Living With Frontotemporal Dementia
- Frontotemporal dementia (FTD) is the second most common cause of early-onset dementia. Alzheimer s disease is the most common. Alzheimer s disease happens most often in the elderly, but FTD typically appears between 40 and 60 years of age. It also has a strong genetic component: Up to 40% of FTD cases are linked to positive family histories. Earlier diagnoses and genetic tests mean that people with FTD will spend more years in earlier stages of disease, aware that they have it. However, few studies have looked at the personal experiences or coping styles of people with FTD. Researchers want to 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.
- To study the experiences of persons with FTD and their primary caregivers.
- Individuals at least 18 years of age who have been diagnosed with FTD.
- Primary caregivers (spouse or partner at least 18 years of age) of individuals who have been diagnosed with FTD.
- Before FTD participants are recruited, a pilot study will test the interview questions. This pilot study will be given to people with Alzheimer s disease and their caregivers. It will study how well people with dementia understand the interview questions.
- FTD study participants will be recruited through dementia care centers.
- All participants will have in-person interviews. These interviews will take up to 1 hour.
- Participants with FTD will answer questions about their experience with the disease. They will talk about their mental abilities, challenges, and coping strategies.
- Caregivers will answer questions about their experience in caring for someone with FTD. They will talk about their challenges and coping strategies. They will also talk about the person with FTD, and how aware they believe that the person is of the dementia symptoms.
- All participants will receive a small gift card as compensation for their time.
- No treatment will be provided as part of this study.
|Study Design:||Time Perspective: Retrospective|
|Official Title:||Challenges of Living With Frontotemporal Dementia: The Perspective of the Affected Individual|
|Study Start Date:||June 2012|
The purpose of the proposed study is to qualitatively explore the experience, conceptualization of disease, and coping strategies of persons with frontotemporal dementia (FTD). FTD is the second most prevalent cause of early-onset dementia after Alzheimer disease, and has a significant genetic origin. Currently, there are no published studies describing the personal experience or coping styles of individuals with FTD. To accomplish the study s objectives, semi-structured interviews will be conducted with 20 to 30 dyads of patients with FTD and their spouse/partner caregivers. The caregivers will be interviewed about the experience of the person with FTD. Both sets of interviews will be audiotaped, transcribed and subjected to thematic content analysis. Themes emerging in both members of each dyad will be compared and contrasted in order to understand the subjective experience of the disease. Insight into the personal illness experiences of individuals with FTD will inform future clinical intervention studies.
Please refer to this study by its ClinicalTrials.gov identifier: NCT01738386
|Contact: Weiyi Mu||(301) firstname.lastname@example.org|
|Contact: Barbara B Biesecker||(301) email@example.com|
|United States, Maryland|
|Johns Hopkins University||Recruiting|
|Baltimore, Maryland, United States, 21205|
|United States, New York|
|New York, New York, United States, 10032-3784|
|United States, Pennsylvania|
|University of Pennsylvania||Recruiting|
|Philadelphia, Pennsylvania, United States, 19104-6056|
|Principal Investigator:||Barbara B Biesecker||National Human Genome Research Institute (NHGRI)|