Living With Frontotemporal Dementia

NCT01738386 | Terminated

• 2 other identifiers: 99991215312-HG-N153
• Study Type: observational
• Target: 16
• Locations: 1 country
• Sites: 3

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.

Conditions

Adaptation

Keywords

Adaptation; Coping; Presenile Dementia; Caregiver Burden

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may not qualify if:

• 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.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (3)

Johns Hopkins University

Baltimore, Maryland, 21205, United States

Location

Columbia University

New York, New York, 10032-3784, United States

Location

University of Pennsylvania

Philadelphia, Pennsylvania, 19104-6056, United States

Location

Related Publications (3)

• Ablitt A, Jones G, Muers J. Awareness of carer distress in people with dementia. Int J Geriatr Psychiatry. 2010 Dec;25(12):1246-52. doi: 10.1002/gps.2461.

  PMID: 20033903 BACKGROUND

• Baldelli MV, Pirani A, Motta M, Abati E, Mariani E, Manzi V. Effects of reality orientation therapy on elderly patients in the community. Arch Gerontol Geriatr. 1993 Nov-Dec;17(3):211-8. doi: 10.1016/0167-4943(93)90052-j.

  PMID: 15374320 BACKGROUND

• Bates J, Boote J, Beverley C. Psychosocial interventions for people with a milder dementing illness: a systematic review. J Adv Nurs. 2004 Mar;45(6):644-58. doi: 10.1046/j.1365-2648.2003.02959.x.

  PMID: 15012642 BACKGROUND

MeSH Terms

Conditions

Alzheimer Disease; Caregiver Burden

Condition Hierarchy (Ancestors)

Dementia; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Tauopathies; Neurodegenerative Diseases; Neurocognitive Disorders; Mental Disorders; Stress, Psychological; Behavioral Symptoms; Behavior

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Time Perspective: RETROSPECTIVE
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 28, 2012
• First Posted: November 30, 2012
• Study Start: June 13, 2012
• Study Completion: February 24, 2016
• Last Updated: July 26, 2018

Record last verified: 2016-02-24

Locations

US (3)