Dementia is a top priority, and needs a response to match

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

The diagnosis of dementia is useful in itself. That is half the battle.

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.

 

 

 

How I got to know my mum had dementia and why it matters to me

Probably as the most junior participant, as a volunteer, unpaid but still pretty enthusiastic, I received an email from the campaigns team of the Alzheimer’s Society. It was sent by Kath, a national influencing officer, and the team.

At the age of 49, I prefer not to be paid actually for anything or to become too committed in any way. This is because I can speak my mind. For all the noise about ‘dementia friendly communities’, a laudable aim in itself in proposing a cost-neutral way of improving lives for people with dementia through better NHS hospitals, schools, transport, and so on, for me it made no sense to campaign for this, but still silently endorse savage austerity cuts. It suited the Government to the ground for them to campaign for dementia to best served in the UK, and to launch an awareness campaign. But look at the facts. Around the world, the people who drove this were not the million ‘dementia friends’, amassed latterly online. The ‘dementia friends’ were largely nowhere to be seen in the devastating pandemic of 2019 onwards. This is especially a tragedy as many people face other people affected by dementia alone. This is due to a plethora of reasons, like never receiving funding for proper care, or never receiving a diagnosis in the first place.

I am happy to be an ultra small cog in the wheel. I have published many peer-review scientific papers on dementia (and its close relative delirium). And books. I did my Ph.D. in Cambridge in it. I have written books on it. I cared for my late mum at home for about six years from diagnosis to death with it. Please note there that anyone who received a diagnosis of dementia close to ten years ago would be expected by now to be showing significant cognitive or behavioural changes. There’s no sanitising the fact that dementia is a progressive condition. And it is emotionally, financially and physically exhausting as a carer. That’s not to say that people should be stripped of all hope. I found caring for my mum, along with paid carers from NHS continuing care, who were in reality all Somalian muslim women and family to me. It was the best of times and the worst of times. I never saw myself as a carer, only her son. I felt a 24/7 responsibility for her, which is unusual. It is also inadvisable in that I could never ‘switch off’. But I cared always for mum out of love. My medical knowledge helped me always to spot warning signs of her medically. I was able to refer her immediately to clinicians straight away or get her into hospital straight away.

Back in 2016, I knew something was wrong. The water bills were going through the roof, as she would leave the water tap on for her morning shower longer than for necessary. Then she had an episode of delirium, and her ability to manage herself went through the floor. I never had time to stop to think really that my mum was diagnosed with dementia. The hospital arranged for her diagnosis to be made straight away by memory clinic. That diagnosis, while ultimately devastating, was a pivotal life event. I was able to organise her lasting power of attorney – without which I could not have sorted out her bank accounts or managed with her accountant her property affairs. I was able to liaise with her GP, plan for her care, complete a carers’ assessment, get funding for her NHS care, explain to friends and family what she was going through (always preserving her dignity and the sense of her importance to me). She remains the most important person to me, quite simply as she gave birth to me and I have always felt filial piety to her within Indian culture. The organisation of care, including night care, dressing, feeding during the day, would have been impossible for me during every day (let alone financially difficult). I was able to get her assessed for Attendance Allowance which meant that she was entitled to a full discount on her council tax. I don’t hear of any dementia advocates ever advocating for any of this. I do wonder why.

I was struck by one line in particular in Kath Falconer’s email: “We know that each one of our campaigners has their own personal connection to dementia. ” One thing I do know as I approach 50 is that everyone has a back story you’re completely unaware of. It’s easy to think that other people aren’t as interested in dementia as you, they’re only doing it because they have to. But it’s actually impossible to find anyone who hasn’t been personally affected by dementia. As a physician, in older people, I am well aware that dementia never travels alone. In other words, if you have dementia, you’re likely to have a number of different medical conditions. But it is undoubtedly as there must be about a million people in the UK with it – many undiagnosed, and many having to be cared for by family or friends unsupported. It is also a deeply traumatising condition potentially – where someone’s ability and personality changes. This is very profound, if that person is your mother, brother, sister, son, and so on. And to emphasise there are some people with dementia entirely on their own.

The dementia diagnosis was crucial for me. First and foremost, it helped me understand what mum was going through, allowed me to access medical treatments which would improve her symptoms (whether for memory in the early stages, or for behaviour in the late stages). Don’t get me wrong. Some people to all intents and purposes do live well with dementia, or so it seems. But it is wrong to normalise dementia completely. Take for example my mum in the last stages. She was spitting on the floor, or sometimes start screaming in the middle of the night. Sometimes she would never take her meds, or eat her food. It was very easy for me to feel like a failure as a family carer. But I was giving it everything I could. I gave up a career, ironically in medicine, to look after my mum.

I was one of the very few who got NHS continuing healthcare funding for my mum. By the end, I knew all twelve domains of that scheme backwards, including taking medication, mobility, cognition, breathing and so on. I enjoyed updating with the NHS continuing healthcare assessors, and updating them on her anticipated care needs. It was hard work. I remember going shopping in Selfridges on Oxford Street one afternoon, and all I could think about was her assessment. Anyway that assessment never as such materialised. She passed away from COVID a week later.

As a carer, I always feared the next hospital admission. I could never leave her alone for more than a few minutes in the flat, in case she wandered out of the front door – and then I would never see her again. Or in case she fell over if she tried to get out of her bed to turn the TV off. The TV was always kept on during the day to keep her focused, and a lowly dim night light was always kept on at night to keep her calm. When my mum got really agitated, I would massage her feet. You see, for any behavioural outbursts, I could never recourse to medical interventions. I was very mindful of her dignity and of her fundamental human rights. I think ‘drugging people up’ with inappropriate medications is a form of assault. I understand though how carers can be driven to despair. I was on many occasion. I might ring up Rob Howard as a friend, who had personal experience like many of us do. Social care is a mess, and has got worse especially under the period of ‘dementia friendly communities’. I don’t think we should be too close to Government, such that certain individual people get awards but the entire system deteriorates in parallel.

So now as we approach the King’s Speech, dementia should be a priority. Bear in mind that I felt completely out of my depth even though I had been trained to a high level in medicine including dementia. We need more money in social care, though I understand that the current Government has tried to maintain this. It is also true that a lot of money was misspent during the pandemic, and that apart from the vaccine roll out there are still important lessons to be learned from that time. We need a wholesale reform of social care, possibly to be done under the framework of integrated health and care systems; and we need to ensure fair pay and working condition agreements for all in social care too. The Government and voluntary sector need to have a robust strategy for valuing family carers too who are a critical part of the political and social economy.

We must keep up the momentum on securing diagnoses for people with dementia. But a wrong diagnosis can do a lot of damage too – in that such individuals suffer an opportunity loss of not being treated for the correct diagnosis. A correct diagnosis of the subtype of dementia allows proper drugs to be given (and more importantly perhaps certain medications to be avoided). I found that the dementia diagnosis unlocked various other aspects of the care pathway.

Finally, we do need to push for more funding for dementia research. This thought should not just be for effective disease modifying drugs early in dementia, safe and easy to monitor. But also more effort I feel should be put into developing effective medications for those troublesome behaviours later on. Such behaviours need to be addresssed if anyone is to have any chance of being cared for safely at home. The scope for carer burnout and meltdown is so enormous. I am a big fan of ‘Dementia Moonshot‘. I think we need to deliver much needed, and quite overdue, breakthroughs; but I continue to be simply amazed at the outputs of labs including PhD students and postdocs everywhere in the world. The last international conference I went to was in fact the Alzheimer’s Disease International conference in Australia nearly a decade ago. I did go to the Alzheimer’s Society annual conference in Victoria this year though, and I very much enjoyed it.

I don’t want to be hyperbolic. Medicine has taken a long time to develop drugs for the underlying disease processes. When I became a member of the Royal College of Physicians, drugs for interstitial lung disease or anklyosing spondylitis were all symptomatic – but now they can change for the better the underlying biological progression. This is awesome, and has only been possible through very sophisticated transitionary medicine. Small things can make a large difference to people. If you don’t believe me, try sleeping without a mosquito net in Africa.

This matters to me. No experience for anyone affected by dementia is ever wholly pleasant, but knowledge is power. By picturing dementia as it is we can make things better for others. We need to chip away at everything. Social care is not just doing lots of tasks to care for someone – it is an entire ethos attitude about empowering somebody to live a life as full and flourishing as possible. We know that the NHS staff, likewise, are overworked and in their own industrial dispute. However, we need to keep this focus on dementia. The Government really does need, in my eyes, to get a move on regarding publication of a new dementia strategy. That would be my ideal outcome. There are certain details which are simply not covered in a broad ‘major conditions strategy’ alone. Unfortunately, some of what I say is slightly political, but it is also deeply personal. I believe what I am saying, which won’t extrapolate to everyone. I know that. It is my truth. But it will hit a chord with some. And we are not alone.

 

 

@dr_shibley

 

What do we want for dementia care? We want a future. When do we want it? Now.

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.

A personal reflection on the APPG report published today on disparities in dementia diagnosis

A new report was published today by the Secretariat of the All Party Parliamentary Group for dementia, held at the Alzheimer’s Society.

You can read the report here.

It really does have to be read in conjunction with the Major Conditions Strategy from the current Govt, here.

I am one of those unfortunate to be ‘affected by dementia’ – a broad term, but when applied to me it means that I was an unpaid family carer for my mum throughout her dementia experience from overt symptoms in 2016 ultimately to her death from COVID in July 2022.

It was literally the best of times and the worst of times. There were some mornings towards the end, when I would feel ‘finished’ by 6 am, counting the minutes until the morning carers came at 9 am. Unpaid family carers do much of the heavy lifting for care nationally, and I was struck if troubled by the statistic that 8/10 carers do the active caring. With personal care, I wouldn’t have wanted to do the intimate care with my own mum, probably especially as she wouldn’t have been able to express herself to me.

It really resonated when I watched for the first time a Sky Sports interview for the first time with Kate Lee, CEO of the Alzheimer’s Society. Kate described losing her month 10 years ago. And I felt I lost mum long before she eventually did die in the early hours on a hospital ward. I found totally ad hoc how I learnt about the things which I had to have prepared: e.g. lasting power of attorney, welfare benefits, financial planning, adjustments to medication, hospitals and care planning, personal budgets, and so on. On top of this, mum was one of the rare recipients of NHS continuing care, and this required very careful monitoring of whether mum’s health and social care needs were met. I would simply have not have survived unless I had been helped by NHS continuing healthcare. I would hate to imagine that my mum’s care would have been compromised by the cost of it. I think it’s dreadful that there is such disparity between the cost of care for dementia, considered social care in the later stages, and the cost of care for cancer, considered medical, totally arbitrarily. The major conditions strategy from the Govt simply doesn’t address this disparity. Even an incoming Labour government has indicated that integrated care will take on the gestalt of a lemon car – with the front end, NHS free at the point of use, with the back end bolted onto social care, pay on demand, like some sort of dystopian pantomime horse or lemon car.

The whole care pathway needs a 10 year plan. I think the rôle for technology is overstated in ‘living well with dementia’. I am all for the shiny gizmo approach to diagnosing dementias. This would include AI and all the rest of it. But thinking about it all, I noticed mum wasn’t mum long before her formal diagnosis. Her self care deteriorated, her handwriting changed, and her water bill went astronomically up. I am old enough to be Prof Martin Rossor’s SHO like many of us were, me in 2002, and I can’t emphasise enough the importance of a meticulous clinical history from both person with dementia and informant. I can’t also emphasise enough the need for follow up. The critical thing is to see a change, deterioration, in cognitive peformance. If people broadly look the same over a vast number of years, decent medics will call out the emperors’ new clothes, and suggest for the benefit of the person who has received a diagnosis a revision of that diagnosis. I sort of see the fudging of the Major Conditions Strategy in saying most of the diagnoses should be in the community, and done by both ‘generalists’ and ‘specialists’. First thing to say, well done to the APPG which laid bare the glaring postcode lottery between bad performers and good performers in dementia diagnosis. Second thing to say, we need to widen what we mean by community – not only people in their own homes, but people in care homes, nursing homes or hospices.

I think there is a discussion to be had now about overdiagnosing dementia. It might be possible to diagnose people without symptoms using sophisticated laboratory tests and neuroimaging, but these are likely to be expensive; and problematic if the treatment requires intense medical monitoring and accompanied by rare but very serious side effects. The rollout of new drugs is much more complicated than it first appears, and of a lesser priority to me than a social care system literally on its needs due to more than a decade of savage cuts. When I think of the flash points of trouble in the dementia pathway, I tend to think of social care and primary care. If patients prefer to make an appointment through the “8 am scramble”, if they can stomach it, we have to think about whether an effective diagnosis can be initiated through a telephone consultation. That’s when digital literacy might become a factor, and that’s when barriers to particular ethnic groups may become a factor. Ideally, a GP might see in person a person with dementia and a loved one; but one has to worry now with the problems in recruitment and retention of staff in primary care whether GPs are able to cope to deal with concerns about dementia. This puts a lot of responsibility of members in the public being able to know how to navigate the system, and I personally see no alternative to care coordinators as well as specialised practitioners as care demands increase.

So I am compelled to think about whether the Major Conditions Strategy actually achieved the aims of #PlanD of the Alzheimer’s Society see here.

The APPG set out clear specific, measurable, actionable, realistic targets today: for example a dementia strategy for every integrated care system, or a Dementia Public Health Observatory. But it’s now patently clear to me that dementia, because of the nuances in medicine and care, does need its own 10 year strategy, last drafted properly in 1999. Whilst it’s true that dementia never travels alone, i.e. if someone has dementia the chances are that he or she has another condition too, dementia does have its own peculiarities which do need addressing. It’s a devastating disease for the person and any friends or family, and strikes at the very heart of what a person is. Today’s APPG report was magnificent, but felt like the first step in a very long journey yet again.

Dementia care is more than giving a pill and hoping for the best

Doctors are very busy people. Having said that, dementia care is more sophisticated than just dispensing a pill and hoping for the best.

Of course speaking with anyone with advanced dementia can be frustrating. You find yourself repeating things, and listening to the same thing many times over. In a weird way, you miss those days when a person with dementia goes from saying a lot because he or she is disinhibited or impulsive, to saying nothing and becoming virtually mute. This is all part of the sting of the ‘new normal’. Every day is the same and presents a new challenge – such as mum having a fit of anger at 4 am, or mum wanting to go out at 3 am with her handbag to Bangladesh. There are advantages to someone with someone with a small memory – that is that person is likely to bear a grudge, or even if they do bear an emotional grudge unlikely to remember the precise reason why. This translates into Ted Lasso’s sentiment that the best leaders are goldfish – as they have a small memory.

As dementia progresses, care becomes more and more important. Because of the limited effectiveness of some drugs in memory or in behaviour, and particularly as family members can’t prescribe, little things such as a son or daughter looking compassionate, or massage, o a favourite drink, can help. I felt towards the end that the purpose of dementia care was to enforce the impression that the home was a place of safety and familiarity. This goes for a care home too. I think having the same carers really helped, even if the sense of loss when they went at the end was even greater. Continuity of care really helps; it is also true that breaks in care and unfamiliarity are really distressing for anyone with advanced dementia.

Advanced dementia is so much more than a faltering memory. The person may become increasingly frail. He or she may not even recognise you even if you are related. The change in personality is disorientating, although deep down you feel that mum is probably still mum, when you look into her eyes. At first, your inclination is to wish mum was as before. That’s certainly in the early days. But as time goes on you realise that you are not in charge of events, and any ambition to limit the time and expenditure of dementia care gets thrown out of the window. The inability for political leadership to realise that dementia care is a complex, sophisticated discipline requiring a hotbed of organisational learning and open-mindedness requiring sympathy with equality, diversity and inclusion is striking.  The dream of wanting to provide dementia care ‘on the cheap’ is facilitated by making unpaid family carers do more and more work, but they are at danger of being bunt out and distressed in the narrative of ‘harnessing the asset and value of social capital’.

Of course, the name ‘dementia’ is clearly stigmatising, but that is the least of society’s problems

This in every sense a difficult piece to write. Even though I had studied dementia for my own Ph.D. at Cambridge in the late 1990s, I never thought to think that it would impact on my life in quite the way it did.

I even went innocently to a conference on dementia in Ljubljana, Slovenia, in 2015. I remember phoning mum up to see if she was OK. She had come to look after me, as I had become disabled in 2009 due to meningitis. As my late father kept on reminding me at the time, that two month coma possibly saved my life. I had a desperate battle against severe alcoholism which crippled my time as a junior doctor. I had absolutely no support, and faced the regulatory system with worsening mental illness, severe depression and alcoholism, with an increased feeling of humiliation, shame, guilt and loneliness. I don’t think I ever emotionally survived it, but was helped by my (now late) mum and dad visiting me every day on Albany Ward, where I was an inpatient in neurorehabilitation, learning how to walk and talk again. The neuropsychologists taught me how to plan a basic shopping trip, and how to use a triwheeler to get about. I rebuilt my life, completing my Bachelor and Master of Law, and my MBA. I succeeded in my ambition to be restored to the General Medical Council, but I was never helped enough to achieve my professional dream of returning to neurology or retraining in geriatrics.

I do believe that everything happens for a reason, and serendipity is a good thing. Back to that phone call from Slovenia to my mum. I asked her whether she was taking her medicine. I had put all her tablets in separate envelopes, like a make-shift dose-set box. She didn’t know what I was talking about. A few months later, she suddenly collapsed after breakfast. She came round during the 999 call, but I took her to ambulance. Only later did I realise that she was unable to take her prescribed antihypertensives reliably. This was all under my nose. The water bill shot up suddenly. It all makes sense in retrospect. Then suddenly one week I took her hospital for what was framed to me at all times as a pneumonia, The doctor never spoke to me, even though I lived with her and looked after her. It came as a surprise to the doctor that I was her son. Ward rounds were conducted in my absence. I was taught nothing about delirium.

That one event was the signpost for a dementia. Over a few years, mum went from dressing herself in a saree and making her own pilau rice and chicken curry, to being fed Ensure yoghurt, talking to herself at night-time, and spitting at the floor. The carers, all Somalian, all women, all Muslim, were like extended family. I suffered bereavement from their absence, when my mum died. I’ve never spoken to them since, nor seen them since. The Keysafe box is still there. I only keep it there empty to piss off burglars, as there’s no key in it.

I came to the conclusion that dementia, if correctly diagnosed, is a sad and tragic condition. If a person is not misdiagnosed, the story begins with dementia and ends with dementia. In fact, in mum’s case, it started with delirium and ended with delirium. As for my alcoholism, it feels as if I have years lost and have stunted emotional development. Nonetheless I am still alive which is an achievement. Mum is not alive, but unless I had been sober and recovery I could not have been a good son to my mum. I don’t think I should want to return to medicine now, as I have an interest in psychoanalysis, the arts, and I have a phobia of hospitals and GP surgeries. I like people who do research if they’re interested in science rather than their own careers. I love being on the CNWL Carers Council, with like minded soul mates. I love it when gifted broadcasters such as Sangita Myska are able to talk professionally but also from the heart about dementia and the caring professions.

The truth? We don’t value carers enough. I don’t see why we pay little more for a carer than a junior doctor, when you need to have a complex understanding of healthcare to do it. Paradoxically, being an unpaid family carer taught me much more about medicine than my good First from Cambridge in neuroscience, my Membership or my Ph.D. Of course, the term ‘dementia’ is stigmatising. But a correct diagnosis of dementia is horrible. I saw my mum go from an articulate highly sensitive person to a person who could barely recognise me and who look perpetually frightened. But she was my mum, and I don’t regret doing everything that I could to help her.

Learning of a new diagnosis of dementia. Everyone’s experience is unique.

I read this afternoon of Alastair Stewart’s diagnosis of vascular dementia. Alastair Stewart’s interview on GB News, cited in  a tweet by ITV, talking here with Camilla Twominey, introduces many things I have thought deeply about – how as dementia progresses, routine cognitive tasks can’t be taken for granted, and the casual progression from immediate members of a family to being carers.

I am the sole son of my late mother, diagnosed in 2016. She died last year, being cared for entirely at home by me and professional carers even throughout the pandemic. Not once did she ever demonstrate that she understood that there was a pandemic going on. Therefore she did not understand at all why any of us were wearing masks and gloves. Even though I am fully on the General Medical Council register with a full license to practise, I chose not to train full time so I could spend quality time with my mum. I don’t regret this for a moment.

Undoubtedly for her, dementia must have been to some extent terrifying – but she never thought that she had dementia and she seemed blissfully unaware of it in some perversion of a belle indifference.  She went progressively from independent to being bed bound and ‘watching TV’ all day. I only interrupted her at the end for meals and medications. It used to break my heart when she rejected either. Care routines were disrupted by staff shortages, bank holiday transport, and so on.

As I had been a junior doctor under Prof Martin Rossor in the top dementia firm at Queen Square, in 2002, where indeed  many of our juniors Nick Fox, Jason Warren and Jon Schott became professors, her diagnosis of dementia came as a big surprise to me.

It should not have done. I remember taking her to see the GP in my local practce in Hampstead, and I remember how remarkable it was she got lost in coming back from the toilet. And then there was the fact she totally messed up the ‘clock drawing test’ – where you have to put some numbers in a pretend clock face drawing. It upset me, and it surprised her.

The issue about a (correct) diagnosis of dementia is that it’s not possible to predict how long  the dementia journey  will last – nor how fast it will be. I could not even predict what would happen on a day to day basis. Every day had its new normal. This was good as well as bad of course. Every time mum had an argument with me or the others, she’d soon forget – which meant we never held grudges.

I never saw myself as a carer, although I was very proud to care for her. Hospital admissions would have been impossible, if it were not for me accompanying her. I used to dread it when hospital staff including allied health professionals and junior doctors used to insist on speaking to her on her own, when it was perfectly clear she was unable to give her own history at all.

I remember when the consultant in geriatric medicine took me aside on the last day of an admission and chastised me for not telling his junior staff that I lived with her. I said politely that I was never asked to meet them.

The problems in dementia care should not have surprised me much. I have written many books on the subject, detailed and well evidenced, published many peer reviewed papers on it, and even did my Ph.D. at Cambridge on it awarded without corrections from 1997-2000.

But the dementia journey is very stressful potentially. For me, it brought me paradoxically closer to mum in a way that I had never expected. It made understand the meaning of death in general, and the ultimate futility of keeping someone alive at all costs. In the end, I felt uncomfortable about mum’s continual suffering. I loved her being alive, but it was telling towards the end that I never knew whether a hospital admission would be a ‘last admission’ let alone an avoidable one.

I think a correct dementia diagnosis is critical though. It enables things to be put in place, like a will, lasting power of attorney, carers’ allowance, attendance allowance, council tax exemptions; it also allows medications from registered professionals which can be a lifeline for cognitive symptoms or problem behaviours. Small changes can make a world of difference, often for the carer more than the person living with dementia.

Social care is a farce, so much so getting ill with dementia can be a costly business. It shouldn’t be. Generations of politicians have failed to fix it, and generations of enthusiasts in charities have promised the sunny uplands. The reality has always been different. Unpaid family carers will continue to be highlighted – but I worry that they have to fight too hard to get a seat at the table.

In the meantime, I salute Alastair Stewart. Even though we have different politics, he is clearly a wonderful and brilliant man. We have various niche things in common, actually. And dementia will never take that away from him for me, him or his friends or family.

Dementia is more terrifying than any thriller film. Let’s not underplay the challenge.

Looking at the filmography of Bruce Willis, you can easily see that his list of film titles, the filmography, reveal aggressive action-packed thrillers. These include titles such as ‘The verdict’, ‘Die hard with avengeance’, ‘The siege’, ‘Live free or die hard’, for example.

Like many, I was sad to hear of the news that Bruce Willis had been diagnosed with a type of dementia, frontotemporal dementia. This is the dementia I studied for my PhD twenty five years ago in fact.

Let’s not tip-toe around the issue. Dementia is a horrible disease. Take it from someone who knows. I helped to look after my own mother with it. Dementia is often framed as a war or battle. But this is unfortunately a battle or war which you are very likely to lose ultimately. There is no known medical treatment to ‘stop it in its tracks’, as has been the campaigning slogan for many corporate dementia charities for the last few decades.

I believe that It is only possible truly to view dementia as an ‘opportunity’, or a ‘bit of a bummer’, if you actually don’t have much experience of the horrors of this life limiting illness of dementia. Not blaming anyone. Just saying. But you wouldn’t call a brain tumour a ‘bit of a bummer’ or an opportunity unless you had a classic belle indifference. Whenever I hear of the hat-tip to ‘living well with dementia’, the only opportunities I see it giving are invitations to events. But otherwise I feel entirely gaslighted. It is an astonishingly cruel disease which is cruel not only for the person with dementia but carers if they’re there. It’s important to be up-beat and to give hope. It is quite deceitful for burnt out carers to be made to feel inadequate if their loved ones are not doing so well though. Carers shouldn’t be propelled into thinking that they are the ones who are the failure.

My first encounter with ‘dementia’, a progressive condition of the brain which causes the brain to shrink and for all the mental faculties to disappear gradually, was totally innocuous. I developed an innovative way of diagnosing frontotemporal dementia, a relatively common dementia in the mid-life age group, This was the result of my own Ph.D. which I completed in dementia in 2001 at the University of Cambridge. I showed that people with this type of dementia have real problems in mental flexibility, long before other cognitive changes or indeed changes revealed by other tests. The tragedy is that prompt diagnosis is not much help unless the system is there to support or care for you thereafter. I went onto work as a junior doctor in dementia at the National Hospital for Neurology and Neurosurgery in Queen Square on a specialist unit, indeed at a time when most of the current professors of dementia were in nappies.

I was fairly bright eye and bushy tailed when I published my first book on dementia, ‘Living well with dementia: the importance of the person and the environment”. The year was 2014. The book was well received, in that in 2015 it won best book of the year award for the British Medical Journal book awards for health and social care. I do have mixed feelings about this book looking back on it now. It was an up-beat version that you could live well with dementia. It is of course possible to live well if you’re sitting in an electric chair waiting for somebody to pull the trigger. The book itself received good reviews. But the proof of the pudding is not much how it benefited me by writing it. At the time, I attended the annual conferences of the Alzheimer’s Society, where Jeremy Hughes, their CEO, would sit next to Jeremy Hunt, Secretary of State for Health and Social Care, as if Hunt were some sort of saviour rock-star type figure. The reality was, however, that Hunt was demolishing social care in devastating cuts under the guise of austerity, politically driven, in just the same way he was sowing the seeds for the destruction of conditions for junior doctors. I was later to discover that social care was in disaster mode, and not fit for purpose.

I have had an active involvement with the field of dementia even pre-dating my extensive experience of it at a human level with the person who gave birth to me. I have published several books on dementia in the next few years, including one on the entire NHS pathway from diagnosis to dying, where I persisted with the pipe-dream that patients and carers could be supported in their journey of dementia. I wrote a book for the workforce on the main training needs surrounded dementia, with Rob Howard. This I feel genuinely tried to help. I’d hear non-stop about how little doctors knew about dementia, despite dementia being a large part of their training. It was at a time when expertise was much derided, as in the run up to the Brexit vote.

The main turning point for me personally was when my mum was at last diagnosed with dementia in 2016. She was to die in 2022. I experienced first hand as a burnt out family carer, though I must say the paid carers were amazing. I now sit virtually every week on carers’ meetings for groups of carers here in London, including one specifically for carers in Camden. I know carers are totally under-supported, and are totally surprised by what dementia is, or what is coming next. Hospitals are ill equipped to look after patients with dementia and carers. The number one emergency in dementia is delirium, an abrupt change in personality and behaviour accompanied by a marked and rapid deterioration in thinking skills. Carers, whether in care homes or at home, are not confident in picking it up – and yet delirium can represent something life-threatening. An underlying cause for delirium, such as a heart attack, stroke or infection, must be identified especially if that person with dementia has lost the ability to communicate effectively. I am honoured to be chair of the specialist interest group in the neural basis of delirium for the American Delirium Society. I indeed chair a panel in Rhode Island in June on this.

It’s these weekly chats of mine where I know things aren’t working well. A small group of self-selected dementia ‘advocates’ are too busy appearing in flashy conferences talking about their view ‘stigma’ – but how it’s possible to ‘live with dementia’. But all the severely lacking is practical support on making a will, getting a lasting power of attorney organised, knowing what sources of help are available other than ‘memory clinic’, who can review medications, and so on. There’s been a wild obsession with sitting on committees, technology, the meaning of the word ‘suffering’, and other well worn memes of the last decade or so. But what impact have these advocates had? Virtually nothing in my view. Sad.

As dementia progresses, it not only chips away at discrete cognitive functions one by one, from planning and memory, but can turn the person with dementia into a changed person with marked behavioural changes, such as wandering around without an obvious person or distressed aggression. Such behaviours are impossible to ‘hide’ in a person with a real diagnosis of dementia. We have to be able to talk about this openly. Denying they exist is one strategy to ‘destigmatising dementia’.

If advocates said to be living with dementia do not in fact have dementia, the agenda of ‘normalising dementia’ is further enhanced. It is true that people with dementia are correct to find annoying the phrase ‘you don’t look as if you have dementia’, as dementia can be an invisible invisibility. Dementia can present with impairments such as in perception or memory not obvious to the naked eye. But it is also sadly true – or happily true if you are living in a sensible universe – that some advocates ‘with dementia’ possibly do not actually have dementia. They are more accurately ‘living with a diagnosis of dementia’. They can clearly sustain a conversation without any obvious dysfunction in short term memory, long term memory, attention or social cognition, and have been able to do so over very many years. The misdiagnosis of dementia has important ramifications, and has been deconstructed previously.

I find the agenda of “normalising” dementia interesting. It is presented with good intentions that people with dementia can live perfectly well in ‘dementia friendly’ communities. This is based on the belief that reasonable adjustments are made for disability such as dementia. You don’t have to ask for these adjustments. You don’t have to ‘out’ yourself as having dementia. I applaud those who live independently with dementia. But it is also true that some people do need quite intense support, such as those who are doubly incontinent during the day and perhaps don’t even realise they suffer from an incontinence problem. So don’t focus your time on a rather upper middle class #firstworldproblems debate of what a ‘sufferer’ is. Concentrate your efforts on not making somebody walk around in public in wet patches because you haven’t helped them. But I think a lot of the stigma comes from the terrifying behaviours in advanced dementia. Many carers I chat with weekly remark about how their spouses or parents are totally “changed” people. When somebody starts spitting at/on, or biting. their loved one, it is hard for them not to become “othered”. Care homes are for many a place of love and compassion. They would have been disastrous for my mum who lost her ability to speak English. I am sure that she would have felt very isolated with no friends or people she recognised. I think a sense of security, warmth and safety is something which should be main goal of any dementia care wherever it takes place. Dementia comes with it complicated care demands in several domains, such as swallowing, eating, dressing, walking, talking, taking medications. It is simply inhumane not to support people to support people with dementia. I have long asked for a more robust approach to post-diagnostic support and care, with specialists on hand to help people with dementia and carers.

Bruce Willis’ diagnosis of dementia reminds one that dementia can happen to anyone. In fact, one third of us will have dementia by the time we die. Dementia is a condition which doesn’t just happen to ‘other people’. Unless we as a society face up to the limited progress made by drugs in this area to halt dementia, and truly embrace the need for the NHS and social care to look after older people with complex health conditions including dementia, we will be fighting a losing battle all the time. It’s time we’re honest about the fact that dementia is terrifying for unpaid and paid carers. I’m sure it is horrific for the person who actually has it, even with varying degrees of insight. We should stop sanitising and normalising it. It’s a horrible condition, and we need to be honest about it. We need to invest – at last – in the systems of care to look after persons, or patients as they fall in, and to look after the carers. We need to stop pretending everything’s basically all right.

Just. Saying.

The urgent need for equity in delirium research

A verbatim quote.

“Health Equity means fair opportunity to live a long, healthy life. Inequities in health are not inevitable or necessary they are unjust and are the product of unfair social, economic and political arrangements.”

The reality?

If it is true that less than 10% of global funding for research is spent on diseases that afflict more than 90% of the world’s population (the so-called “10/90 gap”),  all researchers must be concerned, for the sake for fairness, where they publish their research and how.

This requires institutional and personal leadership. For example, the Wellcome Trust promotes heavily open research. Every little bit to change the direction of the dial helps.

For psychosis, for example, it is acknowledged that the interpretation of psychotic phenomena depends on the socio-cultural context of individuals and how they are interpreted.  In contrast to a literature on this, there is a relative paucity of peer-reviewed research especially in lower- and middle-income countries on the cultural interpretations of different delirium phenomena around the world.

The irony of publishing the contributing effects of genes and the environment to dementia in only journals with high costs, paid for by the researchers out of their funds to multinational publishers, could not be more striking or as a deeply disturbing cause of cognitive dissonance. When you consider that the delirium superimposed on a background of dementia is a huge societal and clinical issue, the barrier to dissemination of knowledge in both dementia and delirium is in my personal view quite unconscionable. How you interpret ‘value’ does allow for a plurality of views, perhaps.

We know barely the basics of the social determinants of delirium, even in comparison to frailty or dementia, and that is a tough find. Unless we have this knowledge, it is rather impossible to mitigate against glaring unfair disparities.

It may be literally a #firstworldproblem, but collectively it is worth both senior and less senior researchers making a stand on this. Otherwise, it will be patients experiencing any one of the delirium disorders and their carers who will suffer the most.

@dr_shibley