Alison Phinney

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

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.

Personhood in dementia care Developing a research agenda for broadening the vision

Dementia has been understood primarily as a biomedical phenomenon with a trajectory of irrevocable decline related to neurodegenerative changes. However, growing evidence suggests that the performance and behaviour of persons with dementia are not exclusively determined by neuropathology but are also influenced by personal histories, social interactions and social contexts. This evidence shifts attention from the disease process to the need for a more in-depth understanding of the place of personhood in dementia care. Despite its intuitive appeal however, there is limited empirical research grounding this approach to care. This article articulates a framework for organizing research in this area that is based on a critical review and synthesis of research. It encompasses three interrelated and intersecting domains of inquiry: the subjective experience of the person with dementia, the immediate interactional environment and the broader socio-cultural context. Each domain encapsulates a unique but interrelated dimension of a person-centred approach to dementia care.

The lived body in dementia

Abstract Little is known about how people with dementia live day to day with this illness and the meaning it has for them. To explore this question, three in-depth interviews and participant observation were conducted with nine people experiencing mild to moderate dementia (MMSE 16–23) and their family caregivers. An interpretive phenomenological analysis revealed how dementia symptoms were experienced in and through the lived body: (1) “Being slow” is about the body slowing down as taken-for-granted activities become halting and tentative; (2) “Being lost” is about being unable to find ones way in an unfamiliar world; and (3) “Being a blank” is about being in an empty world wherein meaningful habits and practices fall by the wayside. These findings challenge the problematic mind–body dualism that pervades current understanding of dementia, thus opening the possibility for developing a vocabulary of care that takes more complete account of the lived experience of dementia.

Family strategies for supporting involvement in meaningful activity by persons with dementia.

Involvement in meaningful activity may be helpful for those with dementia, although it is a poorly understood phenomenon among those living in the community with family members. An interpretive phenomenological study was conducted with eight families to determine how family members support involvement in activity of persons with dementia and what it means to families. Repeated individual interviews were conducted with the person with dementia and a family member; they were asked to tell stories about their usual activities, to consider the impact of the dementia on everyday life and what they did to cope with difficulties. They were also observed taking part in everyday activities. Analysis revealed three strategies used by families to support activity: (a) reducing demands, (b) guiding, and (c) accompanying. These strategies allowed families to sustain meaning for both the person with dementia and the family itself. Significance for practice and ideas for future research are discussed.

Caring for hospitalized older adults at risk for delirium: the silent, unspoken piece of nursing practice.

More than half of hospitalized older adults will experience delirium, which--if left untreated--can lead to detrimental outcomes. Despite the prevalence and severity of delirium, nurses recognize less than one third of cases. Because little is known about how nurses manage this problem, a qualitative study was conducted to explore how nurses care for hospitalized older adults at risk for delirium. The data revealed that nurses care for older adults byTaking a Quick Look, Keeping an Eye on Them, and Controlling the Situation. The context in which nurses choose their priorities and interventions was reflected in the themes of the Care Environment and Negative Beliefs and Attitudes about older adults. Nurses are caring for an older population whose care requirements are different than those of younger people and in a context where this challenging work is rarely addressed. To improve care, the older population must be acknowledged, and nurses must possess the knowledge and resources needed to meet this populations unique needs.

Fluctuating Awareness and the Breakdown of the Illness Narrative in Dementia

This interpretive phenomenological study examined how awareness of dementia symptoms fluctuates over time and circumstance, thus forcing the breakdown of the illness narrative. Five women and four men (age 64–88 years) with mild to moderate Alzheimer’s disease (MMSE 16–23) participated in this study along with their family caregivers. In-depth interviews and participant observations were conducted with each individual and their caregiver to gather data about the person’s understanding of their symptoms. Findings illustrate how symptoms may be salient, or vague and inconspicuous; symptoms may be forgotten, or they may be entirely absent for the person. Experiencing symptoms in all of these ways means that it is difficult for people to articulate a narrative understanding of what is happening in their lives. The illness narrative of dementia becomes shared as others join in its telling, although finally it may become a narrative of chaos that is all but impossible to articulate.

Masculinities, Work, and Retirement Among Older Men Who Experience Depression

The high incidence of depression among older men has been linked to numerous factors. In this qualitative descriptive study of 30 older, Canadian-based men who experienced depression, we explored the connections between participants’ depression, masculinities, work, and retirement. Our analyses revealed three thematic findings. The recursive relationship between depression and work was reflected in depression impeding and emerging from paid work, whereby men’s careers and work achievements were negatively impacted by depression amid assertions that unfulfilling work could also invoke depression. Lost or unrealized empires highlighted the centrality of wealth accumulation and negative impact of many participants’ unfulfilled paid work aspirations. Retirement as loss and the therapeutic value of work reflected how masculine ideals influenced men to continue working to avoid the losses they associated with retirement. The findings confirm the need to support men’s work-related transitions by affirming a diversity of masculine identities beyond traditional workman/breadwinner roles.

Exploring the Meaning of Symptom Awareness and Unawareness in Dementia

&NA; This interpretive phenomenological study explores the commonalities and differences in how people with dementia understand the meaning of their symptoms, comparing those who are aware of their impairment, those who are unaware, and those who have mixed awareness. Participants included five women and four men with mild to moderate Alzheimers disease. The Anosognosia Questionnaire‐Dementia (AQ‐D) was used to measure symptom awareness, and in‐depth interviews and participant observations were conducted to gather qualitative data about the meaning of symptoms. AQ‐D results identified a range of awareness across the nine participants. Three were aware of their symptoms, three were unaware, and three had mixed awareness. Interpretive analysis of the qualitative data revealed three meaning narratives that illustrate qualitative distinctions in symptom experience across the different levels of awareness: (a) “Everything works more slowly” is a narrative of awareness; (b) “Its just old age” is a narrative of unawareness; (c) “It does not stick in the brain” is a narrative of mixed awareness. Such narratives offer important clues about the meaning and significance of symptoms for people with dementia. Nurses might use this information to tailor strategies for interacting with and offering support to people with dementia, depending on each individuals level of awareness.

Shifting Patterns of Everyday Activity in Early Dementia: Experiences of Men and Their Families

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.

Invisible hands: the role of highly involved families in long-term residential care.

Care work by family and friends is recognized as a cornerstone of community-based care for older adults; however, the role of families in institutional-based care work has been less well understood and researched. Drawing on findings from a critical ethnographic study, this article aims to examine the unique role of highly involved family members within long-term residential care. The study took place between October 2006 and April 2008 in two facilities in British Columbia, Canada. A purposive sample of 11 highly involved family members participated in in-depth interviews and participant observations. The main themes were “Hands-On,” “Hands-Off,” “Surveillance,” and “Interlopers.” These themes illuminate the ways in which highly involved family members engaged in care work, including how they positioned themselves and were positioned by staff and administrators. Implications of the study focus on the need to include families in philosophies of care and policies that shape care work in long-term residential care.