I like many think that it’s a travesty that certain people become bankrupted through looking after a loved one with dementia – seeing life savings evaporate as care needs become progressively more intense. The aspiration of care ‘closer to home’ is simply impossible at the moment, unless you have funding or a care provider who can take on a new package. Relatively few people become eligible for financial assistance. I know personally I would have not survived had my late mum not received help from NHS continuing healthcare, which was perfect for her with advancing frailty and dementia.
Whatever your current political affiliation, it is hard to deny that the Conservatives are about as popular as bad breath. Boris Johnson, to remind you as the Prime Minister preceding Liz Truss and Rishi Sunak, promised to reform social care – and he never did. He promised to get Brexit done – and the rest is history. Social care is politically toxic, and understandably Labour doesn’t want to talk about it much. Nonetheless it looms large in the in-tray of the incoming government whenever that should be, in 2024 or latest 2025.
I don’t quite see myself as a dementia campaigner, in much the same way that I never saw myself as a carer. I always viewed my caring for my mum, throughout her torrid journey with dementia and other conditions, as a social contract between me and her, more akin as a feature of my duty of care to her as her son. I am lucky in that I was in love with my mother. That parental bond is not a given for all by any means. I always saw myself as a dutiful son, rather than a carer. I reluctantly made myself familiar with the benefits of the Care Act (2014), of which there were many including a care plan and a personal care budget. I was also introduced to the attendance allowance through Camden Carers. It turned out that benefits were necessary to sort out exemptions from council tax on grounds of a ‘specific mental impairment’. I coordinated mum’s care almost on a daily basis, including those highly stressful hospital admissions. I found my experience with mum stretching the boundaries of my knowledge of dementia, even though I did the prestigious job in dementia and cognitive disorders on the professorial firm at the National Hospital for Neurology and Neurosurgery in 2003, having passed my PhD with no corrections from Cambridge two years previously in the diagnosis of the behavioural variant of frontotemporal dementia.
I was able to liaise with an excellent GP when it came to medical emergencies for mum and their ensuing hospital admissions. I listened carefully to the recent Demos session on the future of adult social care. I must say that I thought that Andrew Gwynne MP was excellent, and gives me exactly the same sort of confidence as Andy Burnham whom I got to know very well in around 2014/5 while many of us advocated for whole person care for a Labour government to be elected in 2015. That never happened. It was also a campaign of Labour at the time to reduce the delayed transfers of care from the NHS to social care. We possibly havre to learn from the example of the ‘Better Care Funding’ to review how Governments have used money meant for social care has been subsumed by the NHS in the past. But I believe like Andrew Gwynne MP strongly that the function of social care is not simply to bail out the NHS from pressures on beds and so on. It has a fundamental duty to enable and protect, and as Anna Severwright put it so elegantly to allow people to flourish in their lives maximally and form connections with others. The ‘social care future‘ vision outlined by Anna is very much people-focused rather than the tasks of caring, feeding, dressing, and so on. That focus on tasks has pervaded to the perceived purpose of regulation, to regulate competence in tasks. Social Care Future is exactly the sort of pioneering initiative which should be endorsed through an incoming Labour government.
But social care is so much more than this. The problem with the proposition of the National Care Service is that it irons out organic bottom-up specification of the care and support offering, potentially, and people might see it through the NHS prism.
But I do believe like Richard Humphries that the buy-in for a national social care service, and a renewed social contract for social care, is the first step. It is not worth putting off people with the intricacies of funding, though that will inevitably have to be dealt with early on. Kicked into the long grass for no reason by the current Tory administration are the Dilnot proposals. I think the social care workforce, in a parlous state regarding recruitment and retention, if not worse, has to be tackled indeed early on. And progress is already being made there, which simply has not happened in more than a decade of a Tory government. Unison for example has made in-roads with the fair pay agreements, and the Fabian Society has made an initial exploration of these agreements in the context of a proposed National Care Service at the request of the Labour Party even though the Labour Party has yet to expand on the possibilities of this debate.
All this takes dementia policy under a Labour government accepting the premise of the integrated care systems, enacted under law anyway last year. I think it is not only individuals with dementia who should be at the heart of trashing out policy in dementia, and delirium, but also carers. The known issue with showcasing people diagnosed with dementia is that some of them don’t have dementia, don’t progress, and indeed while have a lot to say on the diagnosis don’t have much to say about the use of services in a way you’d expect if a dementia were progressing over six-ten years. The father of co-production, Prof Edgar Cahn, always likened co-production to a roadmap where it is important to have ALL of the map. This is analogous to having everyone in the room, when decisions are made. As Andrew Gwynne reminded me in the Demos session, ‘nothing about us without us’ taken from the disability movement. Asking people who know about how care and support is organised, and I too reject the term ‘service users’, is important. I agree with the APPG dementia that having a local ICS strategy co-designed and co-produced by people affected by dementia and delirium will really help.
Andrew Gwynne MP, I feel, is right to point out that historically that much of the budget has been in acute hospitals. Sure, there is a lot that is medical which is important, such the medications which give modest symptomatic treatment. But there is also invaluable advice about other things such as lasting power of attorney, without which it is impossible to take over responsible financial decisions. Nobody seems to be there to teach you all this. The move to the community never happened successfully, meaning that cuts were made to the hospital and the community. For me, delirium is THE acute medical emergency for dementia, and the specialty needs to have a very robust discussion about more acute care being done and driven by the community. Delirium can be managed at home, and we should be learning about how this is best done. For me, I welcomed hospital admissions as it provided me with much needed respite from the 24/7 intense job of ‘caring’ – but respite should be an offering in place anyway. I believe that carers aren’t offered enough the chance to take residential respite care, where a care recipient with advanced dementia enters temporarily residential care to give unpaid family carers a rest. None of the care pathway for dementia can happen unless an initial diagnosis of dementia is made, but that is only a small part of the journey for me. There are huge inequities in diagnosis in England for dementia, discussed by the APPG in their latest report.
As the dementia journey becomes more and more care, it’s especially important that we don’t view “care” as a dirty word. Support to live well is important with technology – but I personally feel that the case for this has been overstated at the expense of investment in the workforce. The reason care becomes more significant is partly because the medical needs for dementia become increasingly more medical too, for example help in mobility, swallowing, cognitive and behavioural symptoms, feeding, skin care, and so on. But even despite of this, it is essential not to lose sight of the fact that the person with dementia (and invariably other conditions) has been somebody else’s child, mother, father, brother or sister, or whatever. And he or she had dreams and ambitions of his or her own, and probably still does.
For me, I’d like to campaign on dementia. The solution is not shiny new products. Indeed, I have never seen a clinical diagnosis of dementia to have been made on a single scan, apart from one. That was a patient who had a very rare iron disorder, called a neuroferritinopathy, and there was a classical ‘eye of the tiger’ imaging sign. But the patient had cognitive changes. Unless you follow up patients, you don’t know if they have any cognitive decline. If there’s absolutely no decline after very many years, most reasonable clinicians would want to review the details – if only because that is for the benefit of a patient who otherwise might have been misdiagnosed.
I would love to be a dementia campaigner. This is of no surprise of course, given I have done a PhD in it twenty years ago, and written a number of popular books on it. I have also published peer-review papers. But it is my lived experience, and the love for my mum, which means I feel it is my duty to join a local patient participation group or local clinical or research network, at the very least, to make sure dementia is a priority. It is very easy to get carried away with important aspects to do with population medicine, include data sharing. I think this is incredibly important. But the state of person-centred care for dementia is fundamentally pretty bad at the moment. I knew a lot about it already, but more importantly I came to see it with my own eyes. Having thought about dementia seriously since 1996, I am determined to do something about it at last.
Dr Shibley Rahman blog 