Caring for a person with dementia is hard work. Not only are caregivers watching a loved one decline, they are bathing them, feeding them and otherwise meeting all of their personal needs. While a long-term care facility may be a good solution for an exhausted caregiver, new research suggests that the depression and anxiety associated with caring does not ease up after a relative is placed in a nursing home or other long-term care facility.
"We expected that since much of the stress of caregiving, particularly for dementia patients, has to do with the hard work of providing care and being vigilant there would be some recovery among caregivers when these stressors were removed. However, we didn't see this," says lead author Dr. Richard Schulz, a professor of psychiatry at the University of Pittsburgh School of Medicine.
Schulz's study was part of a larger study, published in The Journal of the American Medical Association (JAMA), that followed over 1,200 pairs of patients with Alzheimer's disease and their caregivers for about four years. For many years experts believed that caregivers whose relatives passed away while in their care recovered remarkably well. However, Schulz and his team looked at the health and well-being of 180 caregivers during the in-home experience and after they placed their relatives in a nursing home. After following these participants for 18 months, they found that those who institutionalized their relatives were just as depressed and anxious after placement as they were when they were in-home caregivers.
Caregivers at Highest Risk
The transition to a nursing home was hardest for spouses, as opposed to the children of relatives in a nursing home. About half of the spouses tended to visit daily and continued to provide care, such as helping with eating and dressing. New stressors also cropped up, such as advocating for better care for the patient by working with the nursing home staff and administration. For some, the added burdens of traveling to the facility every day and the cost of care were additional stressors. Caregivers with inadequate support from friends and family also experienced more emotional turmoil, as did people who had found caregiving rewarding.
"When you look at at-home caregiving, people report that it's highly burdensome but at the same time they'll tell you that they get something positive out of it," Schulz says. The people who found the most meaning in caregiving and who were the most strongly attached to their relative had the most difficult transitions. Predictably, guilt was also a problem. "There is a universal consensus that being institutionalized is something to be feared and dreaded, and family members don't want to do it," Schulz says. "Spouses, in particular, feel that they've abandoned or failed their relatives in some way."
Coping with the Transition
The researchers concluded that caregivers need to be treated for their emotional distress with counseling, support groups and/or antidepressant and anti-anxiety mediation. They also need education about how nursing homes work, so that they can figure out a role for themselves, especially if they enjoyed providing direct care. Also since their relatives are likely to die in the nursing home, caregivers should work with the nursing home staff on end-of-life planning, which will help them later with the bereavement process.
"We tend to forget about caregivers after the person goes into a nursing home, but we need to make sure they are supported," Schulz says.
