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: 1.75). 08/2007; 11(4):384-93. DOI: 10.1080/13607860601086470
Source: PubMed


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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Available from: Habib Chaudhury, Dec 26, 2014
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    • "To maximise functional ability in people with dementia, all participation should be focused on the sort of activities that the residents used to manage and enjoy prior to the onset of dementia, as mentioned in the example in our findings. We believe that the residents may find meaning in the pleasure and enjoyment they experience, thus feeling that they still belong to the world (Phinney et al. 2007). We suppose that joy is greatest when the resident has the ability to be engaged and participate in his/her own life. "
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    ABSTRACT: To explore nurses' strategies that may support the sense of coherence in people with dementia. People with dementia are often described as people with no resources, people who need support from family or from healthcare personnel to function in everyday life. Despite the disease, some people still have the resources needed to cope well with parts of their lives and experience coherence. To date, no research has explored any nurses' strategies that may support the sense of coherence in people with dementia. The design of the study is qualitative and exploratory. Data were collected by participant observation and focus group interviews. Sixteen registered nurses from two different Norwegian nursing homes were recruited and participated in the study. Qualitative content analysis was used to analyse the data. The empirical material consisted of field notes from participant observation and transcripts from focus group interviews. Three generic categories were identified as strategies that may support sense of coherence in people with dementia: 'Finding and nurturing the individual's resources', 'Customising meaningful activities' and 'Finding creative solutions'. These categories were identified as strategies that may support and possibly enhance the sense of coherence in people with dementia. The findings provide an empirical base for assuming that with support and help from nurses, people with dementia may experience and strengthen their sense of coherence, therefore, the nurses need to be aware of the activities that may support and possibly enhance the sense of coherence in people with dementia. Despite the contextual limitations, this study highlights the need to identify and nurture resources in people with dementia, thus supporting their sense of coherence. The findings may contribute in enhancing the quality of care for people with dementia. © 2015 John Wiley & Sons Ltd.
    Journal of Clinical Nursing 08/2015; DOI:10.1111/jocn.12945 · 1.26 Impact Factor
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    • "This relationship between activity and personhood in the context of dementia has been demonstrated in previous research. It is thought for example, that people with dementia tend to perceive activity as meaningful when it provides for them a sense of social belonging and continuity of identity (Harmer & Orrell, 2008; Menne et al., 2002; Phinney et al., 2007). Similarly, spouses may seek to preserve the personhood of their partner with dementia by helping them stay involved in everyday activities, supporting their remaining abilities, and shielding them from what they can no longer do (Hasselkus & Murray, 2007; Perry & O'Connor, 2002; Phinney, 2006). "
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    ABSTRACT: In this article we draw from a larger study to examine experiences of two men and their families as they negotiate changing patterns of everyday activity in the months after receiving a diagnosis of dementia. We conducted in-depth interpretive phenomenological analysis of interview and observational data that were gathered from the men and various members of their families (n = 7) over a period several months. Findings are presented as three themes: The best kind of man (highlighting participants' historical positioning); It's a little different now (recognizing challenges posed by the dementia); and You have to do something (showing how the men and their families responded to and accommodated these challenges). We discuss these findings in terms of how everyday activity is not only important for supporting personhood in dementia, but it also contributes to sustaining family identity, and does so in a way that is deeply influenced by gender and masculinity.
    Journal of Family Nursing 04/2013; 19(3). DOI:10.1177/1074840713486727 · 1.34 Impact Factor
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    • "Secondly, despite clinical innovations allowing for much earlier diagnoses and the fact that people with dementia themselves remark that involvement in activities is beneficial even in the earliest stages (Knauss & Moyer, 2006; Sterin, 2002; Truscott, 2004), ATs are typically considered in the context of residential facilities, where participants tend to be in the later stages. Although Phinney et al. (2007) make an important contribution by examining meaningful activities for persons with dementia within the context of their homes and the Enriching Opportunitiesß model acknowledges that different barriers exist when trying to translate the 'potential' from skilled nursing homes to community-based living, such as private homes (Brooker & Woolley, 2007), these studies are exceptional in their attention to community-based individuals with dementia, despite the fact that the majority of persons so diagnosed in fact live at home (two-thirds, according to Marshall & Hutchingson, 2001). Although many of these ATs, particularly those that are 'person centered' and focus on meaningful activity rather than clinical outcomes exclusively, can in theory be utilized in the privacy of one's home, few studies address the issue (Truscott, 2004) or are tested outside of skilled nursing facilities (Sung & Chang, 2005). "
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    ABSTRACT: Despite steadfast interest in the use of arts therapies (ATs) with individuals who have dementia of the Alzheimer's type (DAT), a systematic review of the literature has not been conducted. This paper aims to critique this evidence base, including music, visual arts, drama, and dance/movement therapies between the years 1990 and 2010, and make suggestions on how it can be strengthened. The review addresses four questions: (1) What is the focus of the empirical base on using AT with persons who have DAT? (2) (How) have these studies been designed and evaluated? (3) What findings are reported? (4) What does this tell us about the potential of AT for enriching the lives of people with dementia? This analysis reveals that systematically designed, documented, and evaluated AT studies are scarce. Information on research design, operational concepts, measurement tools, and methods of evaluation/analysis are vague, if provided. Disagreement exists about the utilization of theoretical concepts and measurement/evaluation tools. The evidence base is further divided between studies focusing on the ‘product’ versus the ‘process’ of art. Shortcomings in dementia-specific research include a paucity of accounts from participants, failure to extend therapies to individuals in the early stages, a lack of application to those living at home, and often superficial attention to the meaningful aspects of doing art. Models investigating subjective well-being, or ‘enrichment,’ rather than objectively measured biomedical approaches privileging the management of deficits, would expand the evidence base and help ensure that those with dementia receive the services they want, since strictly allopathic methodologies will continue to fall short of adequately evaluating what are deeply idiosyncratic psychosocial issues.
    Dementia 09/2012; 11(5):633-656. DOI:10.1177/1471301211421090
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