A Brief Acceptance and Commitment Therapy Intervention to Support Those Living At Risk of Inherited Prion Disease

Living at risk of a neurodegenerative condition such as inherited prion disease (IPD) is associated with substantial psychological burden, yet evidence-based supportive interventions are lacking. This unmet need is likely to grow as advances in biomarkers and predictive testing lead to increasing identification of individuals in pre-symptomatic stages of neurodegenerative disease. Acceptance and Commitment Therapy (ACT), a transdiagnostic intervention targeting psychological flexibility, has shown promise in chronic health contexts but has not been evaluated in individuals at genetic risk. We conducted a feasibility and acceptability study of a brief, group-based ACT intervention in adults at risk of IPD recruited through the UK National Prion Clinic. The intervention comprised a single 5-hour, face-to-face workshop followed by an individual booster session. Prespecified feasibility and acceptability criteria were assessed alongside secondary psychological outcomes at baseline, 1 month, and 3 months post-intervention, complemented by semi-structured qualitative interviews. Twenty-three participants completed the intervention. All predefined feasibility criteria were met, including recruitment (58%), intervention completion (80%), retention at 3 months (79%), and low missing data (10%). Acceptability was high, with all participants reporting the intervention as useful and appropriate. Quantitative analyses demonstrated improvements in psychological quality of life and behavioural awareness at 3 months, with larger effects observed in participants with elevated baseline depressive symptoms. Qualitative findings highlighted the importance of peer connection, experiential learning, and practical strategies for managing uncertainty. These findings demonstrate that a brief, hybrid ACT intervention is feasible and acceptable for individuals living at risk of IPD and provide preliminary evidence for improving psychological well-being. As the population of individuals identified as at risk for neurodegenerative disease continues to expand, scalable psychological interventions that address cost and time barriers may represent an important component of future clinical care.