Alzheimer's Disease Education and Referral Center

Living with Frontotemporal Dementia

Living with Frontotemporal Dementia

Overall Status: 
Brief Description: 

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.

Patient Qualifications: 
Min AgeMax AgeGenderHealthy Volunteers
18 Years
99 Years
Inclusion Criteria: 

    Participants with FTD

    • Diagnosed with any variant of frontotemporal dementia, with documented cognitive impairment, for at least 3 months before interview for this study
    • Diagnosis made by a behavioral neurologist, neuropsychologist, psychiatrist, or a group consensus of any of the above in a specialized dementia center
    • Assessment of none (1) to mild (2) impairment category on the Dementia Disability Rating scale; assessment must be performed by a dementia care specialist with a medical degree
    • Fluent in English

    Caregiver Participants

    • Spouse or partner who provides day-to-day care for the affected individual
    • In contact a minimum of 16 hours per week, on average, with the affected individual
    • Fluent in English
Exclusion Criteria: 

    None listed.

Detailed Description: 

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.

Central Contact Information: 

For more information about this study or the study sites, please contact Weiyi Mu at

Map Marker CityStateZip CodePrimary Contact

Geolocation is 39.3042055, -76.557493

Johns Hopkins University

Geolocation is 40.8409822, -73.9447994

Columbia University
New York
New York

Geolocation is 39.9583587, -75.1953934

University of Pennsylvania
Lead Sponsor: 
National Human Genome Research Institute
Collaborator Sponsor: 
Facility Investigators: 
Barbara B. Biesecker
Principal Investigator
National Human Genome Research Institute (NHGRI)
Study Contact: 
Weiyi Mu
Barbara B. Biesecker
Locations ID 
NCT01738386 (follow link to view full record on in new window)
Official Title: 
Challenges of Living With Frontotemporal Dementia: The Perspective of the Affected Individual
Study Start Date: 
June 2012