Public Preferences for End-of-Life Timing in Alzheimer Disease and Related Dementias

Alzheimers Disease and Related Dementias (ADRD) impacts 7 million people in the US over the age of 65, costing $360B in reimbursable care and $347B in unpaid care annually. ADRD is a salient health issue, being the most feared medical condition in the US and surpassing a fear of cancer. Despite this concern, there is almost no data about how Americans view their future lives if they receive an ADRD diagnosis. To investigate US preferences for end-of-life if given an ADRD diagnosis, 1,015 participants reviewed four vignettes of people in different stages of Alzheimer's disease, each of whom eventually experiences a fatal heart attack. Participants were then asked: if they were given an ADRD diagnosis then which person would they hope to be? We found that 75% of participants would choose for their life to end in the early stages of ADRD. Factors associated with a hope of later ADRD stages were race (OR = 1.9; 95CI = [1.1, 3.3]; p = 0.02; Black vs White, Non-hispanic) and education level (OR = 2.7; 95CI = [1.2, 5.7]; p = 0.01; Less than high school vs College). Of the majority who would choose for their life to end in the early stages of ADRD, we used Latent Dirichlet Allocation to find that the most representative rationales given were to prevent burdening their family and loved ones with their care as well as emphasizing their own quality of life (rather than longevity alone) as important. Current medical practice focuses on patient longevity as an important marker of success and progress in treatments of many diseases. However, our work here shows that for ADRD the focus of medical practice and the wishes of patients may not be aligned. For people with a diagnosis of ADRD, longevity may not be what they are hoping for.