Former caregivers still show psychological ills years after caregiving ends

December 12, 2001

COLUMBUS, Ohio - 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 Ohio State University 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 percent of former caregivers showed mild to severe depression at two to three years after their spouses' death - not significantly less than the 43 percent depression rate among current caregivers.

"One assumption has been that the psychological health of caregivers would improve once the burden of caregiving ends," said Susan Robinson-Whelen, the lead author of the study. "However, we found that the negative effects of long-term caregiving for a spouse with dementia may continue well beyond the caregiving years."

Robinson-Whelen began studying the health of caregivers as a post-doctoral fellow in psychiatry at Ohio State. She is now a researcher at the Center of Excellence on Healthy Aging with Disabilities at the Houston VA Medical Center. She co-authored the study with Yuri Tada, Robert MacCallum, Lynanne McGuire and Janice Kiecolt-Glaser, all of Ohio State. The study appears in the current 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, said Kiecolt-Glaser, 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 noted that the control group in her study - those who had never been caregivers -- had a depression rate of only 15 percent, compared to the rate of over 40 percent for former and current caregivers. "We didn't see the improvements you would hope and expect to see after caregiving has ended," she said.

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 noncaregivers 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 noncaregivers.

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 said. "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," she said.

Robinson-Whelen said 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.

However, the results do show that former caregivers may still need psychological help and support, even though their caregiving duties are over. "Caregiving, especially for a spouse with dementia, is very difficult and the effects can linger for years," she said. "Former caregivers need more attention given to their needs."
The study was supported by grants from the National Institutes of Health and the Veterans Affairs Rehabilitation Research and Development Service. #

Contact: Susan Robinson-Whelen, (713) 791-1414, ext. 6159

Janice Kiecolt-Glaser, (614) 292-0033

Written by Jeff Grabmeier, (614) 292-8457;

Ohio State University

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