“The Long Goodbye” a new advertising campaign from the Alzheimer’s Society: a personal and professional reflection

Alzheimer’s Society campaign ad (from YouTube)

I think that all art forms about the frailty syndromes including dementia are valuable, even ones I emotionally and cognitively object to.

My viewpoint is here.

The recent campaign video from the Alzheimer’s Society is interesting.

According to Campaign, the video was directed by Bafta-nominated director Charlotte Regan through Knucklehead. It was created by Jules Middleton and Peigh Asante.

The article in Campaign commences, “The ad follows a son giving a eulogy at his mother’s wake. It explains how dementia robs sufferers of elements of their personality long before their actual death.”

The word “robs” acts as a counterpoint to the Alzheimer’s Society own campaigning and policy work on “living well with dementia”.

At the time, the Alzheimer’s Society along with other international charities were promoting the use of more sensitive and inclusive language, and so published guidelines against use of the word “sufferers”, for example. Ironically, the charity’s own public-facing advice about language encourages the public to complain about media items.

The ‘robbery’ metaphor is a popular and beleaguered, hackneyed trope in relation to dementia, such as ‘killer’ or ‘companion’.

Gavin Brookes summarises the essential problem with this in his article:

” A range of metaphors are identified, with the tabloids exhibiting a particular preference for metaphors which construct dementia as an agentive and violent entity and people with dementia as passive victims, and which foreground preventative responses to dementia such as pharmacological intervention and individual behavior change.”

Ian Heartfield, chief creative officer at New Commercial Arts, is reported to have said: “This campaign is a simple, powerful idea that has been executed with empathy and skill by a director who has the world at her feet. The result is a film we are all extremely proud of.”

Actor Colin Firth concludes, stating: “With dementia, you don’t just die once. You die again and again and again. Which is why, at Alzheimer’s Society, we’ll be with you again and again and again.”

“Dying” is a very strong word.

A particular problem with dementia is the loneliness and social exclusion people with dementia and carers face following the dementia diagnosis. This ad highlights it, but threatens to normalise it and not offer anything useful to say about mitigating it.

There is a sociological construct called “social death” which occurs here, where a person’s identity and social networks are dissolved.

There is no doubt that the ad is technically, visually skilful.

Depersonalising someone is the complete antithesis to an approach, long respected and adopted by practitioners and physicians, which promotes personhood.

One of the reasons I really got into delirium care, and in fact I lead a special interest group for the American Delirium Society, is that I felt hospital delirium care was not far from advanced veterinary care, not being hyperbolic about it – refusing to acknowledge the patient as a person, but as a recipient of tasks.

The attitudes, well intentioned by the speaker at the wake, reveal an attitude which are familiar as Tom Kitwood’s illustration of “malignant social psychology”, which can lead to a very toxic attitude to that person with dementia.

Other examples are here.

This problem will have been obvious to any international leader of person-centred care in dementia.

Take for example, Prof Brendan McCormack, tweets here:

One criticism of the ad easy to bat away is that it is not ‘representative’ of a lived experience, and so causes distress.

The Alzheimer’s Society have in fact formally addressed this in their official response:

“Was the film informed by people with lived experience? It was very much co-produced – from concept to creation – with hundreds of people directly affected by dementia.”

But this comment only raises red flags about how the co-production was conducted, in a way focused on protocol and process. It is clear from the social media feedback that there is immense pushback on the negativity which many feel is actively undermining the sense of solidarity of unpaid and paid carers in dementia.

Prof Edgar Cahn writes in detail about how it is a process of civil action. See slides here.

What it is not is an administrative marketing tick-box exercise.

Campaigners have voiced their authentic negative impressions of the ads in a blogpost and in an audio diary, for example. Everyone’s lived experience is different. An ad campaign has succeeded, off the record, if it has complaints and people talk about it. Unlike medical professionals, it is allowed to cause distress. Charities rarely impose sanctions for improper behaviour.

I personally felt that dementia led to lots of new normals about my late Mum, whom I adored.

She lived with dementia, and died in July 2022.

Would I describe my experience of her as ‘dying many times’?

Definitely not.

This tweet resonated with me from Suzy Webster:

The ad while definitely sensational is for me utterly misrepresents the mindset of those of us doing direct care of loved ones. You adapt to a new normal very many times, and while definitely recognising a sense of loss on multiple occcasions, you celebrate the chance to try your best for the someone you love. At first, you mourn for your loved one’s loss of memory, for example by repeating herself, but then you mourn for the fact she can’t prepare a simple meal herself whereas once upon a time she could cook meticulously a highly complicated Bangladeshi curry.

I don’t deny that. The new normal makes the previous normal seem like child’s play. That’s the rollercoaster nature of the journey.

The strong sense of love is for very many the nature and ethos of unpaid family caring work, which I think is best encapsulated by the concept of ‘affective equality’ from Professor Kathleen Lynch. It is not, I believe, a legalistic ‘moral imperative’ argued by some.

This approaches love and solidarity, which is the currency of unpaid family caring in dementia – not neoliberal money.

In the ethos of learn not blame, I think there are some things to think about, but the discussion is welcome. I, for one, will be attending the World Dementia Conference at the Crick this Tuesday.

It will be honour, as I did my PhD at Cambridge thirty years ago in dementia, written widely on it, but devoted my life to looking after my mum with this difficult condition.

 

 

@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 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.

The ‘living well with dementia’ slogan. Causing more damage than good?

‘Living well with dementia: a national dementia strategy’ was the name of a policy document published by the UK government back in 2009 . Sube Banerjee wrote about it here.

Banerjee also wrote the foreword to my third book of dementia ‘Enhancing health and wellbeing in dementia: a person-centred approach”, published by Jessica Kingley Publishers 2017, a review here. There has been no major road map of policy since 2009, althoug three have been incremental additions sporadically over the years.

Has the UK become the best place to ‘live well with dementia’?

Jeremy Hunt once boasted that

“A dementia diagnosis can bring fear and heartache, but I want Britain to be the best place in the world to live well with dementia. Last parliament we made massive strides on diagnosis rates and research – the global race is now on to find a cure for dementia and I want the UK to win it.”

It is also true that as a result of the financial relative underspend for social care, compared to demand, social care is currently in crisis, with no settlement even after the much discussed Dilnot reforms.

A timely diagnosis of dementia, and a correct one, is the first link in the chain that is really important. It would be morally indefensible to withhold a diagnosis of cancer for anyone, for example. The diagnosis of dementia is not a minor inconvenience you can work around. It is a life-changing diagnosis for persons and families.

There is a need to protect standards for early dementia care. People need to be signposted to services appropriately, such as personalised integrated health and social care planning. There are also important legal interventions which can help a lot, like lasting power of attorney, welfare benefits advice including carers allowance, carers credit and attendance allowance, and interaction with councils over housing.

The overwhelming case to hear the voices of both individuals with dementia and any carers

I believe strongly that the person with dementia is the most important person in this whole discussion. I am simply worried about those people with dementia who cannot articulate their opinions or beliefs.

Individuals living with dementia might not even be able to communicate pain, if they have lost the power of speech.

The vast majority of diagnoses are correct, but occasionally a few slip through the net of people who instead speak very loudly about living with a dementia diagnosis, but who might have instead a functional neurological disorder. It is better such individuals are treated for the correct cognition.

Any physician presented with a person whose dementia appears grossly not to change over many years, for example 5-10 years, would be concerned about the security of the original diagnosis. The medical profession will always be keen to review diagnoses as they fall into doubt so resources can be appropriately managed and guidance appropriately given.

Dementia diagnoses, like many other diagnoses such as cancer, tend to reveal themselves with time, so this is not a question of anyone making a mistake or anyone deliberately misleading anyone else.

The problem comes with dementia advocates if they lose capacity, without anyone realising, and therefore safeguarding needs to intervene. The use of dementia advocates should therefore be done under strict safeguarding protocols, ideally. Carers often finding themselves blaming themselves if the person they care for appears to be doing worse than someone publicly with a dementia diagnosis – and this hurts. I should emphasise that nobody is swinging the lead intentionally. ‘Living well with dementia’ inadvertently can look great if you don’t have dementia.

What can actually be done to help someone live better with dementia?

Social care also can help with direct payments which can be used by carers in such a way to improve their health and wellbeing.

Physicians and general practitioners should prescribe cognitive enhancing medications as recommended by NICE such as cholinesterase inhibitors or memantine. A small improvement in cognition and behaviour can make a huge impact for the person with dementia and any carer.

It is worth noting at this point that not all people with dementia have friends and family who can help. Some live alone. Loneliness is a hidden societal problem at large.

I have never sought to muzzle the voice of the person with dementia? Why would I? I looked after my mum for six years so that she could live at home, for six years.

My lived experience as a carer

I really don’t wish to speak about my mum now that she is gone, so I’ll make a general point, but like many my view of dementia is not only informed by my academic and professional work.

As an unpaid family carer, I am the living proof of walking the walk as well as talking the talk. In no way do I feel that residential care homes are ‘second best’. But I proved that it was possible for mum, with extra help from paid carers, to live at home.

This was of benefit to me – and of benefit to mum.

I am concerned that if my mum had gone to a care home, forgetting for the moment the dangers of being there during a coronavirus pandemic, she might have found it quite distressing with few people speaking her dialect of Bengali; nor having a familiar face everyday,

Dementia is a very isolating condition. The social network comprising friends and family can contract. For example, I could not ever find any Bengali befrienders. She hated strangers anyway, not uncommon for someone with an advancing dementia. n our case, her brother in law never spoke to her again.

I walked the walk and talked the talk. ‘Home first’ was not just a blogpost or a commissioned piece of work for me. I looked after my mum after her episodes of delirium, when many such individuals would have found themselves in a care home or nursing home.

There are few people who believe more than me about the importance of empowering and engaging anyone – not just people with dementia though.

The importance of having everyone in the room and ‘dementia rights’

There comes a time in anyone’s dementia ‘journey’ when you need also to listen to carers. It is not acceptable for large dementia charities to have panels of people with dementia but none with carers. As people with dementia lose their ability to communicate, they need people they trust and form attachments with to represent their interests accurately.

Prof Edgar Khan, a civil rights activist and lawyer, one of the eminent first movers in co-design and co-production, often used to discuss people who were missing. People should ask when they talk about ‘listening to people in the room’, who’s missing from that room?

One can ‘knock’ expertise all one likes, behind experience, but some issues about the jurisprudence of human rights remain.

Human rights do not appear in isolation. They tend to be reciprocated with opposing points of view. This is not unusual. Take for example a woman who is raped and is forced to deliver a child because no abortion is legally available.

A person with dementia might want the ‘right’ to walk off at 3 am with her handbag, having opened the front door. The reason for protecting her is to stop her being found as a missing person at 5 am having died of hypothermia.

Individuals with dementia also get ill. It won’t surprise you that they represent a large proportion of the older inpatient population in any hospital.

Dementia care should prioritise safety and psychological warmth. Carers should also be in a place of psychological safety.

People like me with substantial lived experience of being a carer, rather than academic expertise in dementia over 25 years from my Ph.D. in dementia at Cambridge, need to listened to – like everyone else.

NHS Continuing Healthcare exists to look after the multiple complex health domains of persons, including communication, mobility, eating, drinking, cognition, psychiatry, skin, breathing, and so on.

Conclusions

Nobody is wanting to deny ‘living well with dementia’. A much more sensible phrase is ‘living as optimally as possible’.

And the extreme argument that it being ‘relentless suffering’ is something which nobody has argued.

In a market driven economy, you can push a business model so far. But silencing the voices of people who want a level playing field, rather than special treatment for certain individuals, is not a good way to progress.

One can take the rather totalitarian and aggressive leadership approach of ‘if you don’t leave it, you can leave now’.

Above all, the phrase with me rankles because it is so inherently divisive. It really does seem to divide those proponents of ‘living well with dementia’ with those whose caring experience is one of burnout, exhaustion, mental anguish but considerable reward.

We should all benefit from an atmosphere of mutual tolerance and respect.

Arguments over whether it is right to refer at any time to ‘suffering’ are not a way to win friends or to influence people. Society is quite divided enough as it is.

Just. Saying.

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 Labour Party should be really inspiring people at this moment. That it isn’t is a cause for concern.

As he lives ‘rent free’ in too many people’s heads, I will just say it. For some, Jeremy Corbyn provided ‘hope’ from the previous Labour oppositions, in offering a fresh portfolio of policies ‘for the many not the few’. In contrast, the first few weeks of the new Tory government, under the leadership of Liz Truss, have a feeling of ‘for the few not the many’. Technically it was a ‘fiscal statement’ not a budget, because there was no official scrutiny from a Select Committee or no analysis from the Office for Budget Responsibility, but it was effectively a massive Budget affecting borrowing and spending. Truss does not even command a majority within her own Party, let alone the Conservative Party. The fact that Sir Keir Starmer has arrived in Liverpool with not much other than the usual bunch of client journalists and Starmer cling-ons noticing is a bit striking. Even the tweets, normally accused of being in an ‘echo chamber’, amass at most four of five likes or retweets. This does not feel like a ‘government in waiting’. This doesn’t feel like a ‘mass movement’ – take in contrast the energy exhibited by Mick Lynch and Eddie Dempsey, who are arguing ‘Enough is enough’. This feels like a Labour opposition with a very dull leader with an equally less inspiring range of policies expecting to win power after the Truss administration predictably implodes.

There are so many aspects which the Labour leadership chooses to ignore. They simply do not argue against anything, making the life of people who actually want a Labour government difficult. Mark Littlewood, director of the Institute of Economic Affairs, said unashamedly, ‘This is not a budget for the poor’. Indeed, that is factually correct. There was nothing on income tax thresholds or helping people on benefits to survive the cost-of-living crisis. More tangible is the massive tax cuts to the very wealthy which will allow some people to buy second or third homes, especially with the new arrangements in stamp duty. This is not solving any housing crisis, just making rich people richer. Labour does not want to be branded as the ‘party of the poor’, which is a paranoid hang-up from the Kinnock era. More worryingly, it doesn’t want to be seen as a Party supporting members of the Unions. Strikes are not called by ‘Union barons’. They are called for by members of the Unions who feel that they are unable to cope with the real-terms pay decreases over many years, while others are making unconscionable profits. The unpopularity of the Very Black Friday was seen in the Pound Sterling imploding on the international markets from 1.50 to 1.09, meaning that the cost of borrowing for the country exploded. Labour has not mounted any narrative or opposition at all on ‘balancing the books’. It has not even taking the song out of the 2010 Osborne/Cameron playbook of the ‘deficit’ which even to last week a Tory MP was not blaming on American securitised loans but on Gordon Brown. One can fully expect that the Bank of England to introduce an emergency interest rate rise, because of the imploding pound sterling, meaning that many home-owners will be at risk of repossessions due to defaulting on their mortgage.

It is striking how Labour does not want to address racism within its own party. Antisemitism still exists, and nobody can condone it. Even a Jewish elder lady was suspiciously suspended from to the NEC under circumstances reminiscent of former allies of Putin ‘falling down the stairs’. It is not so much that Starmer cannot even fill a small room in semi-detached house, let alone have people queuing around the block for him. It’s not that. His speeches sound wonkish, like the closing statement in a barrister’s appearance. Sometimes they sound like a ‘tour de force’, like set piece establishment statements. Starmer by any account is not an inspiring leader. When he first came to power, on the pledges all of which he subsequently broke, Dame Margaret Hodge went onto Newsnight for the new era of ‘decisive leadership’. The problem is that there are many good people who are not anti-Semitic, but who cannot support the current Israel foreign policy. Such supporters are to be found within Labour, and do wish to support muslims in Palestine. Labour must not be racist in any form. The issue about how Labour has not personally supported the individuals who supported Jeremy Corbyn is worrying, and the impact of this cannot be underestimated. It could easily cost Labour the election. Twitter is not ‘real life’, but the anger is palpable. The Labour Party had a perfectly good opportunity through the Forde Report to discuss the unconscionable manner taken to the Corbyn party machine. They didn’t. The boil wasn’t lanced. This will therefore rumble on for a long time.

That is not, however, the major obstacle to Labour forming the next government. There is no ‘love’ for a senior Tory politician, laughing as if he is high on cocaine at a national funeral. There is no love for any scope for illegal insider trading when market sensitive information leaks out, making the life of ‘patriotic’ traders who want to short the pound easy. We know the government leaks like the worst sieve ever made. As many people despise Johnson as ‘love’ him. Labour will not even talk about the elephant in the room, Brexit. Anyone who has worked in international business knows that the rules about origin of supply and supply chains has made International trading extremely onerous. You just have to read the papers to see another Brexit disaster daily. The balance of payments deficit will be so catastrophic under Brexit that it will be very difficult to ‘make Brexit work’ – there will inevitably be a nuclear option like joining a single market. The Northern Ireland protocol is already falling apart, and freedom of movement is being destroyed in a piecemeal way as sectors have to impose emergency measures to apply workforce supply in certain sectors.

One such sector includes the NHS and social care. Tory Peers, whose only claim to fame is that they have donated so much money in the past they are now in senior positions in universities, wade in with unevidenced bullshit about reducing demand in the NHS and social care by good ‘prevention’. This Trumpian bullshit has got to stop, along with all the unevidenced ideological extremism from ‘Britannia Unchained’ on steroids. We now have lobby groups, with their opaque funding, not only affecting policy but their personnel at the heart of the new Government. The number one problem is the workforce crisis, with the ambulance delays and GP working conditions a close second. These issues have not appeared out of nowhere. Unfortunately, there will be some who cannot bear to listen to what Wes Streeting has to say, and he doesn’t say much anyway, because of the vile comments he has made in the past about Jeremy Corbyn. The same holds for Jess Phillips, unfortunately.

The ‘woke narrative’ is not challenged at all. Take for example the trope that the Police are ‘too busy’ break-dancing in rainbow colours than to fight crime. The reality is that under ‘austerity’ (another Tory-induced crisis), police numbers went down from 180000 to 140000, and were never improved. The ‘police’ were in fact mis-reported. These people were ‘community support officers’ whose job is in fact to act as the go-between between the Police and the public. If ‘woke’ means ‘social justice’, we can all see the direct aim of the far right to ‘toxify diversity’. It is politicising diversity, equality and justice in an altogether false information way. These lies are nothing new – like ‘leaving the European Union will allow us stronger environmental protections and employment rights’. The exact opposite is true. All this goes completely unchallenged by Labour. The huge and increasing number of dinghies appearing from across the Channel is directly due to the fact we have no reciprocal arrangement with France, as a result of Brexit, due to departing from the ‘Treaty of Dublin’. Not helped by Truss’ ‘friend or foe’. Another issue not called out by Labour, for fear of offending Brexit supporters.

I had voted Labour all my adult life from 1992. to 2019, mainly as a reaction to Thatcher. This is far worse than Thatcher. This feels like a corrupt, immoral Ponzi scheme gone wrong. It is nonetheless true that it is ‘not in the bag’ for Starmer, unless Starmer delivers a miracle on key planks of policy. The Conservatives might, despite everything, win a record fifth term in Government. And they won’t be able to thank Jeremy Corbyn for that.

Our new special interest group on #neurodelirium launches this week at the American Delirium Society

We’re launching “Neuro-Delirium”

Thes is brand New Special Interest Group. Feel free to contact Shibley or Heidi who are officers of this group. They are on email and on Twitter.

Our exciting new group will participate in a number of activities. Virtual meetings with speakers on relevant talks, face to face meetings when possible, podcasts, a new book on the cognitive neuroscience of delirium with foreword by Prof Sharon Inouye, a Twitter account and new research collaborations.

We are aligned as a group with the mission of the American Delirium Society, including improving delirium care and providing educational resources. We also wish to promote inter professional support.

The conference timetable is busy.

We know that the delirium field is fast changing. Here is the index of DSM 5 TR.

We are proud of amazing ground-breaking research being presented at this conference.

Above all we wish to have a conversation. Can we get a marker for aspects of delirium like periods of lucidity? Maybe the diversity of symptoms can be explained by changes in network connectivity.

Heidi Lindroth herself did an electrophysiological study of post operative delirium. And basic science results may one day herald the introduction of new treatments. Mark Oldjam’s model provides, for example, testable hypotheses.

Esther Oh and colleagues have mapped out a roadmap for progressing delirium research.

We need collaboration. We need agreement on definitions and operationalisation.

One day personalised medicine may be possible.

Can we have an evidence-based method for assessing outcomes?

What does severity mean?

We might be able to bring it all together into understanding the resting neural networks and delirium biomarkers, and the meaning of big data.

Here are three examples of the need for further inter-professional exploration.

Consciousness. There are many neuroscientific models of consciousness, and yet hardly applied to delirium. What does lucidity mean for example?

We also need qualitative phenomenology, linking the symptoms to the lived experience pf patients and carers. There is for example brilliant existent research on delusions. But we do really need to hone in on culture fairness and the validity of the trans diagnostic approach.

Take for example translation. Are the animal models comparable to what we see in humans? Are structures directly comparable such as the blood-brain barrier?

There’s great stuff from the Terrando lab.

And of course there are the neural networks, requiring greater scrutiny for the cognitive neuroscience of delirium.

The default mode network can tell us about Self, insight and anosognosia. The frontoparietal network links in directly with attention, and our awareness of the environment

We have had our new special interest group approved.

If you wish to support, chat with Heidi right now. Welcome to Indianapolis! Thanks for listening.

Meaningful learning for the SCE geriatrics from JRCPTB: more than meets the eye

“Geriatric Medicine: 300 Specialty Certificate Exam Questions” (CRC Press) by Shibley Rahman, Henry J. Woodford, pub. 13 August 2021

https://www.routledge.com/Geriatric-Medicine-300-Specialty-Certificate-Exam-Questions/Rahman-Woodford/p/book/9780367564001

I have an interest in geriatric medicine at a very tangential basis, mainly through being a full time carer for a loved one with frailty and dementia, and having done my Ph.D. and postdoc in Cambridge and London in dementia and movement disorders.

Latterly, as respite for me, I have been doing a Masters in medical education at the University of Nottingham, where I have been taught by somebody I have respected for a very long time as a geriatrician and a medical educator, A/Prof Nicola Cooper, herself a geriatrician in Derby. We have just completed our PGCert module in the practise of learning and teaching, and one of the core themes is how people meaningfully learn skills and knowledge situated in their setting and according to their backgrounds. In relation to this, I hope to go the ASME conference in researching medical education here in London later this week.

The schism between the practise of medicine and the esoteric book work can be enormous.  Dr Henry Woodford (woodford_henry) and I (dr_shibley) decided to write a book of questions for the specialty certificate examination (SCE) in geriatric medicine. Every time I publish a book, I promise to myself that I will never write another one. This one is no exception. I have vague recollections of negotiating the book contract, right up to getting shotgun demands for proofreading.

The SCE, set from the Royal Colleges of Physicians, it turns out, is nothing at all mysterious. The material is what you would expect a trainee to ‘know’ from the Joint Royal Colleges of Physicians Training Board (JRCPTB) curriculum in adult and geriatric medicine. After a while, you get to know what the favourite exam topics are on the MRCP(UK) anyway, and the format of the SCE follows the MRCP(UK) Part 2 written paper, i.e. the single best answer (SBA) format. The SCE is set in various medical specialties, and, after a while, you get to know that the mode of action of denosumab in osteoporosis or the evolution of Charles Bonnet syndrome from macular degeneration are ‘starters for ten’ in the geriatrics test, in as much as opsoclonus-myoclonus syndrome and Fabry’s disease are ‘starters for ten’ in the neurology test. There is overlap between some of the testable material, for example questions on the time window in thrombolysis or thrombectomy wouldn’t appear out of place in both the SCE geriatrics or SCE neurology.

Actually, neither Dr Henry or I have any involvement with the exam, which is why we can come to this book with “clean hands”. Having listened to various talks on this assessment over the years, I get the impression that nobody is trying to ‘trick’ anyone. I can say from writing hundreds of questions for this assessment, it is far more hassle to write a deliberately misleading stem. In terms of preparation, it’s definitely worth doing the practise questions on the BGS website (members’ area only), and getting a feel for the SBA format. There are also sample questions for other specialties, such as acute medicine, or diabetes and endocrinology, which can be quite fun to look at.

Preparing the book gave me a chance to look at what was current across the whole curriculum. The “blueprint” is helpful in establishing the approximate weightings of subject areas, but it soon becomes obvious that some topics such as frailty, deprescribing or movement disorders can straddle various parts of the blueprint. Writing the questions is much harder than it looks, and I really feel the pain of those people who ‘standard set’ for real for the College. I hope though that you find the book from me and Henry fun. Consider it like a glorified pub quiz in geriatric medicine, and you’ll get a gist of the random nature of some of the knowledge. The vast majority of it is what you would want your geriatrician to know though, we hope.

Dr Shibley Rahman, @dr_shibley

THE SPECIALTY CERTIFICATE EXAMINATION IN GERIATRIC MEDICINE

Our book of 300 single best answer questions suitable for the level of the ‘Specialty Certificate Examination’ will be published next month, on August 13th 2021, from CRC Press.

It’s important to note that neither I nor my co-author Dr Henry Woodford have any idea what is in the actual exam. We have never sat it – so we can’t pass on similar questions to the actual question bank.

The examinable content for the specialty certificate exam (SCE) derives from the ‘knowledge’ part of the curriculum for higher specialist training is set out in the JRCPTB curriculum, which is currently being transitioned into a new updated form. It is, however, possible to work out what is ‘hot’ in current geriatric practise in the UK from blogposts, position papers and other teaching material such as the practise papers for the SCE provided by the British Geriatrics Society, recent guidelines from NICE or SIGN, guidance from the Royal Colleges of Physicians (for example the London college). It is also possible to get a feel for latest developments in geriatric medicine from the published literature, for example in the BMJ or Age and Ageing. A number of excellent websites also exist to help in exam preparation, including for the MRCP and ‘PassGeriMed’.

There’s plenty of guidance on the format of this assessment. The blueprint of the papers is published, so that you know roughly what the weighting is across topics. Whilst some geriatrics topics such as deprescribing, frailty or movement disorders are not easily obvious from the blueprint, it’s clear that it’s impossible to do well in the exam with a poor knowledge of general medicine, osteoporosis and orthopaedics or cognitive impairment (dementia and delirium especially, rather than disorders of consciousness which is the approach in SCE neurology).

And it’s possible to ensure that the exam is set at the appropriate standard. There is an expert standard setting group which is able to use state of the art statistical methodology. Also, there are safeguards, for example osteoporosis is also examinable in the SCE endocrinology and diabetes, and dementia is also examinable in SCE neurology. Whilst the specialties retain their own professional identity, the guidance for the setting of the ‘single best answer’ (SBA) questions remains consistent. SBA remains a gold standard for both undergraduate and postgraduate exams, and there is rigorous scrutiny of how the questions are drafted, the number of options provided, how options are randomised, and so on.

Certainly writing the book has made me realise how difficult it is to set the exam in reality (which neither me or Dr Henry Woodford do). The actual questions we’ve included don’t matter, but the reading around them is interesting, we hope.

@dr_shibley