For Caregivers: Finding Support and Help
By Arline Kaplan © 2000
Because you are a devoted caregiver, you are at risk of becoming a hidden victim of the disease. For your own well-being and that of the person you are caring for, it is important that you
- Monitor your stress level and find ways to reduce it.
- Identify what national and community resources are available.
- Be willing to ask for help.
Recognizing and Easing Caregiver Stress
Caregiving can be intense, demanding and stressful. It is vital for you to recognize signs of stress in yourself. These can include withdrawing from friends and activities that once brought you pleasure, feeling constantly overwhelmed and exhausted, being unable to concentrate and developing physical ailments (e.g., blurred vision, stomach irritation or high blood pressure). To reduce your stress level, consider arranging regular health checks for yourself, enlisting help from family, friends and others with the task of caregiving, taking rests (breaks, respite) from caregiving, joining a support group and talking with a trusted minister or rabbi or mental health counselor.
Here are some sources of support and information for you:
919 N. Michigan Ave., Suite 1100
Chicago, IL 60611-1676
(800) 272-3900; (312) 335-8700
fax: (312) 335-1110
web site: www.alz.org
This national voluntary organization helps your loved one and you obtain information on care options; find help for legal, financial and lifestyle needs; and gain access to clinical drug trials. Books and reading lists are available through the Greenfield Library: (312) 335-9602. The association’s 200+ local chapters also provide educational resources, referral to services and sponsor support groups.
P.O. Box 9307
St. Louis, MO 63117-0307
web site: www.alz.org/caregiver/programs/safereturn.htm
This nationwide program has helped locate and return more than 5,000 individuals with dementia to their families. It provides identification products (e.g., jewelry), a national photo/information database, a 24-hour emergency crisis line and wandering behavior education.
Alzheimer’s Disease Education and Referral Center (ADEAR)
P.O. Box 8250
Silver Spring, MD. 20907-8250
fax: (301) 495-3334
web site: www.alzheimers.org.
Established by the National Institute on Aging, ADEAR provides patients and their families with updates on Alzheimer’s disease research; referrals to state, regional and federal resources; the latest publications on topics related to Alzheimer’s disease; and information about clinical trials of medications and other therapies for dementia.
American Health Assistance Foundation (AHAF)
15825 Shady Grove Rd., Suite 140
Rockville, MD 20850
(800) 437-2423; (301) 948-3244
web site: www.ahaf.org
AHAF, a nonprofit organization, has a family relief program that awards emergency grants to help cover the costs related to care and treatment of Alzheimer’s patients. It also funds research and produces a variety of pamphlets on Alzheimer’s disease.
web site: www.aoa.gov.elderpage/
Sponsored by the Administration on Aging, the locator is a nationwide toll-free number for finding services for older adults throughout the nation. Even if you live in a different state than your loved one, the locator can help you find home-delivered meals, legal services, respite care or other services.
American Association of Retired Persons
601 E St., N.W.
Washington, DC 20049
web site: www.aarp.org
The national AARP office makes available information on caregiving, living wills, long-term care and healthy living.
and Levels of Care Organizations
National Association of Professional Geriatric Care Managers
1604 N. Country Club Rd.
Tucson, AZ 85716-3102
fax: (520) 325-7925
web site: www.caremanager.org
This nonprofit, professional organization can help you locate a geriatric care manager in your area and has a list of questions to ask when looking for a geriatric care manager. Geriatric care managers can help you plan and arrange for the right mix of services that you and your loved one need.
American Medical Association (AMA)
515 N. State St.
Chicago, IL 60610
fax: (312) 464-4184
web site: www.ama-assn.org
The AMA provides an online brochure, Alzheimer Disease, which includes questions you may want to ask your doctor. It also maintains AMA Physician Select, an online directory, to help you locate physicians in your area who specialize in neurology and geriatric psychiatry (e.g., specialties that work with dementia patients).
American Health Care Association
1201 L St., N.W.
Washington, D.C. 20005-4014
(202) 842-4444; (202) 842-3860
fax: (202) 842-3860
web site: www.ahca.org
A federation of more than 12,000 care providers, such as nursing homes and assisted living facilities.
National Association of Social Workers
750 First St., N.E., Suite 700
Washington, D.C. 20002-4241
(800) 638-8799; (202) 408-8600
fax: (202) 336-8310
web site: www.socialworkers.org
NASW strives to enhance the effective functioning and well-being of individuals, families and communities through its work and advocacy. The organization also provides a “Find a Clinical Social Worker” search tool to help you locate a qualified clinical social worker in your area.
National Adult Day Services Association
409 Third St. S.W., Suite 2000
Washington, D.C. 20024
fax: (202) 479-0735
web site: www.ncoa.org/nadsa/
A unit of the National Council on Aging, this association can help you locate licensed or certified adult day care services in your area. It also publishes a online guide Selecting an Adult Day Services Center and a directory of adult day centers throughout the United States with state-by-state listings.
National Association for
228 7th St., S.E.
Washington, D.C. 20003-4305
fax: (202) 547-3540
web site: www.nahc.org
NAHC represents home health agencies, hospices and home care aid organizations. It provides online information on how to choose a home care provider.
National Hospice and Palliative Care Organization
1700 Diagonal Rd., Suite 300
Arlington, VA 22314
web site: www.nhpco.org
If a doctor says your loved one is terminally ill, this organization can help you locate either in-hospital or home hospice care. Some hospices have special divisions for Alzheimer’s patients. NHPCO provides a Find a Hospice Care Program search tool to help you locate a hospice program in your area.
Clinical Trials Resources on the Internet
A searchable database maintained by the U.S. National Institutes of Health that lists open trials on possible treatments for Alzheimer’s disease or other dementias.
Sponsored by the U.S. Food and Drug Administration and the National Institute on Aging, this site provides information about Alzheimer’s disease clinical trials as well as steps involved in gaining FDA approval for treatments.
This site lists more than 41,000 industry- and government-sponsored clinical trials as well as new drug therapies recently approved by the Food and Drug Administration. You can use the online database to search for clinical trials on Alzheimer’s disease and dementia by geographic region or sign up for the Clinical Trial Notification Service.
Glossary of Common Care Terms
adult day care center
Such centers provide structured, comprehensive programs (e.g., health, social and related support services) in a protected setting during part of a day.
Such services provide private apartments, but also meals, personal care, help with medication, limited supervision, organized activities and nursing services.
Home care provides your loved with supportive services, including nursing care, monitoring of medications, assistance with meals, housekeeping and companionship and supervision.
Normally given in the last six months of your loved one’s life. Hospice care provides services and care either at home or in a health care facility by a team of professionals (e.g., nurses, social workers), clergy, home care aids and volunteers.
Nursing homes provide 24-hour supervised nursing care, personal care, therapy, nutrition management, organized activities, social services, room, board and laundry.
Respite care means giving you the caregiver a break for caregiving. Respite services are usually short-term, temporary or intermittent ongoing services to help you take time off but know your loved one is cared for.
Between Two Words: Special Moments of Alzheimer & Dementia
By Ellen Young and Peter Rabins, Prometheus Books, 1999
In a Tangled Wood: an Alzheimer’s Journey
By Joyce Dyer and Ian Frazier, Southern Methodist University Press, 1996
The Thirty-Six Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illness and Memory Loss in Later Life
By Nancy Mace, Peter Rabins and Paul McHugh, Warner Books, 1992
Therapeutic Caregiving: A Practical Guide for Caregivers of Persons with Alzheimer’s and Other Dementia-Causing Diseases
By Barbara Bridges and Jaime Temairik, BJb Publications, 1996
What You Need To Know About Alzheimer’s—A Guide for Caregivers and Patients
By John Medina, Ph.D., CME Inc. and New Harbinger Publications, Inc., 1999
Your Name is Hughes Hannibal Shanks: a Caregiver’s Guide on Alzheimer’s Disease
By Lela Knox Shanks, Penguin Books, 1999
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