Living With Frontotemporal Dementia
| Status: | Terminated |
|---|---|
| Conditions: | Neurology |
| Therapuetic Areas: | Neurology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 7/28/2018 |
| Start Date: | June 13, 2012 |
| End Date: | February 24, 2016 |
Challenges of Living With Frontotemporal Dementia: The Perspective of the Affected Individual
Background:
- 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.
Objectives:
- To study the experiences of persons with FTD and their primary caregivers.
Eligibility:
- 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.
Design:
- 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.
- 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.
Objectives:
- To study the experiences of persons with FTD and their primary caregivers.
Eligibility:
- 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.
Design:
- 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.
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.
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.
- INCLUSION AND EXCLUSION CRITERIA:
Participants with FTD must:
- Be affected with any variant of frontotemporal dementia and have documented cognitive
impairment
- Have this diagnosis made by a behavioral neurologist, neuropsychologist, psychiatrist,
or a group consensus of any of the above in a specialized dementia center
- For patients recruited through the contact physicians at Johns Hopkins Hospital,
University of Pennsylvania, or Columbia University Medical Center, this diagnosis
will be verified through personal communication between the interviewer (WM) and
the contact physician and through the patients medical records.
- For patients recruited through a foundation, patient support group or
Clinicaltrials.gov, the patients listed dementia care specialist will be
contacted to verify the diagnosis, or the appropriate documents obtained through
a release of medical information form.
- Be assessed to be in the none (1) to mild (2) impairment category on the Dementia
Disability Rating. The assessment must be performed by a dementia care specialist with
a medical degree.
- Have an onset of disease at or more than three months before the interview date. This
date may or may not differ from the actual date of diagnosis.
- Pass the consent comprehension assessment
- Be 18 or older and speak fluent English
Caregivers participants must:
- Be a spouse or partner who provides day-to-day care for the affected individual.
- Spend a minimum of 16 hours per week, on average in a month, in direct contact with
the affected individual.
- NOT be a non-spousal relative, friend, healthcare provider, or hired help.
- Pass the consent comprehension assessment
- Be 18 or older and speak fluent English.
We found this trial at
3
sites
Johns Hopkins University The Johns Hopkins University opened in 1876, with the inauguration of its...
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Columbia University In 1897, the university moved from Forty-ninth Street and Madison Avenue, where it...
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Univ of Pennsylvania Penn has a long and proud tradition of intellectual rigor and pursuit...
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