Doing as much as I can do: the meaning of activity for people with dementia

Abstract

While it is assumed that persons with dementia benefit from being involved in meaningful activity, research examining this claim is limited. In particular, how individuals with dementia perceive this involvement is poorly understood. Therefore, the purpose of this research is to determine what constitutes meaningful activity from the perspective of persons with dementia, and to explore how they perceive its significance in their lives. We conducted an interpretive phenomenological analysis of multiple interviews and participant observation conducted with eight community-dwelling elders with mild to moderate dementia. For several participants, the single most important driving force in their lives was being active, doing as much as they possibly could. They were involved in a wide range of activities including leisure pastimes, household chores, work-related endeavors, and social involvements. These activities were meaningful in three ways: Through their involvement, participants experienced feelings of pleasure and enjoyment; felt a sense of connection and belonging; and retained a sense of autonomy and personal identity. Findings suggest that familiarity of the social and physical environment promotes involvement in activities. This provides a sense of continuity for people with dementia, with implications for their quality of life and personhood. Further implications of these findings for dementia care and future research are discussed.