Frontotemporal dementia caregivers and researchers: partnering for brain donation.

This study utilized a community-based, participatory research model between the Association for Frontotemporal Degeneration (AFTD) and the Education Core of the Indiana Alzheimer Disease Center. A total of 30 caregivers of persons with frontotemporal dementia (FTD) participated in 6 focus groups in 3 cities. The majority of participants were spouses of the person with FTD and had been providing care for an average of 6 years. Transcript analysis revealed 7 prominent themes: willingness to participate, when/how the issue of brain donation is raised, who initiates discussion about brain donation, who is involved in decisions about brain donation, motivation for participating in brain donation, lack of effective communication, and barriers to research participation. Caregivers demonstrated a strong desire to participate in research and contribute to advancing knowledge. The lack of effective communication between the clinicians and caregivers was a barrier to developing positive rapport, detrimentally impacting research participation.