Caregiving negative effects can last years: Study
Depression rate didn’t drop
The negative psychological impact of caregiving for a spouse with Alzheimer’s or other forms of dementia continues for years after the spouse dies, new research suggests.
The study by researchers at the Houston VA Medical Center and The Ohio State University in Columbus found that, even three years after their spouse had died, former caregivers still showed levels of depression and loneliness similar to those in current caregivers.
For example, 41% of former caregivers showed mild to severe depression at two to three years after their spouses’ death — not significantly less than the 43% depression rate among current caregivers.
"One assumption has been that the psychological health of caregivers would improve once the burden of caregiving ends," says Susan Robinson-Whelen, PhD, the lead author of the study and an assistant professor of physical medicine and rehabilitation at Baylor College of Medicine in Houston. "However, we found that the negative effects of long-term caregiving for a spouse with dementia may continue well beyond the caregiving years."
The study appears in the December issue of the Journal of Abnormal Psychology.
The researchers studied 49 former caregivers, 42 continuing caregivers, and 52 noncaregiving control participants. The former and current caregivers all cared for a spouse suffering from some form of dementia, such as Alzheimer’s disease. All the participants were assessed on a variety of psychological measures for four years. The former caregivers were tested once before the death of their spouse and three times following the death.
The most striking finding was that levels of depression did not significantly improve even two to three years after caregiving duties ended, says Janice Kiecolt-Glaser, PhD, who is a professor of psychiatry at Ohio State. While many of the former caregivers showed evidence of relatively mild depression, it was still enough to impair their well-being, she said. Researchers were also concerned that the depression had not significantly decreased over time.
Kiecolt-Glaser notes that the control group in her study — those who had never been caregivers — had a depression rate of only 15%, compared to the rate of over 40% for former and current caregivers. "We didn’t see the improvements you would hope and expect to see after caregiving has ended," she says.
Results also showed that former caregivers experienced fewer negative moods — such as guilt and anger — than did current caregivers, and did not differ significantly from non-caregivers in such negative mood states. However, former caregivers did not see a similar return to normal in how often they felt positive emotions, such as energy and enthusiasm. Even two to three years after caregiving ended, former caregivers reported fewer positive mood states than non-caregivers.
Moreover, former caregivers also showed higher levels of loneliness than did non-caregivers. "Most studies suggest many widowed people see improvements in their psychological health after a year or so of the death of their spouse," Robinson-Whelen says. "However, the former caregivers in this study still had relatively high levels of depression and loneliness, even several years after the death of their spouse."
The former caregivers who were most likely to report psychological problems were those who said they often had recurring, unwanted thoughts about their caregiving experiences, or who said they tried to actively avoid such thoughts. Former caregivers who reported less social support from family and friends also were more likely to show signs of depression or other problems.
One area where former caregivers did show significant improvement was stress: After three years, former caregivers showed levels of stress very similar to those of non-caregivers. "You would expect that once the daily constant demands of caregiving were over that stress would go down," Robinson-Whelen says.
She says it is not known whether these results would apply to caregivers who cared for spouses with problems other than dementia. However, caring for a spouse with dementia may create special problems that make adjustment following death more difficult, she said.
"Caregiving, especially for a spouse with dementia, is very difficult and the effects can linger for years," she says. "Former caregivers need more attention given to their needs."
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