Caring for Caregivers
Am Fam Physician. 2000 Dec 15;62(12):2584-2587.
Long-term care given by family members is a central component of our current health care system and, thus, a critical social policy issue.1 In this issue of American Family Physician, Parks and Novielli2 make a compelling case for family physicians to play an important role in providing comprehensive care to patients with dementia and their caregivers.
The demographic imperative is powerful, given the tremendous projected growth in the older population. Currently, about 4 million adults have Alzheimer's disease, and the number is projected to reach 14 million by 2050. The increase will be most marked in those older than 85 years, who are at greatest risk of developing Alzheimer's disease, with 30 to 50 percent of persons in that age group being affected.3
Despite the significant improvement in diagnostic and treatment modalities, therapies used in the immediate future are more likely to delay progression of the disease and potentially increase the period of home care before institutionalization than to arrest or reverse the disease. Thus, at least in the foreseeable future, patients with dementia are likely to experience progressive decline with increasing dependence that will require assistance and support, probably from a family member.
Approximately 25 million family caregivers currently provide an estimated $194 billion in care annually.4 The authors note that 80 percent of patients with dementia are cared for by family members.2 Many of these caregivers are more likely to experience anxiety, depression and a sense of isolation, as well as increased rates of morbidity and mortality. Some researchers estimate that 60 to 70 percent of relatives caring for demented persons at home have stress and medical or psychiatric illness. This stress can be reduced when community support programs are available.5
Caregivers frequently visit family physicians and may account for 21 percent of all visits to family practice offices, thus creating opportunities to detect caregiving stress and burden. A useful Web site (http://www.nfcacares.org/dr-cgrtips.html) suggests a number of screening tools for assessing the burden and stress associated with caregiving.
Despite the increasing pressure on family physicians in managed care environments to limit direct contact time with patients, the reward for identifying caregiver stress is likely to be significant. Using instruments that can be self-administered or asking nurses or medical assistants to help conduct screening can supplement limited physician time. Failure to detect anxiety or depression associated with caregiving may result in psychosomatic complaints that may cause multiple visits, in addition to being difficult to treat and necessitating an even greater time commitment by the physician.
Many geriatricians have suggested that a central tenet of geriatric care is the need to support or bolster family members who act as caregivers. During contact with subspecialists, the patient and caregiver are likely to encounter a disease-oriented physician whose primary focus is diagnosis and treatment and who fails to address the broader psychosocial, economic and support problems. This responsibility falls within the domain of the family physician, who often is strategically placed to address patient and family issues. The family physician may also have an enduring, trusting relationship with the family, which permits opportunities to detect problems and ensures greater credibility when making recommendations. This relationship is likely to be of particular importance when the issue of institutionalization must be addressed.
The physician can help caregivers by being sensitive to their needs. Suggestions that may help caregivers include the following:
Link with the local Alzheimer's support group, which allows sharing, support and assistance with problem solving.
Take care of the caregiver's health. Failure to do so may result in institutionalization of the patient.
Maintain a life outside of caregiving to reduce the risk of burnout. A senior companion program available in many communities should provide regular respite. Day care programs can allow for personal time.
Share the responsibility. This is a family burden. Even distant family members can provide financial support to help with caregiving.
Become knowledgeable about the disease to be prepared for what to expect.
Recognize that the behaviors that are maddening are not deliberate. Look for strengths in the patient. Recall happy times.
Realize that it is okay to let go. A time may come when the patient can no longer be cared for at home, despite past commitments to never place that person in a nursing home.
Understand the legal and financial issues. Make sure someone has decision-making capacity, such as a durable power of attorney, to allow for future treatment decisions.
Acknowledge and appreciate the tremendous contribution that is being made to the patient's quality of life in this final stage. It is something to feel good about in the future.
Physicians may be able to help caregivers more effectively with the following approach:
Become knowledgeable about dementia and the burden that caregiving imposes.
Know community resources. Keep pamphlets in the waiting area such as the book, “The 36-Hour Day,”6 a wonderful resource for caregivers and physicians.
Ask about the caregiver. Just listening can be most helpful. The physician's office may be the caregiver's only social outlet.
Expect anger and frustration from the caregiver. Do not personalize this. It may indicate burnout and depression, which can be addressed.
Schedule a special time for discussion or refer the caregiver to counseling if questions are overwhelming.
Be sure the caregiver understands the effects and side effects of any medication.
Discuss advance directives.
If possible, maintain continuity, especially if the patient is hospitalized or placed in a nursing home.
Be accessible despite the frustrations.
Never say, “Nothing can be done.” Help is always possible. Comfort measures can always be provided.
Despite the fact that most family members are committed and dedicated caregivers, some are not. Some may be entirely inadequate as caregivers and may neglect or abuse the patient. At the other extreme, family members frequently sacrifice their own health in pursuit of quality of life for a relative with dementia. This is particularly true in contemporary society where the caregiver, usually a daughter, is older, may still have work and other family responsibilities, and may lack the support of siblings. In the future, the number of available caregivers is likely to diminish because of lower birth rates, increased geographic scatter and the disruption associated with divorce.
Family physicians should, and often do, embrace the responsibility of serving not only as the physician but also as the advisor and counselor for the demented individual and the family. The family physician, as a result of special training and skills in applying a biopsychosocial approach, is ideally prepared to respond to this increasingly burdensome phenomenon.
1. Robinson KM. The family's role in long-term care. J Gerontol Nurs. 1997;23:7–11.
2. Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Physician. 2000;62:2613–20.
3. Statistical Data on Alzheimer's Disease. The Alzheimer's Disease and Related Disorders Association, Inc, 1992.
4. Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff. 1999;18:182–8.
5. Shulman KI, Cohen CA. Quality of life and economic aspects of community support programs for caregivers of dementia patients. Am J Geriatr Psych. 1993;1:211–20.
6. Mace NL, Rabins PV. The 36-hour day. 3d ed. Baltimore: Johns Hopkins University Press, 1999.
Copyright © 2000 by the American Academy of Family Physicians.
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