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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...
Citations
... By hearing directly from persons living with dementia, the current study advances our understanding of the various ways that COVID-19 has impacted their well-being and their ability to understand the impact of the pandemic on their lives. Moving forward, it will be important to include the voices of persons living with dementia in authentic partnership (Dupuis et al., 2012) when developing and tailoring supports aimed at enhancing the well-being of persons with dementia, including supports that target physical well-being (e.g., exercise and physical activity programs), emotional wellbeing (e.g., art, dance, music, and other leisure activities), and social well-being (e.g., technological and non-technological approaches to connecting with others, peer-led social programs, dementia cafes). ...
COVID-19 has had a devasting impact on older adults in Canada, including persons living with dementia. This intrinsic case study sought to understand the perceptions of persons living with dementia regarding how COVID-19 has impacted their well-being. Ten persons living with dementia participated in in-depth qualitative interviews about their experience with COVID-19. Using thematic analysis, four themes were identified: (1) expressing current and future concerns; (2) social connections and isolation; (3) adapting to change and resilience through engagement and hope; and (4) we’re not all the same: reflecting individual experiences of the pandemic. Results highlight that while COVID-19 contributed to isolation, concerns, and frustrations, persons with dementia also demonstrated adaptation and resilience. This study reinforced that persons with dementia and their responses to challenges are unique. Therefore, interventions to support persons with dementia must also be individualized to each person’s abilities and circumstances.
... November 2020 Volume 22 Number 4 T he purpose of this article is to explore key underlying relational processes, work that we call 'Dawn,' and resulting implications for AI theory and practice, using examples from the work of the Partnerships in Dementia Care (PiDC) Alliance, a research network collaborating with partners from diverse long-term and community care settings to change the culture of dementia care . The processes characterizing Dawn both support and contribute to the necessary conditions for recognizing and channelling personal and organizational potential (Cooperrider & Whitney, 2005), and aspects of early phases of AI models, including planning and preparation, engaging participants, and determining who will be involved (AI Commons, n. d.;Bushe, 2011;Coghlan et al., 2003;Dupuis et al., 2012Dupuis et al., , 2016Dupuis et al., , 2018Hammond, 2013;Reed, 2007;Watkins et al., 2011;Whitney & Trosten-Bloom, 2010). ...
... The theoretical and philosophical underpinnings of the PiDC Alliance culture change work are drawn from four methodological and theoretical frameworks: the Alzheimer's Disease and related dementias (ADRD) planning framework (Dupuis, 2010); the authentic partnership (AP) approach (Dupuis et al., 2012); Participatory Action Research (PAR) (Kemmis & McTaggart, 2000); and AI (Cooperrider & Whitney, 2005;Cooperrider et al., 2008;Watkins et al., 2011; see also Dupuis et al., 2016). ...
... The AP approach supported the culture change process through guiding principles including genuine regard for self and others; synergistic (interdependent and reciprocal) relationships; and a focus on the process Practitioner November 2020 Volume 22 Number 4 involved in building partnerships, rather than simply focussing on the outcomes (Dupuis et al., 2012). ...
Appreciative Inquiry models identify diverse ways that AI initiatives may commence. Our Partnerships in Dementia Care Alliance AI early phase experience required a focus on key underlying relational processes, work that we call ‘Dawn,’ before we could begin. We identify and demonstrate these relational processes with examples from the PiDC Alliance culture change work on improving dementia care in diverse long-term and community healthcare settings.
... As a response to the expressed difficulties of enabling participation in decision-making for people with dementia, recent literature now see partnership or shared decision-making as the optimal way of including people with dementia in decisional processes (Smebye, Kirkevold, and Engedal 2012;Dupuis et al. 2012;Groen-van de Ven et al. 2018). However, to what degree the person is included in decisional processes referred to as shared decision-making varies (Miller, Whitlatch, and Lyons 2016). ...
Professional caregivers are aware that current best practice is to allow patients to make as many decisions as they can about their care, and yet they run up against a variety of barriers that keep them from allowing this to happen. The study explored the barriers to user participation as perceived by professional caregivers in home care. Twelve professional caregivers in Norwegian home care were interviewed. The interview data were thematically analysed. The results showed the following barriers to user participation: Patients are too ill, user participation collides with beneficence and non-maleficence, lack of background information, conflicting interests between patients and family caregivers, and organization of services. The study highlights how lack of understanding of the concept can lead to a normative application of user participation, which can put the patients’ safety at risk. In order to enable user participation for people with dementia, professional caregivers need knowledge of how to enable it. This requires time, professional autonomy, and clinical judgement. We argue that user participation should not impede care, but be an important part of it.
... Careful selection of strategies as the intervention occurred through readiness to change behaviour and thus readiness for discussion or more action- oriented strategies. The most important risk factor according to the person with dementia and their caregiver, was addressed first, removing the often patriarchal tendencies in health- care to presume their care needs ( Dupuis et al., 2012). The Trans-Theoretical Model of behaviour change identifies stages of pre-contemplation, contemplation, preparation, action and maintenance for behaviour change (Prochaska & DiClemente, 1983), with participants in this study moving positively through these stages. ...
Purpose:
Strong evidence exists for falls prevention, yet uptake of strategies can be fragmented and limited. For people with dementia, adoption of strategies may be impacted by changes in memory and planning. This paper describes the findings of a knowledge translation intervention for adoption of falls prevention strategies for people with dementia.
Methods:
Twenty-five dyads (people with dementia and their caregivers) participated in this mixed method intervention. The Knowledge to Action framework guided: collation of existing evidence into a useable format; identification of individual issues; understanding context; and evaluation of change over time. Demographic details, functional status, dementia severity, activity level, self-efficacy, falls risk and readiness to change behaviour were collected at baseline, 6 and 12 months. Goal setting and action planning using a discussion tool drove implementation.
Results:
Falls rates were 5.4 falls per 1000 days for the 12-month period, with no significant change in functional capacity or self-efficacy. There was a non-significant trend towards reduced falls risk. Readiness to change behaviour for falls risk increased from 84% to 96% by 6 months, with most moving from contemplation into action (n = 16), or preparation into action (n = 36), with adoption of strategies high (82%).
Conclusion:
Engagement with the person with dementia and their caregiver, through identification of their needs and preferences, and enabling choice resulted in high adoption of falls prevention strategies.
... CCHPs are well placed to be the information conduit, and provide choice to their clients in uptake of falls prevention strategies. They are in a strong position to build rapport (Low et al. 2013) and authentic healthcare partnerships (Dupuis et al. 2012), but need to be well supported to do so. Awareness is a crucial first step. ...
People living with dementia (PLWD) fall more frequently, with more adverse consequences, than general community-dwelling older people; however, falls prevention evidence for PLWD is limited. Increased success of falls prevention strategies for PLWD may rely on tailored interventions to address dementia-specific risk factors. The Australian person-centred care environment highlights the need to better understand sharing of falls prevention knowledge between clients, carers and health professionals. This study aims to examine knowledge of falls prevention for PLWD among community care health professionals (CCHPs) and explore effectiveness of an action-research approach to enhance falls prevention practice. Consecutive action-research sessions were conducted with four groups of Australian multidisciplinary CCHPs (n=18), including a knowledge survey of CCHPs, followed by implementation of action plans. Thematic analysis of the transcribed discussion was undertaken. Results showed limited knowledge and understanding of evidence-based falls prevention strategies, but small incremental changes made by CCHPs through action research offered insights into enhancing knowledge and awareness. Appropriate professional development for community care health professionals is needed to support falls prevention for PLWD, along with associated organisational changes, to ensure knowledge is adequate.
... This requires authentic partnerships with not-for- profit organizations serving people with dementia and, most importantly, inclusion of those living with and affected by dementia. 53 This type of dedicated and coordinated leadership specific to dementia strategic planning is needed in each health authority to knit a complete tapestry of policy that can move to action for sustainable improvement. ...
Emergency Departments (EDs) are an integral part of the Canadian healthcare system. Older people living with dementia challenge EDs. They have complex health profiles that pose multiple challenges for staff. The current one-size-fits-all approach that aids efficiency in a technologically dependent hospital setting may not always serve older people living with dementia, their caregivers, or staff well. The premise that older people living with dementia are a problem for Canadian EDs must be reconsidered. Understanding the complexity of the situation is aided by the dementia-friendly ED framework. We propose one way to enhance communication between those living with dementia who receive ED services and those providing the service.
... In optimal situations, the partnership involves representatives of many levels: patients and caregivers, advocacy groups, academic centers, private industry, and policymakers. 35,36 In LAC, the partnerships focused on dementia are often loosely organized. For example, an advocacy group might obtain financial support from the local Chamber of Commerce and retail stores as sponsors for a public event, such as a walk or a lecture series, but do not articulate a long-term vision for the partnership. ...
Latin America and the Caribbean (LAC) have limited facilities and professionals trained to diagnose, treat, and support people with dementia and other forms of cognitive impairment. The situation for people with dementia is poor, and worsening as the proportion of elderly in the general population is rapidly expanding. We reviewed existing initiatives and provided examples of actions taken to build capacity and improve the effectiveness of individuals, organizations, and national systems that provide treatment and support for people with dementia and their caregivers. Regional barriers to capacity building and the importance of public engagement are highlighted. Existing programs need to disseminate their objectives, accomplishments, limitations, and overall lessons learned in order to gain greater recognition of the need for capacity-building programs.
... In optimal situations, the partnership involves representatives of many levels: patients and caregivers, advocacy groups, academic centers, private industry, and policymakers. 35,36 In LAC, the partnerships focused on dementia are often loosely organized. For example, an advocacy group might obtain financial support from the local Chamber of Commerce and retail stores as sponsors for a public event, such as a walk or a lecture series, but do not articulate a long-term vision for the partnership. ...
Latin America and the Caribbean (LAC) have limited facilities and professionals trained to diagnose, treat, and support people with dementia and other forms of cognitive impairment. The situation for people with dementia is poor, and worsening as the proportion of elderly in the general population is rapidly expanding. We reviewed existing initiatives and provided examples of actions taken to build capacity and improve the effectiveness of individuals, organizations, and national systems that provide treatment and support for people with dementia and their caregivers. Regional barriers to capacity building and the importance of public engagement are highlighted. Existing programs need to disseminate their objectives, accomplishments, limitations, and overall lessons learned in order to gain greater recognition of the need for capacity-building programs.. América Latina e Caribe (ALC) têm instalações e profissionais treinados para diagnosticar, tratar e apoiar as pessoas com demência e outras formas de comprometimento cognitivo limitado. A situação para as pessoas com demência é pobre, e piora quando a proporção de idosos na população em geral está se expandindo rapidamente. Revisamos as iniciativas já existentes, com exemplos de medidas tomadas para fortalecer a capacidade e melhorar a eficácia dos indivíduos, organizações e sistemas nacionais que fornecem tratamento e apoio às pessoas com demência e seus cuidadores. As barreiras regionais ao reforço das capacidades e a importância do engajamento público são realçados. Os programas existentes precisam divulgar seus objetivos, realizações, limitações e lições globais aprendidas a fim de obter maior reconhecimento da necessidade de programas de capacitação. Palavras-chave: assistência médica, demência, capacitação, doença de Alzheimer, programas de saúde, habilidades, comunidade.
... Longstanding concerns about quality care provision, specifically in the area of LTC, have prompted calls for culture change that move us away from the current top-down, providerdriven approaches to more client-driven approaches and relationship-centred models of care (McWilliam et al., 2001;Nolan, Davies, Brown, Keady, & Nolan, 2004;Smale & Dupuis, 2004). What is needed is a LTC culture that: (1) has strong bidirectional relationships at its core that are premised on an ethic where each participant is viewed as equal (Dannefer et al., 2008;Dupuis, Gillies, et al., 2012;Holstein, Parks, & Waymack, 2011); (2) ensures direct, active and meaningful involvement in planning and decision-making of all key participants including clients, family members, staff, administrators, other community members and partners, and policy makers (Dupuis, Gillies, Mantle, Loiselle, & Sadler, 2008;McWilliam et al., 2003;Nolan, Lundh, Grant, & Keady, 2003;Ronch, 2003); (3) provides empowering, life-affirming and humanistic approaches to care by focusing on the experiences and needs of all involved in the care context, including clients, family members and staff (Gibson & Barsade, 2003;Holstein et al., 2011;Nolan et al., 2004); and (4) values on-going education and learning for all staff and ensures that processes and strategies are in place so all staff are well-equipped in their jobs and better able to translate research into practice (McWilliam et al., 2009;Smale & Dupuis, 2004). The evidence is clear. ...
... The third goal is to mobilize authentic dementia care partnerships. Authentic partnerships describe partnerships with persons living with dementia, their families and others that promote equality and social justice (Dupuis, Gillies, et al., 2012;Dupuis et al., 2008). The principles embedded in the ADRD framework integrated with those of the authentic partnership approach (described next) created a moral compass for the PiDC Alliance's work and a means to regularly check that we were remaining true to the principles. ...
... Building on the work of Adams and Clarke (1999) and Nolan et al. (2004) and informed by research conducted in collaboration with persons with dementia, family care partners and a range of professionals working in dementia care, Dupuis and her team at the Murray Alzheimer Research and Education Program (MAREP) further developed the partnership approach in dementia care by identifying a number of principles and enabling factors necessary to fully support persons with dementia in decision-making with others (Dupuis, Gillies, et al., 2012;Dupuis et al., 2008). The authentic partnership approach recognizes how persons with dementia have traditionally been silenced and excluded from dementia care practices. ...
Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care.
... Our authentic partnership approach highlights factors that are necessary for ''transforming partnerships'' to happen. These include regularly connecting and committing to the partnership, creating a safe space for shared dialogue where no one feels ridiculed or judged, including and valuing diverse perspectives, maintaining open and honest communication by providing for a range of ways for participants to communicate their ideas and perspectives, and practising regular critical reflection and dialogue on the process (see Dupuis et al., 2012). Persons with dementia involved in this process also identified six key strategies that recreation professionals can use to better support persons with dementia in experiencing leisure. ...
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.
