Supplement: Alzheimer's Disease: A Caregiver's Guide, Part 3
October 1, 2006 4 minutes read
Alzheimer's Disease: A Caregiver's Guide, Part 3
Caring for a person with Alzheimer's Disease (AD) at home is a difficult task and can become overwhelming at times. Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior. Research has shown that caregivers themselves often are at increased risk for depression and illness, especially if they do not receive adequate support from family, friends, and the community.
Following are some suggestions and resources to consider when faced with difficult aspects of caring for a person with AD.
Choosing a Nursing Home
For many caregivers, there comes a point when they are no longer able to take care of their loved one at home. Choosing a residential care facility—a nursing home or an assisted living facility—is a big decision, and it can be hard to know where to start.
• It's helpful to gather information about services and options before the need actually arises. This gives you time to explore fully all the possibilities before making a decision
• Determine what facilities are in your area. Doctors, friends and relatives, hospital social workers, and religious organizations may be able to help you identify specific facilities.
• Make a list of questions you would like to ask the staff. Think about what is important to you, such as activity programs, transportation, or special units for people with AD.
• Contact the places that interest you and make an appointment to visit. Talk to the administration, nursing staff, and residents.
• Observe the way the facility runs and how residents are treated. You may want to drop by again unannounced to see if your impressions are the same.
• Find out what kinds of programs and services are offered for people with AD and their families. Ask about staff training in dementia care, and check to see what the policy is about family participation in planning patient care.
• Check on room availability, cost and method of payment, and participation in Medicare or Medicaid. You may want to place your name on a waiting list even if you are not ready to make an immediate decision about long-term care.
• Once you have made a decision, be sure you understand the terms of the contract and financial agreement. You may want to have a lawyer review the documents before signing.
• Moving is a big change for both the person with AD and the caregiver. A social worker may be able to help you plan for and adjust to the move. It is important to have support during this difficult transition.
Alzheimer's Disease Education and Referral (ADEAR) Center
P.O. Box 8250
Silver Spring, MD 20907-8250
Telephone: (800) 438-4380; Fax: (301) 495-3334
Web address: www.alzheimers.nia.nih.gov
This service of the National Institute on Aging is funded by the federal government. It offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to AD. Staff answer telephone and written requests and make referrals to local and national resources. Publications and videos can be ordered through the ADEAR Center or via the web site.
Alzheimer's Association
225 North Michigan Avenue, Suite 1700
Chicago, IL 60601-7633
Telephone: (800) 272-3900
Web address: www.alz.org
Email address: [email protected]
This nonprofit association supports families and caregivers of patients with AD. Almost 300 chapters nationwide provide referrals to local resources and services, and sponsor support groups and educational programs. On-line and print versions of publications are also available at the web site.
Children of Aging Parents
P.O. Box 167
Richboro, PA 18954
Telephone: (800) 227-7294
Web address: www.caps4caregivers.org
This nonprofit group provides information and materials for adult children caring for their older parents. Caregivers of people with Alzheimer's disease also may find this information helpful.
Eldercare Locator
Telephone: (800) 677-1116
Web address: www.eldercare.gov
The Eldercare Locator is a nationwide, directory assistance service helping older people and their caregivers locate local support and resources for older Americans. It is funded by the Administration on Aging (AoA), which also provides a caregiver resource called Because We Care—A Guide for People Who Care. The AoA Alzheimer's Disease Resource Room contains information about AD, caregiving, working with and providing services to persons with AD, and where you can turn for support and assistance.
Family Caregiving Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Telephone: (800) 445-8106
Web address: www.caregiver.org
Family Caregiver Alliance is a community-based nonprofit organization offering support services for those caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders. Programs and services include an Information Clearinghouse for FCA's publications.
The National Institute on Aging Information Center
P.O. Box 8057
Gaithersburg, MD 20898-8057
Telephone: (800) 222-2225
Web address: www.nia.nih.gov
The National Institute on Aging (NIA) offers a variety of information about health and aging, including the Age Page series and the NIA Exercise Kit. Caregivers can find many Age Pages on the NIA Publications ordering web site at www.nia.nih.gov/HealthInformation/Publications. NIHSeniorHealth.gov is a senior-friendly web site from NIA and the National Library of Medicine. Located at www.NIHSeniorHealth.gov, the web site features popular health topics for older adults.
The Simon Foundation for Continence
P.O. Box 815
Wilmette, IL 60091
Telephone: (800) 237-4666
Web address: www.simonfoundation.org
The Simon Foundation for Continence helps individuals with incontinence, their families, and the health professionals who provide their care. The Foundation provides books, pamphlets, tapes, self-help groups, and other resources.
Well Spouse Association
63 West Main Street, Suite H
Freehold, NJ 07728
Telephone: (800) 838-0879
Web address: www.wellspouse.org
Well Spouse is a nonprofit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse publishes the bimonthly newsletter, Mainstay.
Source: National Health Institutes, National Institute on Aging. Available at: www.nia.nih.gov/Alzheimers/Caregiving/HomeAndFamily/. Accessed May 17, 2006.
Caring for a person with Alzheimer's Disease (AD) at home is a difficult task and can become overwhelming at times. Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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