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

School of Nursing, University of British Columbia, Vancouver, BC V6T 2B5, Canada.
Aging and Mental Health (Impact Factor: 1.78). 08/2007; 11(4):384-93. DOI: 10.1080/13607860601086470
Source: PubMed

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.

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    ABSTRACT: Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions:
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    ABSTRACT: Most dementia research investigates the social context of declining ability through studies of decision-making around medical treatment and end-of-life care. This study seeks to fill an important gap in research about how family members manage the risks of functional decline at home. Drawing on three waves of in-depth interviewing in 2012-2014, it investigates how family members in US households manage decline in an affected individual's natural range of daily activities over time. The findings show that early on in the study period affected individuals were perceived to have awareness of their decline and routinely drew on family members for support. Support transformed when family members detected that the individual's deficit awareness had diminished, creating a corresponding increase in risk of self-harm around everyday activities. With a loss of confidence in the individual's ability to regulate his or her own activities to avoid these risks, family members employed unilateral practices to manage the individual's autonomy around his or her activity involvements. These practices typically involved various deceits and ruses to discourage elders from engaging in activities perceived as potentially dangerous. The study concludes by discussing the implications that the social context of interpretive work around awareness and risk plays an important role in how families perceive an elder's functional ability and manage his or her activity involvements. Copyright © 2015 Elsevier Ltd. All rights reserved.
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Dec 26, 2014