Participation in everyday occupations and situations outside home for older adults living with and without dementia : places, familiarity and risks

Abstract

Participation in occupations and places outside the home has been related to health and social benefits as well as offering challenging and risks for older adults living with and without dementia, yet little is known about how this participation is experienced, also considering the places visited and the occupations performed. Places are central in a transactional and occupational perspective to understand how visiting, maintaining and abandoning them affects their participation outside the home. Acknowledging the complexity and interrelatedness properties of participation, with the embodiment of places by the occupation while it is embedded in the place, provides a new way of examining participation. Thus, the overarching aim of the fours studies was to explore and provide new knowledge on participation in places outside the home for older adults with mild-to-moderate dementia as compared with older adults without dementia, as well as developing an understanding of the transactions between the persons and the places, and how places outside home are associated with perceived participation.

To attain this aim, the Participation in Activities and Places Outside Home (ACT-OUT) questionnaire was developed in Study I, as no tool existed that combined occupations and places. ACT-OUT was revised and aligned using cognitive interviews with 26 older adults living without dementia and five older adults living with dementia. ACT-OUT was then used in Study II, together with the occupational gap questionnaire OGQ, to evaluate stability and change in places visited outside home, and associations between number of places currently visited and perceived occupational gaps, and in Study III to consider factors, e.g. perceived risks, that potentially affected perceived participation outside the home with 35 older adults living with dementia, in comparison with 35 older adults living without dementia. Study IV used qualitative, mobile interviews to explore familiarity outside home as experienced by nine older adults living with dementia.

Findings (Study II) showed that participants living with dementia visited places to a lesser extent than the comparison group. Social and cultural places as well as places for recreation and physical activity tended to be abandoned, in contrast to places for medical care. Overall, they maintained less places and abandoned more places than the group of comparison, and participation in places was associated with occupational gaps for those living without dementia. In Study III, number of places visited, were associated with the perception of participation outside home, but only for the group of persons living without dementia, while risks of falling and for getting lost were associated for those living with dementia. Findings in Study IV showed that familiarity was experienced in a continuous way, as a whole and in repeated occurrences in personal territories that encompassed diverse places and occupations. This thesis contributed new knowledge about how visiting places contributed to our understanding of the conception of participation outside the home of older adults living with and without dementia, including how perceived risks would influence participation. Familiarity was seen as an overarching concept that links place with participation outside the home, as personal territories including places support participation outside the home for older adults living with dementia.