Frontotemporal dementia (FTD) is the second most common cause of early-onset dementia behind Alzheimer's disease, typically appearing between 40 and 60 years of age. However, few studies have looked at the personal experiences or coping styles of people with FTD. Researchers will interview people with FTD and their caregivers to understand their experiences with the disease. This information will help create better treatments and therapies for those affected by FTD.
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Participants with FTD
The purpose of this observational study is to explore the experience and coping strategies of people with FTD and their spouse/partner caregivers. FTD is the second most common cause of early-onset dementia after Alzheimer disease. Currently, few published studies describe the personal experience or coping styles of individuals with FTD.
In this study, semistructured interviews will be conducted with 20 to 30 pairs of people with FTD and their spouse/partner caregivers. Both sets of interviews will be audiotaped, transcribed, and subjected to thematic content analysis. Themes emerging in both members of each pair will be compared and contrasted to understand the subjective experience of the disease. Insight into the personal illness experiences of individuals with FTD will inform future clinical intervention studies.
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Geolocation is 39.3042055, -76.557493
Johns Hopkins University
Geolocation is 40.8409822, -73.9447994
Geolocation is 39.9583587, -75.1953934
University of Pennsylvania
National Human Genome Research Institute
Barbara B. Biesecker
National Human Genome Research Institute (NHGRI)