I am currently in Switzerland for a meeting headlined as a symposium on the ‘clinical, sociological and cultural dimensions of frailty: an interdisciplinary approach’ from the centre for ageing and the life course at the University of Liverpool. The details are here.
A number of us are staying over at the retreat, the Foundation Brocher in Hermance. It is literally that – no radio, no TV, quiet rooms for reflecting and studying. It is a rich learning environment of people interested in the ageing space, including gerontologists, medics, sociologists, anthropologists, to name but a few. It is a discussion which reflects what has been an emerging theme for this symposium: complexity. The discussions have emerged as rather boundaryless, sometimes non-linear, uncertain, and, yes, very complex. This has got me thinking about a central theme of my life, dementia.
For the last few years, we’ve been ‘doing binary’ – Brexit or not, supporter of one country or not, and so on. That is probably not doing justice to complex topics. Dementia is one such topic, and its problem is that it is the most feared condition in adulthood. There’s a number of interesting observations regarding public attitudes. The vast majority of people (89%), i.e. nearly 9 out of 10, would be likely to seek a formal diagnosis if they were concerned they might be in the early stages of Alzheimer’s disease or another form of dementia. This is totally unsurprising as it is the leading cause of death in the UK.
So, let’s knock on the head one first bit of misinformation – it is NOT a predictive test to see if you’ll get dementia in 40 years’ time. We are not talking about that. So stop it. Stop filling the valuable air space with rubbish tedious misinformation.
It is about seeking a diagnosis. The age old trope has returned after ten years, “so what’s the point?”. Allied to this question is the more substantial question, “Why do carers care?” There is something possibly quite abject about dementia care, and that it is clearly not a cinderella arena. It has tended to attract workers, often migrant workers, who have worked under tough conditions, such as poor housing and transport. This is a reason to acknowledge and tackle social inequalities, not to dustbin the entire subject.
A formal diagnosis is surely important. It’s important to know what symptoms are not due to. Dementia is not just about memory problems, but it is not normal ageing either. If you have memory problems, it makes a difference to know that this is not due to dementia. A dementia diagnosis is a life changing diagnosis. Once you’ve announced it on Twitter or published books on it, it’s hard to ‘unwind’ it – but it is important. At the moment, subjective memory complaints not due to dementia is a known issue, and we do need to invest in the proper infrastructure to deal with it.
A lot of focus inevitably has been on the new drugs. I sat in fact next door to the late Dr César Milstein at Cambridge who invented the monoclonal antibody technology. A nice man, who was fond of lettuce. I can visualise his pleasant smile now. We spent most of the time talking about South America. But there are other drugs which have a modest effect on symptoms, not underlying disease. Believe me, as a carer for my late mum, even a very very small improvement in symptoms (including in the attentional domain) could make life infinitely easier for the paid carers. It would be enough to make it possible to do some intimate bit of personal care, or to get mum’s attention during mealtimes. Behavioural outbursts are important to treat, as the behavioural problems can make life hell in latter stages of dementia for both a person with dementia and carer. And again, even a very small improvement can help there. I will be criticised if I don’t mention ARIA, the very severe if not life threatening side effect of the newer drugs for a small % of people who’ve had the drug – or the possibility of brain structural decline. I am not trying to minimise these aspects by saying all drugs have side effects, but as with the rest of medicine we need to ensure all trained physicians and psychiatrists stick rigidly to informed consent and there is no coercion. And all drugs have serious side effects including the ones I am on to treat respiratory and ophthalmological illnesses of mine.
No diagnosis in life is 100% – but there are certainly two things I would do if I received a diagnosis of dementia after formal inquiry. Firstly, I would update a will. Secondly, I would put in an application of lasting power of attorney – obviously before I lost legal mental capacity. These are relatively straight forward to do – a lasting power of attorney is infinitely easier than a guardianship application which is complex and costly for people who’ve lost capacity. I agree the phrase ‘get your life in order’ sounds unhelpful, but it is important to get everything ready. One of the things I had to learn fast in 2016 when it was clear to me that mum was progressing with early stages of dementia, and getting worse, is that I had to know what bills she paid, where, and why, and where her bank accounts were and so on. A lasting power of attorney for health gets a lot of buy-in from a GP and shared decision making becomes increasingly important when you’re trying to help your mum – with a terminal condition, but with whom you queued in the supermarket, or with whom you went to school.
I remember in the early days how I would keep the costs down, and do as much of the caring myself. But the caring requirements became more and more colossal over a number of years. Other carers tell me how they identify one more thing mum can’t do as from today. Everything becomes a new normal. I think a progressive dementia correctly diagnosed leads to more and more care demands, and it’s hard to see how this will be catered for unless NHS continuing healthcare is opened up entirely. The needs are across all domains, and all of us really need all the help we can get. Time is not on our side. A dementia can happen fast, and precisely because you don’t know how long a dementia will take you can’t properly plan for it. But some people have had to sell their houses to make by.
Investing in the infrastructure to produce a formal diagnosis, and for training professionals to impart it properly, will take time. Developing a test for dementia is a really useful first step, and the NHS would offer it free at the point of need. It really is impossible to avoid what happens thereafter. A person with dementia with progressive disease will eventually need to be cared for, whatever it costs. But from all I’ve heard so far the drama over the novel medical treatments is not enough to negate the need to get a diagnosis at all – and the novel treatments are still in development.
Back in Switzerland, we are having a discussion about ‘third age’ and ‘fourth age’. Probably most of us will have a long retirement phase, not all though. Anything can happen to anyone at any time. There may emerge a notion of the ‘undeserving unwell’, similar to the ‘undeserving poor’, where a new cohort of people get worse with a condition than they would have done because they have declined medical treatment. That I think would be a tragedy as an over-reach of medicalisation. Also if we ever get into the trope that ‘dementia is a lifestyle choice’ I will have become really fed up. But already the advice about prevention and risk reduction in dementia is creeping towards ‘you didn’t eat well enough’ or ‘you didn’t enough Sudoko puzzles to preserve your brain health.’ Insurance lawyers, of course, love to make an insurance contract voidable if you breached it in some way, for example not telling the insurer about your weekly Deliveroo take-away order for something a bit naughty. But these are debates for yet another day. Even if you don’t want to know a diagnosis of dementia, that in itself won’t make the dementia go away. And you’re still the same person as you were yesterday if yesterday was the day that you received your dementia diagnosis.
Dr Shibley Rahman blog 