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Broadening the dementia debate

Broadening the dementia debate: Towards social citizenship

Ruth Bartlett
Deborah O’Connor
with a foreword by Jim Mann
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  • Book Info
    Broadening the dementia debate
    Book Description:

    Dementia has been widely debated from the perspectives of biomedicine and social psychology. This book broadens the debate to consider the experiences of men and women with dementia from a sociopolitical perspective. It brings to the fore the concept of social citizenship, exploring what it means within the context of dementia and using it to re-examine the issue of rights, status(es), and participation. Most importantly, the book offers fresh and practical insights into how a citizenship framework can be applied in practice. It will be of interest to health and social care professionals, policy makers, academics and researchers and people with dementia and family carers may find it revitalising.

    eISBN: 978-1-84742-858-5
    Subjects: Sociology

Table of Contents

  1. List of tables and figures
    (pp. vi-vi)
  2. Series editor’s foreword
    (pp. viii-viii)
    Judith Phillips

    Dementia is an increasingly important issue in policy and practice; yet it receives less research funding than many other areas of ageing, is under-conceptualised, with primarily a psychological or medical approach, and is concerned with care or clinical practice. This timely book seeks to challenge this. It highlights the increasing importance of the study of dementia, challenges our stereotypes, providing more positive associations and gives people with dementia a voice as Jim Mann so eloquently outlines in his foreword. It views people with dementia as active citizens engaged in society and with responsibility and agency in shaping their future. It...

  3. Foreword by Jim Mann
    (pp. ix-xii)

    I have become a storyteller. Not with jokes or funny stories, although funny things happen to me a lot. But to tell others about living with Alzheimer’s. To tell people my story, my hopes and my intentions and, more importantly my expectations.

    Breaking the stereotype of a person with Alzheimer’s or other dementia as very elderly and in the final stages is very important to me. And it starts by speaking out, one person at a time.

    Like I did to the business acquaintance who sends emails to a broad address list. One day he sent a message that made...

  4. Part I: Social citizenship in theory

    • ONE Introduction
      (pp. 3-16)

      The theme of World Alzheimer’s Day 2007 was: ‘No time to lose – people with dementia speak out!’. And people have. After decades of being silenced, marginalised and discriminated against, people with dementia are beginning to use their voice and to speak out about their experiences. Men and women like Richard Taylor, Lynn Jackson, Jim Mann and Terry Pratchett have spoken at major conferences and public events to raise awareness of the discrimination they and other people with dementia face. Others have spoken or written candidly about the impact of dementia on their everyday lives in newsletters, at health committee...

    • TWO Setting the context for broadening the debate
      (pp. 17-28)

      For the past 30 years the Western world has seen the evolution of our understanding of dementia emerge through three relatively distinct paradigm shifts or ‘moments’. In the first moment, the condition was considered a fairly predictable sign of normal ageing, and hence was largely unremarkable and invisible. For example, in 1982, one of the authors (DO) recollects reading the physician-provided medical diagnosis for an 82-year-old woman with severe cognitive impairment preparing for a move into a care home; it read ‘old woman living with old man’. What is somewhat astounding retrospectively is that throughout the discussion about the suitability...

    • THREE The meaning and value of social citizenship
      (pp. 29-48)

      In the previous chapter the argument was made for a more contextualised, sociopolitical understanding of dementia. In taking this approach, citizenship emerges as an essential concept. The concept of citizenship is proving increasingly popular among people with early dementia, service providers, professional care workers, voluntary organisations and academics alike, and is often used alongside personhood to promote the rights of people with dementia. However, it is generally used uncritically and with little explanation or clarification as to what it actually means in relation to people with dementia, especially individuals with very severe dementia. The aim of this chapter is to...

  5. Part II: Social citizenship in action

    • FOUR Thinking and talking differently
      (pp. 51-68)

      While ideas associated with a social citizenship approach to practice may be conceptually intriguing, their real value lies in their potential to inform practice. In this chapter we argue that the first step in changing practice is to become more aware of the ways that we support and/or inadvertently sabotage the realisation of a critical social citizenship in people with dementia. Thus, the purpose of this chapter is to begin to demonstrate how analysing the situation of people with dementia from a sociopolitical perspective rooted in social theories of lifecourse, disability and citizenship can change the way we think about...

    • FIVE Implications for social and health care practices
      (pp. 69-94)

      New ideas about social citizenship and dementia demand new forms of practice. In the previous chapter we drew on ideas associated with social constructionism to highlight the importance of considering how language is used to create understandings and to inform practice. We suggest that attending to the use of language is an important way for tuning into oppressive ideas and reshaping how we think about dementia in a way that is more congruent with a social citizenship lens. We argue that critical self-reflection is the first step towards a social citizenship approach to practice, and that attention to language provides...

    • SIX Extending research practices
      (pp. 95-120)

      There is growing emphasis on developing practices and understandings that are informed by research. Often this is discussed under the guise of ‘evidence-based’ practice, but it is also reflected in discussion about ensuring that research is designed, conducted and disseminated in such a way that it is relevant to those for whom it is intended. The focus of this chapter is on examining the implications and applications of a social citizenship lens for research practices in the area of dementia studies. It is not about how to achieve evidence-based practice, or how to do social research per se, although conventional...

  6. Part III: Combining theory and practice

    • SEVEN Conclusion: working towards social citizenship
      (pp. 123-130)

      Understanding of dementia has evolved considerably over the past few decades, from considering serious cognitive impairment as an expectable part of the ageing process, to recognising dementia as a biomedical phenomenon, and then towards the importance of seeing beyond the bio-physiological issues to the person behind the label. It is time for the emergence of a fourth moment: centring dementia experiences, as shaped and constrained by broader sociopolitical systems, discourses and life events.

      The aim of this book has been to broaden the dementia debate by outlining an approach that can take understanding and practice into this fourth moment. It...