Walls and bridges – reconciling the dementia ‘divide’

The iconic, late Rabbi Lionel Blue always argued that the best aspect of walls was their destruction, to build bridges.

Walls can be a means of a communication.

I was reminded of this comment by Simone Weil recently.

Destruction is a critical part of renewal. Creatively, it is said to be basis of innovation, possibly consistent with a framing of Schumpeter.

I was listening late last night to a podcast. That was Dua Lipa, pop icon, talking to Tim Cook. Cook, as well as being the CEO of Apple, used to play the trombone. So Dua and Tim have at least one thing in common.

Cook clearly has an innovation spark. But it’s more than that.

He’s a firm believer in collaboration. There are many like me who believe that collaboration is entirely consistent with disruptive innovation.

Cook says, “When you bring two people together, the sum is more than their individual parts. We can make 1 + 1 equal 3.”

I firmly believe this too.

Whilst the latest Alzheimer ad is a ‘tough watch’, and has caused some upset, it has also resonated with some individuals. Like me.

Don’t worry.

I’m not about to mount a robust defense of it. That’s not my job, nor my intellectual interest.

But as the late Jo Cox said in her maiden speech in the UK parliament, “There’s a lot more that unites us than divides us.”

I once received a comment from somebody extremely experienced in the field of dementia, “We can agree on that.”

Why? Because we both agree, apparently, that we need to be improving health and social care service provision. That is the one of the stated missions of policy of the Alzheimer’s Society.

To all intents and purposes, my weekend was genuinely spoilt with the death of Dr Jenny Vaughan. I remember her excitement on her first day as the neuro-opthalmology and epilepsy specialist registrar of the National Hospital and Neurology, Queen Square.

Jenny used to call me always ‘Shibbers’. We had much in common, including a trenchant love of social justice, as well as of neurology.

Whilst my instinct is to find ‘living well’ ‘irritating’, I think to a large extent this is performative on my part. The reality is that I spent every living breath trying to make my mum’s life liveable, against the odds.

I certainly don’t feel she died several times. That should never be said jokingly. It is a cruel metaphor.

I understand completely the wish to portray the “harsh realities” of dementia, as Kate Lee explained here.

I think Kate is fantastic. There’s no “but”.

Jenny Vaughan was a strong advocate of “learn not blame”, however.

A few things stick out for me as part of a review of “that ad”.

That creative product, produced at large cost like the ‘rebranding’ of the Alzheimer’s Society a few years ago, is not the best offering ever produced by the Alzheimer’s Society far from it. If we assume that marketing and comms experts are the experts in marketing and comms, we are left unfortunately with the conclusion that the brief was dodgy allegedly.

It’s a belief held by a sizeable majority that, despite portraying carer burnout and grief, the ad is overly nihilistic and dehumanising. I agree, but I can see how the antagonist’s feelings became so strong. I’ve been there too.

I think the reason most of us care so much to say something is that the Alzheimer’s Society is a highly thought of and influential party in the discourse of dementia in England – usually.

There’s no doubt in my mind that dementia carers need help. It’s an incredibly stressful rôle. I receive feedback, and give feedback, in my participation of the carers’ council of Camden and Islington NHS Foundation Trust.

A simple gesture would have been to change the strapline altogether, ably delivered by Colin Firth – and to say something positive about supporting carers through a tough time, by reminding viewers of the excellent helpline of the society.

I still remain unclear who the intended target audience of the ad was. As a marketing product, I do find many elements of it baffling, even under the 7 Ps framework of the Chartered Institute of Marketing.

It is what it is, however. I don’t feel that the current state of play is that the monoclonal antibodies will hugely change the dial. I know they all will be ultimately approved both here and in the US, but possibly at the latter part of the year.

“Living better” should be an aspiration for everyone, and it is a fundamental human right for all of us to be afforded dignity and respect.

I’ve been long enough in the rounds to know that to make an omelette you need to crack a few eggs. Things happen. That is, after all, the basis of innovation and large scale system transformation.

The NHS, like social care, has become grossly underfunded and unable to facilitate all people in flourishing. It has become a fragmented illness service, fixing illness often on crisis timescales. It really doesn’t fulfil its intention of promoting health: brain health could be a priority, as well as vastly improving social care. That ad from the Alzheimer’s Society should be a reminder that dementia is a national priority.

It fundamentally is not a “competition” between living well and “dementia as a terminal illness”.

One minor ‘grumble’ I felt, rightly or wrongly, is that carers and people with dementia in the more advanced stages, appeared to become invisible as they weren’t considered to be able to participate in co-design and co-production.

The great thing about this time were that they were ‘in the room’ this time. Maybe that’s why it was relentless highly sanitised soapified dementia.

This video was co-produced with a more inclusive stakeholder group than previously.

It is actually possible to include people with more advanced cognitive difficulties, if you follow the reasoning about “process consent” from the late Prof Jan Dewing. I completely understand and agree with Prof Brendan McCormack’s stated concerns about that ad, while I’m on the subject.

I think also the destigmatising dementia policy seemed to be one of minimising the “spoilt identity” of dementia as per Erving Goffman, by normalising dementia – that people with dementia in fact looked and behaved like you – hence the meme ‘you don’t look as if you have dementia’.

So suddenly nobody ever ‘progressed’ in dementia to have swallowing difficulties, behavioural outbursts, falls, delirium, and so on.

I don’t think that this was a deliberate fraud, mostly. I think there was a significant minority who were misdiagnosed causing them to receive a dementia diagnosis, when they weren’t actually living with dementia at all. The details about this are important in my view.

We are left with at least two distinct populations, with significant needs and narratives on stigma and discrimination. It is central that we recognise that.

All of us, or the vast majority of us, we want to make the world a better place. Everyone deserves to be included. Everyone’s got a viewpoint you can learn from.

 

 

@dr_shibley

That Alzheimer’s Society’s “The Long Goodbye” – what I really feel about the campaign ad

Alzheimer’s Society campaign ad

According to brilliant work from Prof Liz Sampson and Prof Katherine Sleeman and others at UCL,

“More than half of Britons do not know that dementia is a terminal illness and the majority underestimate the current and future impact of dementia in the UK, a new study co-led by UCL researchers has found.”

It gives me no pleasure to write a piece on this.

The exchange of comments on the social media has been largely disrespectful, toxic and unpleasant, with many people sadly wilfully misinterpreting this nuanced ad and protecting their own interests.

It is worth reading the detailed notes which accompany this ad.

“Both carers and people living with the condition can experience multiple losses over the course of the disease. The advert shows the way in which grief shows up through the symptoms experienced, the relationships it touches, and where parts of a person’s self can be taken away as the condition progresses.”

But then it says in large letters:

“EVERYONE’S DEMENTIA STORY IS UNIQUE”.

The Alzheimer’s Society, a society which I don’t actually have any involvement with, says clearly it is there for “anyone affected by dementia“. This must include people living with dementia as well as friends or family, including carers.

In the whirlwind of criticism about this excellent ad, one commentator observed that, “the person with dementia must always come first”.

But let’s put this in context of the campaign ad.

The introduction to the ad says clearly who the person is: the son.

The son begins, describing Anna his mum,

“A friend, a sister, auntie, loving wife, my mum Anna. What a woman.”

This character is fictional.

But it is clear from the tone of his voice that he cares deeply for his mother. To be absolutely clear, relationships-centred care is a central plank of UK dementia policy. The person with dementia, and other long term conditions (“dementia never travels alone”), is always understood in the context of his or her relationships with others.

The ad then controversially goes through “multiple deaths”. I argue that these are not literal deaths. They are not even multiple deaths in the Buddhist sense, where followers believe in reincarnation, it is said. The script writer, and the Society, apparently want to portray a Self being chiselled away at.

The notion of Self (and personhood) has a long and distinguished history in dementia care and research, including Tom Kitwood, Paul Gibbs, Jan Dewing and Brendan McCormack. A seminal editorial, for example, is here.

Most clinicians would not say the Self is destroyed – but definitely receives frequent attacks.

The ad is literary license. It has analogy. It is not literal.

I think it is critical to understand the context of the main protagonist in this campaign ad (fictional).

He is a grieving son, clearly emotionally upset about his mum’s death.

I have been in that situation. I have given a farewell to my mum in my mum’s cemetery in London with close friends and family. The funeral came at the end of a complex and hectic week, including transfer of the body, last rites, and death certification under law.

But it’s important to understand properly the context. I was an unpaid family carer. By the time of my mum’s death, I was exhausted, had experienced burnout, and at the end of my tether. I was only kept afloat by a very kind social worker in Camden, and much support from my General Practitioner. I still feel my time looking for mum was intensely rewarding, but far more stressful than any time that I had as a junior doctor.

The fictional son is bound to be upset.

It is important here to understand some facts, rather than opinions, about dementia.

What is the average time taken from diagnosis to death in dementia?

According to the Alzheimer’s Society,

“The average life expectancy figures for the most common types of dementia are as follows: Alzheimer’s disease – around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years.”

As the dementia progresses, health care needs increase, such as eating and feeding, continence care, behavioural and psychiatric symptoms help, mobility and so on. It is not any surprise that these are domains of NHS continuing health care, which funds (all too rarely) domiciliary and residential care for people who cannot function safely on their own.

It is remarkable if somebody is travelling independently, blogging or tweeting 10 years after diagnosis, for example, but certainly not impossible.

A number of life events will happen to the person with dementia, if he or she goes from diagnosis to death.

In the ad, these are described as follows:

“Mum first died … when she couldn’t work out how to prepare her legendary roast any more … she died again when she became convinced people were stealing for her …. she died again the day she couldn’t get dressed into her colourful outfits … she died as the Queen of Christmas when she refused to have dinner with her family … she died again when she asked me what my name was.”

These landmarks resonated with me. At no point would I have been tempted to go to say to my mum, ‘You’re dead to me’.

One commentator likened this pejoratively to “living death”. It is not. The fictional son is describing multiple losses.

To give you an illustration, my mum used to be able to cook from scratch an amazing curry. At the end, she could not even butter toast, and I struggled to give her a bowl of porridge with honey. I had to call in expert help from community dieticians to help her. My mum would sometimes think things were there when they weren’t, but I think this was more to do with transitory delirium. She could no longer dress into her sprees, which she used to love. Her carers would put her into M&S pyjamas for simplicity, which was the best we could manage in the limited time slot. At Christmas, mum hated the carers’ visit and refused to put on her christmas hat or pull the christmas cracker, while the paid domiciliary carers were struggling making care appointments over the ‘holiday period’ due to skeleton public transport.

Ironically, I had revised the literature on person-centred care in dementia in 2017 in one of my books on dementia for JKP.

The final blow was when I showed mum a picture of my father on his blue badge and she had no idea who he was.

And then she didn’t recognise me.

She was the only person who had ever given me unconditional love.

Yes, the ad is a ‘difficult watch’ but it does contain painful truths for many of us.

You have to remember that the Alzheimer’s Society has a number of different interested stakeholders. In fact, if you chart the history of the Society to Harry Cayton days, it was very much involved in looking after carers too.

Dementia is an emotional experience for those who watch it. My mum throughout the whole experience never thought she had dementia – she did not understand why the domiciliary carers wore their masks, and had no idea what the pandemic was. That is the beauty of the clinical symptom of anosognosia – a lack of insight into your condition or symptoms. I’ve met many carers who confuse this with denial – it isn’t.

Some people with ‘mild cognitive impairment’ have an early dementia. Many do not – their symptoms are said to ‘reverse’ or ‘not progress’. Some ‘living well with dementia’ don’t have dementia at all. They have a functional cognitive disorder, which is important to diagnose as an alternative diagnosis in their own right. I suspect some ‘dementia advocates‘, who have not progressed in symptoms, have functional cognitive disorder, and may have been rather vocal about the Alzheimer’s ad. It is worth noting that they have enjoyed much attention in campaigning for dementia.

But there is work to be done – such as training the workforce in spotting and managing dementia properly. I published a book with Prof Rob Howard for this purpose.

At a time when most of us want to campaign on behalf of NHS patients and service users for the parlous state of dementia care, individuals embarrassingly have been busy organising petitions agains the Alzheimer’s Society rather than campaigning for better care.

It might seem at first blush that the ad might put you off from seeking a diagnosis.

But consider the alternative.

Would you like any of the events described by the fictional son or by me above happen to you, with no explanation for why they were happening? It is also a key policy workstream that people with dementia and carers participate in care planning, in the NHS Long Term Plan. Integrated health and carer commissioners are more than aware of this policy plank. This. care planning is supposed to set and update appropriate ceilings of care, avoid hospital care when alternatives could be put in place (e.g. virtual ward or hospital at home).

There is clearly a policy, moral and societal need, to name but a few, to include all people, including those who cannot speak for themselves. The introduction of the ‘living well’ or ‘dementia friendly’ initiatives coincided exactly with drastic cuts in social care, including domiciliary care, advocacy and day centres. By “normalising” people with dementia, anything deviant from that was bound to be markedly ‘othered’, and experience exacerbated stigma, especially those individuals with advanced dementia. By labelling some people with dementia, and looking as if you’re caring for them, led to a curious form of stigma exacerbation called ‘benevolent othering‘. By airbrushing individuals with more severe dementia from sight or public discourse, we have produced a massively imbalanced analysis of the needs of persons with dementia and carers. It’s akin in my opinion to what Prof Louis Appleby recently tweeted regarding severe mental impairment.

I do not think it is time for navel-gazing and the luxurious writing of petitions to cancel people at the Alzheimer’s Society. The faux outrage is embarrassing, and simply ignores some inconvenient truths about how horrible from start to finish dementia is. We should be trying to strive for improved diagnosis, care, more adequate research and treatments which aren’t quick fixes with potentially tragic side effects. We shouldn’t be obsessing about petitions and cancellations.

I completely understand there will be some who are hurt or distressed by the ad. But it is fictional, and actual dementia is a very distressing condition thrust upon unsuspecting individuals. There are possibly learning lessons here, but I prefer this to blame especially at a personal level.

I basically welcome the Alzheimer’s Society ad. I think it is brave and courageous, and puts clear water between the reality of dementia and how some have portrayed the dementia diagnosis. It is a welcome contribution to policy, and, above all, is critical for a diversity of views and plurality of opinion. It is essential for more nuanced thinking about dementia, and how we progress from here.

 

 

Shibley Rahman is a visiting honorary professor in the School of Law and Social Justice, Universirt of Liverpool and a honoraryresearch fellow at University College, London. He is an ex-carer for his late mother with dementia who died in 2022. He has written extensively in dementia, completed his Ph.D. in dementia at Cambridge, nd did his junior clinical training on the cognitive disorders and dementia firm of the National Hospital for Neurology and Neurosurgery, Queen Square. He is currently on the Carers Council of CNWL NHS Foundation Trust, London.

 

 

@dr_shibley

Christmas is a tough time for many, especially carers

About twenty years ago, I was a newly qualified house officer working the Christmas period at Addenbrooke’s. Addenbrooke’s Hospital is up Hills Road, in Cambridge. Christmas Day was a very quiet day, but Boxing Day was very busy.

When I was caring for my mum, in the last few years of her life, it felt odd. The paid carers would come as usual four times a day. It would be hit or miss whether Mum would want to take her tablets, or even eat her breakfast. Towards the end, we tried very hard to vary her diet. But she would eat a few bites of some toast, and drink a bit of tea. And that was that. I used to end up feeling demoralised most of the time. I’d put the TV on for her, and she tended to stare blankly at the screen.

But it always struck me how tough it was for the paid carers. The care provider used to provide private hire cabs for them to get to their clients. They could not really rely on the public transport. In the last few years, the buses here in Camden had become most unreliable anyway. Even calling an ambulance on the last occasion led to a fifteen minute to wait to speak to a call operator. In the old days, that would have been more than enough time for a stroke to do its damage. It won’t surprise you to know that the whole infrastructure had deteriorated beyond my wildest expectation within the last few years. So much for the absurdity of ‘dementia friendly communities’ then.

I understand why children will want to put a parent with dementia into a care home. I was talking only this week with my GP (who happens also to be my mum’s GP) about how I was nearly driven to put mum into residential care. Her behaviours became wilder and wilder, and it became impossible for me to leave the house safely without running the risk of her falling over while trying to turn the TV off, or even wandering outside of the front door and never being seen again. In the end, what stopped me was the threat that she might catch COVID in a care home, and I might not be able to visit her. In the end, she did catch COVID, I transferred her to hospital, and she died. I was far too late to realise that she was in fact ‘end of life’. She did have a ‘good death’ – uncomplicated, but all alone. It happened at 2 in the morning. It was shocking, not surprising and totally inevitable.

I did try to go through the motions of pulling crackers with mum on Christmas Day. She certainly didn’t understand Christmas party hats. Cooking a special meal for her would have been a waste of time given her swallowing problems. Anyway, it wasn’t really her religion as she had kept on telling me during my childhood – although it was engraved on my mind that Jesus is a prophet in Islam. For that matter, virtually for the entire4 time, Mum never felt that she even had dementia. She never understood why we all wore masks in the pandemic. This ‘anosognosia’ is quite common for people who really have dementia.

Yes, Christmas felt like a lonely time. While mum was physically with me in our small flat in Camden, it felt like just another day. I would end up feeling exhausted, and not quite knowing when the next disaster would happen. Being a family carer was emotionally exhausting, but it left me concluding that despite the fact dementia is the cruellest disease possible I loved my mum so much.

@dr_shibley

Changing hearts and minds about dementia. Implications of an identity crisis.

About ten years ago, a leading dementia ‘activist’, an advocate at the time employed by a national corporate strategy, said that part of the problem were media depictions of everyone with dementia “dribbling onto their napkin”.

At the time, this coincided with a drive from numerous corporate strategies, simultaneously from the Alzheimer’s Society, Alzheimer’s Association and Dementia Australia, to encourage the construct of “dementia friendly communities”. I never stopped to think about how a number of national dementia charities had converged on the same policy at once, but they did converge on an ideological harmony. That is, that society could be ‘friendly’ to those with dementia and to include them normally in society.

I also never stopped to think about how this exactly coincided with a small state ideology. I mean by this a drastic under-resourcing of care services. The result was that there was an increasing drive to present people with dementia in the media as ‘living well’. Extremists of this argument accused people of ‘not wanting people with dementia to live well’. This was clearly an offensive and ridiculous argument.

The upshot was that argument ran that the stigma against dementia could be reduced by ‘normalising dementia’. This was a simultaneous line of attack from prominent people ‘living with dementia’ that they would be told, “I never knew you had dementia”. To which they replied, in unison: “What does a person with dementia look like? 2 noses and 4 feet?”

But sadly media depictions of later stages of dementia became airbrushed from the narrative. There would be co-production with people ‘living with dementia’ – but never with carers. The experiences of carers could not be disputed. People with dementia couldn’t prepare their meals, couldn’t swallow safely, would lash out, might wander out of the front door at 2am, had trouble sleeping, and couldn’t remember the thread of a conversation. But often people ‘living with dementia’ showed no cognitive deterioration even after a decade, and apparently took any comment about potential misdiagnosis very ‘hurtful’. For people like me who basically gave up salaried employment to nurse my late mother, I could never believe why being diagnosed with dementia ‘was a blessing’.

There was never a plan to assess the outcomes of such dementia friendly information campaigns. Prof Sube Banerjee as the author of the ‘Living well with dementia’ national strategy in dementia in 2009 had made successfully the case for an information campaign. This was delivered just in time for the period of protracted financial austerity which was to follow in the UK.

My problem with the ‘Dementia Friends’ campaign from the Alzheimer’s Society and Public Health England is that it always seemed like a mechanism to promote the Alzheimer’s Society, its CEO and their favourite ‘friends’ (who were amply rewarded in the Queen’s New Years Honours List).

Millions were pumped into various outlets, like advertising/PR agencies and an online platform so that people could ‘game’ becoming a ‘Dementia Friend’. The number of ‘dementia friends’ shot up once it became possible to watch a video briefly online rather than attend an interactive session in person.

But did the ‘Dementia Friends’ programme actually combat loneliness or people with dementia living on their own without friends or families? Did it improve diagnostic rates?

Did it help anyone struggling with their shopping or other day-to-day activities during the famous pandemic which was to follow 2019 for a few years?

Unsurprisingly, no. The emphasis was always to help people to be seen to be doing something about dementia, whereas it did very little for those millions of unpaid family carers languishing on their own, financially unsupported and suffering in silence.

If anything, these unpaid family carers became the platoons of ‘slave labour’ which Edmund Burke had so kindly predicted ahead of David Cameron’s ‘Big Society’. David Cameron also was to wish for a ‘cure for dementia’, meaning a psychopharmacological cure for Alzheimer’s disease, by 2025. That’s the year after next. You will also notice that under him and George Osborne social care has been decimated.

There is at the time of writing still no plan for social care including domiciliary care. Retention and recruitment of the workforce is dire. Private providers are going out of business at the drop of a hat due to market failure, and it’s absolutely crucial to understand why leveraged management buyouts are ensuring a good financial return on private equity investments paid carers still don’t have a fair salary, good working conditions or sufficient respect in society. Take for example the recent anti-immigration hostile rhetoric from the current government?

I am exasperated by the state of English dementia policy. The experiment with dementia friendliness, a glorified experiment in benevolent othering, was relatively short-lived I suppose. But what would I know about policy anyway?

@dr_shibley

What is the face of dementia care in the future?

One day, there will be a reliable blood test to suggest more investigations for a formal diagnosis of dementia might be advisable. And also there might be a drug which you can start early in dementia which is safe to use and has a beneficial impact on the disease. These are not unreasonable goals one might want to emerge from research, funding for which has historically lagged behind to an unreasonable extent.

Another landmark comes to pass today – the Autumn statement from the current government. There will be, most probably, very little formally in Jeremy Hunt’s tub thumping speech in the House of Commons early this afternoon. The stark reality for unpaid family carers in dementia care in the real world could not be more staggering. My mum was given a diagnosis of dementia in 2016. She died in 2022. That journey with worsening dementia and frailty is one I will never forget for the rest of my life. It was incredibly eventful being her son who loved her every bit of the way. It was also very busy.

I am going to set out here some known problems and issues – what the Government has promised about funding, and why it’s important to hold the Government whoever it is to their promises.

I therefore simply for that reason take a keen interest on where dementia care is overall heading. I cannot emphasise enough how getting a formal diagnosis for dementia is so crucial for planning for the future. Whilst dementia is the most feared diagnosis in adulthood, it’s crucial to plan ahead. It is very widely acknowledged that a person with dementia will need more care and support as their symptoms get more and more remarkable, and difficult to manage, over time. This progression may mean that a move into a care home can better meet their needs. Alternatively, the care at home may need to intensify. We need a system where unpaid family carers are not languishing at home simply because they cannot afford to provide for private care. Unpaid family carers are, without correct support, finding themselves out of their depth, at breaking point and at crisis point themselves. We cannot go on like this.

In my personal view, it is basically unworkable for somebody to get through without receiving a formal diagnosis of dementia for their problems. Unfortunately many people with dementia will reach a point where they can no longer make some decisions for themselves. This is known as lacking ‘mental capacity’ to make those decisions. When this happens, someone else – often a carer or family member – will need to decide on behalf of the person with dementia. Long before that happens, a person with dementia will need help in paying bills and making basic financial transactions. A Lasting power of attorney (LPA) is the legal tool that lets you choose someone (or several people) you trust to make decisions for you. This person is referred to as your ‘attorney’, and you can choose what decisions they can make for you. I know people who put off doing the paperwork for this. But it is time well spent, and worth doing before it is far too late.

Nationally, things are moving actually quite fast. It may not look it, as the country still recovers from COVID and looks into what went wrong in English policy, of a start. However, there are important changes afoot. Integrated care systems (ICSs) are the centrepiece of the biggest legislative reform of the NHS for years. .NHS England has established 42 integrated care systems – partnerships between the NHS, local authorities, voluntary organisations and others – to improve the lives of people in their area, including those affected by dementia.

A major aim of current policy is to help people with dementia to stay well, independent and at home for longer. ICSs face a huge task. Staffing shortages in the NHS are chronic, health and care services are under extreme strain due to a crisis in recruitment and retention, and health inequalities are wide and growing.  The growing demand for home care means that providers are finding the complexity of need is increasing, as they are looking after people at home for much longer, with much more complicated conditions. 

Nonetheless, many people want to live independently at home. High quality home care can extend healthy lifespan and save money. But care homes can be equally good, but the rights for residents are a key concern especially in the light of what happened in the COVID pandemic. Advantages of care homes include 24-hour support from care staff, knowing that the person with dementia is in a safe place and social activities with other residents. I have previously discussed in detail how care works in dementia work in the care pathway. There is indeed a relative paucity of timely data about the social care market generally, and a lack of knowledge about self-funders in particular (those who pay their own fees make up around 50 per cent of care home users). 

A few years ago, it was estimated that businesses in England lost £3.2bn last year because people had to leave their job or change their working patterns to care for someone with dementia. The implications of the unpaid, family caring workforce are huge for the wider macroeconomy.  These are historic statistics now (klaxon), but, of the 355,000 people of working age caring for a loved one with dementia, more than 147,000 have had to reduce their work hours or have had difficulty balancing work and caring. It was estimated that more than 112,000 people had to give up their job in the past year, with many retiring early because of their caring commitments. But this eye-watering fgure will have gone up.

There is a relationship between how much money you put into the system, and what comes out of the system. That said, there are wider issues such as culture which are so entrenched and no money appears to shift the dial except from strong leadership. There is much evidence linking the treatment of staff to the safety and quality of care the elderly receive. Above all, good care relies on competent, trained, supervised staff having the time and continuity to build relationships with vulnerable adults.

But there are major known issues in the way dementia care is organised. For example, take zero-hour contracts. Zero-hour contracts are a type of casual worker contract. There is no legal definition of a zero-hour contract and how they are used differs from business to business. They are broadly understood to describe an arrangement where there is no guarantee of work or pay. 

It is said in their defence that zero-hour contracts can play a key role in enabling flexible models of working for both employers and workers. The use of zero-hour contracts can disrupt the continuity of care for individuals, who may see many different care workers throughout the course of their week, or even their day. This has been found to be especially problematic for people with dementia, for whom a continuous care relationship is very important. Clinically having a familiar face doing the caring, such as intimate personal care in changing an incontinence pad, is vital. Otherwise the person with dementia can become very scared, and basically quite traumatised. From an employer’s perspective they can help to manage fluctuating demand, such as where work is seasonal. For individuals, the arrangement can allow work to fit around other commitments whether that be for parents, students or carers. 

Many critics of attempts to regulate or reduce zero-hours contracts have said historically that they play a vital role in the UK’s economy. Labour’s current position it seems is that their proposals for reform will not prevent businesses operating flexible workforces. Instead, the aim is to shift the responsibility from workers to employers. According to Lewis Silkin, a growing number of businesses are moving away from zero-hours contracts to minimum hour contracts. For those employers that still rely on zero-hours contracts, it is likely that banning them will impact certain sectors such as in agriculture, healthcare, retail and hospitality more than others.

But the current Government has already made plans which will impact on dementia care in the next parliament. In September 2021, the Government set out plans to reform adult social care in England (PDF). It said that £5.4 billion would be used to fund the reforms between 2022/23 and 2024/25: these include £3.6 billion would be used to reform how people pay for social care (charging reforms). This included £1.4 billion to help local authorities move towards paying a “fair cost of care” to providers., and £1.7 billion would be used to support wider system reform.

Funding reforms in social care has been a mess for at least a decade. Many of us still feel the pain from the lack of implementation of the proposals off Andrew Dilnot. The Government originally proposed that the adult social care charging reforms would be implemented from October 2023. However, at the Autumn Statement 2022, delivered on 17 November 2022, the Chancellor announced that the reforms would be delayed for two years, with the funding allocated “to allow local authorities to provide more care packages.” Under the now-delayed reforms, the Government plans to introduce a new £86,000 cap on the amount anyone in England will have to spend on their personal care over their lifetime. The cap will apply irrespective of a person’s age or income. The legislative framework for a cap is already provided by the Care Act 2014, but the relevant provisions are not currently in force. Only money spent on meeting a person’s personal care needs will count towards the cap. Spending on daily living costs (commonly referred to as “hotel costs” in a care home) is not included. 

Local authorities can use their position as a large purchaser of social care to obtain lower fee rates from care providers. Providers in response often attempt to cross-subsidise by charging more to people who fund their own care. This possibly might lead to market failure and fragility in the system overall. Provisions in the Care Act 2014 (section 18(3)) will be brought fully into force enabling self-funders to ask their local authority to arrange their care in a care home for them so that they can benefit from lower rates.

According to Simon Bottery at the King’s Fund, following publication of its ‘next steps’ document on 4 April 2023, many of the remaining measures from the White Paper have been cut back or even abandoned. Most notably, a key promise of at least £500 million to be spent on workforce training, qualifications and wellbeing has been cut to £250 million, and a promised £300 million to transform housing options has been replaced by £102 million for smaller in-home adaptations.  According to the Social Care Institute for Excellence, the Department for Health and Social Care has launched a £42.6 million “Accelerating Reform Fund” to boost the quality and accessibility of adult social care by supporting innovation and scaling, and kickstarting a change in services to support unpaid carers. This might accelerate progress towards the “social care vision” where people have choice, control and support to live independent lives, and where care and support is provided in a fair, accessible way. That social care vision has been longstanding at least since the early 1990s in England, and has gone some recent refreshment.

So, in summary, there is, staggeringly, a known ‘direction of travel’ for funding of dementia care, and this has the two-pronged approach of fairer costs for the end-recipient and fairer working conditions for people involved in dementia care. To be frank, I don’t think that things cannot get any worse. But this low baseline shouldn’t be the standard by which we seek future progress? I have in any case tried to establish here that some known problems and issues – what the Government has promised about funding, and why it’s important to hold the Government whoever it is to their promises.

I am on ‘X’ here: @dr_shibley.

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.