Community Hospitals Association Challenging Times Improving the experience of dementia care through community hospitals
Friday 13 May 2016 : 1.50 pm
Dr Shibley Rahman, Fellow of the England Centre for Practice Development, Canterbury, UK.
There are about 800,000 people living with dementia currently in the UK. With no effective longlasting treatment as yet, the policy in England is focused as in many jurisdictions from a perspective of living better with a long term condition. A major flaw in English policy, however, is the lack of real substance to the notion of ‘post diagnostic support’, and I will argue that a better approach will be promotion of people living with dementia as far as possible with independent lives. There is an universal entitlement to health, and for me community hospitals are crucial in offering local, personal, care. There is now an overwhelming case for people with dementia to receive right care in the right place, at the right time, in the right way. Lessons are nonetheless to be learnt from how dementia care is delivered in acute large centralised hospitals, though this type of care is important too.
Much can be done to improve the overall experience of dementia care through community hospitals. I will explain the rationale behind ‘dementia friendly environments’ as a genuine success in contemporary English policy. I will also draw attention to the need to reduce inappropriate antipsychotic prescribing, the need to care for carers, and emphasise how specialist nurses in the community are especially important for continuity of care and palliative care approaches. I will draw attention to signposting the critical need to “reframe” post-diagnostic care in English policy as through ‘enablement’. I will explain why is particularly timely with the development of ‘new models of care’, and worldwide initiatives such as Buurtzorg. I will conclude with the need to promote “rights”, in relation to community based rehabilitation, and why I feel an expansion in capacity of community hospitals is so essential now in English dementia policy.
An ignorance of what to expect in dementia can be very distressing. Forewarned is forearmed.
I am generally not in favour of aggressive war analogies in the context of dementia, by, say, when you’re overcoming flu, your immune system does launch an attack on a foreign species. You talk about ‘fighting the flu’. Therefore, you can defeat flu.
The problem with the analogy for dementia, however, is that you rarely hear of people who have won their fight against dementia. Defeating a type of dementia is not an unworthy aim, though.
If you do, however, decide to extend the military metaphor for dementia, then there’s no doubt for me that, as attributed to Miguel de Cervantes, “to be prepared is half the victory”.
About 16 years ago to the day, I started my Ph.D. up in Cambridge. I would visit families with dementia all around East Anglia, and do some specialised psychological assessments of areas such as memory or planning in people living with the then-called ‘frontal variant’ of frontotemporal dementia.
I came to focus on decision-making, and I found that risk taking was a much under-recognised feature of people with a type of dementia known as the behavioural variant of frontotemporal dementia, whose calling sign is quite an insidious change in behaviour and personality. This is highly relevant to personal budgets in social care, and also development of therapeutic targets (taking in work in the related area of impulsivity.)
Now, it is known, not thanks to me but thanks to a handful of specialised laboratories around the world, that your genetic blueprint you’re born with can be traced to various well defined categories of frontotemporal dementia, a type of dementia that affects the frontal and temporal bits of your brain. (They’re the parts of the brain right at the front and near your ear respectively.)
Bring the clock forward to 2016, and we now have quite a good idea of tiny parts of the cell, the basic unit of the human body, called “ribonucleosides” which seem to act funny in some of the frontotemporal dementias. This is, of course, significant as this gives us leverage to attack the dementia process – like looking for the weakest link in the enemy army.
I didn’t go to Cambridge last year. In fact, I had not been to Cambridge for a decade until recently when I was invited to give a talk on risk and dementia at one of the Cambridge Colleges.
I instead went to Australia with Chris Roberts, his wife Jayne Goodrick, and one of their daughters. Chris is presently living with a mixture of vascular dementia and Alzheimer’s dementia. Visiting Ayres Rock was my personal highlight.
Again, it’s the case that very bright researchers have worked out that changes to the blood flow around the brain can somehow lead to a process of dementia. It’s well known vascular changes in the human body can be brought about by a whole host of factors such as diet and smoking – this again gives a means of preventing the rate of progression of an enemy army.
Knowing the plumbing of the human brain can therefore very relevant to working out how to stop the rate of decline in dementia. How well blood flows in the brain is closely linked to the health of the brain through a process called “neurovascular coupling”.
When you think of the size of the numbers of people around the world living with dementia, close to 50 million, this leaves you with two options. One is to give up altogether; the other is to build up bit by bit a detailed working knowledge of the dementias.
I know Chris, living with dementia to the best of his ability, and in an environment which can be optimised as ‘dementia friendly’ as possible, works relentlessly to campaign for recruitment into research in dementia (“Join Dementia Research”).
Working out how factors in the circulation might be progressing in Chris’ dementia would be a wonderful thing to know, and provide much greater precision for a possible therapy one day for people who have the type of dementia Chris has.
The aim of research into dementias is to gather this detailed knowledge, pool it together and share it, and think about how best it can be used to promote and protect the health of citizens. Research is an investment which is inevitably very costly due to manpower and consumables.
Nonetheless, the next step is to make sure the right mood music (and money) is in place to convert this knowledge into something meaningful for a person living with dementia. The regulatory infrastructure of course around the world needs to be able to responsive and responsible to such innovations.
I wish Chris well as he helps to launch next week’s Research Conference for Alzheimer’s Research UK up in Manchester, where other brilliant initiatives such as ‘Dementia United’ providing devolved joined up health and care services for dementia are also afoot.
Anyone involved in research knows it’s a marathon not a sprint; and most researchers I know know they’re in it for the long haul. But we can only get more detailed knowledge as, in other areas, we have a strong, high capacity, workforce making use of all available specialist talent.
You see, none of us know what the future will bring. Anything can happen to anyone at any time.
The UK, being the sixth richest country in the world, is an unique position to do this. The travesty is that social care is on its knees, and this is a painful truth for many people trying to live with dementia presently. And this needs correcting.
The future, on the other hand, might be brighter, if not necessarily orange.
Idea concept with row of light bulbs and glowing bulb
I think the worst aspect of the term ‘innovation’ is the term itself. For me, it more often than not conjures images of gimmicks and the snake oil salesmen of these gimmicks.
But there’s a certainly a place for ways in which people can be motivated to take an interest in his or her own health. There needs to be, nonetheless, an informed debate; for example, a healthy “health check” is no guarantee that you won’t succumb to some malady within a few years time.
I’ve known people to run a full distance on a cardiac treadmill in a hospital, with no monitored changes in heart function, only to drop dead seconds later in the hospital car park.
Nonetheless, most definitions of innovations are quite broad, and are generally doing things differently or doing different things.
It’s often said by physicians that the vast majority of a reliable diagnosis can be taken from a good history of symptoms. That I believe to be supremely the case for dementia.
I am not going to bombard you with the predicted million people living with dementia in the UK, as quite frankly if it’s your mum living with dementia that should be good enough for you to take an interest.
The question, “Have you had trouble with your memory?”, is likely to engender a lot of false positive responses as a diagnostic screening tool for dementia. A better one would be possibly, “Have you had trouble with memory but feel that your mood has been quite good?” But even this question would not be ‘fool proof’ as people can live with both dementia and depression.
There is a good ‘push’ argument against supporting a status quo in the current approach to dementia. That is, it is overly reliant on a medication solution, when the vast majority of drug research work in this area has resulted in failure. This ‘promissory hope’, of “one last push”, is needed to keep the general public engaged with this mission, and certainly helps the surpluses and profits in the short term.
Indeed, many of the arguments for ‘barriers to innovation’ can cut both ways. For example, it might be the case that in these economic challenging the times the last thing you’d want to do is to take a massive punt on redesigning diagnostic care services for dementia. Or, on the other hand, you might take the view that there’s nothing to lose.
The need for innovations to be ethical and accountable has become increasingly important under the umbrella term ‘responsible innovation’. Not all dementia is Alzheimer’s disease, and yet we are led down the Alzheimer’s path continually by the media. If there were a ‘biomarker’ for Alzheimer’s disease which was very specific and sensitive, and inexpensive to get the results of, would this information help you?
The answer is possibly – but if this were coupled with a private insurance system, you could also find your insurance premiums going through the roof, even if you were to have forty years of healthy living ahead of you.
Certainly the more expensive the investigation doesn’t make it more fool-proof. I’ve known patients with a clear diagnosis of frontal dementia who’ve had plum normal investigations including state of the art MRI scans. And likewise people with radiological atrophy on MRI who don’t have dementia.
I see innovations in dementia as a tool in dementia diagnosis, support and care, but only if used responsibly. Otherwise more noise can be added to the signal, as was clearly the case for incentivising primary care to run case finding tests for dementia. The very predictable unintended consequences that the number of false positive diagnoses of dementia also shot up, although ignorance is possibly worse than fear.
Ask any corporate strategist about the future and he or she will always tell you some of it is about turning threats into opportunities. For me, if you cut through the shill and waffle, an intelligent way to redesigning dementia care isn’t a bad idea, even if I would not necessarily start from here.
This is the talk I will be giving for #WHIS16, the World Health Innovation Summit in Cumbria, on innovation as a societal response to dementia.
Err… since this photo was taken in the Hotel Adina, opposite the conference centre hosting the Alzheimer’s Disease International (ADI) conference for 2014, I have lost a lot of weight (I wish.)
But actually literally seconds before this snap was taken, Kate had said ‘you goose!’ in utter surprise when I suggested to Kate she should turn her roaming charges off. We were, of course, both in Australia, and the country of habitual residence of Kate is also Australia.
I have many happy memories of that conference, though overall I tend to be antagonistic of conferences. Most of the plenary speakers tend to be overwhelmingly underwhelming.
There are of course some exceptional speakers. I always enjoy the updates on Prof Martin Prince on epidemiology of dementia, with a focus on low and middle income countries. I know this is a complicated area, as I am sure Prof Carol Brayne from my alma mater will demonstrate in Budapest for this year’s ADI conference.
Many of the pervasive issues internationally about living with dementia also relate very much to domestic jurisdictions: including research, drug therapies, timely diagnosis, care and support, enhancing health, and dying well.
Sometimes it can be all too easy to become an innocent pawn in massive corporate agendas, which sometimes tragically reveal themselves in slick ads from ‘big charity’, raising money, but pushing stigma of dementia to do so.
I first spoke with Kate over a rather greasy lamb moussaka. Beth was there. Beth and Kate took a mutual interest in what the restaurant had to offer.
I showed Kate the manuscript of my first book expecting her to be wholly uninterested in it: actually, the opposite was the case.
Kate’s background is not straightforward. A devoted mother and wife, haute cuisine chef (trained with the best people in this field), a distinction in dementia care from a world famous University, nurse specialist in operating theatres, volunteer in bereavement counselling, and, of course, keen international speaker on dementia.
I think Kate manages to update her blog every day, and has introduced an unique term called ‘living beyond dementia‘, which sums up a positive and flourishing approach – novel and original – setting aside the negative aspects of the impact of the medical profession in imparting a diagnosis.
Kate was the first person in the world to coin the term ‘prescribed disengagement‘ which was a huge impact in the field of dementia.
As Kate says, “This Prescribed Dis-engagement(TM) sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”
“Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.”
It is all too easy to become ageist about dementia, but it is the case that dementia encompasses conditions of the age which can affect people below the age of 65. Particular considerations for the so-called ‘young onset dementia’ might include how the diagnosis is arrived at, as well as subsequent impact on real lives such as family or employment.
I personally don’t think that academics can have the moral integrity to present the full picture, when what is truly valuable and a scarce commodity is the expertise and lived experience of people living with dementia.
I think it goes further than ‘working with not for’ in fact: it is more of a question of ‘who’s in the room’ at all. I think of the co-production imperative as ensuring there are ‘no more throw away people’ as per Prof Edgar Cahn. This, as Prof Peter Mittler reminded me recently, has a parallel in the inclusivity literature as ‘No one left behind’.
And above all – it is clear people having had a diagnosis of dementia feel great comfort from the experiences of other people in similar circumstances who have reconfigured their lives accordingly. Indeed this should be the analogous to how people with physical disability are given ‘reasonable adjustments’. Whilst reasonable adjustments is a rather legalistic clunky term, it is an aspect which has been seriously lacking in the drug-focused medical model of dementia.
Kate Swaffer, not just living with a dementia, has an important narrative to tell, which is continually evolving. It is totally unsurprising that her being Chair of Dementia Alliance International (DAI), an international stakeholder group for people with dementia, has been welcomed as a huge success by Alzheimer’s Disease International.
It always seems like a marathon not a sprint, and a long one at that. I thought it was unbelievably clumsy that the World Dementia Council, a steering group on world dementia work, did not have a single representative living with dementia currently.
I indeed wrote an open letter on October 13 2014, which is on the DAI website here. I was of course ecstatic when Hilary Doxford, a mutual friend and colleague, was appointed onto the WDC, as documented here.
Kate is a world-class advocate for people with dementia, and, take it from me, a force to be reckoned with.
The timing of speakers for Feb 3rd 2016 is as follows 6-9:30pm
6pm arrival
6:30-45 Zoe
6:45-7:30 Jo and Jill
7:30-8 Julia
8-8:20 Break/food
8:20-50 Shibley
The flyer is here.
There will be pizzas on the night for anyone wondering about food and refreshments will be free – wine, snacks, tea and coffee. That should keep the energy high.
The line up (apart from me) is incredible. I do strongly urge you to come if you’re around and you’re interested in the topic of continuing to pursue research and evidence to better practice. I hope there to be much much engagement and participation for my talk, aimed at qualified social workers or social workers in training.
Please follow the organiser Zoe Betts (@iamsocialcare). Zoe’s motivation for doing this is described here in this excellent Community Care article.
I received this morning my copy of “What the hell happened to my brain?” written by leading international advocate in dementia, Kate Swaffer. This book is due to be released by Jessica Kingsley Publishers on January 21st 2016. I received an advance copy as I wrote one of the Forewords. The other Forewords have been written by Dr Richard Taylor Ph.D. and Glenn Rees AM Chair of Alzheimer’s Disease International.
Kate is Chair of Dementia Alliance International, the international stakeholder group run by people living with dementia. I feel this book will be incredibly useful for a diverse audience, including doctors – especially those completing specialist training in medicine (general medicine, neurology, psychiatry, surgery especially) – as well as members of the public newly diagnosed with dementia.
I know Kate Swaffer held Dr Richard Taylor Ph.D. in very high esteem. I found the chapter dedicated to him, and his Foreword, very moving.
This book is all about living ‘beyond a diagnosis of dementia” – Kate’s phraseology TM. Kate was the first to articulate and explain the phenomenon of ‘prescribed disengagement’ how people at the point of diagnosis are often put into a process of managed decline when they could be given opportunities for an enriched life. This of course goes together with essential practical help, such as things you can do such as driving. It also explodes myths out of the water – and ignites a provocative debate on the ‘big money’ in dementia, disability discrimination, an urgent need to rework the medical label of ‘challenging behaviours’, early vs late diagnosis, stigma, loneliness, inclusion, and guilt.
It’s not hyperbolic, nor puffery, to claim that you won’t be able to put this book down. It’s an outstanding book, and I strongly commend it to you.
I am honoured that the book will have forewords from Prof Sube Banerjee, Professor of Dementia, who co-authored the 2009 English dementia strategy, Lisa Rodrigues and Lucy Frost.
Whilst recent years have witnessed massive progress in dementia friendly communities in the UK and elsewhere, there has also been a greater scrutiny of ‘post diagnostic care’. This book reviews the evidence for enhancing health and wellbeing for people living with dementia, and will be useful for anyone designing, researching or using these services. The quality of residential care settings is intimately related to the philosophy and culture of care, but there is growing recognition that residential homes are part of an extended system of the provision of healthcare including the acute hospital. People living with dementia are entitled to the best standards of health care, for both physical and mental health, but also need their life story and identity to be respected. The book concludes by evaluating critically what features of the healthcare system might be desirable to encourage independent living (including at home) and integrated health, and why palliative care and specialist nursing must be a key factor in the design of care pathways at both a national and local level.
A detailed consideration of end of life care and life story, whilst introduced in this text, is beyond the scope of this book. They are covered elsewhere in detail by future books from Jessica Kingsley Publishers.
Many thanks to Fenella Lemonsky (@organiclemon) for this helpful review of my book in “Mental Health Today) [here is the link to the original article.]
I find reviews like this a useful steer on future work. Academics can be notorious in misjudging the ‘mood music’ of the main drivers behind the service: people who use the services, which in my case are people living with dementia, their friends and family and other carers. I am in a privileged position in having access to thousands of peer-reviewed papers, but also feel that I have learnt a lot about the dementias from people living after a diagnosis. My knowledge of dementia has vastly improved since I took myself away from the medical lens, and adopted a viewpoint of other professionals and practitioners and people living with disability.
Shibley Rahman, 2014, CRC Press, ISBN 978-1908911971, £29.99
There has been much written and spoken about dementia in the media recently as a result of the government’s Dementia Strategy, which aims to help those with dementia, their families, professionals and carers be more responsive to needs.
In this context, Living Better with Dementia, by Dr Shibley Rahman, a dementia expert who is qualified in medicine, neuroscience and law, is highly relevant.
Initially, Rahman talks about the stigma of dementia and how this has remained through the past century, despite dementia becoming better understood and having a more positive outlook in recent years. While dementia and the whole management perspective can appear a challenge as the older population survives longer, this book is encouraging and positive. Specific medication that delays the onset of dementia symptoms and other medication like antipsychotics are discussed at length, including their use in nursing and care homes and how specific practices that have no evidence base can be challenged.
Two chapters that for me stuck out as very important were on young onset dementia and on antipsychotics and innovation. Young onset dementia was first explained to me at the author’s book launch, where nurse lecturer Kate Swaffer from Australia, who has young onset dementia, gave a moving talk. The impact is huge for the individual, their family and peer network as well as professionals. It affects employment, career opportunities and has a huge stigma attached to it as it is still often misunderstood. This is all discussed in the book.
The use of antipsychotics and care homes is also discussed at length. This is an important chapter, especially for those who look after those going into residential care, and it can enable them be on alert to good practice and how to spot where medication is used inappropriately. Antipsychotics use in care homes is a complex issue. In many cases careful use can ease distress and agitation, but there seems to be concerning evidence that there is over-prescribing of antipsychotics where behavioural treatments are more appropriate. Using extensive research, Rahman explains why using antipsychotics needs careful thought.
Other chapters focus on deprivation of liberty, sporting memories, global view and leadership strategies.
This is a well-written, extensively researched, easy to read and important book for anyone interested or working with dementia.
Rating: Highly recommended.
Review by Fenella Lemonsky, mental health service user researcher
Perhaps one of the most overused terms of the century is ‘breaking down the silo’. I don’t know enough about the engineering of silos to comment, thankfully.
I wish to explain in my blogpost here the overall direction of travel for my final book to do with dementia. Like the previous books, it will be heavily guided by the current literature from the brilliant people doing dementia research around the world. This research comes from a number of different angles as usual: looking for therapies for particular dementias, as well as research which is more geared towards economics, law, psychology, or cognitive neuroscience. And crucially the lived experiences – great, good, and bad.
My final book will be on enhancing health in dementia. Health is not simply the absence of illness and disease, and the books will resume the social model of disability not the biomedical model. For my book, I will need to draw on current evidence and guidelines particularly from the medicine and nursing professions nonetheless, but only as relevant to “the big picture”.
The topics will mark a clear departure from my previous books ‘Living well with dementia: the importance of the person and the environment’ and ‘Living better with dementia: good practice and innovation” in some areas. There can be no denying that persons living with dementia in residential homes and at home are also living as part of “dementia friendly communities”.
I am particularly mindful of imminent developments in quality of post diagnostic support from the Alzheimer’s Society, Dementia UK, Care England, Care Quality Commission and NHS England.
Prof Sube Banerjee, Professor for Dementia at Brighton and Sussex Medical School, has kindly agreed to write the main Foreword for my third book. Sube will be joined by Lisa Rodrigues, formerly chief executive of Sussex Foundation Partnership Trust. Joining both Sube and Lisa will be Lucy Frost, clinical nursing specialist and campaigner.
They in fact join a great line up of brilliant people who have contributed forewords to my previous two books: namely, Kate Swaffer, Chris Roberts, Beth Britton, Prof Facundo Manes, Prof John Hodges and Sally Marciano.
The first book was written around the NICE Quality Standard 30 on “Supporting people to live well with dementia”. It was written just after the hugely successful Prime Minister’s Dementia Challenge, which coincided with a strong leadership drive to do with dementia around the world including the G8 and G7 legacy events. Another major event was the one hosted by WHO and Alzheimer’s Disease International in Geneva in March 2015.
My first book had a bias towards English dementia policy. My second book took a much more holistic view, and indeed included two chapters on global dementia strategies and diversity. In my second book, I introduced the importance of integrated care and whole person care in ‘seeing the person, not the dementia’.
In my third book, I will need to come back to recent service innovations in England, including the ‘vanguards’ and the ‘new models of care’. There is however a tendency though to be attracted to the ‘new and exciting’, and not to give proper scrutiny to on-running threads in policy.
It is going to be necessary to refer both to the developments in England’s policy, including also developments in system redesigns offering better value and system leadership, in my third book. I would also like to draw on best practice from other countries, for example the Alzheimer Society of Ireland’s anti-stigma campaign, or Scotland’s ‘Focus on Dementia’. The lead given on person-centred dementia care by ALLIANCE Scotland will be reflected.
There are a number of workstreams in Europe which are particularly relevant to this third book. I wish to address fairly addressing the health needs of persons living with dementia, whether in care at home or in a residential setting (such as a care home or nursing home). I should like this book also to retain the strong human rights theme developed in book 2, with discussion of how the UN Convention on Rights for Persons with Disabilities could be applied for dementia around the world.
My hope for the third book, like the previous books, will be that the content will be quite generic. It is hoped that I will showcase some of the outstanding work that has recently begun to emerge in journals and at conferences. I myself have been to, and spoken at, a number of conferences in 2015. This has been enormously helpful for me in weighing up the ‘hot topics’ for my book.
Quality of care is the overriding theme of my book. In keeping with parity of esteem, I wish to address aspects of mental health in a wide context (e.g. insight, effects of sleep hygiene, anxiety and depression) on a par with physical health (e.g. infections, frailty, fall, fractures).
I introduced rehabilitation and recovery in book 2, and I wish to elaborate on this work in discussion of life story, reminiscence, cognitive stimulation therapy, and wider approaches.
I wish to look at the overused phrase ‘meaningful activities’, and to think about the place of these activities in both care at home and in residential homes.
I will look at the importance of relationships not only between residents and others to improve quality of life and care but also between staff to improve leadership and staff skills. I will also consider intimate relationships and sexuality, and spirituality.
All patients in all care settings in this jurisdiction are entitled to the best standards of NHS and social care, and certainly free from abuse and neglect. Intelligent use of technology is paramount for integrated care, including electronic health records and mitigation against prescribing errors. Many persons with dementia live with important co-morbidity, and technology is an important consideration in self-management.
For an integrated health and care system to work, persons with dementia should attend acute care only when necessary, care transitions should be facilitated as should patient flow and appropriate use of other healthcare settings. Careful case management including dementia advisors, dementia support workers and clinical nursing specialists, will be extremely important.
I intend to devote a chapter to end of life, particularly drawing on high quality research from palliative medicine. I wish to consider advance care planning, difficult conversations, anticipatory grief, reactions of residents, place of death, end of life in residential care, and dementia as a terminal disease.
Finally, it cannot be assumed that all persons living with dementia ultimately wish to live in a care home. Therefore, I will consider care at home, respite care, living alone with dementia; as well as possible future developments in extra care housing, smart homes, and the implications for the ‘aging in place’ policy strand.
I am hoping to cover this all in thirteen chapters in about 300 pages. I do not wish to promote any particular chain of care homes, but I would like to provide case studies of great practice. It is my intention to continue consulting as widely as possible. As regulation is a pervasive theme in this book, I intend to meet up with Andrea Sutcliffe from the Care Quality Commission. I also intend to liaise closely with people who have experienced the services in different regions of the UK including Wales, through, for example, voluntary sector organisations such as Age UK.
Thanks to Nigel Ward for organising this year’s programme, and to my co-presenters Marion and Maggie who presented their books on personal life experiences of caring in dementia. I strongly commend these books to you; “Have you seen my daughter?” and “The Gift of Alzheimer’s“.
A recording of my talk is provided here. Thanks to Gary Marsh (@mistersquash) for recording it on an iPad; please note that the concourse of the exhibition is very noisy, so there is inenvitably a lot of background noise despite the excellent sound system.
I greatly admire Angela Rippon for promoting policy issues in dementia, but especially in inter-generational education of living with dementia.
This of course is a key policy plank in England and around the world; like ‘women and dementia’ (the 2015 report on this from Alzheimer’s Disease International was launched at the Alzheimer’s Show yesterday.)
Prelude
Any individual’s wellbeing is more than their interaction with health and care systems. Wellbeing is not simply an absence of ill being, and many factors are known to determine one’s health in the social strata such as housing and transport.
Many phenomena are not just physical buildings, such as hospices or care homes, and it is now being increasingly recognised that they act as community hubs in the wider community. It’s become ‘acceptable’ to celebrate very good care, and is in fact now being strongly encouraged in national policy to promote good practice. All too often boundaries can get established, creating distinct silos; sharing is “king”, but secrecy can be fatal. Even regulators are taking on the mantle of trying to advance promote good care, as well as identifying when things have gone wrong.
It’s easy to unappreciate the potency of a number of different separate strands which have converged on the potential of ‘living better with dementia’. These include, for example, developments in the law, such as safeguarding under the Care Act to mitigate against neglect and abuse, initiatives to encourage ‘integrated care’ such as the ‘Better Care Fund’, the recent public health initiatives to increase knowledge about dementia in the public (“Dementia Friends“). Also, instruments in international law, such as the United Nationals Convention for People with Disability, have set the weather, in the way that, say, the Human Rights Act, possibly about to be repealed, might not.
But troublesome faultlines remain. For example, NHS spending is notionally being ringfenced, despite increasing ‘demand’ , but social care funding has not. The budget for Health Education England is substantially more than for Skills for Care, for example, reflecting different institutional priorities between professionals and practitioners perhaps.
When somebody receives a diagnosis, it’s invariably their friends and/or family who also deal with the diagnosis as a “team effort”. While the actual disclosure of dementia can be suboptimal, and here we need to be particularly mindful of success of people from different cultural backgrounds and with learning difficulties in obtaining a diagnosis, sometimes post-diagnostic support can be diabolical.
It might be a question of knocking on various doors, such as hospital services, or social care, but without proper care coordination, the system may present itself as a higgledy piggledy mess. Whilst research into better treatments is clearly for the benefit of society, we have to be realistic about we can achieve; we are unlikely to achieve ‘a cure for dementia’, in the same way that progress for the cancers, in treatments producing virtual remission, has been piecemeal across the years.
Progress is nonetheless being made, not least in identification of key issues. For example, people presenting with younger onset dementia often are testament to the notion that dementia’s not only about memories; some persons with ‘posterior cortical atrophy’ get driven round the houses seeing opticians for their complex visual problems, before seeing a cognitive specialist.
Above all in policy, we do need to learn from each other, and top of this must be the living experience of people living with dementia and those who find themselves in a caring rôle, often relatively underreported with little formal introduction from training. There’s been a lightbulb moment in policy, where it’s been OK to acknowledge that there’s space for all of us; for example, dementia advisers do different things to dementia support workers, or clinical specialist nurses. Not everything is clinical (indeed the policy drive has been to rely less on drugs where drugs are inappropriate). Different parties have different expectations, such as in the education and training of others, ability to enable and protect carers and people with dementia with coping strategies, or attention in specialist areas such as end of life.
A system oriented at wellbeing necessarily expects you should look at what people can do, rather than punish them for what they cannot do. I myself am now physically disabled, so the idea of reablement and rehabilitation is one I philosophically enrol to. And such an approach has to be joined up; and personalised. We all prefer have own clothing tastes, reflecting our experiences in the present and future. You’d never embark on making people all dress the same; so therefore an approach which totally disregards personhood is now totally unacceptable.
We’ve come a long way, but I can’t emphasise enough how I feel ‘experts by experience’ must be in the driving seat in service design, even including ‘new models of care’ and research priorities. These issues are not easy, often controversial, but I feel strongly we should not “shy away” of confronting them.
Remarks about this title
‘I congratulate Shibley on writing a book that brings together so many of the challenges facing people who are living with dementia, their families, and professionals from many different disciplines, and takes them forward in a critically thoughtful way. This is a book that truly points the way to a future where living better is a reality for everyone affected by dementia.’
– Beth Britton, Freelance Campaigner, Consultant, Writer and Blogger
‘This new book is an immaculately researched guide to living with dementia in England in the 21st century, covering the subject from policy to lived experience, but always with consideration and compassion. There is no better introduction to the challenges and complexities that dementia brings to individuals, families and society.’
– Geoff Huggins, Director of Health and Social Care Integration, Scottish Government
‘This book is informative and challenging in equal measure. It not only provides a thorough analysis of the issues currently facing dementia care, but it also offers a refreshing and thoughtful critique of the many challenges. Each chapter carefully combines research evidence, practice issues and policy influences, and contextualises these within the experience of those living with dementia, including their carers. Whilst this book is complex and thought-provoking – I believe it is a highly welcome counterbalance to current thinking on how to improve the lives of all those who are affected by dementia. It will force the reader to challenge their own thinking about dementia, not just as an illness but as a social construct, and as such I would highly recommend it.’
– Rachel Thompson, Professional & Practice Development Lead for Admiral Nursing, Dementia UK
‘Shibley Rahman follows his first brilliant book on dementia with this fascinating publication, containing insight and empathy in equal measure. This book will help readers – health professionals and the public alike – to understand people in their lives with dementia, guiding you through everything you ever wanted to know about dementia and could possibly want to ask. Shibley guides you through the challenges of caring for people and living with dementia. He doesn’t shy away from the topics that are uncomfortable, but he also gives space to examples of good living and practice that leave the reader with hope and positivity.’
‘I commend Shibley for this valuable addition to the current thinking and discussion on what it is to live with dementia. This text builds quite significantly on his original work and continues to challenge professionals on issues of importance for families affected by dementia. I find his frank and open style refreshing, unreserved in his willingness to question both the semantics used in practice and assumptions that are too easily made on what it might be like to live with dementia.’
– Karen Harrison-Dening, Senior Fellow at Institute of Mental Health, University of Nottingham
Other information
Living Better with Dementia: Good Practice and Innovation for the Future
Shibley Rahman (forewords by Kate Swaffer, Chris Roberts and Beth Britton)
The Amazon page (yet to be fully updated) is here.
What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia?
Adopting a broad and inclusive approach, Dr Shibley Rahman evaluates critically existing dementia policy. He tackles head-on current and controversial challenges at the forefront of public and political discourse, such as leadership, access to services for marginalised groups, stigma and discrimination, integrated care, care and support networks, rights and budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, with voices from around the world, he also identifies positive avenues for living better with dementia, such as creativity, and highlights pockets of innovation and good practice to inform practical solutions for the future.
Shibley Rahman graduated in neuroscience and medicine from Cambridge University. There he also completed his PhD in frontotemporal dementia, commencing a lifelong interest in the timely diagnosis of dementia. He also trained to postgraduate level in medicine, law and business. Shibley speaks regularly about dementia diagnosis and post-diagnostic care, researches wellbeing and advocates rights-based approaches.
