Dementia care has three obvious priorities:
Timely diagnosis
Social care reform
Accessing everything fairly
Every bit of this has to be appropriate for the person anticipating the diagnosis. The person, and invariably those closest, has to be prepared for the diagnosis, and needs to be supported throughout the ‘dementia journey’. Dementia is much feared amongst the adult population. Medical treatments thus far have been underwhelming. Social care has become progressively worse, especially in the last decade.
The person anticipating the diagnosis has a past, present and future. The person needs to be in a place and space of personal contentment, and that person’s identity matters. The sociological construct of ‘personhood’ has been applied to person-centred care. It would be wrong however to over-operationalise a person centred approach into managerial checklists and targets. That defeats the ethos of personhood as originally envisaged by English philosophers at least.
The dementia field moved away from the term ‘early diagnosis’. This was because at one extreme it was a bit extremist. For example, dementias which had a relatively simple genetic basis could in theory be diagnosed in the womb. The person-centred ‘timely diagnosis’ is the first step in a long process which the person with dementia will face. Having lost my mum eventually with dementia after six years, I’ve been through every bit of that process. The average length of time of survival for dementia is about seven years. That’s why it’s not wrong to consider dementia in the palliative or end-of-life domains, and we know that for all the talk of a ‘good death’, both the NHS and social care and under-workforced and over-stretched.
Dealing with the workforce shortage is a key priority for the new government, whoever that is. Social care reform is likely to take place within the schema of integrated health and care systems. That’s why it is a good idea for every operational leader in such a local system has a clear strategy for implementing a dementia diagnosis and care strategy. A lot of things can pop up, such as a world viral pandemic or Brexit for example. That is the direction of travel, however. More irritating are the self imposed market failures of a privatised social care system, where people sometimes can’t afford care. All care is essential, and none of it is basic. Providers going out of business at the drop of the hat are no way to run a healthcare system where people affected by dementia are so dependent.
The world of dementia is overwhelming, especially for the large army of unpaid family carers. At one end, there seems to be the world of Pharma whose success in profitability is determined by their success in getting effective drugs. Some of drugs have a minimal effect in symptom control early and late on, for thinking and behaviour respectively. It’s a given that all drugs should be safe. We cannot allow any of them actually to cause accelerated decline, whatever pressures. Bear in mind that a ‘cure for dementia’ was originally called for by the G7 dementia in 2014, by 2025. Beth Britton was there, who’d seen dementia up close and personal with her father. She has for a long time advocated for the rights of people with dementia. She has been a fellow traveller on this traumatic journey, punctuated by ‘new normals’, new expectations, new promised ‘breaktthroughs’, and so on; but we have become experts by experience in learning from failure.
When I first received mum’s diagnosis of dementia, a lot suddenly made sense. The organisation of her personal affairs had become shambolic, and her self care had deteriorated. This was well within retaining legal mental capacity, which she retained for a large proportion of her dementia journey. Just before she received her diagnosis, which was signposted by a hospital admission for delirium (like so many), I had had thoughts of organising some befriending with the help of a local charity. This befriending didn’t eventually work, as mum didn’t feel comfortable with strangers looking as if they were invading her personal space. Also, the Bengali befriender didn’t look interested in mum at all; and spoke an entirely different dialect of Bangladeshi.
Jeremy Hunt is about to deliver an autumn statement, where ‘work shy’ individuals might get punished, or there might be inheritance tax cuts for the very rich. This will be small potato for those who have lived through the decimation of social care in recent years through a panoplie of health and social care secretaries of state. The NHS workforce is largely currently demoralised and over-stretched, so things could be better.
None of the care, some of which might become quite intimate because of the care recipient being doubly incontinent, unable to prepare meals, or eat or drink safely, and so on, can take place without a diagnosis. There is a ‘gold standard’ of making this diagnosis which is time consuming, costly and bulky to implement nationally. In the same way a person who has a clot in his lung or someone who has a blockage in his heart first have a blood test and then detailed sophisticated neuroimaging, we really do need to begin the journey to do research into picking up cases of dementia through a simple blood test akin to a troponin blood test. Dementia in the older person tends to have complex multiple causes, present in a ‘mixed dementia’ sort of way, but that is not a reason why we should avoid research altogether. This is an urgent practical issue for the NHS as it fits into the wider strategic goals of entities such as NHS England. Every person who actually has dementia who has never received a formal diagnosis is a tragedy. Arguably anyone who has received a diagnosis of dementia when he or she does not actually have dementia is a tragedy of a different flavour. Specialists in the neuropsychopharmacological field are capable of working together for the common good, but there is corporate capture and the issue of the power of vested interests. Like politicians, they need not to overclaim and underdeliver, but medical research is so much needed. Dementia research has historically lagged behind other fields such as cancer. This, coupled with institutional ageism and othering of people with dementia as an ‘abject other’, is a remarkable ‘red flag’.
The reform for social care is long overdue, and will undoubtedly not surface in this week’s autumn statement. There needs to be a social workforce plan to begin with. I think it’s really important that there is ‘buy in’, a culture of wanting change from the general public. This to me is obvious as there are literally friends and family of persons with dementia who are put off the cost of care. This has been exacerbated as a big problem in the ‘cost of living’ crisis. I remember when I’d be counting the pennies when thinking about the cost of carers privately, just prior to the official dementia crisis. What happened was I was totally overwhelmed by the pace and extent of change to ‘new normals’ every day. At first, I was very upset at minor thinking changes in mum, but when huge changes eventually happened, like mum not recognising me, I was shocked but not especially surprised.
For me, then, dementia care has three obvious priorities:
Timely diagnosis
Social care reform
Accessing everything fairly
We’ve been going round and round in circles. None of this is new. This has been the agenda for at least a decade. Meanwhile, there are undeniable facts. Unpaid family carers cannot cope on their own. They should not be expected to cope on their own. And yet too many are having to have to.
Dementia is a life-changing general medical and psychiatric diagnosis like no other. It is treated with equal reverence and caution from our colleagues in public health and population sciences. It is the biggest killer in England and Wales, according to the Office for National Statistics, and, in my opinion and experience with my own mum, it desperately needs a response to match.
Shibley Rahman
@dr_shibley London, 19 November 2023
Dr Shibley Rahman blog 