I do often think about whether dementia campaigning, including in policy terms, is going round and round in circles. I first started attending international conferences nearly a decade ago, and since then there’s been a global pandemic and my mum has lived well, been cared for with, and died with dementia. The messaging of ‘dementia’ has evolved, thankfully, in the decade or so since the onset of the Prime Minister Dementia Challenge. To remind you, David Cameron wanted to galvanise hope in finding a cure for this dreadful condition. The pendulum swung to ‘living well with dementia’, and a policy was built around that here in the UK.
The last big UK national dementia strategy was published in 2009. This made a case for an information campaign to explain dementia in bite size chunks. It also coincided with an incoming Tory Liberal Democrat coalition. It was totally unclear to me how the Alzheimer’s Society and Public Health England had secured the substantial funding for ‘Dementia Friends’, although there are articles still on the internet how the Government secured the involvement of marketing agencies and some of the actors involved in the evolution of this programme.
I remember being at the Alzheimer’s Society annual conference less than a decade ago at the Kia, Oval. Jeremy Hunt, the then secretary of state for health, almost had global superstar status when introduced by Jeremy Hughes, the then CEO of the Alzheimer’s Society. Hunt was to oversee a huge reduction in funding, relative to population, for social care. The Labour opposition proposed in 2014 ‘whole person care’ as a mechanism for integrating health and social care, but Labour was rejected in 2015 in favour of a majority Conservative government which was able to push through a Brexit referendum. This Brexit decision, along with cover provided by the global pandemic, led to devastating reductions in the health and social care workforce. The political ideology remained ‘small state’. The search for a ‘cure for dementia’ by 2025 continued, heavily promoted by organisations such as the World Dementia Council. Substantial progress has been made, but there is no effective disease modifying treatment without potentially life limiting severe side effects. These drugs, monoclonal antibodies, need monitoring, difficult to sustain in a cash-strapped health service. Cometh the pandemic, the ‘Dementia Friends’, who could have had a really important part to play in helping socially isolated or lonely individuals with dementia, were nowhere to be seen. We had all called for some way of measuring the effectiveness of the behavioural change from ‘Dementia Friends’. Nobody listened to us. We kept on being told about the numbers of ‘Dementia Friends’, a number which was ultimately gamed by reducing the requirements to become a Dementia Friend and easing access to the materials online.
Dementia Friends was not an isolated UK phenomenon. It was actively promoted across a number of jurisdictions including Australia, with their own parlous state of social care, under a guise of ‘dementia friendly communities’. It was touted as being cost neutral, but clearly promoted as a business opportunity for a lucky few. A few things went wrong regarding dementia diagnosis in the UK. This was framed by some as being the fault of doctors as being unwilling to make a diagnosis. I remember going to conferences and being repeatedly told that GPs were the problem, and that patients know best. It is true, however, that policy has greatly benefitted from co-design and co-production in work streams. But it all boils down to a careful attention to who’s in the room for me.
A problem with the misdiagnoses of dementia is that there was an emphasis on shiny techy innovative gizmos for diagnosis. This has been actively promoted by all main political parties, as it provides corporate capture. The downside is that it didn’t really address resources being put aside to ups killing a GP workforce, already overworked and underfunded. This trend continues with the promises from Labour for the 2024 election, although in fairness to Labour, unlike the Conservatives, on offer is improved funding for the care sector and a National Care Service. But the fact that this care offering is unlikely to be ‘free at the point of use’ is likely to cause problems in terms of equity. We already know of people having to use their life savings to help fund the care of loved ones with dementia. We know that the recommendations from Sir Andrew Dilnot about the funding of social care have been parked for a decade now. The Conservatives have avoided successfully implementing plans for social care, and it was indeed one of Boris Johnson’s many ‘shovel ready’ projects.
We can of course see why, with so many billions spent on ‘getting Brexit done’ for example, why there is ‘no money left’ for dementia care. The reality is that somebody has got to do it. It has ended up being family members or friends who have given up paid employment to look after individuals with more advanced dementia. Not everyone is independent, ‘living well with dementia’. Some of the ‘personal care’ can be done by a person of any sex, e.g. feeding, cooking meals, changing the bed, but there is some personal care which is truly intimate especially in continence care. This can only be done using a diverse workforce with carers able to care closely their care recipients, for example matched for gender or religious beliefs. I was very lucky in that all of mum’s carers were Somalian muslims. While mum lost the ability to express herself, I know this would have mattered a great deal to her.
Kate Lee’s article was very helpful. The two groups ‘living well’ and ‘harsher realities’ need some qualification here. It’s possible to live well even with harsher realities – i.e. proper continence care for those who become incontinent, feeding for people who are at risk of swallowing difficulties, and so. But this requires expertise and a willingness to surrender to a ‘new normal’. This is possible if people aren’t worried about the ‘invoice’ for care – for example the funding criteria to receive NHS continuing care are deliberately too strict currently in implementation. Secondly, by presenting the ‘harsh reality’, I don’t think you’re denying hope. If anything, you’re doing the reverse. You’re stating facts as they are, that for some dementia will develop into an exhausting condition to care for, physically, emotionally and financially. It is important to forewarn people about this. A ‘life without dementia’ would be great, but we are nowhere near that goal yet and people currently affected by dementia need to be involved and have solutions now. Thirdly, I totally get the argument that dementia is ‘like’ the AIDS epidemic of before, as argued by Jeremy Hunt at the launch of the G9 Dementia Summit, but dementia can’t be successfully prevented or treated like HIV. The more sociological argument on AIDS as a metaphor is elegantly articulated, more so than Hunt in my opinion, in Susan Sontag’s eminent work. Fourthly I do appreciate that they say dementia is the most feared-condition in adulthood aside from cancer. But I do feel it’s utterly disingenuous to portray dementia as a land of milk and honey which will only progress if you lead a bad lifestyle, can’t ‘control’ it etc. That’s not to say that the ‘living well’ proponents are overall swinging the lead deliberately. But in terms of marketing a message, the message shouldn’t be mis-sold.
As someone who cared for my mum who lived well at all stages, mainly because of the heroic efforts of paid carers, I think the two are easily complementary. But back to co-design and co-production. It is true anecdotally that persons with early dementia have found people interrupting them, speaking over them, doing things for them, disempowering them. But it’s also true that ‘care’ has become a dirty word. It doesn’t even explicitly feature in the NHS Transformation Pathway for ‘living well’ – which is odd as it is a pathway which should also include domiciliary carers, social care, specialist nurses, and so on. Co-design and co-production only work if you observe one of the principal beliefs of Prof Edgar Cahn, a civil rights activist and one of the ‘fathers of co-production’. The ‘people in the room’, or more relevantly these days ‘present on a Zoom or Teams call’, should be people with direct or vicarious experience of all stages of dementia, with no inherent bias to professional advocates who’ve been there for many years. Some views are unpalatable, but thought diversity and resilience only come about if you’re prepared and how to listen compassionately to disruptive voices too. I felt Kate’s article hit the mark, and for many of us was long overdue in fact.