Sherry L. Dupuis

Moving beyond patient and client approaches: Mobilizing ‘authentic partnerships’ in dementia care, support and services

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 Rogers 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 Alzheimers 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.

Mealtimes and being connected in the community-based dementia context

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.

Bittersweet Journeys: Meanings of Leisure in the Institution-Based Caregiving Context

Research on leisure and caregiving has focused almost exclusively on caregivers providing care in the community. Guided by a symbolic interactionist approach and the conceptual framework of the caregiving career, the purpose of this study was to examine the meaning of leisure in the institution-based caregiving context. How family members define their roles and how those role definitions then influence the meaning of leisure was explored within a naturalistic, grounded theory approach using active interviews and personal logs as the data collection strategies. Five alternative caregiving role manifestations were identified and they very much affected the way that leisure was perceived in this context. The meanings of leisure—as constriction, as moments, and as reclamation—changed and evolved as the caregiving career did. The changeability and contradictions inherent in the meanings of leisure over the careers of caregivers are central concepts in an emerging grounded theory concluding the paper.

The role of leisure within the dementia context

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.

Understanding Ambiguous Loss in the Context of Dementia Care

Abstract This study examined the experience of ambiguous loss for family members caring for a person with dementia living in a long-term care facility. Data for this study came from in-depth, active interviews conducted with 38 adult daughters and 23 adult sons caring for a parent with dementia living in a long-term care facility. The stories shared by the adult children revealed that ambiguous loss in the dementia context involves a long, on-going process of several phases including anticipatory loss, progressive loss and acknowledged loss. The nature of the ambiguity shifts and the experience changes for families as they journey through the ambiguous loss process. Acceptance and avoidance were the two most common coping strategies used in dealing with acknowledged loss.

Just dance with me: an authentic partnership approach to understanding leisure in the dementia context.

Most research on marginalised groups, including those living with illness or disability, continues to exclude those experiencing illness or disability from decision making in the research endeavour. This is particularly true for persons living with dementia, who are stigmatised, misunderstood and assumed to lack the capacity to actively participate in all aspects of the research process. In this paper, we provide a detailed account of one collaborative project, an innovative participatory action research (PAR) project that brought together persons living with dementia, family members, recreation professionals from a range of settings (i.e., the community, day programmes, long-term care homes), Alzheimer Society staff and researchers as we worked together to consider the notion of leisure and its meanings for persons living with dementia. We describe the PAR cycles of planning, acting/observing and reflecting on what we have completed thus far; share our reflections on the process, including our struggles and insights on the possibilities of the approach; and present what we have learned from our partners with dementia about how we can better support them in similar processes.

The Experience of Engaging With Research-Based Drama: Evaluation and Explication of Synergy and Transformation:

Researchers describe how audiences experienced a research-based drama called I’m Still Here ; a production about persons and families living with dementia. The research drama was created to help diminish the unnecessary suffering that accompanies the misunderstanding and judgment of persons living with dementia. This article describes the immediate experience of seeing, hearing, and feeling research findings that have been transformed through drama. We explored how participants described the experience of engaging with the drama—what words they used, what was felt, and what lingered after the performance was over. Seven patterns or processes, called patterns of synergy are described: seeing anew; connecting with reverberating truths; placing and relating self; sensing embodied impact, discerning meaningful learning; expanding understanding of perspective; and affirming personal knowing. Each pattern of synergy is considered in light of participant quotes and extant literature. Findings support the promise of the arts in health-related research and education.

Nutrition education needs and resources for dementia care in the community.

Nutrition problems and specificly weight loss are common in older adults with dementia living in the community. Study 1 involved interviews with 14 formal providers to identify the range of nutrition concerns they had experienced. In study 2, 74 Canadian Alzheimer Society chapters were surveyed by e-mail (23% participation rate) to determine nutrition concerns and education resources provided to clients. In all, 26 of these nutrition pamphlets or handouts were rated on content and format by 2 independent researchers using a standardized rating system. Common nutrition concerns identified in older adults with dementia living in the community include safety, weight loss, forgetting or refusing to eat, appetite, dysphagia, and unfavorable eating behaviors. Most resources provided to clients were considered low quality and did not match the nutrition concerns expressed by formal providers. Currently, there is a considerable knowledge translation gap around nutrition and dementia, and this study provides a basis for the future development of nutrition education resources.

An Examination of Family Caregiver Experiences during Care Transitions of Older Adults

Cette étude a examiné les expériences informelles des aidants familiaux en soutenant les transitions de soins entre l’hôpital et la maison pour les adultes âgés avec des conditions médicales complexes. En utilisant une approche basée sur la théorie ancrée qualitative, une série d’entretiens semi-structurés a été realisée avec la communauté et des gestionnaires de cas et de ressources, ainsi qu’avec des aidants naturels de patients âgés souffrant de fractures de la hanche et des accidents vasculaires cérébraux et ceux qui se remettaient d’une chirurgie pour remplacement de la hanche. Six propriétés qui caractérisent les besoins des aidants naturels de fournir des soins de transition entre l’hôpital et la maison avec succès ont été intégrées dans une théorie qui adressent (1) l’horaire des soins transitoires et (2) le passage émotionnel. Ces six propriétés comprennent : (1) l’évaluation des situations familiales; (2) des informations sur les pratiques; (3) l’éducation et la formation; (4) l’accord entre les aidants officiels et informels; (5) le temps de prendre des dispositions pour la vie personnelle, et (6) la préparation affective et émotionelle. Cette étude soutiendra le développement d’interventions mieux informées et plus pertinentes, qui offrent le soutien le plus approprié pour les patients et leurs familles pendant les soins de transition.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.

The roles of adult daughters in long-term care facilities: Alternative role manifestations

Abstract Our understanding of the roles of family members within long-term care settings remains limited. Existing research conceptualizes the term “role” as a unidimensional concept and views the caregiving role as static. Employing a multidimensional conceptualization of roles, and guided by symbolic interactionism and the conceptual framework of the caregiving career, the purpose of this study was to gain a deeper and more comprehensive understanding of the roles of adult daughters in long-term care facilities from their perspectives. Specific techniques of the grounded theory approach combined with active interviews and personal logs were used as the research design procedures. Five caregiving role manifestations emerged in the womens stories: active monitors, regular visitors, accepting relinquishers, unaccepting relinquishers, and indirect supporters. Several factors explained differences in the role manifestations such as the focus of the support, perceptions of the psychological presence of the parent, and the sense of obligation and pressure to care.