Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experiences

Abstract

Leisure has emerged as a prominent research theme within the growing body of knowledge on dementia, with a focus on physical activity. Yet participation in any form of leisure presupposes an ability to freely choose to partake in activities and to negotiate one’s way around key barriers. In the case of dementia, the ability to undertake leisure activities is subject to a greater range of barriers, structured in a hierarchical manner that contributes to social exclusion if not addressed. This study based on focus groups with people with dementia and their family members conducted in Dorset, UK illustrates a range of barriers to leisure participation. How to create or maintain leisure opportunities for those living with dementia where households affected by dementia do not adopt avoidance behaviour, compounding a sense of isolation and exclusion is a challenge. Leisure can be an important strategy framed as a form of resistance to the social disabilities experienced by those living with dementia and it is potentially isolating impact.

‘Dementia-friendly communities’ and being dementia friendly in healthcare settings

“…Even though the focus of Han et al ’s study was only on this one aspect of community life, that is meaningful activities, the results were based on a synthesis of studies conducted in various countries. Innes et al [29] investigated barriers to leisure participation for PWD and their caregivers and identified ‘accessibility’ as the overarching theme. Heward et al [30▪▪] evaluated an inter-agency project in the South England and interviewed project workers that were leading the community building efforts of seven dementia-friendly communities in the region.…”

Snow White Is Missing: An Interactive Locative Story for Dementia Patients

“…Despite this focus, research has shown people with dementia still struggle to uphold their social inclusion. For instance, Innes et al [11] found community-dwelling people with dementia faced difficulties when accessing leisure activities and spaces in Dorset, UK. This was attributed in part to the potential psychological stress people with dementia might incur if they became lost or encountered people who were misinformed or intolerant of their condition.…”

Sharing the Journey: Exploring a Social Leisure Program for Persons with Dementia and Their Spouses

“…One reason for this loss is that spouses often select solitary leisure activities over social engagements because they are unsure if their partner with dementia would have the interest and ability to relate to others in a social setting. Innes, Page, and Cutler (2015) explained that it is not uncommon for spouses to limit their engagement with leisure activities because they believe the person with dementia would not enjoy the activity or would become bored.…”

“…Innes et al (2015) explained, "The leisure worlds of people with dementia can be reduced dramatically as coping with the condition can see previously active individuals' time-space prisms of leisure …compressed to Downloaded by [University of California, San Diego] at 13:40 29 June 2016 narrowly prescribed service specific out-of home domains" (p. 3). Adult day programs and support groups continue to be the two most commonly available services for persons with dementia living in the community (Phinney & Moody, 2011).…”

“…Indeed, the creation of such spaces for persons with dementia and their spouses is essential if we are to address the ways experiences of marginalization and exclusion impact their access to and engagement in leisure practices and spaces (Innes et al, 2015). In line with this idea, there is a need for greater education and advocacy work to be done in the community so people can develop a better understanding of dementia and can begin to relate to persons with dementia in ways that more fully respect their humanity.…”