Needs Often Vary
Alayne Barnicoat is typical. Now a retired schoolteacher, she cared for both parents when Alzheimer disease (AD) first developed in her mother and then in her father. The nights in the emergency room and the irate phone calls from the assisted living facility where the parents stayed for a while were hard enough to deal with, but what hurt Barnicoat most was seeing her parents' vitality and intellect seep away. "I got so despondent," said this normally vivacious woman, "that I locked the door to my balcony so that I wouldn't be tempted to throw myself off." It didn't occur to Barnicoat to seek help from a health professional, support group, or anywhere else. "I knew that I was going through a tough time, but I felt it was just something I had to do. And anyway, there was nothing anyone could say that would be helpful. This was my responsibility and I was doing what I had to."Despite the volumes of research documenting the adverse physical and psychological consequences of caregiving, the caregivers themselves, particularly women caring for their husbands, don't consider themselves especially burdened, don't think they need special attention, and often find the term "caregiver" itself somewhat off-putting. This attitude, which goes hand in hand with the notion that it is their disabled relative who is suffering and needs attention, makes caregivers reluctant to acknowledge difficulty, to seek help, and even to participate in an evaluation.
Research shows that psychological support can have a profound influence not only on how caregivers feel but on how long they can provide care.6 Mary Mittelman, DrPH, a psychiatric epidemiologist, has been studying the impact of psychological support on spouses who provide care for patients with AD. In a 9-year study conducted at the Silberstein Aging and Dementia Research Center at New York University School of Medicine, she and her associates randomly assigned 406 spouse caregivers to either usual care or a counseling and support program. The support program included 6 individual and family counseling sessions, followed by participation in weekly support groups. Ad hoc counseling was provided as needed.6
Caregivers in the counseling and support program experienced fewer depressive symptoms than those in the control group.7 This is something worth noting because, as Mittelman pointed out, "a depressed caregiver is not a good caregiver." More striking than the effect on depression, caregivers in the support program delayed placing their spouses in a nursing home for almost a year (329 days) longer than did those in the control group. As Mittelman noted, this delay in nursing home placement not only means a better quality of life for the patient but also saves the estimated $60,000 annual cost of nursing home care.
Mittelman believes that clinicians who care for patients with dementia should refer caregivers to programs like the one she and her colleagues developed. The Alzheimer's Association and other groups run many support programs, but she acknowledges that caregivers are likely to resist such referrals. She encountered considerable reluctance from many caregivers when she attempted to enroll caregivers in her study.
Most communities have caregiver support groups. Some people find them helpful, but they're not for everyone. Barnicoat had no interest in attending a support group because she "didn't want to listen to other people's troubles." But more than that, she was convinced that "there was nothing anybody in a group could say to me that would make it easier."
Louise Albert, a 77-year-old writer, has cared for her husband--battling PD--for 20 years. She attended support groups intermittently for a couple of years, sometimes with her husband, sometimes without, but didn't find them particularly helpful. The problem for her was that the people in the groups were often at different stages and grappling with different issues.
But both caregiver research and caregivers themselves point to a number of approaches that are likely to be both welcomed and helpful. Richard Schulz, PhD, a social psychologist at the University of Pittsburgh, who has recently reviewed the interventions that purport to benefit caregivers, finds a "strong consensus that all caregivers are likely to benefit from enhanced knowledge about the disease, the caregiving role, and resources available to caregivers."8
Every caregiver I spoke to echoed the value of information about the disease. Albert, for example, thinks that a caregiver should know as much as possible about the disease. She finds her husband's neurologist "wonderful," in part because he paints a realistic picture of how her husband's disease is likely to unfold, and although being realistic, he emphasizes the positive: "A glass half-full rather than half-empty approach," she said.
Care for the Caregiver
Researchers, clinicians, and caregivers agree that respite care is critical. Alison Heru, MD, director of the Family Program at Butler Hospital in Providence, RI, emphasizes to caregivers that they should not do it "24/7." "I encourage caregivers to call upon other family members and friends," she explained. "And I tell them to schedule breaks and make use of day-care facilities."Robert Mignone, MD, a psychiatrist and neurologist in Sarasota, FL, has come across many caregivers who are reluctant to acknowledge that they are burdened and need support. "I use the airplane oxygen mask analogy with these people," he said. "I remind them that airline attendants instruct passengers traveling with children to put their oxygen mask on first if cabin air pressure falls so that they can best help their kids. I tell caregivers that they need to take care of themselves if they want to provide good care to their disabled relative. I encourage caregivers to take time for themselves. I tell them that they're not shirking their duty if they get someone in to help."
