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19 results

  • Gardens, agency and citizenship of people with dementia: a critical interpretive synthesis

  • Lee Rushton, Louisa Smith, Lyn Phillipson
  • Journal:
    Ageing & Society , First View
    Published online by Cambridge University Press:
    19 December 2024, pp. 1-23
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  • People living with dementia are often presumed to have no agency or capacity to act in the social world. They are often excluded from participating in research while research methodologies may not capture their embodied engagement with people and places. Yet, like everyone, people with dementia can express their agency in nuanced ways, for example, through emotions or embodied expression. In the conceptual framework discussed here, nuanced agency is conceived as consisting of non-deliberative elements (embodied, emotional, habituated, reflexive and intersubjective) and deliberative elements (choices or decisions and facilitative). Although people with dementia have been found to benefit from gardens with their sensory appeal, how they experience gardens is not well understood. This critical interpretive synthesis aims to explore how people with dementia experience nuanced forms of agency and citizenship in gardens. A conceptual framework of agency was developed to address the aim and support the analysis. Analysis of the 15 included studies highlighted the value of the conceptual framework in identifying a wider and more granular array of nuanced agency expressed in embodied form and through dialogue. This included expressions of intersubjective and facilitative agency that informed opportunities for people with dementia to experience relational citizenship socially in communal garden settings. These findings suggest an opportunity for researchers to explore the embodied agency of people living with dementia more comprehensively by applying theoretical concepts of agency. Further testing of the framework’s utility for guiding collection and analysis of primary data involving people with dementia in garden settings is recommended.

  • The meaning of home when you don't live there anymore: Using body mapping with people with dementia in care homes

  • Louisa Smith, Chantel Carr, Isabelle Chesher, Lyn Phillipson
  • Journal:
    Ageing & Society / Volume 45 / Issue 2 / February 2025
    Published online by Cambridge University Press:
    17 August 2023, pp. 207-232
    Print publication:
    February 2025
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  • The significance of home is broadly recognised as representing selfhood, safety and autonomy. For older people, especially those with dementia, the ability to age in place at home can be threatened by a necessary move into a care home. Home has heightened importance for people with dementia. We know most people want to stay in their own homes, but there is limited research which explores what home means for people with dementia when they move into care homes. Based in a care home in regional New South Wales, Australia, this study used the arts-based method, body mapping, to explore what home meant to people with dementia and/or cognitive impairment. Seven body maps were co-created by current residents (four), family members and supporters (six) and researchers (three). The findings of the body-mapping process highlighted that home is much more than a physical location. Home meant having the ability to carry out practices and rituals, use objects, maintain relationships and experience sensations that are personally meaningful, and which differ from one person to the next. Their body maps revealed that in care homes, people could not ‘do home’ anymore because many of the practices, objects, people and places that mattered to them were no longer accessible. Body mapping was a useful method that facilitated the exploration of a holistic expression of home that would not have been possible with more traditional methods. For people with dementia, home was not only embodied and spatial, but also temporal, helping us to understand the ways in which care homes might facilitate a greater sense of home for people with dementia.

  • Investigating the lived experience of LGBT+ people with dementia and their care partners: a scoping review

  • Louisa Smith, Isabelle Chesher, Karen Fredriksen-Goldsen, Richard Ward, Lyn Phillipson, Christy E. Newman, Felix Delhomme
  • Journal:
    Ageing & Society / Volume 44 / Issue 4 / April 2024
    Published online by Cambridge University Press:
    30 May 2022, pp. 843-866
    Print publication:
    April 2024
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  • Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia.

Dementia and Place
  • Practices, Experiences and Connections
  • Edited by Richard Ward, Andrew Clark, Lyn Phillipson
  • Published by:
    Bristol University Press
    Published online:
    13 May 2022
    Print publication:
    24 September 2021
  • Giving voice to the lived experiences of people with dementia across the globe, this text highlights the challenges presented as dementia care shifts to a community setting. Contributors address the social aspects of environment and, using a unique 'neighbourhood-centred' perspective, provide an innovative guide for policy and practice.

  • 1 - Introduction: Placing dementia

  • Edited by Richard Ward, University of Stirling, Andrew Clark, University of Salford, Lyn Phillipson, University of Wollongong, Australia
  • Book:
    Dementia and Place
    Published by:
    Bristol University Press
    Published online:
    13 May 2022
    Print publication:
    24 September 2021, pp 1-22

  • Summary

    Is there somewhere that dementia belongs? If we had asked this question 20 years ago doubtless the weight of responses would have emphasised institutionalised settings: hospitals, clinics and care homes. Such places would likely be secured, perhaps bounded by fences – places of containment and segregation (Steele et al, 2019), of care, but also control (Ward et al, 2008; Kelly and Innes, 2013). They may even be places where the occupants desired to be elsewhere, congregating at the doors or at the edges of the building (Chalfont, 2008), perhaps even making a bid to escape (Chatterji, 1998; Bartlett, 2007). It is far less likely those responses would have foregrounded outdoor or public spaces. Indeed, commentators writing at the turn of the new century were keen to highlight that public spaces were rarely considered appropriate for people with dementia (Blackman et al, 2003). On the whole, biomedically informed research on dementia considered independent movement beyond the home to be fraught with risk, often focusing on the prevalence and frequency of people with dementia becoming lost, but without considering what role the environment itself might have played in these situations (for example, McShane et al, 1998). Silverstein and colleagues (2002) captured the caring but paternalistic and risk-averse mood of the time: ‘If someone with dementia can walk, that person can wander and become lost. If someone with dementia is missing, that person is lost. And if someone with a dementia is lost, that person is at risk of harm’ (p 7).

    Fast-forward to the end of the first quarter of the 21st century and much has changed. Arguably, if we posed our question now a more diverse set of responses would ensue. Hopefully a more diverse range of people would feel entitled and enabled to offer their perspective, revealing that ways of engaging and eliciting the direct views of people living with dementia have in themselves evolved a great deal (for example Keady et al, 2017). Yet, arguably the legacy of efforts to ‘place dementia’ still inhabit approaches to the condition. Consider, for example, the everyday language of dementia care practice, talk of ‘admission and discharge’, of being ‘allocated a bed’, ‘awarded a place in day care’ or deemed ‘eligible for respite’.

  • 14 - Conclusion: Dementia emplaced

  • Edited by Richard Ward, University of Stirling, Andrew Clark, University of Salford, Lyn Phillipson, University of Wollongong, Australia
  • Book:
    Dementia and Place
    Published by:
    Bristol University Press
    Published online:
    13 May 2022
    Print publication:
    24 September 2021, pp 208-217

  • Summary

    Thinking through dementia and place

    In the Introduction to this book, we proposed that dementia and place are co-constitutive, discursively and experientially, but to date this relationship has yet to be given full consideration. This is not to overlook an extensive tradition of research into dementia and the environment, but rather to suggest that an explicit focus on how dementia comes to shape understandings and experiences of place, and vice versa, remains underdeveloped in the field of dementia studies. The preceding chapters find common ground or, more accurately, share a common starting point, of seeking to understand experiences of dementia through the locational lens of the neighbourhood. Yet while most of the chapters start out from here, few end up at the same end point. In part, this may be because a neighbourhood is a somewhat slippery concept, implying simultaneously a scale of perspective as well as a lived phenomenon worth investigating. Indeed, what emerges overall is how neighbourhoods can offer a particular position from which to enhance our understanding of life with dementia and, in turn, of how living with dementia provides sometimes unique and valuable ways of knowing what neighbourhoods are about.

    The chapters demonstrate the diversity of theoretical and conceptual thinking about how we might approach and understand place-based experiences for those living with dementia. They also inform and extend the conceptual and theoretical stock of dementia studies, drawing on ideas already in circulation, such as personhood and social citizenship (Chapter 10), and borrowing from other disciplines and perspectives, such as transactional perspectives and place integration (Chapter 4), relational space (Chapter 2), models of social health (Chapter 11) and performativity (Chapter 7). The need for renewed attention to conceptual thinking about people in ‘local’ environments is explicitly seen in Seetharaman and colleagues’ (Chapter 8) exploration of the dynamic relationship between the person living with dementia and neighbourhood environments, which seeks to better integrate the physical and psychosocial dimensions of the neighbourhood environment in people's lives. The result there, and indeed across the book, are attempts to think differently not so much about life with dementia, but about life with dementia in and through place.

  • 11 - The good, the challenging and the supportive: mapping life with dementia in the community

  • Edited by Richard Ward, University of Stirling, Andrew Clark, University of Salford, Lyn Phillipson, University of Wollongong, Australia
  • Book:
    Dementia and Place
    Published by:
    Bristol University Press
    Published online:
    13 May 2022
    Print publication:
    24 September 2021, pp 160-185

  • Summary

    Introduction

    Developing bodies of work in interdisciplinary dementia research are engaging with concepts of place and spatiality as they relate to the everyday experience of living with dementia (Clarke and Bailey, 2016; Odzakovic et al, 2018). Rather than focus on the ‘dis-abilities’ of a person and their effect on navigation or wayfinding, these works have looked first to understand environmental barriers and to improve the enabling characteristics of environments – through features such as signage, pathways and distinctiveness (Mitchell and Burton, 2010). Building upon understanding the role of material geographies is work that engages with more progressive understandings of neighbourhoods as spaces of lived experience, belonging and relational ties (Ward et al, 2018; Clark et al, 2020). This evolving understanding of the vital importance of place and space for people with dementia is in contrast to a spatial literature where the relationship of people with dementia to space was pathologised – for example the reframing of the everyday practice of walking as a form of deviant wandering (Brittain et al, 2017). Rather than support mobility, a pathologising spatial lens problematises outdoor mobility for people with dementia as a health and safety risk and a social burden (MacAndrew et al, 2018). For those receiving a dementia diagnosis, notions like ‘prescribed dis-engagement’ (Swaffer, 2015) can foreclose possibilities for continuing involvement in the everyday spaces of community life. This prevalent narrative within the medicalised model sees dementia as a disease without a cure, with many medical practitioners accompanying diagnoses with instructions to abandon activities that are crucial to well-being and personhood and focus instead on end-of-life affairs and a potential trajectory of suffering.

    People living with dementia have the right to freedom of movement and liberty and to be supported to maintain an ‘activity space’ (Hägerstrand, 1970) of regular social activities and movement within their neighbourhoods (Cahill 2018; Steele et al, 2019). These rights are being demanded through dementia activism and a closer alignment with the disability rights movement (Thomas and Milligan, 2018; Shakespeare et al, 2019). A new commitment to inclusion is also evident in some expressions of the international Dementia Friendly Communities (DFC) movement (Alzheimer's Disease International, 2017).

  • Re-imagining care transitions for people with dementia and complex support needs in residential aged care: using co-designed sensory objects and a focused ethnography to recognise micro transitions

  • Louisa Smith, Lyn Phillipson, Pat Knight
  • Journal:
    Ageing & Society / Volume 43 / Issue 1 / January 2023
    Published online by Cambridge University Press:
    14 April 2021, pp. 1-23
    Print publication:
    January 2023

  • The concept of transition is often used in health and lifecourse research to understand a significant movement from one state or place to another. While people with dementia experience more major transitions than their peers, they are often excluded from transitional care research. This study set out to develop meaningful transitional supports for people with dementia and complex support needs who were undertaking a significant planned geographical transition from their current residential aged care facility to a new purpose-built facility. Using the language of complex support needs acknowledges that participants in this study have a breadth and depth of need, including cognitive, physical, psycho-social and communication impairments and social and cultural disadvantage associated with ageing, institutionalisation and social isolation. To support their move, Participatory Action Research was used to support the co-creation of transitional objects (personalised scarves and blankets) with 15 people with dementia, their families and care staff. Whilst these objects were useful in supporting transition, it was not in the way we imagined. Whilst our initial focus had been on supporting a significant geographical transition, rather it was four types of micro transitions in which the transitional objects were used: small physical transitions (from one place to another); social transitions (entering or exiting personal interactions); activity transitions (moving between activities); and time travel (moving between different times). Reimagining transitions from the perspective of people with dementia and complex support needs involves the recognition of the need for supports for micro as well as macro transitions. Personalised objects to support these everyday micro transitions have the potential to make the lives of people with dementia and complex support needs more manageable, meaningful and comprehensible. Reimagining transitions in dementia in this way helps us reimagine dementia itself, as a constantly fluid, dynamic and responsive series of moments which also has implications for the re-imagination of dementia care.

  • Are Big Food’s corporate social responsibility strategies valuable to communities? A qualitative study with parents and children

  • Zoe Richards, Lyn Phillipson
  • Journal:
    Public Health Nutrition / Volume 20 / Issue 18 / December 2017
    Published online by Cambridge University Press:
    29 August 2017, pp. 3372-3380
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  • Objective

    Recent studies have identified parents and children as two target groups whom Big Food hopes to positively influence through its corporate social responsibility (CSR) strategies. The current preliminary study aimed to gain an in-depth understanding of parents and children’s awareness and interpretation of Big Food’s CSR strategies to understand how CSR shapes their beliefs about companies.

    Design

    Community-based qualitative semi-structured interviews.

    Setting

    New South Wales, Australia.

    Subjects

    Parents (n 15) and children aged 8–12 years (n 15).

    Results

    Parents and children showed unprompted recognition of CSR activities when shown McDonald’s and Coca-Cola brand logos, indicating a strong level of association between the brands and activities that target the settings of children. When discussing CSR strategies some parents and most children saw value in the activities, viewing them as acts of merit or worth. For some parents and children, the companies’ CSR activities were seen as a reflection of the company’s moral attributes, which resonated with their own values of charity and health. For others, CSR strategies were in conflict with companies’ core business. Finally, some also viewed the activities as harmful, representing a deceit of the public and a smokescreen for the companies’ ultimately unethical behaviour.

    Conclusions

    A large proportion of participants valued the CSR activities, signalling that denormalising CSR to sever the strong ties between the community and Big Food will be a difficult process for the public health community. Efforts to gain public acceptance for action on CSR may need greater levels of persuasion to gain public support of a comprehensive and restrictive approach.

  • The development and testing of the dementia friendly communities environment assessment tool (DFC EAT)

  • Richard Fleming, Kirsty Bennett, Terri Preece, Lyn Phillipson
  • Journal:
    International Psychogeriatrics / Volume 29 / Issue 2 / February 2017
    Published online by Cambridge University Press:
    08 November 2016, pp. 303-311
  • Background:

    There is a growing recognition of the need to make the built environment in towns and cities more enabling for people with dementia. This study reports the development of a reliable tool to assess the support provided to people with dementia by public and commercial buildings such as council offices, supermarkets, banks, and medical centers as they approach, use, and leave them.

    Methods:

    A three-step process was carried out to develop and establish the reliability of the tool: (1) a review of principles and available tools informed the development and modification of an environmental audit tool of proven utility, (2) the draft tool was subjected to an iterative process of evaluation by a team of people with expertise in design and town planning, people with dementia and their carers, (3) inter-rater reliability and internal consistency were assessed on a sample of 60 public and commercial buildings.

    Results:

    The review of available tools led to the drafting of a tool that was refined through iterative, experience-based evaluation resulting in a tool that has high inter-rater reliability and internal validity. The data gathered enabled a sample of banks, libraries, shops, medical facilities, supermarkets and council offices to be compared.

    Conclusions:

    The new tool aids the collection of reliable information on the strengths and weaknesses of public and commercial buildings. This information is likely to be of use in the refurbishment of these buildings to improve their support of people with dementia as they use them in their daily life.

  • 4 - Evidence-based practice

  • Dawn Forman, Curtin University, Perth, Dimity Pond, University of Newcastle, New South Wales
  • Book:
    Care of the Person with Dementia
    Published online:
    06 August 2018
    Print publication:
    15 September 2015, pp 63-80

  • Summary

    Learning outcomes

  • Identify the challenges of applying evidence-based practice to health workplaces.

  • Discuss the role of interprofessional education in supporting the translation of evidence into practice within dementia care.

  • Describe the barriers and enablers of knowledge translation and evidence-based practice.

    • Key terms

  • evaluation

  • evidence-based practice (EBP)

  • interprofessional education (IPE)

  • knowledge translation (KT)

  • power

    • Introduction

    The concept of evidence-based practice (EBP) has become the gold standard for health care as it envisions that new and innovative findings (ideas, treatments, technology and methods) will be incorporated into the education of health care teams and thus will lead to improvements in real-world practice with the application of current knowledge. It makes sense that we look to the research literature (peer reviewed and published studies), evaluate what we find, and use evidence in our planning and our ways of doing things. The Oxford Centre for Evidence-Based Medicine (Howick et al., 2011) has developed a hierarchy of likely best evidence with five levels of evidence from strongest to weakest: systematic reviews, randomised controlled trials, cohort studies, case series and clinical/mechanistic reasoning. They link the evidence to whether it is being used for diagnosis, prognosis, therapy and prevention, or economic decision analysis. Eccles and colleagues (1998) used three evidence categories to develop guidelines for the primary care management of dementia: They are:

  • I well-designed randomised controlled trials, meta-analyses or systematic reviews;

  • II well-designed cohort or case control studies;

  • III uncontrolled studies or external consensus.

  • The brave new world of older patients: preparing general practice training for an ageing population

  • Andrew Bonney, Lyn Phillipson, Sandra C. Jones, Julie Hall, Rashmi Sharma
  • Journal:
    Primary Health Care Research & Development / Volume 16 / Issue 6 / November 2015
    Published online by Cambridge University Press:
    29 January 2015, pp. 578-588
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  • Aim

    Develop and pilot test evidence-based resources for general practice training practices to enhance older patients’ (65+ years) interactions with General Practice Registrars (GPRs).

    Background

    In Australia, general practice trainees, referred to as GPRs, see fewer older patients and patients with chronic conditions than doctors who have completed their specialist GP training. This reduces learning opportunities for GPRs in the management of these important patient groups. Therefore, developing effective strategies to improve GPR–older patient interaction is critical to primary care training, to meet the current and future needs of an ageing population.

    Methods

    Adopting a social marketing approach, GPR practice resources were developed to address knowledge and attitudinal barriers at the practice and patient level to improve older patient comfort, and willingness to engage, with GPR care. Two focus groups with older patients (n=18) and interviews with staff of training practices (n=12) were utilised to pre-test resources. Amended resources were pilot tested and evaluated in a naturalistic GPR training practice setting using a structured patient questionnaire (n=44).

    Findings

    Pilot evaluation suggests improved comfort and willingness of older patients to interact with GPRs. In all, 54% of survey participants indicated they would be more likely to make an appointment with a Registrar in the future as a result of exposure to the resources. In all, 40% of patients would feel comfortable having a GPR manage a complex or chronic condition, which compares favourably with 28% of similarly aged patients in previous research. The use of tailored, engaging and informative GPR resources for older patients and practice staff may be an important contributor to addressing the growing problem of ensuring GPRs are adequately engaged in treating older patients. The adoption of a social marketing framework was instrumental in enhancing the acceptance and effectiveness of this intervention.