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...

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...

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...

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...

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...

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...

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...