Date Presented 03/26/20
Despite the increasing number of adults aging with intellectual disabilities and dementia, there is limited research that examines this group’s lived experience, specifically considering participation in meaningful activities and tasks across various environments. This study aims to improve understandings of the impact of the environment on participation for this population and inform development of effective supports and services.
Primary Author and Speaker: Alisa Sheth
PURPOSE: Despite the increasing number of adults aging with intellectual disability and dementia, there is limited research that examines this group’s lived experience, specifically considering participation in meaningful activities and tasks across various environments and within current systems. This study aims to improve understandings of the impact of the environment on participation of people aging with ID and dementia and their caregivers, as well as explore ways for people with ID and dementia to participate in research.
DESIGN: This study used an exploratory two-phase ethnographic design. Participants with ID and dementia and caregivers (staff and family members) were recruited from intellectual disability service providers in a large metropolitan area of the United States. All participants were able to answer at minimum simple questions about their experiences in English.
METHODS: Four participants with ID and dementia took part in nominal group technique (NGT) sessions (Delbecq & Van De Ven, 1971) and twelve family and staff caregivers participated in traditional focus groups to identify important environmental barriers and supports to their participation. These Phase I transcripts were analyzed using thematic analysis (Braun & Clarke, 2006). In the second phase, results from the NGT and focus groups guided participant observations and interviews with three of the original participants with ID and dementia across various environments, including residential, vocational, and larger community settings. Field notes and interviews were analyzed using a grounded theory approach (Strauss & Corbin, 1998).
RESULTS: All participants with ID and dementia identified as white women and lived in residential placements outside family homes. None were aware of or discussed their dementia diagnosis. Participation was discussed as a nuanced and personal concept. Important influences on participation for people ID and dementia occurred across micro and macro environmental contexts, especially related to interpersonal interactions and boarder organizational environments. Specifically, participants with ID and dementia identified activity access, caregiver assistance, social interactions, roles and responsibilities, privacy, and health and wellness as the most influential. Caregiver input added unique but related perspectives on these themes. Participant observations and interviews led to the development of a model of environmental influences on participation for adults with ID and dementia living outside the family home in supervised residential placements. The model suggests that a balance between formal care networks, contextual demands, informal peer care networks, and individual agency support participation, while an imbalance in any or multiple elements can threaten participation. All elements influence and are influenced by each other across environments. People with ID and dementia can contribute to research when provided with accessible methodologies and supports to share their experiences and perspectives.
CONCLUSION: Results from this exploratory research highlight the importance of including people with ID and dementia in research to help inform organizations and other stakeholders invested in providing supports and services that promote continued engagement in meaningful activities throughout the lifespan. Given occupational therapy’s expertise in environmental analysis and adaptation, the profession can play an instrumental role in working with this population to improve participation outcomes. This study highlights the need to further research into the areas of health literacy related to dementia diagnosis and program or intervention development based on a broad environmental perspective.
References
Delbecq, A.L. & Van De Ven ,A.H. (1971) A group process model for problem identification and program planning. Journal of Applied Behavioral Science 7(3), 36-44. DOI: 10.1177/002188637100700404
Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. DOI: 10.1191/1478088706qp063oa
Strauss, A. C., & Corbin, J. (1998). Grounded theory methodology: An overview. In N.K. Denzin & Y.S. Lincoln (Eds). Strategies of qualitative inquiry. Thousands Oaks, CA: Sage.
