Using semi‐structured interview to develop a tailored psychological intervention for individuals at risk for familial Frontotemporal dementia.

Background: Frontotemporal dementia is genetic in around a third of cases. Issues such as high penetrance, heterogenous symptoms and unpredictable onset may cause significant challenges for those at‐risk. Few studies have evaluated this experience and no interventions have been designed to support this group. Therefore, investigation of the at‐risk experience is required to ensure an intervention that is tailored to and appropriate for the target population, as outlined in stage 0 of the NIH stage model for Behavioural Intervention Development. Method: Participants were individuals enrolled in UK GENFI, at‐risk of MAPT, GRN and C9orf72 mutations. Participants included those with unknown genetic status, asymptomatic mutation carriers and non‐carriers. 71 participants completed questionnaires, including GAD‐7 and PHQ‐9 measures, and the Genetic Psychosocial Risk Instrument. 16 qualitative interviews were conducted, regarding feelings experienced throughout the at‐risk journey, support needs and the genetic testing experience. An inductive approach to thematic analysis was used. Themes were then utilised to form the content of the intervention and guide design. Result: There were no significant differences between genetic groups on GAD‐7, PHQ‐9 and GPRI measures, however 52% participants met the GPRI threshold for referral for psychosocial intervention. Key themes included: 1) Emotions experienced, 2) How risk influences how you live your life, 3) Coping, 4) Support wanted, 5) Barriers and facilitators, and 6) The importance of understanding the specific difficulties. Many participants expressed a desire for tailored psychological support facilitated by "someone who understands". Intervention design The intervention applies principles largely derived from the Acceptance and Commitment Therapy model and has a blended design comprising of online sessions over eight weeks, with psychoeducational videos and three face‐to‐face sessions. There are seven to ten modules depending on the individual's genetic status including: anxiety and low mood, rumination, survivor guilt, concern about symptom onset and uncertainty. A pilot study is currently underway and will be completed by April 2022. Conclusion: Living at‐risk of familial FTD is challenging, often requiring additional support therefore this work demonstrates the importance of NIH stage 0 research in intervention development. Future research should further explore the effectiveness of tailored interventions in at‐risk familial FTD. [ABSTRACT FROM AUTHOR]