When and where to find caregiving help for Alzheimer’s disease

As a caregiver for a person with Alzheimer’s disease you may only need help during the later stages of the condition when symptoms are at their worse. However, it is recommendable to start building a support network from the very beginning from which to draw assistance whenever it is needed. This network may include members of your caregiver support group, a local chapter of the Alzheimer’s Association, friends, relatives, and if necessary, religious organizations. Additionally, here are a few online resources where you can also find help.

Where to find information, support and advice

Alzheimer's Disease Education and Referral Center

P.O. Box 8250
Silver Spring, MD 20907-8250
Phone: 1-800-438-4380

The ADEAR Center is a service of the National Institutes of Health’s National Institute on Aging. It provides diagnosis, treatment, care, needs, and long-term care information, as well as research and trials related to Alzheimer. Its staff can refer you to local and national resources and give you tips on talking with a doctor, financial and legal planning, medications, and end-of-life care.

alzheimers.gov

This is a free Federal website that offers an overview of Alzheimer’s disease and other forms of dementia, and also info on treatment options, planning and paying for care, and caregiving advice. Includes links to authoritative, updated resources from related organizations and agencies.

Alzheimer's Association

225 N. Michigan Avenue
Floor 17
Chicago, IL 60601
Phone: 1-800-272-3900

Provides information, a help line, and support to Alzheimer caregivers and care receivers. There are local chapters all over the country offering support groups, many of which help with the early stages of the disease.

Alzheimer's Foundation of America

322 Eighth Avenue, 7th Floor
New York, NY 10001
Phone: 1-866-232-8484

Offers information on how to care for Alzheimer patients and lists services for them as well. Includes a hotline, publications, educational materials, and info for caregivers and families through sister organizations.

Eldercare Locator

Phone: 1-800-677-1116

Helps caregivers find home care, adult daycare, nursing homes, and other community resources. This is a federally-funded service of the Administration on Aging.

National Institute on Aging Information Center

P.O. Box 8057
Gaithersburg, MD 20898-8057
Phone: 1-800-222-2225
TTY: 1-800-222-4225

Provides publications about aging in English and Spanish which can be viewed, printed, and ordered online. Together with the National Library of Medicine, it offers a special website for seniors.

 

Where to find help for daily home care

Home health care services

 

Services

They send a home health aide to help care and/or provide company for the person with Alzheimer’s disease at home. They may come for a few hours at a time, or stay for 24 hours.

 

 

Costs

·         They charge by the hour.

·         Medicare may cover some of the costs.

·         Not covered by most insurance plans.

·         All costs not covered by Medicare, Medicaid, or insurance must be paid out of pocket.

How to find them

·         Ask your doctor or other healthcare provider.

·         Look in the phone book under ‘home health care.’

 

 

 

 

Questions to ask

·         Is the service licensed and accredited?

·         How much do they charge?

·         What does the cost include and not include?

·         How many hours a day and days a week will the aide be available?

·         How do they check the background and experience of aides?

·         How are the aides trained?

·         Can you get special help in an emergency?

·         What types of emergency care do they provide?

·         Who can you contact if there is a problem?

Meal services

Services

They provide home delivery of hot meals but do not feed the patient.

Costs

·         The patient must be eligible for this service based on local guidelines.

·         Some groups provide this service for free while others charge a small fee.

How to find them

·         Call the Eldercare Locator or visit its website (see above).

·         Call Meals on Wheels at 1-888-998-6325.

Adult day care services

 

Services

They give the caregiver a break by picking up the Alzheimer patient at home, taking them a safe space with activities and personnel who meet their needs in an adult day care facility, and then taking them back home.

 

Costs

·         They charge by the hour.

·         Not covered by most insurance plans.

·         All costs not covered by insurance must be paid out of pocket.

How to find them

·         Call the Eldercare Locator or visit its website (see above).

·         Call the National Adult Day Services Association at 1-877-745-1440.

Respite services

Services

They provide stays in a nursing home or similar place ranging from a few days to a few weeks to give the caregiver a break rest or go on vacation.

 

 

Costs

·         They charge by the number of days or weeks.

·         Medicare or Medicaid may pay for up to 5 days in a row in an inpatient facility.

·         Not covered by most insurance plans.

·         All costs not covered by Medicare, Medicaid, or insurance must be paid out of pocket.

How to find them

·         Visit the National Respite Locator Service.

Geriatric care managers

Services

Make home visits and suggest services and help get those services.

 

Costs

·         They charge by the hour.

·         Not covered by Medicare.

·         Not covered by most insurance plans.

·         All costs not covered by insurance must be paid out of pocket.

How to find them

·         Call the National Association of Professional Geriatric Care Managers at 1-520-881-8008.

Mental health counselor or social worker

Services

Help deal with stress, understand negative feelings, and develop plans for unexpected events.

 

Costs

·         They charge by the hour; fees may vary.

·         May be partially covered by Medicare or Medicaid.

·          Covered by some insurance plans.

·         All costs not covered by insurance must be paid out of pocket.

How to find them

·         Find out if your health insurance plan covers any counselors or services.

·         Ask your doctor, local family services agencies, and community mental health agencies for referrals.

Hospice services

Services

Provide end-of-life care at home or in a facility, keep the dying patient comfortable and pain-free, and support the family.

 

Costs

·         They charge by the number of days or weeks.

·         May be covered by Medicare or Medicaid.

·          Not covered by most insurance plans.

·         All costs not covered by insurance must be paid out of pocket.

 

How to find them

·         Call the American Hospice Foundation at 1-202-223-0204.

·         Call the National Association for Home Care and Hospice at 1-202-547-7424.

·         Call the Hospice Foundation of America at 1-800-854-2402.

·         Call the National Hospice and Palliative Care Organization at 1-800-658-8898.

 

Where to find help from state and federal government

 

 

Medicare

Phone: 1-800-633-4227
TTY: 1-877-486-2048

The federal insurance program that covers some medical expenses for people aged 65 and older.

·         Part A pays for hospital costs after you pay a deductible and short stays in a nursing home for certain medical conditions.

·         Part B pays 80% of the cost of doctor’s fees, some tests, x-rays, medical supplies, and other services.

·         Part D pays for some medications.

Medicaid

Phone: 1-877-267-2323
TTY: 1-866-226-1819

The federal/state combined program for low-income people and families. It covers some types of long-term care for people and their families that meet certain financial requisites. 

Program of All-Inclusive Care for the Elderly

Phone: 1-800-772-1213

PACE combines benefits from Medicare and Medicaid and may cover some or all of an Alzheimer patient’s long-term care needs, such as medical and social service costs. PACE allows eligible individuals to remain at home as opposed to moving to a facility. It is only available in some states and locations in those states, and may charge a monthly fee.

 

Social Security Disability Income

Phone: 1-800-772-1213
TTY: 1-800-325-0778

Provides help for disabled people under 65 years of age. The caregiver must prove the person with Alzheimer’s disease is not able to work, will have the condition for at least a year, or his or her condition is expected to result in death. ‘Compassionate allowances’ help individuals with early-onset Alzheimer to get benefits more quickly.

State Health Insurance Assistance Program

SHIP offers free counseling and advice about Medicare coverage and benefits in all states.

Department of Veteran Affairs

Phone: 1-877-222-8387

The VA may offer veterans long-term care and some at-home care. There may be a waiting list for nursing homes.

 

 

National Council on Aging

Phone: 1-202-479-1200

This private group has a free service that can help caregivers find federal and state benefit programs that can help pay for prescription medication, heating bills, housing, meal programs, and legal services, as well as provide financial assistance, veteran’s benefits, employment or volunteer work, and general information and resources.

 

 

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