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.

Keywords: advance care planning; dementia; health literacy; risk perception.

Figure 1.

Distribution of perceived dementia risk, as measured using this question: “on a scale of 0 to 100, what is the percent chance that you will develop dementia sometime in the future?” Respondent percentages were derived using the HRS sampling weights.

Figure 2.

Relationship between perceived dementia risk and advance care planning (ACP) activities. The horizontal bars indicate pooled percentages among all respondents with perceived risk >0%. An asterisk denotes a statistically significant difference between this group and those respondents with perceived risk of 0%. Data about ACP participation were missing for 1 respondent.