“IT TAKES AWAY WHAT MADE A PERSON THAT PERSON”: RECONSTRUCTING IDENTITY IN RESPONSE TO GENETIC RISK OF BEHAVIORAL VARIANT FRONTOTEMPORAL DEMENTIA

There is limited research considering the personal experiences of individuals living with or at risk for developing behavioral variant frontotemporal dementia (bvFTD). FTD is known to have a significant genetic contribution. With advances in understanding the genetic component of FTD, rates of predictive and symptomatic genetic testing will increase. Though FTD is the second most prevalent cause of early-onset dementia after Alzheimer disease (AD), there is substantially more literature related to AD experiences. In dementia research broadly, care partners rather than persons diagnosed tend to be the informants. The data presented in this paper are derived from an exploratory project called Voices of Individuals: Challenges and Experiences of Behavioral Variant Frontotemporal Dementia (VOICE Of bvFTD) that qualitatively explores the specific experience of living with bvFTD diagnosis and risk from the perspective of the persons diagnosed and at-risk. Semi-structured telephone interviews were conducted to qualitatively explore how bvFTD may influence an individual’s sense of identity, individuals’ experiences of loss, how individuals cope and adapt to the challenges they face, and other factors that might be perceived to influence these processes. Participants with a diagnosis of bvFTD (n=6) and with genetic testing results conferring high risk of developing bvFTD (n=14) were recruited through two academic medical centers, the National Institutes of Health, ClinicalTrials.gov, and through FTD support resources. Interviews were transcribed and underwent thematic analysis. This paper considers how identity was shaped by the threat of developing FTD among the at-risk subset of VOICE Of bvFTD participants (n=14). Participants varied in their conceptualizations of their status, how they integrated FTD risk information into their current identity, and how they anticipated changes to their identity in the future. FTD risk raised fundamental issues related to what constitutes the essence of a person, challenged people to wrestle with Cartesian dualism, and exposed the roles of time, social relationships, and social roles in the understanding of the nature of self. Understanding how at-risk individuals reconstruct their identities in response to their FTD risk status can inform clinical care, resource development, and future research