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Planning Dementia-Capable Group Homes for Adults With Intellectual Disability: Insights From a 15-Year Longitudinal
1Institute on Disability and Human Development, University of Illinois Chicago, Chicago, IL, USA.
Abstract:
Adults with intellectual disability (ID) experience elevated risk of developing dementia, including earlier onset in some conditions such as Down syndrome. As increasing numbers of adults with ID reach older age, community service systems are confronted with the need to adapt residential supports originally designed for lifelong developmental assistance to accommodate progressive neurodegenerative conditions. One emerging response has been the development of small, community-based dementia-capable group homes that integrate specialized care practices within familiar neighborhood environments. Despite growing interest in these residential models, practical guidance on how such homes can be planned, organized, and sustained over time remains limited. This article examines administrative and operational considerations in planning dementia-capable group homes for adults with ID, drawing on 15 years of observations from three purpose-built residences. The analysis highlights how resident trajectories, including progressive functional decline, increasing multimorbidity, and mortality-driven turnover, shape admission practices, staffing configurations, daily care routines, and the integration of medical, palliative, and end-of-life supports. The findings also illustrate how adaptive administrative practices supported long-term residential stability, enabling residents to remain in a familiar community setting despite increasing care needs. It also underscores the importance of anticipating increasing physical dependency, including the need to support non-ambulatory residents, particularly within single-home residential settings. The findings suggest that dementia-capable group homes function best when conceived as adaptive residential systems rather than fixed placements. Effective models incorporate flexible staffing structures, coordinated administrative oversight, and planning strategies that anticipate changing resident acuity over extended periods, thereby promoting residential stability and reducing the need for disruptive relocations as dementia progresses. These observations provide practice-level guidance for agencies seeking to develop community-based dementia care housing for adults with ID and contribute to a growing body of evidence supporting small-scale residential platforms as viable components of the broader continuum of dementia care.