Researchers' perspectives on the role of study partners in dementia research

Int Psychogeriatr. 2014 Oct;26(10):1649-57. doi: 10.1017/S1041610214001203. Epub 2014 Jul 3.


Background: Study partners for dementia research participants are vital to the research process, but little is known about their role, responsibilities, and experiences. Study partners are usually family members or friends - often the patient's informal caregiver - who are knowledgeable about and usually accompany the participant to study visits. This study examines researchers' perspectives on the role of study partners in dementia research.

Methods: Qualitative data collection and analytic methods were used. Semi-structured individual interviews with principal investigators, study coordinators, and research nurses (i.e. researchers; n = 17) at two academic research sites were recorded, transcribed, and content analyzed to identify themes in the data.

Results: According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply with a study's protocol, and provide comfort and encouragement for the patient to engage in and complete a study. Researchers describe ideal qualities of study partners as being able to provide reliable information, being dependable and adherent to the protocol, and not expecting a benefit. They also report that study partners may face both practical and emotional challenges during research participation. However, researchers believe that study partners derive dementia-related education, caregiver support, and satisfaction from their involvement in research.

Conclusions: Investigators, potential study partners, and institutional review boards should be aware of study partners' research responsibilities, challenges, and their interests as caregivers.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Attitude
  • Biomedical Research* / methods
  • Caregivers / psychology
  • Dementia*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Motivation
  • Research Personnel / psychology*
  • Researcher-Subject Relations / psychology
  • Role*
  • Spouses* / psychology