The University Record, October 8, 1996
Dementia: What makes the bad news easier
for spouses to bear?
When a loved one is diagnosed with an incurable illness such as dementia, spouse-caregivers need help to cope with the stress. Receiving an orientation to the diagnostic process from a health care professional is one thing that's helpful, accordin g to U-M researcher Cathleen M. Connell.
By Diane Swanbrow
News and Information Services
If your husband or wife develops an incurable illness, would you rather hope for the best or know the worst by getting a firm diagnosis?
Over three-fourths of the spouses of dementia patients surveyed by University researchers said it was very or extremely important to find out what was wrong with their loved ones. But coping with the bad news afterward was far from easy for many of them.
"We were informed by our family doctor that there was nothing to be done," one spouse reported. "We didn't know where to go from there."
"He cried when he could not do the simple exercises and thought if he read and studied more his memory would improve," said another.
"It was hard to have my husband sitting in the same room and have the doctors discussing his illness in front of him," said a third.
The study of 233 spouse-caregivers was conducted by Cathleen M Connell, associate professor of health behavior and health education, School of Public Health, and Mary P. Gallant, a postdoctoral fellow at the School of Social Work.
Several spouses said they were disappointed that physicians didn't provide referrals to agencies that could help them. Others mentioned the stress of knowing that something is wrong but nothing can be done about it.
But about 44 percent of the spouses surveyed had ideas about how to make the diagnosis of dementia easier for patients and for family members.
"An orientation to the diagnosis and assessment process would be very beneficial," says Connell. "This could be provided by a nurse, health educator or social worker in collaboration with a geriatric assessment team."
Also helpful would be a psychosocial evaluation of patient and family members, including their preferences for when and how a diagnosis is disclosed. "For example, some caregivers may prefer to hear the diagnosis before the patient," Connell notes, "so that they can control their emotions and be more supportive when the patient is first informed."
Knowing what to expect and having some input into the diagnostic and assessment process may greatly reduce the stress for patient, family members and physician, Connell observes.
"Responses to bad news vary considerably, depending on the meaning of the diagnosis and the patient's and family's previous experiences with illness," she adds.
"I cope with my feelings about the disease as I do with all other unpleasant intrusions into my life," said one wife. "I ignore them."
Connell is also director of education and information transfer core at the Michigan Alzheimer's Disease Research Center. The study, funded by the U.S. Public Health Service, was published in a recent issue of the Journal of the American Geriatrics Society.