PACE.
To find out more about PACE:
Phone: 1-877-267-2323
www.medicare.gov/your-medicare-costs/help-paying-costs/pace/pace.html
Social Security Disability Income
This type of Social Security help is for people younger than age 65 who are disabled according to the Social Security Administration’s definition.
You must be able to show that:
The person with AD is unable to work, and
The condition will last at least a year, or
The condition is expected to result in death.
Social Security has “compassionate allowances” to help people with early-onset Alzheimer’s disease, mixed dementia, frontotemporal dementia/Pick’s disease, primary progressive aphasia, and certain other serious medical conditions get disability benefits more quickly.
To find out more about Social Security Disability Income:
Phone: 1-800-772-1213
TTY: 1-800-325-0778
www.ssa.gov
State Health Insurance Assistance Program (SHIP)
SHIP is a national program offered in each State that provides free counseling and advice about coverage and benefits to people with Medicare and their families. To contact a SHIP counselor in your State, visit www.shiptacenter.org.
Department of Veterans Affairs
The U.S. Department of Veterans Affairs (VA) may provide long-term care for some veterans. There could be a waiting list for VA nursing homes. The VA also provides some at-home care.
To learn more about VA healthcare benefits:
Phone: 1-877-222-8387
www.va.gov/health
National Council on Aging
The National Council on Aging, a private group, has a free service called BenefitsCheckUp. This service can help you find Federal and State benefit programs that may help your family. These programs can help pay for prescription drugs, heating bills, housing, meal programs, and legal services.
BenefitsCheckUp also can help you find:
Financial assistance
Veteran’s benefits
Employment/volunteer work
Helpful information and resources
To learn more about BenefitsCheckUp:
Phone: 1-571-527-3900
www.benefitscheckup.org
Citation
https://www.nia.nih.gov/alzheimers/publication/when-you-need-help/getting-help-caregiving
National Institute on Aging