Frontotemporal dementia caregivers and researchers

Partnering for brain donation

Mary Austrom, S. L J Dickinson, S. S. Denny, Brandy Matthews, Sujuan Gao, Yvonne Lu

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)477-483
Number of pages7
JournalAmerican Journal of Alzheimer's Disease and other Dementias
Volume26
Issue number6
DOIs
StatePublished - Sep 2011

Fingerprint

Frontotemporal Dementia
Caregivers
Research Personnel
Brain
Research
Community-Based Participatory Research
Communication Barriers
Focus Groups
Spouses
Motivation
Alzheimer Disease
Communication
Education

Keywords

  • brain donation
  • caregivers
  • community-based participatory research
  • frontotemporal dementia

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Geriatrics and Gerontology
  • Clinical Psychology

Cite this

Frontotemporal dementia caregivers and researchers : Partnering for brain donation. / Austrom, Mary; Dickinson, S. L J; Denny, S. S.; Matthews, Brandy; Gao, Sujuan; Lu, Yvonne.

In: American Journal of Alzheimer's Disease and other Dementias, Vol. 26, No. 6, 09.2011, p. 477-483.

Research output: Contribution to journalArticle

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