Perspectives on meaningful dementia treatment and care from those with lived experience

The ongoing conversations surrounding the importance of minimal clinically important differences and descriptions of meaningful impacts must include the voices of those living with Alzheimer's disease and related dementias. To provide this perspective, members of the Alzheimer's Association Early Stage Advisory Group were asked to describe what matters most to them, their experiences with treatment, how they define meaningful care, and what would provide them with feelings of progress and hope. Responses offer differing yet complementary definitions of a quality life, ways in which clinicians and providers can recognize and support the person behind the diagnosis, and how participating in clinical trials can bring hope - both now and for the future. By centering on the lived experiences and perspectives of those people living with dementia, this article provides insight for those seeking to develop novel treatments and provide care and support, both now and in the future.

Maintaining independence, purposeful living, and social connection are among what matter most to those living with dementia.Meaningful treatment and care are person-centered and responsive to the needs and wants of the person living with dementia.Participating in clinical trials can have meaningful physical, cognitive, and psychosocial impacts for those living with dementia.