“Terror Is a Better Word”: A Qualitative Analysis of Dementia-Related Anxiety

Abstract

Abstract Background and Objectives Dementia-related anxiety (DRA) is the fear of a current or future diagnosis of Alzheimer’s disease or another type of dementia. Previous studies suggest diverse factors contribute to DRA, including emotional, social, and cognitive concerns. A mixed-methods investigation was designed to explore DRA’s underlying causes; we present a thematic analysis of these causes. Research Design and Methods A semistructured qualitative interview design was used to explore participant’s thoughts, feelings, and reactions about dementia. Fifty community-dwelling adults (aged 58–89, M = 70.80, SD = 6.02) without dementia diagnoses were interviewed, with a focus on why dementias are anxiety-provoking diagnoses. We engaged in a reflexive inductive thematic approach. Results We identified 7 themes positioned within previously established antecedents of DRA. Anticipated consequences were conveyed in statements identifying dementia as a feared diagnosis and its connection to how one would be treated if diagnosed. Low perceived control was associated with dementia’s anticipated effects including the ability of dementia to undermine core aspects of one’s personhood, limit independence, and increase reliance on others. Perceived risk was connected to past familial experiences with dementia and the implications of receiving different diagnoses with different trajectories and treatments. Discussion and Implications Findings offer insight into diverse factors contributing to DRA, which can be used to inform public health messaging and develop applicable and clinically relevant interventions to meet the needs of individuals experiencing DRA and their social support systems.