“It’s not the same without you:” Exploring the experience and perception of transition for people with intellectual disabilities and dementia

Abstract

Accessible Summary This project focuses on people with intellectual disabilities and dementia that live in group homes or care facilities in the United States. People in this project shared how their life changed as they got older. They talked about where they live, what they do for work and how they get to spend their day. All the people in this project talked about how it was important for them to see their friends, even if where they lived or worked changed. People in this project worried that they would have to move or stop doing activities that were important to them if they started to need more help. People with intellectual disabilities and dementia should receive support to continue to see friends and do their favourite activities as they get older. Abstract BackgroundFor people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. MethodologyThree women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. FindingsParticipants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. ConclusionsPeer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase.

Community participation and staying home if you want:USadults with intellectual and developmental disabilities

“…Residents had no real say in these decisions (Webber et al, 2010). Sheth et al (2021) reported similar issues for residents of US residential settings.…”

Experiences of people with intellectual disability and dementia: A systematic review

“…have limited knowledge about dementia (Forbat & Wilkinson, 2008;Lloyd et al, 2007;Sheth, 2019;Sheth et al, 2021;Watchman, 2016).…”

“…When probed, she disclosed that while she would like to live with her parents, "That's just not an option". (Sheth et al, 2021) The wider context in which people's lives took place will be explored further in the last sphere. The following themes will discuss how people expressed their sense of identity, emphasised their independence, sought connections to others and reported fears about the future.…”

“…Four studies discussed that preserving routines helped people to maintain independence, stay engaged and involved, as well as giving people reassurance amidst a time of change and uncertainty (Iacono et al, 2014;Lloyd et al, 2007;Sheth, 2019;Sheth et al, 2021).…”

“…To our knowledge, there have been no reviews that explore experiences of dementia from the perspective of people with intellectual disability and dementia. However, studies have shown that it is possible to explore the perspectives of people with intellectual disability and dementia (Lloyd et al, 2007;Sheth et al, 2021;Watchman, 2016).…”