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

Alzheimer’s 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.

Keypoints

Question

If given a diagnosis of Alzheimer’s Disease and Related Dementias (ADRD) then at what stage of disease would US individuals hope to end their life?

Findings

From 1,015 surveyed individuals, 75% would hope their life to end in early ADRD stages. This preference is associated with race and education level. Dominant rationales for this hope to end life early are: individual autonomy and not wanting to burden others.

Meaning

These results demonstrate that, despite clinical focus on longevity, a generalist patient population may hope to end life sooner. This suggests: (a) knowing that a majority of people would wish their lives to end sooner may encourage physicians to bring up difficult topics; (b) ADRD-specific Living Wills should consider possibilities of ending one’s life at earlier phases of dementia. (c) people with a diagnosis of dementia may prefer not to engage in life-prolonging interventions.