September 28, 2021

Members of the Executive Committee for the IMPACT Engaging Partners Team have collaborated to create a guide for researchers seeking stakeholder advisors living with dementia.

Brenda Nicholson, MD , and Louise Phillips, MD, MBA, are retired physicians who are living with dementia. Both have participated as stakeholder advisors and research partners for important research-related initiatives on dementia care and services. They collaborated with Katie Maslow, MSW, to create the perspective piece entitled, Engaging and Working Effectively with Individuals Living with Dementia as Stakeholder Advisors and Research Partners.

Dr. Nicholson and Dr. Phillips provided three reasons why they participate as stakeholder advisors and research partners in dementia care research:

• They hope to encourage more research on topics that are important and relevant for the well-being of people living with dementia and their families
• They hope their participation will help convince researchers that it is valuable to include people living with dementia as research partners in their dementia care studies; so, in a sense, to “break through the glass ceiling” in this research area
• They hope their involvement as research partners will be a clear and present reminder to research team members of the real human needs of people living with dementia, which are sometimes lost in the strong focus on research procedures and challenges.

Dr. Nicholson and Dr. Phillips drew on their own experiences to offer tips to researchers, but also emphasized that each person living with dementia has their own unique needs and circumstances to consider. Their tips suggest the importance of considering the needs of stakeholder advisors throughout the engagement process; from planning the meeting format and time commitment, through post-meeting follow-up.  They stress the importance of providing multiple opportunities for advisors to share their ideas and have their voices heard. The full perspective piece can be found at this link.