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.Design/methodology/approachFour 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.FindingsParticipants 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.Originality/valueThis 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.
Quality in Ageing and Older Adults – Emerald Publishing
Published: Dec 3, 2019
Keywords: Participation; Intellectual disability; Environment; Dementia; Lived experience; Down syndrome