Making rights make sense
Thoughts on this and that – by Neil Crowther.
Despair versus hope
In Rethinking Dementia, Tom Kitwood makes a point that is both obvious and deeply challenging: noone, he says, has ever ‘come back from’ (late stage) dementia to tell us what it was like for them. Hence, everything we think about what it means to live with late-stage dementia, and what can influence people’s experience of living with late stage dementia, is based on the observations and conclusions of people who either don’t have dementia, including Kitwood himself, or who have yet to reach this stage. As a result, narratives of late-stage dementia are dominated by medical professionals, including psychiatrists, family carers and charities *for* people with dementia and their families. And given those people have historically held the narrative power when it comes to the overall story of dementia, this tends to still dominate how it is characterised and understood in our society.
Over the past twenty years, the voices of people who are themselves living with dementia have grown in number and influence in the UK and internationally. They often do not include people with late-stage dementia, and so cannot speak of that experience. They can and do however speak powerfully of what it is like to live with a diagnosis of dementia, of the progress of the disease, of how they have adapted their life, and crucially, of the experience of living with dementia in our societies and how those societies could change to improve that experience. One person, Wendy Mitchell, has written two best-selling books about her experience.
Some of these people and the organisations they belong to draw on theory and law developed in the sphere of disability rights to do so, identifying and calling for the removal of ‘disabling barriers’, including stigma, stereotypes and prejudicial thinking about people living with dementia. They do not deny the existence or potentially devastating impact of the disease, but they do point out that there are ways of being and doing that can permit people with dementia to live better lives with the condition. They regard doing so as a way to build support for the social change and investment that could see more people with dementia doing so, which has failed to materialise in response to the relentlessly despairing narrative promoted by those who have historically dominated it. They also do so out of compassion for others who are diagnosed with dementia and their families, because they know the fear people face and how harmful and life limiting that fear can be, causing people to avoidably give up living their lives to the full, in ways that can accelerate declining health. They aim to give people a sense of hope, set against the overwhelmingly bleak narrative that dominates, not to deceive people about what lies ahead, but to ensure people make the most they can of life on the journey there.
And as they have grown in influence and that influence is translating into demands for policy and cultural change, they are being attacked by people who have historically dominated the narrative, as generating falsehoods, or worse still, as being fraudulent. One prominent old age psychiatrist and academic, Professor Robert Howard, has written in the Lancet and also frequently claims on social media that people with dementia who claim it is possible to live well with the disease have likely been misdiagnosed, and don’t *really* have dementia. For him, dementia can only be synonymous with suffering and anyone who claims otherwise is being offensive to people who really do have dementia and their families. He took particular offence at comments made by Wendy Mitchell that living with dementia had brought new insights and experiences that she would not otherwise have had, including a new capacity to live in the now, which she has described as ‘a gift.’
His tweets are liked and shared by family carers, evidently traumatised by what they have observed of a loved one’s experience of dementia.
To come back to Tom Kitwood’s point, no one, as yet, is able to describe what it is like to live with late-stage dementia. All people can do is report their own observations of those that do or have. But people living with a diagnosis of dementia can describe, good or bad, what it is like to live with dementia, their experience of the disease, of living with the disease in our society, of health and care systems, of diagnosis, of social attitudes and stigma. They can offer insights and ideas to other people living with dementia about ways to live well and to system leaders and policy makers about how to make things work better. They can say, if they wish, that living with dementia has brought new, valuable insights, friends and life experiences that they regard as a gift, even knowing that the disease will progress and make their life harder. And they can describe themselves as suffering from the disease, or from living in a society that excludes people living with the disease, if they wish too.
And given it is about their life and their future, they can try to make hope possible, rather than despair convincing, which appears to be what some people find most challenging of all.
