Reproduced with permission of Family Caregiver Alliance, Caregiver Resource Center, San Francisco. www.caregiver.org
An estimated 16-23% of families across the U.S. may be caring for an adult with a cognitive impairment. Cognitive impairments include a variety of diseases and disorders such as Alzheimer’s disease, Parkinson’s disease, stroke, head injury or AIDS dementia. Although each disorder has its own unique features, family members and caregivers often share common problems, situations and strategies, regardless of the diagnosis.
Cognitively impaired persons typically require special care, including (often 24-hour) supervision, specialized communication techniques, management of bizarre or difficult behaviors, incontinence, and help with activities of daily living (ADLs), e.g. bathing, eating, transferring from bed to a chair or wheelchair, toileting and/or other personal care.
While each caregiving situation is different, caregivers are likely to experience enormous stress from their responsibilities in caring for a loved one. Many individuals become depressed or anxious and others report physical ailments associated with the stress of caregiving. For this reason, finding practical ways to cope and get help are especially important.
Caregivers often learn through trial and error the best ways to help an impaired relative maintain routines for eating, hygiene and other activities at home. Special training in the use of assistive equipment and managing difficult behaviors may be needed. It is also important to follow a safety checklist.
Be aware of potential dangers from:
Be sure to provide:
Brain-impaired individuals may experience a range of behavioral problems including communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggressive or impulsive behaviors, lack of motivation, memory problems, incontinence, poor judgment and wandering.
Helpful suggestions for managing these problems include keeping language simple and asking one question at a time. Break down tasks and questions. For example, instead of asking, "would you like to come in and sit down and have a snack?", use simple commands such as, "come here," "sit down," and "here’s a snack."
Wandering and poor judgment may signify the need for 24-hour supervision. Be sure to run through the home safety checklist. In addition, learn whom to contact in your community in case of an emergency. You may wish to consult with friends, family, church groups, social service agencies, senior centers and support groups. If wandering or aggressive behaviors are problems, contact with emergency police, fire and medical systems may be necessary.
Some caregivers are reluctant to acknowledge the strain associated with the many tasks, responsibilities and long hours devoted to the caregiving role. Many feel overwhelmed or burned out. It is important not only to give yourself credit for the work you are doing as a caregiver, but also to arrange for some support and an occasional break from daily duties. While extended vacations may not be realistic, it is critical for everyone to schedule some relaxation time for themselves. This may be a short outing, quiet time at home, a visit with a friend, etc. In order to get time off, the caregiver may require respite care/assistance from others to stay with the patient.
Monitor your own health; stress may contribute to a variety of health problems. Balanced meals, adequate sleep, and attention to persistent ailments are essential ways to take care of yourself. They will also enhance your physical ability, coping skills and stamina to provide care. By taking care of yourself, you will be better able, both physically and emotionally, to provide care for your loved one.
The isolation often felt while caring for an impaired loved one at home can be devastating in itself. For many, this is eased by attending support group meetings with other persons in similar situations. Support groups provide emotional support and caregiving tips, as well as information on community resources from others who have learned from experience. Therapeutic counseling may also be beneficial for further problem solving. A professional counselor can help you cope with feelings of anger, frustration, guilt, loss, or competing personal, work and family demands.
Financial and legal planning are important to consider. Issues such as financing long-term care, protecting your assets, obtaining the authority for surrogate decision-making, and other matters often need attention. Make an appointment with an attorney knowledgeable in estate planning, probate, and, if possible, public benefits planning.
Other areas often requiring planning include coordination between community services and other involved friends and family members. Decisions about placement in a nursing home or other care options can often be facilitated by a professional familiar with brain impairments, caregiving and community resources.
It is a good idea to take some time to evaluate, in writing, both short and long-term needs. This can be done by first listing the things you may need help with, now or in the future. Next, list all your informal supports (e.g., family, friends, neighbors) and decide how each person might help meet the needs. List any advantages and disadvantages which might be involved in asking these people to help. Write down ideas for overcoming the disadvantages. Repeat the list for formal supports (e.g., community services, home care workers, day programs). It is important to set a time frame for any action or activities planned.
Helping Yourself Help Others: A Book for Caregivers, 1994, Rosalyn Carter, Times Books, 201 East 50th St., New York, NY 10022.
The 36-Hour Day, Nancy Mace and Peter Rabbins, 1991 edition, The Johns Hopkins University Press, Baltimore, MD, available also from the Alzheimer’s Association (800) 621-0379.
Home Safety Guide for Older People, Jon Pynoos & Evelyn Cohen, 1990, Serif Press, Inc., 1331 "H" Street NW, Washington, DC 20005.
Long-distance Caregiving, Angela Heath, 1993, American Source Books, P.O. Box 280353, Lakewood, CO 80228.
How to Care for Aging Parents, Virginia Morris, 1996, Workman Publishing Co., 708 Broadway, New York, NY 10003-9555.
Taking Care of Caregivers, D. Jeanne Roberts, 1991, Bull Publishing Company, 148 E. Third Ave., #200, San Mateo, CA 94401.
The Caregiver Survival Series, James R. Sherman, 1994, Pathway Books, 700 Parkview Terr., Golden Valley, MN 55416-1521.
Head-Injury: A Guide for Families, Dana Deboskey and Karen Morin, 1989, HDI Publishers, 10131 Alfred Lane, Houston, TX 77041.
Caring for Your Aging Parents: A Planning and Action Guide, Donna Cohen and Carl Eisdorfer, 1993, Jeremy P. Tarcher/Putnam Book, 200 Madison Ave., New York, NY 10016.
Caring for Your Aging Parents, Kerri S. Smith, 1992, American Source Books, P.O. Box 280353, Lakewood, CO 80228.
Family Caregiver Alliance, 1996, Incidence and Prevalence of the Major Causes of Adult-Onset Brain Impairment in the United States and California. San Francisco, CA.
U.S. Congress Office of Technology Assessment, 1990, US Government Printing Office, Confused Minds, Burdened Families, Washington, DC.
Brubaker, Timothy, 1985, Caregiver’s Action Plan, Continuing Care Coordinator, Vol. 4, No. 6.
The number of services for brain-impaired adults, their families and caregivers is growing, although in some communities, agencies may be difficult to locate. Caregivers should consider contacting senior centers, independent living centers, Area Agencies on Aging, local chapters of national organizations and foundations such as the Alzheimer’s Association, Brain Injury Association, Multiple Sclerosis Society and others. Nursing home ombudsman programs, community mental health centers, social service or case management agencies, schools of nursing, and church groups may be other sources of assistance. The following listings also offer information, publications, and referrals.
Family Caregiver Alliance
690 Market St., Ste. 600
San Francisco, CA 94104
(800) 445-8106 (in CA)
Family Caregiver Alliance supports and assists caregivers of brain-impaired adults through education, research, services and advocacy.
FCA’s Information Clearinghouse covers current medical, social, public policy and caregiving issues related to brain impairments.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, head injury, Parkinson’s and other debilitating brain disorders that strike adults.
American Association of Retired Persons (AARP)
601 "E" Street NW
Washington, DC 20049
(202) 434-2277 (publications on caregiving)
Children of Aging Parents
Woodburn Office Campus
1609 Woodburn Rd., Ste. 302A
Levittown, PA 19057
National Association of Area Agencies on Aging
1112 - 16th Street NW, Ste. 100
Washington, DC 20036
(202) 296-8130 (nationwide AAA listings)
(800) 677-1116 (national Eldercare locator)
National Federation of Interfaith Volunteer Caregivers
Kingston Medical Arts Bldg.
368 Broadway, Suite 103
Kingston, NY 12401
(914) 331-1358 (nationwide volunteer affiliates)
Well Spouse Foundation
610 Lexington Ave., Suite 814
New York, NY 10022-6005
Brain Injury Association
National Parkinson Foundation