Research Involving People Living with Dementia: the Barriers and Enablers

What does it mean to be “engaged” or “involved” in health research as someone living with – or alongside – a person with a condition, illness, or disease? It means being included in the research process, not simply as a research subject but as a direct contributor.

Recently, a team of researchers and knowledge translation specialists within the Canadian Consortium on Neurodegeneration in Aging (CCNA) worked alongside international collaborators and people living with dementia to describe the extent and nature of approaches that have been used to involve persons with dementia and their care partners in research.

The article, “Patient engagement in research related to dementia: A scoping review” (which is open access until December 31, 2018) is featured in a special edition of Dementia. Emphasis is placed on the unique barriers and enablers to engaging people with dementia in the research process, in addition to outlining lessons for practice – i.e. what worked and recommendations for others.

So what are the enablers and barriers to this research?

Enablers include: early planning, maintaining flexibility in attitudes and approaches, making sufficient time for meetings, paying attention to relationship building, careful consideration of consent and capacity, defining roles and involvement, using plain language, updating those involved in research on study progress, and adequate funding on the part of the researcher.

Researcher challenges include: time and associated costs, protecting the anonymity of participants, sharing decision-making control, navigating research ethics boards, and identifying ‘representative’ persons (demographically representative and at different disease stages).

Participant challenges include: the complexity and perceptions of research and the general research process, lack of research training and experience, and the potential for distress when addressing certain topics.

Some Additional Lessons for Practice:

  • Persons with dementia face barriers with respect to engagement in research; hence, researchers, health charities, and other organizations involved in research (or representing persons with dementia) can play important roles in addressing these barriers;
  • Researchers should offer choices of whether and how to engage persons with dementia together with their care partners. Also, while there are compelling reasons to engage care partners, this should not be taken as the equivalent of engaging persons with dementia;
  • Patient engagement in research related to dementia can be advanced by health charities and other research organizations, but this requires funding and infrastructure; and
  • Patient engagement activities in research related to dementia are not always well- described in journal articles; more complete reporting would help to advance knowledge in this area.

Although there are good reasons for patient engagement in dementia research, there is also a need to demonstrate the impact – on the research process and outcomes, as well as on persons with dementia, care partners, researchers, research institutions, and society at large. The CCNA’s knowledge translation program is supporting dementia researchers in this work by creating an infographic on lessons for practice, and promoting the “top 10” questions Canadians living with dementia want researchers to answer.