Conducting Research

Researchers and FTD Caregivers: Partnering for Brain Donation

NIH 1R03NSO65490-01   2008 – 2010

AFTD has partnered with the Alzheimer Disease Center at Indiana University on a project that explores the barriers that exist to prevent families from participating in brain donation. This study is funded through a new grant program at NIH titled Partners in Research. One of the goals of this program is to develop strategies for promoting collaboration between scientists and the community to improve the health of the public.   Principal Investigators for the project are Mary Austrom, Ph.D., Indiana University, and Susan Dickinson, M.S., AFTD.  The project is guided by a Caregiver Advisory Committee and supported by professional staff at both AFTD and Indiana University.

Brain donation is the ultimate gift a family can make to future patients. But it can be an emotionally charged issue, and communications between researchers and families can be awkward. Through a series of focus groups with caregivers held in Philadelphia, Boston and Indianapolis, AFTD and Indiana University will identify and explore the issues, attitudes and concerns that caregivers identify as potential barriers to brain donation. The results of the study will be presented at a national meeting, submitted to a peer-review journal, and used to design appropriate, effective educational materials for families and researchers.