In my last report from the Mild Cognitive Impairment (MCI) Symposium, I wrote about research on disclosing a diagnosis of dementia. But what if the diagnosis is MCI, not dementia? Bill Haley, Professor at the School of Aging Studies at the University of South Florida, gave a presentation focusing specifically on this topic.
Not much is known about how people react to a diagnosis of MCI, Dr. Haley says. It’s a bit of an ambiguous diagnosis, because it means you’re well, but at risk. He and his colleagues designed a study to get a better picture of how this diagnosis affects people with MCI and their families. The study involved questionnaires to measure:
- psychological well-being and functioning
- perceptions of the risk of developing Alzheimer’s and steps taken for prevention
- coping strategies
- service needs
- caregiving efforts by care partners.
The study also included focus groups to capture qualitative comments from people with MCI and their care partners.
Forty-six people (average age 72) recently diagnosed with MCI at Sarasota Memorial Hospital’s Memory Disorder Clinic here in Florida responded to the survey, as did 29 of their care partners.
The diagnosis did not seem to cause much psychological distress for either the people diagnosed with MCI or their care partners. Both groups scored close to normal on tests for depression and life satisfaction.
Both groups reported few difficulties with daily activities. On average, though, care partners reported people with memory loss had more problems than did those people themselves. The problems reported were typically in the areas of travel, finances and taking medicines. Despite these minimal difficulties, the care partners said they spent an average of 24 hours per week helping the person with memory loss.
Perceptions of the risk of developing Alzheimer’s were also different for care partners than for the people with MCI. On average, care partners thought there was a 32 percent likelihood that the people with MCI would develop Alzheimer’s, while the people with MCI put that likelihood at 20 percent. As I’ll discuss in another report, estimates by researchers vary, but are typically higher. Strategies people diagnosed with MCI and their care partners thought would help prevent “progression” to Alzheimer’s, in order of importance, were mental exercise, then physical exercise, then staying optimistic.
These and other coping strategies used by study participants were generally healthy, said Dr. Haley, and included acceptance, active coping (taking action to improve the situation) and planning.
More than half of study participants said they saw a current need for legal services (financial services was the next highest category), but most did not foresee an immediate need for other services such transportation, meals on wheels, home healthcare, support groups, or counseling.
Despite questionnaire responses indicating little immediate need for many services, qualitative comments from care partner focus groups showed stress, frustration and worry. This suggests a need for additional information and counseling.
More research is needed to gather data on how families respond to a diagnosis of MCI over a longer period of time, and to determine what kind of education and information would be helpful for people with MCI and for their care partners.