Perceived dementia risk and advance care planning among older adults

Abstract

Background Although advance care planning (ACP) is beneficial if dementia develops, and virtually all older adults are at risk for this disease, older adults do not consistently engage in ACP. Health behavior models have highlighted the importance of perceived susceptibility to medical conditions in motivating behavior. Following these models, we sought to determine how often older adults believe they are not at risk of developing dementia and to examine the association between perceived dementia risk and ACP participation. Methods We performed a cross‐sectional study of community‐dwelling adults without cognitive impairment, aged ≥65 years, who were interviewed for the Health and Retirement Study in 2016 and asked about their perceived dementia risk (n = 711). Perceived dementia risk was ascertained with this question: “on a scale of 0 to 100, what is the percent chance that you will develop dementia sometime in the future?” We used multivariable‐adjusted logistic regression to evaluate the association between perceived risk (0% versus >0%) and completion of a living will, appointment of a durable power of attorney for healthcare decisions, and discussion of treatment preferences. Results Among respondents, 10.5% reported a perceived dementia risk of 0%. Perceived risk of 0% was associated with lower odds of completing a living will (OR 0.53; 95% CI, 0.30–0.93) and discussing treatment preferences (OR 0.51; 95% CI, 0.28–0.93) but not appointment of a durable power of attorney (OR 0.77; 95% CI, 0.42–1.39). Many respondents with perceived dementia risk >0% had not completed ACP activities, including a substantial minority of those with perceived risk >50%. Conclusions Older adults with no perceived dementia risk are less likely to participate in several forms of ACP, but the fact that many older adults with high levels of perceived risk had not completed ACP activities suggests that efforts beyond raising risk awareness are needed to increase engagement.

Factors Impacting Retention of Aged Care Workers: A Systematic Review

“…Our review identified studies from countries across European, Oceanian, Asian, and North American regions where life expectancy is typically longer [35]. We acknowledge that the nature of work for older adults' care personnel in these regions will differ, as people spend more time in need of care, so knowledge of advance care planning and palliative care is required [95][96][97]. It is further noted that aside from population size and life expectancy, there are differences between countries regarding social security systems, impact of religion, and local economic situations [98,99].…”

Should we still believe in advance care planning?

“…Dementia is a case in point. The trajectory of incapacity in cognitive impairment and dementia, as the authors of the study in JAGS note, is often “insidious and prolonged.” 1 Even allowing for disruptive events that alter the trajectory of decline in dementia, 4 there is rarely a clear demarcation between a state of health and a state of serious illness. The same is true of patients at high risk of dementia.…”

“…The study by Lee and colleagues in this issue of JAGS finds that older adults with a higher perceived risk of dementia are more likely to have engaged in advance care planning than those with no perceived risk. 1 However, among older adults with a perceived risk of >50%, engagement in advance care planning was far from universal.…”

Expectations of Representatives on Shared Decision-Making in the Context of Dementia – An Integrative Model

“…This includes difficult decisions about further care, nursing, and possible treatments or therapies (Caron et al, 2006;Lord et al, 2015). A living will and powers of attorney can be supportive here, although these are often not available in reality (e.g., Lee et al, 2022). This has an additional psychological effect on the relatives responsible for the decision, who are already in a stressful situation (Alltag et al, 2019;Bohnet-Joschko & Bidenko, 2021).…”