Care-givers’ perspectives of occupational engagement of persons with dementia

Abstract

Meaningful engagement in activity is associated with the maintenance of health and wellbeing, but reduced activity participation is common among persons with dementia. Family care-givers play an important role in engaging their relatives with dementia in activities but little is known about their perception of occupational engagement. This study aimed to examine care-givers’ perception of occupational performance of their relatives from three aspects: person, occupation and environment. Adopting a qualitative methodology, semi-structured and in-depth interviews were conducted with 14 family care-givers. Care-givers were also asked to document the activity patterns of their relative, using the Activity Card Sort Hong Kong version (ACS-HK). The ACS-HK findings suggested that high-demand leisure activities were mostly retained (61%) while instrumental activities of daily living were the least retained (37%). Qualitative analysis revealed that care-givers’ perception of activity participation was intertwined with their motives and behaviours to get their relatives engaged in activities. Care-givers acknowledged occupational engagement as a means of maintaining wellness and used various strategies to encourage their relative's activity participation. Apathy and passivity, however, are difficult to deal with. Also, activity decisions appear to depend on the availability of support resources and a balance between safety concern and risk-taking. Clinical practitioners could assist care-givers by suggesting activity strategies and providing support resources for continued engagement of their relative in activities.