While our understanding of the subjective experience of dementia is growing, leisure's role within that experience is less clear. This study, guided by hermeneutic phenomenology, aimed to understand the meaning and experience of leisure for persons living with early stage memory loss. Four participants with early stage dementia participated in interviews, participant observation, and photovoice, in which participants are given cameras and asked to take photos of their day to day lives (Wang, 1999). Data revealed that participants experienced daily life with dementia, including leisure, within a paradox of challenge and hope. They struggled with the changes they experienced as a result of dementia, such as muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, they found ways to tackle life with dementia, by reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity to live their lives with hope.

In the 1940s, Carl Rogers introduced the notion of a client-centred or person-centred approach, originally called the ‘non-directive approach’. Over the past several decades, however, we have lost sight of the true intent behind Roger's relational approach, settling instead on well-intended but often paternalistic approaches that place patients or clients at the centre of care, but rarely, if ever, actively involve them in decision-making. This is no more apparent than in the case of persons living with Alzheimer's disease and other related dementias who, due to the stigma and misunderstanding surrounding dementia, are often assumed to lack the capacity to be involved in their own care and the care of others. Drawing on our experience working directly with persons with dementia, family members and professionals, and systematic research on a number of mutual partnership initiatives, the purpose of this paper is to present an alternative approach, one that views persons with dementia as equal partners in the context of dementia care, support and formal services.

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This study explored informal family caregiver experiences in supporting care transitions between hospital and home for medically complex older adults. Using a qualitative, grounded-theory approach, in-depth semi-structured interviews were conducted with community and resource case managers, as well as with informal caregivers of older hip-fracture and stroke patients, and of those recovering from hip replacement surgery. Six properties characterizing caregiver needs in successfully transitioning care between hospital and home were integrated into a theory addressing both a transitional care timeline and the emotional journey. The six properties were (1) assessment of unique family situation; (2) practical information, education, and training; (3) involvement in planning process; (4) agreement between formal and informal caregivers; (5) time to make arrangements in personal life; and (6) emotional readiness. This work will support research and clinical efforts to develop more well-informed and relevant interventions to most appropriately support patients and families during transitional care.

Mealtimes provide an opportunity for social activity and emotional connection. This grounded theory study focused on the meaning and experience of mealtimes in families living with dementia in the community; 28 partners in care and 27 persons with dementia were interviewed together and separately. Team analysis resulted in the development of a substantive theory which explains how eating together 'mirrors the way we are' and reveals the essence of what it is to be human while living with dementia. Mealtimes reflect how these families were being connected, honouring identity and adapting to an evolving life. This article focuses on three ways in which Being Connected occurs at mealtimes: being face to face, participating psychologically, and getting and giving support. Understanding the role that mealtimes play in promoting improved connections and thus relationships within the dementia context has important implications for both formal and family care partners. de men tia d e m e n t i a http://dem.sagepub.com vol 9(2) 191-213

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L'objectif de cette étude consistait à étudier les changements dans la participation de la famille après le déménagement d'un proche dans un établissement de soins de longue durée ainsi que les facteurs liés à ces changements. Des données quantitatives fondées sur des entrevues actives et approfondies ont été recueillies auprès de 35 membres des familles des patients à deux moments différents après le déménagement de leur proche dans un établissement. Les résultats révèlent certains changements, en matière de contacts, liés aux conditions personnelles, sociales, institutionnelles et médicales. Dans certains cas, de nouveaux types de soins ont été fournis ; dans la plupart des cas les soins ont été redéfinis ou fournis de manières différentes. La plupart des participants ne se voyaient pas comme des prestataires de soins, une perception qui est restée stable au cours du temps. Conformément à la théorie de la continuité, dans la plupart des cas, les familles cherchaient à trouver des manières d'adopter une approche constante en ce qui a trait à leurs rô les de proches et de soignants, surtout au cours de la première année qui a suivi le placement. Le personnel des établissements devrait néanmoins être conscient des facteurs qui peuvent causer des changements au cours du temps, du point de vue du rô le joué par la famille en matière de soins, et offrir du soutien aux familles qui doivent gérer ces questions. ABSTRACTThe purpose of this study was to examine changes in family involvement following a relative's move to a long-term care facility as well as factors associated with these changes. Qualitative data, using in-depth, active interviews were gathered from 35 family members at two points in time following a relative's move to a facility. Findings showed some changes in contact that were related to personal, social, institutional, and health conditions. Occasionally, new types of care were provided; more often care was rebalanced or expressed in alternative ways. The majority of participants did not view themselves as caregivers, a perception that remained stable over time. Consistent with continuity theory, families, in most cases, tended to seek ways to maintain consistency in their roles as family members and carers, particularly in the first year or so after placement. Nonetheless, facility staff should be aware of the factors that might influence changes over time in family caregiving roles and offer support to families dealing with these issues.

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