Environmental Influences on Older Adults with Intellectual Disability and Dementia

Purpose: This two-phase qualitative study aimed to contribute to understandings of the impact of the environment on participation in the everyday activities of people aging with intellectual disability and dementia. It also sought to explore ways for older adults with intellectual disability to participate in research. Background: Despite the increasing number of adults aging with intellectual disability and dementia, there is limited research that examines this group's perceptions and experiences around aging with multiple disabilities, specifically considering participation across various environments and within current systems. Methods: Four women with intellectual disability and dementia who lived in a non-familial residential settings participated in small groups utilizing a nominal group technique and twelve caregivers participated in traditional focus groups to identify important environmental barriers and supports to participation in meaningful everyday activities. Results from the first phase guided a subsequent phase of participant observations and interviews with three of the original participants with ID and dementia across various home, work, and community environments. Results: Important influences on participation for people intellectual disability and dementia occurred across micro- and macro- environmental contexts, with importance noted for interpersonal interactions and boarder organizational environments. Tensions around participation existed as people with intellectual disability and dementia exercised their agency in various contexts and sought to maintain peer support, while formal care networks focused on safety and supervision. Participants with intellectual disability and dementia expressed positive experiences participating in research and were able to contribute meaningful data with accommodations and supports. Discussion: People with ID and dementia's participation in research is important given the different perspectives offered when compared to those of caregivers. Results from this exploratory research can help inform organizations and other stakeholders invested in providing meaningful supports and services for adults aging with ID and their families.