‘Be kind and patient, for I have lost the best of me’, so reads a poem on the walls of a care home that looks after residents with dementia. This trope of loss shapes the dominant global response to those experiencing dementia. Here dementia is nothing but a deficit state with all that is valuable left behind in the past. This book draws on our research with people with dementia and their close networks to challenge this vision of loss and to develop a different way of understanding dementia, drawing on posthuman ideas. Rather than positioning them in an educational wasteland, we see people with dementia both as learners and teachers and dementia as an essential but neglected part of lifelong learning. The book will use a wide range of data throughout drawn from two research projects Beyond Words and Making Bridges with Music (MBWM), including longitudinal observations, arts workshops, interviews and focus groups.

Dementia is uniquely challenging because it undermines the certainty of identity, destabilising any sense that we know who and what we are as humans or can trust that knowledge as a bedrock of our existence. The virtue of posthuman ideas is that they can help to understand that we are all in a relationship with the world that is not dependent on fixed boundaries, voice, identity and rationality; that questions our limited view of what a ‘human’ is. In more clearly revealing these unfixed relationships with the world, people with dementia may be in the vanguard, potential leaders not losers. In this book we value them as they are and move beyond dementia as a deficit category.

JQ: And do you think in any way she is teaching you things?

Yeah, I mean you have got to start looking at things from a completely different perspective, so it has definitely helped me in ways of looking … and seeing different possibilities. (Helen, support care worker, interview)

It is such a ‘completely new perspective’ that we are fostering in this book, in order to develop more positive ways of understanding and approaching dementia. In this chapter we will explore how dementia is currently positioned as a ‘scourge’ and social problem and as a glaring absence in the lifelong learning agenda. In Chap. 2 we will discuss the posthuman ideas we have found most useful in rethinking dementia, and in Chaps. 3 and 4 we will put these ideas to work with our research studies to reveal the ways in which people with dementia can learn and teach. Finally, in Chap. 5 we will draw out a vision of participative lifelong learning for people with dementia and discuss its contribution to a sustainable world.

Dementia is an umbrella term for a range of conditions such as Alzheimer’s disease , vascular dementia or mixed dementia. It is a terminal consequence of brain degeneration and is characterised by memory loss or confusion in interpreting space and meaning, often with a gradual reduction in speech, and is often accompanied by depression, anxiety and isolation. As Ken, husband of one of our participants, says, it tends to be a gradual process of ‘plateau, dip, plateau dip, plateau dip … it’s surprising how far you go before you face the fact that there is a real issue here’. Dementia is not confined to the elderly; Allegranti (2013), for example, has conducted research with young people who have early onset dementia and their families. Nevertheless, with an ageing population, dementia is most likely to set in in advanced old age, once people have survived other life threats: so that one in six people over eighty in the UK now gets dementia. It is one of the most challenging social issues of our time.

If we don’t get a handle on it it’s going to be disastrous, it is a disaster now, it’s going to be a crisis …because there are so many people, so, so, many people. (Ken, interview)

The popular metaphors dementia conjures are ones of contagion, and devastation: ‘the scourge of our age’ (Bosely 2019, p. 53) or ‘the plague of our time’ (Gerrard 2019). There is a strong sense of punishment in the way that dementia is framed. Dementia is punishment for living too long, punishment for the hubris of cherishing personal identity and freedom. In Illness as Metaphor (1978, p. 1), Susan Sontag famously challenged such metaphorical thinking:

My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.

The punishment narrative of dementia has been naturalised, much like the metaphors attached to cancer and TB that Sontag discusses, and in order to rethink dementia we must abandon this landscape.

This is not easy to do. There are very few people who have not been touched by dementia. We can ourselves draw on past and present experience of supporting those with dementia within our close networks and this has not been comfortable or easy.

I watched as H gradually forgot many of the people who had been most important to her. I heard her panic and speak in a babble and leave the TV on a rolling programme of the shopping channel. Now J is also in a nursing home for her own safety. She still looks up into the blue and exclaims ‘look at that sky!’ (JQ diary)

There are some hopeful signs that the loss narrative is being contested. One of the objectives of the UK interdisciplinary programme Created out of Mind (2018) was to explore and contest assumptions about dementia through a range of measures including analysis of media discourse and opportunities to communicate with people with dementia via digital media. Zeilig et al. (2018) outline how this programme produced opportunities for ‘co-creativity’ that challenge the dominant biomedical and social paradigms that associate ‘dementia’ with irretrievable loss and decline. In a sociological context, Jenkins (2014) critiques the person-centred interventions that make up the current landscape of dementia care, which seek to ‘revive or repair a hitherto ‘broken’ self’ (Jenkins 2014, p. 7). Jenkins, on the other hand, demonstrates how people with dementia in Scotland have rejected the idea that they currently have no agency or selfhood and have formed their own campaigning groups where interacting with others can enable individuals to create a ‘third self’ beyond the self of the past or the self of dementia. As Kontos discusses, a diagnosis of Alzheimer’s disease is habitually met with horror because it has connoted a loss of ‘the self’ and an entry into what has been termed ‘social death’. Her own ethnographic research in a care home for people with Alzheimer’s in Canada has led her to claim another form of selfhood for people with dementia: ‘they interacted meaningfully with the world through activity and engagement rather than contemplation or reflection … selfhood is embodied’ (2004, p. 831). She provides a rich picture of their embodied lives and the pleasures and reciprocal moments therein, which includes dancing, singing, socialising and caring.

However, all these researchers still speak in terms of ‘self’, albeit a self that is differently constituted. As we shall discuss in Chap. 2, in this book we use posthuman ideas to move beyond notions of the self and see people with dementia in terms of ‘agentic assemblages’ (Bennett 2010) and ‘intra-activity’ (Barad 2007).

The prevalence of dementia is a global health issue. Frightening statistics abound. According ...