Community participation in activities and places among older adults with and without dementia

Abstract

Availability of community-based destinations and amenities can facilitate healthy aging by supporting older adults’ functional abilities and enabling their participation in society, especially for those experiencing declining cognitive abilities. This study used a survey tool called participation in ACTivities and places OUTside the Home for older adults, specifically designed to examine the out-of-home participation of older adults living with or without dementia, to collect data on specific places and activities that individuals participate in over time. Thirty cognitively intact participants and 29 participants living with dementia were recruited. The past/present net participation figures indicate that all destinations are likely to be abandoned by persons with dementia over time. The findings indicate that both groups of participants were most likely to abandon recreation and physical activity places, although a higher number of persons with dementia reported that they would likely abandon these places in the future than the cognitively intact participants. Participants with dementia indicated multiple en route and at destination challenges, as well as their coping strategies. This study adds to our understanding of the out-of-home places visited by persons living with and without dementia and the patterns of changes in those visits over time. The findings are useful for health and social care professionals, including occupational therapists, social workers, as well as family caregivers, in recognizing the relative importance of certain out-of-home places and activities over others and the challenges faced by persons with dementia in getting to those places. This knowledge can inform programme and service providers to develop targeted interventions to support continued engagement by older adults with dementia and cognitively intact older adults.

Visiting Out-of-Home Places When Living With Dementia: A Cross-Sectional Observational Study: Visiter des lieux hors du domicile lorsque l'on vit avec une démence: étude transversale observationnelle

“…The strategies included: (a) appropriate interview setting to ensure confidentiality and comfort, like the home; (b) taking time to build rapport with the person; (c) adapting the pace of the interview; (d) rephrasing the questions if needed; (5) paying attention to lapse in concentration and possible distractions, difficulty in finding words, and possible anxiety; and (6) listening attentively and being empathic ( Cridland et al, 2016 ). It has been shown that persons living with dementia are able to share their perspectives on their own participation outside home ( Alzheimer Europe, 2011 ; Chaudhury et al, 2020 ).…”

“…Although not all spaces become places for all individuals, it supports a subjective perspective on participation ( Brown et al, 2004 ). As persons living with dementia engage in occupations in diverse places, they might create experiences of performance and perceive their participation outside home ( Chaudhury et al, 2020 ) that they are then able to tell about. Places hold individual meanings, embracing social, cultural, and political aspects, as well as spatial and temporal dimensions ( Hand et al, 2017 ).…”

“…In addition, the decline in participation among persons living with dementia is complex and nuanced: many places show commonalities in participation rather than significant differences between groups of persons living with and without dementia ( Chaudhury et al, 2020 ; Gaber et al, 2019 ). Yet, to better understand the “shrinking world” effect, it is important to identify places in which participation changes with the course of the disease.…”

Accessing public space in the digital society: relationship between the use of everyday technology and places visited outside the home after acquired brain injury

“…Information from parts two and three of ACT-OUT, which enquire about the activities and circumstances surrounding two places in each domain and self-perceptions of risk, as well as information from part one about places visited in the past and in relation to future were not intended for use in this study. Earlier research provides information about the development of ACT-OUT and use of the instrument in samples of older people with dementia [5,24,25], psychometric testing is ongoing in studies in different populations. With the changes mentioned above and the promising results of the testing, the ACT-OUT was judged to be suitable for assess out-of-home participation also in people in working age with cognitive impairment.…”

Kaleidoscopic associations between life outside home and the technological environment that shape occupational injustice as revealed through cross-sectional statistical modelling

“…The term 'shrinking world' was introduced to describe the impact of dementia on people's outdoor lives (Duggan et al, 2008). Subsequently, a cross-sectional study found that over time, all community destinations and amenities outside home were more likely to be abandoned among people with dementia (Chaudhury et al, 2020). However, the same study found that participating older adults without cognitive impairment abandoned places for physical and recreational occupations.…”