Effective housing and support models for people with Huntington's disease: A scoping review

Background People with Huntington's disease (HD) experience physical, cognitive, and psychiatric manifestations that can result in housing in settings that are inappropriate for care requirements. Objective The aim of this scoping review was to examine the existing literature on effective housing and support models for people with HD. Method Five major databases (MEDLINE, CINAHL, SCOPUS, PsycINFO, and EMBASE) were systematically searched for studies that reported qualitative and/or quantitative findings on housing and support models for people with HD. Key findings from eight eligible studies were integrated to provide preliminary information about housing and support for this population. Results No studies included in the review specifically provided data on the effectiveness of housing and support models for people with HD. However, important insights regarding the challenges facing this population in accessing appropriate housing and supports were revealed. Findings highlighted the importance of good quality disability and health supports from adequately trained staff. People with behavioral manifestations, poor physical status and psychosocial concerns were more likely to be living in residential aged care than in their own home. The role of positive behavior support and supporting caregivers were highlighted as important considerations. Conclusions There is limited research on effective housing and support models for people with HD. Due to the wide variety in sociocultural variables and disease manifestations, it is unlikely that a single best-practice model exists. Housing and supports should be flexible and adapted to individual needs.