Dementia is an umbrella term for a range of conditions such as
Alzheimerās 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 āplateau, dip, plateau dip, plateau dip ā¦ itās surprising how far you go before you face the fact that there is a real issue hereā. 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 donāt get a handle on it itās going to be disastrous, it is a disaster now, itās going to be a crisis ā¦because there are so many people, so, so, many people. (Ken, interview)
The popular metaphors
dementia conjures are ones of contagion, and devastation: āthe scourge of our ageā (Bosely
2019, p. 53) or āthe plague of our
timeā (
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 illnessāand the healthiest way of being illāis one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up oneās 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 ālook at that sky!ā (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 ā
co-creativityā that challenge the dominant biomedical and social paradigms that associate ādementiaā 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 ārevive or repair a hitherto ābrokenā
selfā (
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 āthird selfā beyond the self of the
past or the self of dementia. As
Kontos discusses, a diagnosis of
Alzheimerās disease
is habitually met with horror because it has connoted a loss of āthe selfā and an entry into what has been termed āsocial deathā. Her own ethnographic research in a care home for people with Alzheimerās in Canada has led her to claim another form of selfhood for people with dementia: āthey interacted meaningfully with the world through activity and engagement rather than contemplation or reflection ā¦ selfhood is
embodiedā (
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.