Dementia Caregivers Go From Distress to Relief
Most feel weight lifted when patient dies, research finds
WEDNESDAY, Nov. 12, 2003 (HealthDayNews) -- Family members who care for relatives with dementia experience a great deal of distress in the year before the patient dies, but tend to feel relief when the person passes away.
Such were the findings of a study appearing in the Nov. 13 issue of the New England Journal of Medicine.
The issue of family caregivers is a big issue and one that is only going to get bigger. According to the study authors, more than 6 million adults in the United States provide long-term, unpaid care to elderly members of their family. That's difficult enough, but when the person has dementia, which more than 2 million Americans do, the challenges are compounded.
"There's something different about taking care of someone whose behavior is different and who you may not get a lot of emotional feedback from and who you may be a little frightened of because they're more unpredictable. Family members may think they are going to do this forever because they don't know when it will end," says Myra Glajchen, director of the Institute for Education and Research in Pain and Palliative Care at Beth Israel Medical Center in New York City. "The caregiver burden is not equal in all cases, and for this group with dementia, we need to sit up and take notice."
"This phenomenon is going to become more and more common as time goes on," adds study author Richard Schulz, a professor of psychiatry and director of the Center for Social and Urban Research at the University of Pittsburgh. "The particular challenge will be when the baby boomers get old, especially in light of the fact that there are fewer people to take care of the baby boomers. These kinds of stressors are going to increase dramatically from the population point of view."
Schulz and his colleagues looked at 217 family caregivers to persons with dementia during the year preceding the patient's death and for a period of time after the death. At the time of enrollment, the mean age of the caregivers was 65, of whom 84.3 percent were women. About half were spouses and half were non-spouses (usually children). The mean age of the patients was 81.
Half of the caregivers reported spending at least 46 hours a week assisting patients with activities of daily living (such as bathing and eating) and instrumental activities of daily living (such as preparing meals and handling finances).
More than half (59 percent) said they felt they were on duty 24 hours a day. Almost half of the caregivers who worked outside home said they had to reduce their work hours because of the demands of caregiving, while 18 percent of the total number of caregivers stopped working entirely.
Almost three-quarters (72 percent) of the caregivers said the death of the patient was somewhat or very much a relief to them.
"I had not seen this recovery phenomenon, this reduction in depression post-bereavement," Schulz says. "Caregivers typically show an increase in depression pre- to post-death, which you don't get here."
The message, Schulz continues, is that "if you want to understand bereavement, you really need to look at it in the context of where and how it's taking place."
Holly Prigerson, author of an accompanying article and an associate professor of psychiatry, epidemiology, and public health at Yale University School of Medicine, feels that depression overall is high and needs to be addressed. "Primary-care physicians should be screening for depression and giving antidepressants," she says.
Schulz feels resources should be concentrated in the period of time before the patient dies. "That's where all the challenges and the stresses and the negative impacts are felt on the caregivers," he says.
He also feels caregivers should have access to kinds of resources that are currently available only to hospice individuals (such as pre-bereavement counseling and better pain control for patients). One looming problem is that it's very difficult to get hospice care for dementia patients because most hospices require that patients only have six months or less to live.
"It's difficult to prognosticate when somebody [with Alzheimer's] is going to die," Glajchen points out.
But this is no doubt another issue that experts need to address. "I don't have exact data on this, but my hunch is that more and more deaths will occur in the context of bereavement as opposed to being unexpected, surprising events that are not anticipated," Schulz says. "More and more, we're going to see situations where you go through a prolonged period of caregiving rather than death arriving suddenly on your doorstep."
Another new study finds caregivers of people with dementia are in overall worse health than those who don't care for them.
The study, appearing in the November issue of Psychological Bulletin, found the caregivers had a 23 percent higher level of stress hormone than the non-caregivers. Their levels of antibody response was also 15 percent lower, the study says.