Out-of-home participation among people living with dementia: A study in four countries

Abstract

Social participation in out-of-home activities is important for people living with dementia, yet little is known about such participation. The aim of this study was to explore and compare out-of-home participation among people living with dementia in four countries by assessing different types of places of participation visited or no longer visited. A cross-sectional design was used to gather self-reported experiences concerning out-of-home participation among people with mild stage dementia living in Canada ( n = 29), Sweden ( n = 35), Switzerland ( n = 35) and the UK ( n = 64). Interviews were conducted using the Participation in ACTivities and places OUTside the Home for older adults (ACT-OUT) instrument. Participants still visited 16 ( Median) places out of a possible total of 24, and they had abandoned 5 ( Median) places. Neighbourhood was the place most participants still visited, whereas 50% of them had stopped going to a Sports facility, with no significant differences between country samples regarding how many participants had abandoned that place (Fisher’s exact test, p > 0.01). There were significant differences between country samples in the frequency of present participation and abandonment of the Hospital, Dentist’s office, Cemetery, Garden, and Forest (Fisher’s exact test, all p < 0.01). Although the participants still visited a variety of places, they had stopped going to places previously visited, which indicates reductions in participation, posing an inherent risk to well-being. The similarities and differences across samples from the four countries suggest that healthcare services and access to public transport may contribute to the complex interactional process of out-of-home participation for people living with dementia. The findings highlight the need for initiatives targeting specific types of places to support continued participation in society, especially places at a higher risk of abandonment such as places for recreation and physical activity.

Dementia-Friendly Transportation Services: A Scoping Review

“…In one multicentric, multimethod study conducted between 2015 and 2017, public transportation service was granted for 33% of participants with mild-stage dementia in Canada, 74% in Sweden, and 11% in Switzerland ( Thalén et al, 2022 ). Sweden had a significantly higher rate of granted public transportation service than the others, whereas Switzerland had a significantly lower rate ( p < .001, with post-hoc tests with Bonferroni correction).…”

“…For example, urban transportation systems may be well developed and available, but there were challenges in the large interchanges for people living with dementia ( Innes et al, 2016 ); rural spaces may have more individualized transportation, but the service availability was inconsistent and required higher cost ( Silverstein & Turk, 2016 ). In urban areas, access to a larger public transportation system such as rail and bus systems could be surveyed ( Thalén et al, 2022 ). In rural areas, paratransit and door-to-door services by volunteers and paid drivers were generally described ( Dobbs et al, 2010 ).…”

Family caregiver’s concerns and anxiety about unaccompanied out-of-home activities of persons with cognitive impairment

“…For these individuals, maintaining the status quo of independent living, comprising both domestic and social autonomy, is of high value [4,5]. However, the reality of the practical and emotional challenges of living with dementia, such as difficulties with direction or the perceived stigma of a dementia diagnosis, likely translates into a decline in the propensity for out-of-home social engagement [6]. Hackett et al (2019) found that the percentage of those with cognitive impairment and regular social interactions decreased from 55% pre-diagnosis to 23% post-diagnosis compared to 85% for those with no cognitive impairment [7].…”