This proposal addresses the question of caregivers of persons with Frontotemporal Dementia (FTD) and their awareness and understanding of the importance of biomedical research, particularly brain donation to potential treatments for this devastating syndrome of diseases. In order to address the lack of empirical data in this area, the Indiana Alzheimer Disease Center Education Core at Indiana University School of Medicine and the Association for Frontotemporal Dementias are partnering together in a community-based participatory research project.
The specific aims of this project are three-fold: 1. to identify potential barriers to caregiver participation in brain donation programs among FTD families. 1a. to hold three focus groups with caregiver members of AFTD to identify barriers to participation in brain donation programs. 1b. to conduct content analysis of focus group transcripts to identify common themes. 2. To design a questionnaire to assess the impact of issues, attitudes, concerns and barriers to brain donation as identified by the focus group content analysis. The instrument will include questions to assess the best ways to educate family caregivers about the importance of brain donation, research and participation in research. 3. Write a larger collaborative grant proposal to disseminate the questionnaire to a broader community of dementia caregivers and design and test an effective educational intervention strategy. We believe family caregivers of persons with Frontotemporal Dementia (FTD) are more likely to agree to brain donation if they understand the importance of such donations to the progress of science in this field. As a result of this pilot and the dissemination of the findings, researchers will be better able to understand families'awareness of research and its importance, attitudes toward research participation or barriers to participation, especially brain donation and can design more effective approaches to address the most salient barriers to and concerns about participation in research requesting brain donation. We believe family caregivers of persons with Frontotemporal Dementia (FTD) are more likely to agree to brain donation if they understand the importance of such donations to the progress of science in this field. As a result of this pilot and the dissemination of the findings, researchers will be better able to understand families'awareness of research and its importance, attitudes toward research participation or barriers to participation, especially brain donation and can design more effective approaches to address the most salient barriers to and concerns about participation in research requesting brain donation.
| Austrom, Mary Guerriero; Dickinson, S L-J; Denny, S S et al. (2011) Frontotemporal dementia caregivers and researchers: partnering for brain donation. Am J Alzheimers Dis Other Demen 26:477-83 |
