Insights shared from people living with dementia and caregivers

As part of the IMPACT Collaboratory, which funds and supports research to improve dementia care, IMPACT researchers and the Alzheimer’s Association convened a panel of 12 persons living with dementia (PLWD) and care partners, to learn their thoughts about dementia research and related ethical challenges, and published two reports. 

Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research,” summarizes the Lived Experience Panel’s reflections on their experiences and what they would like to change about their experience with dementia or dementia caregiving, as well as their responses to outcomes studied by the Collaboratory.

Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia,” focuses on ethical and regulatory standards for research, necessary collaboration between researchers and people living with dementia, and themes of trust. The Lived Experience Panel recommended that researchers ask for input on study design, and account for and acknowledge the lived experience of people living with dementia and the experiences of diverse communities in the healthcare system.

Understanding people’s priorities and experiences can inform the development and implementation of research initiatives to improve care for this population. Learn more about how the IMPACT Collaboratory does this and about other efforts in Q&I’s diverse portfolio.