For the past 10 years, I have had the privilege of leading a support group for family caregivers of persons with frontotemporal dementia (FTD) and related disorders.
The group’s creation was based on an observation among our clinicians at the OHSU Aging and Alzheimer’s Clinic that the typical Alzheimer’s Disease support group did not always meet the needs of families dealing with FTD.
A closer look at the hallmark symptoms of frontotemporal degeneration will help explain why this may be so.
While much of the public is familiar with the symptoms of Alzheimer’s disease, there continues to be a general lack of knowledge concerning FTD, the second most commonly diagnosed degenerative dementia.
FTD is a disease that typically affects adults in their 50s and 60s, and because of that it can affect work and family relationships in ways that are different from that of dementia in older adults. It is not unusual for people with FTD to be initially misdiagnosed as having a psychiatric disturbance due to their younger age of onset and unusual behaviors in the presence of generally preserved memory.
While the symptoms may vary from one individual to the next, frequent early signs include changes in personality, poor judgment, language problems or trouble planning and organizing activities. The person’s behaviors may become inappropriate; for example, speaking to strangers openly or engaging in compulsive actions like overeating.
FTD can lead to loss of judgment, inhibition and empathy, resulting in poor financial decisions or disrupted relationships. Often people with frontotemporal degeneration have little insight into their own deficits and thus become a caregiving challenge by engaging in risky activities and resisting offers of help.
For these and many other reasons, family members of persons with FTD and related disorders can experience stress, fatigue and despair. A caregivers’ group can offer not only emotional support in the face of the daily demands of caregiving, but can at times provide practical solutions to problems stemming from difficult behaviors.
The expressions of recognition and empathy among group members as they share with each other challenges of the previous month attest to the fact that no one has to be alone on this most difficult of journeys.
Kathy Wild, Ph.D. has been providing neuropsychological evaluations at the Layton Aging and Alzheimer’s Disease Center for over 25 years.
This article originally appeared in the The Layton Center’s newsletter, the Alzheimer’s Update, a biannual publication that features stories on Layton Center and national research, experiences of volunteers in some of our studies, and cognitive health. Subscribe here.