Ignite Creation Date:
2024-05-06 @ 1:07 AM
Last Modification Date:
2024-10-26 @ 10:59 AM
Study NCT ID:
NCT01738386
Status:
TERMINATED
Last Update Posted:
2018-07-26
First Post:
2012-11-28
Brief Title:
Living With Frontotemporal Dementia
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Challenges of Living With Frontotemporal Dementia The Perspective of the Affected Individual
Status:
TERMINATED
Status Verified Date:
2016-02-24
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
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
Detailed Description:
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 spousepartner 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
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 12-HG-N153 | None | None | None |