Many caregivers realize on their own that they need a breather from caregiving and turn to family members' friends, paid aides, or day care. John Stedman, for example, didn't hesitate to call on his brothers and sisters, even at the last minute, if he realized on a Saturday morning that he and Sharon needed some time to go shopping by themselves. But others, because of guilt or a conviction that no one else can quite do the job, or because of a sense that this is rightfully only their responsibility, don't readily seek assistance. Regular time off, however, is so essential to the caregiver's well-being and ability to continue to provide care that this recommendation should be presented not as a suggestion but as a prescription. In fact, it is advisable to write down this recommendation--along with a few other essentials--on a prescription slip. Research shows that patients are more likely to follow instructions written on a prescription than those that are presented verbally.9
Caregivers need to be periodically evaluated with respect to their physical state, psychological state, and their capacity to carry out caregiving tasks. This can be managed fairly easily if the caregiver, as well as the person she or he is caring for, has the same doctor. When this is not the case--and it often isn't--evaluation can be difficult. The caregiver usually doesn't see the need for evaluation, and reimbursement is problematic.
Heru suggests that the caregiver be assessed at the same time as the patient. If the caregiver's appearance, demeanor, or answers to some general inquiries (for example, "How are things going for you?") suggest the presence of a condition that requires medical attention, the caregiver should be referred for further evaluation and treatment. Heru thinks that because depression is relatively common in caregivers--particularly in the caregivers of patients with dementia--and because it so profoundly impairs both the caregiver's quality of life and her ability to provide care, physicians should be particularly alert to symptoms of depression in the caregivers of their patients.
Caregivers place great value on physician availability. Albert treasures the hour that her husband's neurologist spends with them at each 3-monthly visit and appreciates even more that he has provided them with his home phone number along with specific evening and weekend hours when he is available by telephone.
Joseph Friedman, MD, a neurologist and PD specialist in Warwick, RI, pointed out that caregivers need increased attention, support, and guidance when patients experience psychological changes. Caregivers find psychological symptoms, whether medication-induced, as in PD, or a consequence of the illness, far more unsettling and difficult to manage than physical disabilities. In fact, Friedman emphasized, psychotic symptoms are the most common reason for nursing home placement.
Clearly, neurologists and primary care physicians cannot provide caregivers with all the supportive services that they require but they can put them in touch with the available resources. A number of Web sites provide a wealth of information for caregivers. The Alzheimer's Association (www.alz.org) and National Family Caregivers Association (www.nfcacares.org), among other groups, offer information, counseling, and support groups at no cost. Providing caregivers with a list of relevant Internet and community resources would be helpful.
Caregivers derive immense satisfaction from a clinician who tells them that what they are doing is difficult, worthwhile, and important. Mignone, however, believes that doctors too rarely spend the few minutes it takes to provide such support. "Caregivers are often taken for granted," he said. "They are saints who are ignored." He makes the effort to tell his patients' caregivers that he knows that what they're doing is often a "lonely and incredibly generous task." Friedman said that caregivers deserve sympathy and praise but that he and his colleagues frequently fail to point out that "they're doing a good job."
Caregivers confirmed the importance of simple statements of encouragement and appreciation. Albert pointed with gratitude to the fact that her husband's doctor tells them "how well we're both doing." Barnicoat found that only 2 things sustained her during the 3 years she cared for her parents. One was a friend going through a similar experience, with whom she talked and laughed almost daily. The other was that her parents' doctors acknowledged the importance of what she was doing. "They understood that I was trying to give my parents the best quality of life," she said, "and they let me know that what I was doing was valuable." *
References
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2. Schulz R, O'Brien AT, Bookwala J, et al. Psychiatric and physical morbidity effects of dementia caregiving: prevalence, correlates, and causes. Gerontologist. 1995;35:771-791.
3. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282:2215-2219.
4. Weitzenkamp DA, Gerhart KA, Charlifue MA, et al. Spouses of spinal cord injury survivors: the added impact of caregiving. Arch Phys Med Rehabil.1997; 78:822-827.
5. Heru AM, Ryan CE, Iqbal A. Family functioning in the caregivers of patients with dementia. Int J Geriatr Psychiatry. 2004;19:533-537.
6. Mittelman MS, Ferris SH, Shulman E, et al. A family intervention to delay nursing home placement of patients with Alzheimer disease: a randomized controlled trial. JAMA. 1996;276:1725-1731.
7. Mittelman MS, Roth DL, Coon DW, et al. Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer's disease. Am J Psychiatry. 2004;161:850-856.
8. Schulz R, O'Brien A, Czaja S, et al. Dementia caregiver intervention research in search of clinical significance. Gerontologist. 2002;42:589-602.
9. Swinburn BA, Walter LG, Arroll B, et al. The green prescription study: a randomized controlled trial of written exercise advice provided by general practitioners. Am J Public Health. 1998;88:288-291.
