Caring for the Caregivers
HealthScout
March 24, 2001
SATURDAY, March 24 (HealthScout) -- People who care for psychotic relatives are more at risk for mental illness themselves, claims a new British study.
"It's been suspected, but there's never been a study specifically addressing the issue of caregivers,"' says lead author Dr. Tonmoy Sharma, head of the cognitive psychopharmacology section, Institute of Psychiatry, Maudsley Hospital, King's College, London.
"The fact that one is living with a psychotic individual or one is caring for a psychotic individual, I think that in itself is quite distressing, plus any other things that might happen as one goes along," Sharma says.
The study included caregivers of 50 relatives diagnosed with schizophrenia a few months earlier. The caregivers ages ranged between 16 and 68. They included parents (70 percent), siblings (17.5 percent), spouses (5 percent), and other relatives such as grandparents, uncles and aunts (7.5 percent).
Interviews and questionnaires were used to assess the mental and physical health of the caregivers. These included issues such as stress levels, coping strategies and general health.
"We wanted to characterize what happens early in the course of the illness," Sharma says.
What they found was disturbing.
As early as three months, 12 percent of caregivers were showing signs of mental health problems.
"This wasn't huge depression; this wasn't an issue of big problems in terms of them requiring a lot of support themselves. But it was certainly enough to cause distress to the caregivers," Sharma says.
And if caregivers can't find relief, it's possible they could develop serious mental health problems. Sharma plans to follow this study's caregivers for four years to get an idea of the long-term impact.
Sharma found caregivers were most distressed by difficult behaviors -- moodiness, suspicion, embarrassing appearance, hallucinations -- of their mentally ill relative. Many caregivers also said they didn't receive enough help from mental health services.
"The issue is how, what and where can we make sure all these things cannot happen," Sharma says.
The study was published in a recent issue of the British Journal of Psychiatry.
Britain's National Health Service is using Sharma's study to develop strategies to support caregivers. Sharma suggests caregivers need more education about mental illness and more psychological support, including counseling.
Caring for a mentally ill relative can be extremely difficult, and caregivers need mutual support and education, says Irene S. Levine, research scientist and liaison to families, Nathan S. Kline Institute for Psychiatric Research in Orangeburg, N.Y.
Caregivers need a clear diagnosis, along with a thorough understanding of mental illness and treatments for their relative.
"Some of the problems result from the fact that there's often a lack of communication between professionals and families," Levine says.
"Families can be enabled to be partners, and stress can be minimized if they're seen as a full partner in helping a severely mentally ill person move toward recovery," she says.
Levine says it can be especially difficult when elderly parents have to look after a mentally ill adult child.
In large part, society has abrogated responsibility for caring for mentally ill people, she says.
"There is a lack of housing, and much of the housing that exists is substandard or woefully inadequate. Instead, many times families are the place where people are discharged as a place of last resort and sometimes elderly parents don't even have a choice," Levine says.
"People are just discharged to the home because there are no other alternatives and (parents) become de facto case managers who have to function 24 hours a day, seven days a week," she says.
What To Do
The Nathan S. Kline Institute has a reference guide for families that provides a list of mental health Web sites. The free, 15-page booklet is available by writing to Stuart Moss, health sciences librarian, Nathan S. Kline Institute for Psychiatric Research, 140 Old Orangeburg Road, Orangeburg, N.Y., 10962. Or you can contact him at moss@nki.rfmh.org.
Other sources of information for caregivers include the National Alliance for the Mentally Ill or the National Institutes of Mental Health.
For more HealthScout stories on mental illness, click here.
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Copyright © 2001 Rx Remedy, Inc.
This news story is not produced by the American Psychological Association and does not necessarily represent the opinions of the association.