Living With Frontotemporal Dementia

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.