December 17, 2001
FORMER CAREGIVERS STILL SHOW PSYCHOLOGICAL ILLS YEARS
AFTER CAREGIVING ENDS
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.
"Even two to three years after caregiving ended, former
caregivers reported fewer positive mood states than non-
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 per-
cent 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 con-
tinue 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 continu-
ing 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 psychologi-
cal health after a year or so of the death of their
spouse," Robinson-Whelen said. "However, the former care-
givers 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 care-
givers 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
The study was supported by grants from the National
Institutes of Health and the Veterans Affairs Rehabilita-
tion 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;
Please feel free to contact us at: firstname.lastname@example.org
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