Dementia-Related Care Decision-Making in Group Homes for Persons with Intellectual Disabilities

Alzheimer's disease and related dementias affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults. This study reports the outcome of a survey of group homes serving adults with ID and dementia, explores the onset, duration and effects of dementia, and speaks to the impact of these on planning for community care of adults with ID. It also examines emerging community care models that provide for “dementia capable” supports and services. Two models, “aging in place” and “in place progression” are examined, as well as “referral out” reactions, with regard to care practices and critical agency decision making. A programmatic approach, the ECEPS model, for responding to dementia is offered.