“How will I ever know I didn’t bring it on myself?”: Navigating personal responsibility in public health messaging on dementia risk

Background and Objectives Public health messaging increasingly emphasizes the importance of “lifestyle interventions” to reduce dementia risk. Our study aimed to understand how people interpret and respond to information about dementia risk. In a second sub-aim, we examined how these interpretations may contribute to dementia-related lifestyle stigma. Research Design and Methods We engaged in a secondary analysis of 50 semi-structured interviews using a framework approach to understand, from the perspective of community-dwelling middle-aged and older adults, how they may interpret, make sense of, and respond to information about dementia risk and risk reduction. During the interpretive and narrative phase, the authors began to elucidate participant responses analytically and identified that these responses could be interpreted within the health locus of control literature. Results Of the 23 participants who discussed dementia risk, 13 felt some sense of personal responsibility and control over their dementia risk. Of those 13, four participants believed they had personal responsibility and control and actively engaged in lifestyle interventions. The remaining nine participants also engaged in lifestyle interventions, aiming to find comfort in knowing they had done what they could to reduce their risk and working to alleviate self-attribution of blame if diagnosed with dementia. Discussion and Implications The tendency to internalize responsibility may inadvertently contribute to the stigmatization of dementia as a ‘lifestyle disease’ creating dementia-related lifestyle stigma. Recognizing the multifaceted nature of dementia risk, including environmental and external factors beyond individual control, is essential to combatting the ‘lifestyle stigma’ increasingly associated with the condition.