Social Withdrawal in Huntington’s Disease: A Scoping Review

BACKGROUND: Huntington’s disease (HD) commonly presents with impaired social functioning. Specifically, many patients exhibit social withdrawal, or decreased engagement in social activities. Despite the frequency of social withdrawal in HD, no review has been previously published on this subject. OBJECTIVE: The aim of this study was to conduct a scoping review of social withdrawal in HD. METHODS: Two searches were conducted to identify relevant literature. The articles were screened by title and abstract, followed by full text review for all remaining articles. Consistent with scoping review methodology, data extraction focused on identification of broad themes and knowledge gaps. RESULTS: Eight articles were identified that described social withdrawal in HD. Social withdrawal was exhibited by individuals with varying disease severity, and it occurred both within and outside of the home. Social withdrawal was associated with increased caregiver burden, behavioral issues, and psychiatric, cognitive, and physiological changes. Only one case study described an intervention that increased social participation in a previously withdrawn patient. CONCLUSION: Although social withdrawal is commonly encountered in clinical settings, this review highlights the need for prospective studies to systematically evaluate social withdrawal in HD. These studies should be designed to consider disease stage and associated HD features as well as caregiver burden and potential interventions. Additionally, objective measures of social withdrawal should be used when possible, as existing instruments measure perceptions of participation levels rather than actual withdrawal behavior. Such studies will lay the groundwork to improve social functioning and quality of life for people with HD.