Using metaphor analysis to understand personal and familial experiences with behavioral variant frontotemporal dementia

Frontotemporal dementia (FTD) is a progressive neurodegenerative condition that causes changes in behavior, personality, and language. As researchers better understand the genetic components of FTD, the number of people pursuing genetic testing, either due to their own symptoms of FTD or their family history, is increasing, making it important to understand the impact of genetic diagnosis on lived experience. Individuals may use metaphors to describe, process, and make sense of their experiences with illness. This qualitative study explores how individuals use metaphors to describe personal and familial experiences with behavioral variant FTD (bvFTD) in order to understand what themes may arise in genetic counseling sessions and to accordingly tailor clinical care. The data for this analysis comes from two study populations: asymptomatic individuals with confirmed genetic risk for bvFTD (n = 16) and individuals diagnosed with bvFTD (n = 9). A secondary analysis of 25 semi-structured interviews was completed. Abductive analysis and metaphor analysis were used to identify the primary metaphors through which participants described their experiences with bvFTD. Two of the main themes expressed by metaphors – (1) lack of control over the disease and (2) uncertainty about inheritance and symptoms – consistently conveyed that participants were grappling with how to understand their lives in the past, present, and future. This study suggests that metaphors can provide valuable insight into how clients are revising their life narratives when bvFTD causes biographical disruption. These findings have important implications for genetic counselors working with individuals who have neurodegenerative conditions.