In passing yesterday, Alison Cameron in her “EdgeTalks” presentation mentioned across a few sentences that we, as individuals, do not possess all of the picture.
In the same way it has become very easy to let the words ‘no decision about me without me’ trip off the tongue, without necessarily thinking whether people are walking the walk as well as talking the talk, there has been relatively little said about the meaning of the ‘lived experience’.
How dementia actually shapes one’s life is impossible to understand from the perspective like me not living with dementia. The part of the picture a neuropharmacologist might paint is how dementia is fundamentally a chemical balance, but with the right drugs some of the symptoms ‘might go away’. Or it could be a neurobiologist’s view of alien plaques clogging the brain, which somehow need to be removed.
Like working out you’re handling an elephant, while wearing a blindfold, and only touching its tail or trunk, we only can make deductions as good as the information we’re given. A purely neurochemical or neurobiological won’t be able to give a coherent account of a person with dementia relational links to the outside social, economic, political, legal or technological world.
But I feel the story begins with what happens when a person is given a diagnosis of probable dementia; and ideally that person is not saddled with that news in isolation. Despite all the best will in the world about engaging and empowering people, the media continue to use headlines such as ‘Dementia victims getting younger’ as appeared in the Times only the day before yesterday.
It is intriguing the degree of disruption that a dementia has for people – whether they will notice a defining event in their autobiography when the possibility of dementia became a very serious one. Compare this, for example, to an acute onset of psychosis in first-episode schizophrenia.
One is all too aware that the autobiographical disruption of the diagnosis of dementia is often signposted by the cack-handed way in which the medical profession can impart the diagnosis. Some of the descriptions of the diagnosis disclosure are truly terrifying.
I don’t think it’s possible to be glib about ‘lived experiences’. At first it might seem a bit melodramatic for regular speakers at dementia conferences to give up a place for a person living with dementia, as indeed the Dementia Alliance International suggested recently, but this indeed is to focus one on a number of important issues. But it is also true to say that there are some people without dementia who know a lot about other aspects of dementia too.
I have previously brought up the notion of who owns and controls policy in dementia; often this can usefully discussed in conjunction with who stands to benefit from policy in dementia. If I’m being blunt, I think the only way to reframe the narrative on policy, so some of the 47 million in the world living with dementia can stand to gain, is to allow people with dementia to lead on policy. This is not tokenistic engagement; but true leadership.
Secondly, I don’t think it’s wise to discount the medicine altogether; but only that this colonisation of the narrative by medicine, perhaps accentuating the power of the cure, has to be either resisted or justified in some narrative analysis. We’ve come a long way in the consumer-survivor-ex patient movement, an idea which promotes recovery.
Recovery is an extremely potent weapon in dementia, if you forgive me for yet another military metaphor in discussing dementia. Whatever challenge to the mind one encounters, recovery represents a unique individual reaction to that challenge, which draws positive for what you can do knowing what you can’t do. This is a comforting paradox, but does not rely on ‘cure’.
But above all I think the power of personal narratives is that it allows people with their own personal stories to tell to contribute them to the benefit of the rest of society. I think of these stories being brought into the public arena, so people can offer feedback on them. There might be, for example, common strands in many of the stories, offering real scope for peer-peer support. Or there may be some personal narratives which just seem ‘odd’, which may need to be re-articulated with collective help.
This is to bring the ‘purpose’ of narratives into the domain of Habermas’ theory of communicative action, and lifeworld, but the details I think are unimportant. But what I think IS important is not fixating on the medicine, at the expense of a social model of disability. What I think is crucial is giving people hope, and not consigned to an early social death from a diagnosis of dementia.