Neil Crowther: Escaping the doom loop

The photo above shows the author’s parents, while his father was living with dementia, enjoying the park.

Over the past few years I’ve been involved in various pieces of work concerning discourse and framing around ageing and older people, social care, disability and dementia. What I’ve observed is how these interconnected areas are stuck together in a ‘doom loop’, with unproductive narratives frustrating progressive change.  Breaking out of this doom loop demands acknowledgment that no issue is an island, with coordinated action across different actors to intentionally try to change narratives and the thinking and actions that they shape.

In work I contributed to with Equally Ours and Savanta ComRes for the Centre for Ageing Better, it was identified that ageing was overwhelmingly depicted and understood as a process of inevitable deterioration and decline.  Relatedly, the public story of ageing is largely one of health and care.  As a consequence our ageing society is not framed as a success or opportunity, but as growing cost and a threat, with metaphors such as the ‘demographic timebomb’ or ‘silver Tsunami’ commonplace.  Counter-narratives of ‘positive’, ‘active’ or ‘healthy’ ageing have emerged, but are problematic in that they confirm rather than challenge the dominant idea that ageing or of living with a disability or health condition is intrinsically negative.

In the work I lead for the movement #SocialCareFuture, we worked with the Centre for Corpus Approaches to Social Sciences at Lancaster University to map media discourse on social care, and with the Frameworks Institute, Equally Ours and Survation to understand public thinking.  We found that social care was overwhelmingly associated with older people and ageing, and in turn with the idea of deterioration and decline, and in particular with dementia.  When asked why we need social care, a common response from the public was ‘to look after vulnerable people who can’t look after themselves’.  Requiring care was understood to mean that a person lacks agency or the potential to lead an independent life.  There was little sense of social care as something that supported people to do so.  It too was seen as a growing cost that needed to be contained, not as an investment.

What I observe about dominant messaging and narratives on dementia is that they feed these narratives.  A diagnosis of dementia is cast as life-ending, not life-changing. People’s experience of dementia is framed almost entirely medically, as a process of linear decline and only in terms of deficit.  There seems little scope for and some active hostility to the idea that anyone might ‘live well’ with the condition, or that society might be reorganised to make that possible for more people.  Moreover, dementia is proactively framed by charities as a growing burden to society, very often by projecting the growing cost of ‘caring for’ people with dementia into the future as a way to make a more urgent case for investment in medical research to find treatments or a ‘cure’.  This narrative inevitably devalues  care and support, making it seem undesirable, yet these same campaigners often simultaneously express frustration that successive governments have failed to command the political support to adequately invest in social care to support people living with dementia.

Changing the narrative on dementia is not about producing fairy tales.  My father lived and died with Alzheimer’s.  I have seen the effect it had on him, on my mum and on myself.  Finding treatments, or even a way to prevent the disease or other forms of dementia is a just cause that deserves investment.  That demands a persuasive narrative.  But given how far away we are from such a medical breakthrough, I cannot accept that it justifies deploying a narrative that causes harm to those living with dementia now and those with whom they share their lives.  These lives aren’t ‘devastated by dementia’ the disease but crucially by having so often to struggle alone without support while enduring stigma and exclusion.  Moreover, as we saw this year with the arrival of Lecanemab, the propensity to vastly exaggerate the potential of each important, but very modest breakthrough seems limitless.  This too causes harm, raising and then dashing people’s hopes.

In my view, an effective, authentic narrative about living with dementia has to reveal how our experience of dementia is mediated not solely by the underlying disease or condition, but by the context in which we live our lives.  It needs to avoid polarising medicine on one side and ‘care’ on the other, and instead frame developments both in treatments and in measures to promote social inclusion as part of a shared enterprise of promoting wellbeing.  This is particularly important given that the potential medicines coming downstream are ameliorative, not curative.  They are part of supporting people to live better lives with dementia.  They will not relieve the world of dementia.  To be believable it also has to reveal the potential and possibility to positively change people’s experience of living with dementia, most powerfully through the voices of people living with dementia themselves and those with who they share their lives. This is how we can simultaneously build the case for investment and reform of the public services people so desperately need, challenge the stigma and exclusion that holds back the lives of people living with dementia, and win the case for research into medical treatments and interventions.  And by doing so, we can also help to unpick the ageism, ablism, paternalism and narratives of scarcity and impending disaster that are cumulatively undermining our ability to transition to a society that reflects our modern demography and which permits us all to reap the dividend of our longer lives together.