Mild Cognitive Impairment Symposium: Disclosing a Diagnosis of Dementia

Brian Carpenter, Associate Professor of Psychology at Washington University, gave a presentation at the MCI Symposium on disclosing a diagnosis of dementia (not MCI) to families.  Prior research has suggested that up to half of doctors don’t tell patients and families that they’ve made a diagnosis of suspected dementia, he said, because:

• they don’t think patients and families will understand
• they view the benefit of treatment as modest
• they worry a diagnosis will trigger a strong negative emotional reaction. 

Alexandra Zaleta and Brian Carpenter, Ph.D

Studies by Dr. Carpenter and his colleagues, as well as by other researchers, do not show this type of negative reaction, however.  During the first year after receiving a dementia diagnosis, most patients and caregivers do not experience an increase in depression or anxiety.  In fact, many say they are relieved to know what has been causing symptoms, and what steps they can take to prepare for the future, Dr. Carpenter says.

In a series of studies, he and his colleagues (including Alexandra Zaleta, who was at the MCI Symposium and is a graduate student working in his lab) have been examining how doctors tell patients and families about a diagnosis, and what patients and families hear.  They’ve found the process to be quite complex.  To understand the process, they’ve interviewed or recorded patients and families at several points in time:

• before patients and families meet with a doctor (to find out what expectations they have in advance of their doctor’s appointment)
• during the actual visit, when the doctor shares the diagnosis.  The doctor may also share recommendations or ideas during the visit.  Patients and families leave with their own set of ideas about the diagnosis and what to do.
• a couple of days after the diagnosis was shared, and again at one month, six months and 12 months after the visit.

To illustrate the potential for disconnect between what a doctor thinks he’s communicated and what patients and families think they’ve heard, he showed a video of a doctor talking with a family about a dementia diagnosis.  Dr. Carpenter and colleagues later interviewed the patients and family to see what they understood the doctor had said.  They then compared the family’s understanding with that of the doctor.  About 60 percent of patients and 80 percent of family members or caregivers had an accurate understanding of the diagnosis.  This research shows that patients and families are not always getting the message doctors are trying to convey.

More research is needed, Dr. Carpenter says, to understand and improve the process of giving a diagnosis.  A minority of people do experience more depression and anxiety after a diagnosis of dementia, so it would be helpful to know if there are factors are associated with this negative reaction.  It’s not yet clear which features of the disclosure process matter, or how to improve the process.  Future research will focus on these issues.

Comments

[Don Moyer]

It would be nice if the research looked at differences between treating the diagnosis as about a "disease" lacking a "cure" and a condition which can be managed.