The purpose of this paper is to improve understandings of environmental influences on participation in routine and familiar activities for people with intellectual disabilities and dementia from first-person and caregiver perspectives.
Four adults with intellectual disabilities and dementia participated in 2 nominal group technique sessions and 12 family and staff caregivers participated in 5 standard focus groups. Transcripts were analyzed utilizing thematic analysis centering the findings from nominal group technique sessions and an ecological systems lens.
Participants with intellectual disabilities and dementia identified six important themes: activity access, caregiver assistance, social interactions, responsibilities, privacy, and health and wellness. Their perspectives focused primarily at an immediate environment level, while caregiver input added additional understandings from broader ecological systems levels.
This study provides a beginning point to establishing a framework for creating supports and addressing barriers to participation for adults with intellectual disability and dementia based on direct input from potential service consumers and their caregivers. People with intellectual disabilities and dementia provide valuable insights into their experiences through engagement in accessible research.
This study was completed as partial fulfillment of the requirements for the degree of Doctor of Philosophy in Disability Studies in the Graduate College of the University of Illinois at Chicago. The author would like to thank the participants for sharing their experiences as well as Joy Hammel, Tamar Heller, Jessica Kramer, Susan Magasi, and Akemi Nishida for their support and guidance for this research as dissertation committee members. The author would also like to thank Brian Heyburn for editing assistance on earlier versions of this manuscript.
Sheth, A. (2019), "Intellectual disability and dementia: perspectives on environmental influences", Quality in Ageing and Older Adults, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/QAOA-11-2018-0060Download as .RIS
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