Tag Archives: Sube Banerjee

Dementia health care and wellbeing – a person-centred integrated approach. My book for April 2017.

before editing

Dr Shibley Rahman

Queen’s Scholar BA (1st Class) MA PhD (all Cambridge); MRCP(UK) LLM MBA

Forewords by

Prof Sube Banerjee

Lisa Rodrigues

Lucy Frost

For publication: March 20th 2017 Jessica Kingsley Publishers

About this book:

This book brings different strands in dementia bang up to date. It coincides with the publication of the new NICE guidance “Assessment, management and support for people living with dementia and the carers” to be published in November 2017, as well as publication of the “Dementia Core Skills Education and Training Framework”. It is a coherent evidence-based synthesis of the importance of a person-centred integrated approach, and discusses how integrated care pathways might facilitate this. It is sometimes forgotten that a fundamental right to health underpins wellbeing across all settings, including in care homes (and nursing homes), at home and in hospices, but it is often forgotten that physical health is an important component of wellbeing. This book therefore covers a diverse range of topics including also mental health in care homes, meaningful activities in residential settings, the whole health and social care ecosystem including getting into and out of hospital in a timely manner, as well as enablement through targeted support. Key themes such as dignity in health, care and wellbeing straddle key strands in personhood, human rights and the biomedical approach, and these themes are of critical prominence in service improvement through research, regulation and nurturing of staff. The book will be of help to people living with dementia, carers, dementia leads, care home managers, commissioners, professionals and practitioners, and academics, as well as interested members of the public.

Contents:

Chapter 1

Preventing well and diagnosing well

Chapter 2

Overview of caring well

Chapter 3

Caring well: physical health and medication reviews

Chapter 4

Caring well: mental health

Chapter 5

Cognitive stimulation, cognitive rehabilitation and life story

Chapter 6

Oral health and swallowing difficulties

Chapter 7

Promoting wellbeing

Chapter 8

Sexuality and spirituality

Chapter 9

Research, regulation and staff

Chapter 10

Care homes and integrated care

Chapter 11

Supporting well and independence

Chapter 12

Dying well and end of life

Chapter 13

Living well at home

Chapter 14

Conclusion

 

Dedication

It is my great pleasure to dedicate this book to two people.

First, I am thankful to Prof Martin Rossor. I worked for Prof Rossor in 2002 as a junior at the National Hospital for Neurology and Neurosurgery, Queen Square. His contribution to clinical care and research in dementia has been exceptional.

Second, I would like to give special thanks to Prof Dawn Brooker. Whilst I have never personally worked for Prof Brooker, her contribution in personhood and dementia has been remarkable against the reality of the NHS, and she personally has been inspirational for many leaders in dementia around the world.

I should like to thank especially Prof Sube Banerjee, Lisa Rodrigues and Lucy Frost for kindly writing forewords to this book. And finally, I should like to thank enormously Chris Roberts for giving me the idea to write this book, the third in fact in my ‘trilogy’.

 

 

 

Dr Shibley Rahman

London, September 2016

 

 

 

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Enhancing health and wellbeing in dementia: care homes and care at home

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I am very honoured that the main foreword will be by Prof Sube Banerjee, Chair of Dementia at Brighton and Sussex Medical School.

Sube is very influential in English dementia policy. His contributions have been outstanding. Indeed, he co-authored the original English dementia strategy ‘Living well with dementia’ in 2009 on behalf of the Department of Health.

I am very honoured that the other two forewords are to be by Lisa Rodrigues and Lucy Frost, who have substantial interest and knowledge in dementia.

The book will be a timely look at the evidence, with many of the topics being rehearsed elsewhere in policy, such as the NHS Five Year Forward View, or the NICE guidance on dementia (currently in development).

This book is likely to be published by Jessica Kingsley Publishers in the end part of 2016.

 

Chapter 1 : Overview

I will draw on the existent literature to consider what has emerged about a consensus about ‘care pathways’ for dementia, in particular the events which can lead up to “crises” or transfer to a residential settings. There has not been an adequate look at the work up in primary care for dementia, and I will consider how domestic policy might be harmonised with international guidance. In the presence of an evidence base for dementia advisors and dementia support workers, I will consider the potential of signposting to services. I will re-visit the evidence base for prevention of dementia, and the current evidence base for the use of cholinesterase inhibitors and other drugs, but will concern myself with the impact of human rights, disability and sustainable communities in current thinking. The largest part of this chapter will be considering quality of care, and novel approaches such as integrated personal commissioning and the personal medical care home. Throughout the book, there will be a detailed discussion of the need to promote the health and wellbeing of carers, both paid and unpaid, and to consider coping strategies which might help through clinical specialist nurses and social care practitioners, and other colleagues.

Chapter 2 – The caring environment and culture

This chapter will explore evidence for the components of the built environment and sensory stimulation and enhancing person and relationship centred care which enhance health and wellbeing across care settings. The main emphasis will be on considering what change might be needed, and under what leadership from all stakeholders, to ‘improve’ services, howeverso defined, and the rôles that risk and innovation might play in the future. If there are truly ‘no more throwaway people’, this chapter will also include how the social capital from people with dementia and carers might be consolidated to build more resilient communities co-designing research and services.

Chapter 3 : Physical health and aspects of pharmacy

Enhancing physical health is essential across all different care settings. This chapter will review the current evidence for management of falls, frailty, pressure sores, urinary tract infections, and hip fractures, as well as aspects of nutrition and metabolic medicine, from a multidisciplinary perspective, emphasising the role for allied health professionals. Aspects of prescribing will also be considered, including overuse, underuse and inappropriate use of medications, and what evidence base has thus far built up in the area of ‘therapeutic lying’ and its ethical implications.

Chapter 4 : Wellbeing and mental health

This chapter will consider aspects of mental wellbeing, including self and identity, and awareness and insight. Its will also consider various other issues to do with mental health, including agitation, apathy, depression, and sleep.

Chapter 5 : Cognitive stimulation and life story

A substantial evidence base has built up concerning non-pharmacological approaches to dementia. This chapter will consider diverse approaches including cognitive stimulation, reminiscence work and cognitive neurorehabilitation. This chapter will also consider the evidence base for ‘life story’ and how it has been approached across various care settings.

Chapter 6 : Oral health and swallowing difficulties

This chapter will consider a much neglected area of health and wellbeing, relevant to holistic health and wellbeing, that of oral health and disease. Current important issues in this field will be considered, including dysphagia and mastication, as well as possible areas of interest for the future.

Chapter 7 : Activities

This chapter will evaluate critically what exactly is meant by the term ‘meaningful activity’, and consider whether reframing of the narrative, such as promoting creativity’ might be more helpful. The chapter will discuss the importance of communication across this area, but consider specifically the arts, drama and theatre, dancing, gardening and outdoor spaces, humour, and music.

Chapter 8 : Spirituality and sexuality

Identity and relationships have emerged as key themes across various conceptualisations of personhood, including of course Tom Kitwood’s. This backdrop will be presented at first, before considering key issues in sexuality, spirituality and religiosity, not only in life after a diagnosis, but also for enhancing health and wellbeing across all health and care settings.

Chapter 9 : Research, regulation and staff

Research and regulation are examples of ‘work in progress’. This chapter will consider the key directions of research in the dementias, both qualitative and quantitative, across various care settings. This chapter will also consider specific areas of interest, including barriers to drug development including regulation. The overall area of regulation will be considered in terms of proportionality, and celebrate areas of good practice. The chapter will also consider areas which also are of utmost importance such as abuse and neglect, and adult safeguarding in general. The chapter will also include a discussion of how the health and wellbeing of staff might be promoted better to meet the needs of people with dementia and carers.

Chapter 10 : Care homes in integrated care

There have been various fashions and fads in thinking about ‘integrated care’, and part of the problem has been the plethora of different perspectives and models. This chapter will adopt a practical perspective of people living with dementia and carers having their health and wellbeing attended to in the right place, right way and the right time, and consider various aspects concerning this. Consequently, the discussion will emphasise advance care planning, attending hospital, admission and re-admission, avoiding hospitals, care transitions, case management, the “future hospitals” initiative from the Royal Colleges of Physicians, improving patient flow, intermediate care and discharge, liaison psychiatry and CMHTs, specialist clinical nurses including Admiral nurses, and “virtual wards”.

Chapter 11 : Independence

This chapter will consider some important diverse areas which intend to promote independence, their progress and impact in overall policy. These include electronic medical and care records, “individual service funds”, and reablement. This chapter will also consider potential opportunities and risks from personal genomics and personalised medicine.

Chapter 12 : Palliative care and end of life care

It is beyond dispute that palliative care and end of life care are essential components of promoting health and wellbeing in people living with dementia and carers. Person-centred care, maximising continuity of care, is fundamental. This chapter will consider the special features of this approach which are very important, and also consider why there has been a reluctance amongst some to consider dementia as a terminal illness. The chapter will also consider the significance of grief, and also consider a possible notion of ‘pre-grief’.

Chapter 13 : Living at home

The first twelve chapters are very relevant to the final chapter on living at home. Whilst much of the media attention is on care homes and nursing homes, or residential settings in general, there is remarkably little focus on living at home, including living at home alone, despite enormous interest in this amongst the general population. This chapter will consider how this approach may have evolved from the philosophy of ‘successful aging in place’, and consider how specific home environments might be enhanced including extra care environments. This chapter will include discussion of, specifically, community nursing including Buurtzorg Nederland, day and respite care, self management. telehealth and technology, and smart homes. The pivotal role of social care and social work will be emphasised throughout.

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Enhancing health and wellbeing in living with dementia: care homes and care at home

Untitled-16

 

I am currently working on this third book on dementia.

 

 

These therefore follow on from my previous books ‘Living well with dementia: the importance of the person and the environment’ (CRC Press, 2014) and ‘Living better with dementia: good practice and innovation for the future’ (Jessica Kingsley Publishers, 2015).

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.

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Living well with corporate capture. What is the future of the Prime Minister's Dementia Challenge?

“Citizens have become consumers with status proportional to purchasing power, and former public spaces have been enclosed and transformed into private malls for shopping as recreation or “therapy.” Step by step, private companies, dedicated to enriching their owners, take over the core functions of the state. This process, which has profound implications for health policy, is promoted by politicians proclaiming an “ideology” of shrinking the state to the absolute minimum. These politicians envisage replacing almost all public service provision through outsourcing and other forms of privatisation such as “right to provide” management buyouts. This ambition extends far beyond health and social care, reaching even to policing and the armed forces.”

And so write Jennifer Mindell, Lucy Reynolds and Martin McKee recently about ‘corporate capture’ in the British Medical Journal.

Alistair Burns, England’s clinical lead on dementia, recently concluded a presentation on the clinical network for London with the following slide:

Reminyl Speaker Training Showfile

Alistair clearly does not mean ‘Dementia is everyone’s business’ in the “corporate capture” sense. Instead, he is presumably drawing attention to initiatives such as Brighton and Sussex Medical School’s initiative to promote dementia awareness at all levels of an organisation (and society).

 

Microsoft PowerPoint - H1 Dementia Care Event

 

The comparison with diabetes is for me interesting in that I think of living well with diabetes, post diagnosis, as conceptually similar to living well with dementia, in the sense that living well with a long term condition is a way of life. And with good control, it’s possible for some people to avoid hospital, becoming patients, when care in the community would be preferred for a number of clinical reasons. Where I feel the comparison falls flat is that I do not think that it is possible to measure outcomes for living well with dementia easily. Sure, I have writen on metrics used to measure living well with dementia, drawing on the work of Sube Banerjee, Alistair’s predecessor. It might be possible to correlate good control with a blood test value such as the HBA1c, and it steers the reward mechanism of the NHS for rewarding clinicians for failure of management (e.g. laser treatment in the eye, foot amputation, renal dialysis), but the comparison needs some clinical expertise to be pulled off properly. The issue of breaking down ‘barriers’ between primary and secondary care is an urgent issue, and ‘whole person care’ or ‘integrated care’ may or may not help to facilitate that. But a future government must not get too enmeshed in sloganising if it means forgetting basic requirements of foot soldiers on the ground, such as specialist dementia nurses including Dementia UK’s ‘Admiral nurses’.

But the question of who gives the correct diagnosis of dementia, or even verifies it, won’t go away.

Having done Dementia Friends myself, a Public Health England the Alzheimer’s Society joint initiative, I feel the initiative is extremely well executed from an operational level. I think it’s pushing it for a member of the public to think that an old and doddering lady crossing the lady might have dementia and requires help, as medicalising ageing into dementia is a dangerous route to take. The £2.4 million programme is funded by the Social Fund and the Department of Health. Public Health England are planning to undertake an evaluation of the Dementia Friends Campaign launched on 7 May 2014, which will include tracking data and prevention message testing.

There are a number of important clinical points here. There are crucial questions as to whether persons themselves with a possible diagnosis, friends and/or families themselves want a diagnosis of dementia. A diagnosis of dementia in anyone’s book is a life-changing event. The concerns of the medical profession have been effectively rehearsed.  Notwithstanding, the ambition that, by 2015, two thirds of the estimated number of people with dementia should have a diagnosis, with appropriate post diagnostic support has been agreed with NHS England.  To support GPs and other primary care staff, a Dementia Roadmap web-based tool has been commissioned by the Department of Health from the Royal College of General Practitioners. The roadmap has now been officially launched, and will provide a framework that local areas can use to provide local information about dementia from health, social care and the third sector to assist primary care staff to more effectively support patients, families and carers from the time of diagnosis and beyond. Feedback from relevant stakeholders will be most interesting.

People with dementia need to be followed up across a period of time for a diagnosis of dementia to be reliably made, and ‘in the right hands’, i.e. of a specialist dementia service. Whilst NHS England are working with those areas with the longest waits, with the aim of ensuring that anyone with suspected dementia will not have an excessive wait for a timely assessment, there has to be monitoring of who does that timely assessment and whether it produces an accurate result. At an extreme example, clinical diagnoses of rarer dementias, particularly younger onset, can only be done effectively by senior physicians with reference to two clinical histories, two clinical examinations, neuroimaging (e.g. CT, MRI, or even fMRI or SPECT), lumbar puncture/cerebrospinal fluid (if not contraindicated), cognitive psychology, EEG, or even – extremely rarely – a brain biopsy. But this would be to propose an Aunt Sally argument – many possible cases of dementia can be tackled by primary care with appropriate testing perhaps in the future, and certainly adequate resources will need to be put into primary care for training of the workforce. Or else, it is literally a ‘something for nothing’ approach.  Some people have ‘mild cognitive impairment’ instead, and will never progress to dementia.There are 149,186 dementia friends currently. This number is rapidly increasing. The goal is one million.Furthermore, there are many people given a diagnosis of dementia while alive who never have it post mortem. And the diagnosis can only be definitively made post mortem. Seth Love’s brilliant research (and he is an ‘Ambassador’ to the Alzheimer’s BRACE charity) is a testament to this. Anyway, NHS England and the Department of Health are working with the Royal College of Psychiatrists to encourage more Memory Services to become accredited.

And when is screening not officially screening? This continues to require definition in England’s policy. The original Wilson and Jungner (1968) principles have appear to have become muffled in translation. The CQUIN has led to over 4,000 referrals a month, but this will only contribute to improving diagnosis rates for dementia if this is not producing a tidal wave of false positives. For quarter 3 2013/14, 83% of admitted patients were initially assessed for potential dementia. Of those assessed and found as potentially having dementia, 89% were further assessed. And of those diagnosed as potentially having dementia, 86% were referred on to specialist services. But we do need the final figure. This policy plank for me will also go back to the issue of whether policy is putting sufficient resources into the diagnostic process and beyond. Stories of people being landed with a diagnosis out of nowhere and given not much further information than an information pack are all too common. A well designed system would have counselling before the diagnosis, during the diagnosis, and after the diagnosis.

Ideally, an appointed advisor would then see to continuity of care, allowing persons with dementia to be able to feel confident about telling their diagnosis to friends and/or family. The advisor would ideally then give impartial advice on social determinants of health, such as housing or education. Policy may be slowly moving in this direction. In April 2014 NHS England published a new Dementia Directed Enhanced Service (DES) for take up by GPs to reward practices for facilitating timely diagnosis and support for people with dementia. Patients who have a diagnosis of dementia will be offered an extended appointment to develop a care plan. The care planning discussion will focus on their physical and mental health and social needs, which will include referral and signposting to local support services. From 10 signatories in March 2012, to date, there are now 173 organisations representing nearly 3,000 care services committed to delivering high quality, personalised care to people with dementia and their carers.

But all this requires money and skill. There is no quick fix.

The areas of action for the Prime Minister’s Dementia Challenge are: dementia friendly communities, health and care and improving research.

In November 2012, The Secretary of State for Health announced a £50 million dementia-friendly environments capital investment fund to support the NHS and social care to create dementia-friendly environments. The term ‘dementia friendly communities’ is intrinsically difficult, for reasons I have previously tried to introduce. A concern must be the ideology behind the introduction of this policy in this jurisdiction. The emphasis has been very much on making businesses ‘business friendly’, which is of a plausible raison d’être in itself.  This, arguably, is reflected in the list of chief stakeholders of the dementia friendly communities champion group.

Dementia friendly communities board

It happens to fit very nicely with the Big Society and the ‘Nudge’ narrative of the current government. But it sits uneasy with the idea that it is in fact a manifestation of a small state which bears little responsibility apart from overseeing at an arm’s length a free market. The critical test is whether this policy plank might have improved NHS care. 42 NHS and 74 Social Care National pilot schemes were approved in June 2013 as national pilots. Most of the projects have now been completed, and they will be evaluated by a team of researchers at Loughborough University over the coming months. The evaluation will provide knowledge and evidence about those aspects of the physical care environment which can be used to provide improved care provision for people with dementia, their families and carers. But the policy has had some very exciting successes: for example the ‘Sporting Memories Network’, an approach based on the neural re-activation of sporting autobiographical memories, recently scooped top prize for national initiative in the Alzheimer’s Society Dementia Friendly Communities Awards 2014.

And meanwhile, the care system in England is on its knees. Stories of drastic underfunding of the care system are extremely common now. An army of millions of unpaid family carers are left propping up a system which barely works. There appears to be little interest in guiding these people, with psychological, financial and/or legal burdens of their own, to reassure them that all their hard work is delivering an extraordinary level of person-centred care.

But this for me was an inevitable consequence of ‘corporate capture’. The G8 World Dementia Council does not have any representatives of people with dementia or carers.

That is why ‘Living well with dementia’ is an important research strand, and hopefully one which Prof Martin Rossor and colleagues  at NIHR for dementia research will give due attention to in due course. But all too readily research into innovations, ambient assisted living, design of the ward, dementia friendly communities, assistive technology, and advocacy play second fiddle to the endless song of Big Pharma, touting how a ‘cure’ for dementia is just around the corner. Yet again.

So what’s the solution?

The answer lies, I feel, in particularly what happens in the next year and beyond.

The Prime Minister’s challenge on dementia was developed as a successor to the National Dementia Strategy, with the challenge of delivering major improvements in dementia care, support and research. It runs until March 2015. Preparatory work to produce a successor to the Challenge from the Department of Health (of England) is now underway in order that all the stakeholders can fully understand progress so far and identify those areas where more needs to be done. The Department of Health have therefore commissioned an independent assessment of progress on dementia since 2009.

There are a number of other important pieces of work that are underway, which will provide information and evidence about progress and gaps. For example, according to the Department of Health, the All Party Parliamentary Group on Dementia chaired by The Baroness Sally Greengross OBE are producing a report focused on the National Dementia Strategy, and the Alzheimer’s Society has commissioned Deloitte to assess progress and in the autumn will be publishing new prevalence data. Indeed the corporate entity known as Deloitte Access Australia (a different set of management consultants in the private sector) produced in September 2011 a report on prevalence of dementia estimates in Australia. Deloitte themselves have an impressive, varied output regarding dementia. But of course they are not interested in dementia solely. “Deloitte” is the brand under which tens of thousands of dedicated professionals in independent firms throughout the world collaborate to provide audit, consulting, financial advisory, risk management, tax, and related services to select clients.

But also it appears that the Alzheimer’s Society, working with NHS England, has commissioned the London School of Economics to undertake a review into the accuracy of dementia prevalence data. The updated data is expected to be published in Autumn 2014. Apparently, once all this work has been concluded a decision will be made on the focus and aims of the successor to the PM’s challenge.

The current Coalition government has been much criticised in parts of the non-mainstream media for the representation of corporate private interests in the Health and Social Care Act (2012).

I believe people who are interested in dementia, including persons with dementia, caseworkers and academics, should make their opinions known to the APPG in a structured articulate way in time. I think not much will be achieved through the pages of the medical newspapers. And only time will tell whether the new dementia strategy will emerge in time before the next general election in England, to be held on May 7th 2015. However, even the most ardent critics will ultimately. The present Government should be congratulated for having made such a massive effort in educating the country about dementia, which is a necessary first step towards overcoming stigma and discrimination. The Alzheimer’s Society has impressively delivered its part of it, it appears, but future policy will benefit from much more ‘aggressive inclusion’ of other larger stakeholders (e.g. the Joseph Rowntree Foundation, Dementia UK) and smaller stakeholders.

And special thanks to Alistair Burns, England’s clinical lead for dementia, a Chair at Manchester, and much more.

It could be a case of: all change please. But a huge amount has been done.

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A timely reminder from Prof Sube Banerjee, co-author of 'Living well with dementia' (2009)

Apart from one caption saying ‘suffer from dementia’, this video I thought was excellent.

Sube gives a very clear definition of dementia which I really liked.

I think the point that dementia is not a part of ageing, but associated with ageing, is extremely important. I think we’re likely to have increasing concern that dementia can be difficult to diagnose in certain communities. For example, in some Asian communities, there is not even a word for ‘dementia’.

Missing from Sube’s account is the fact we can do something for people living with dementia, which is why I actively promote ‘living well with dementia’.

‘Living well with dementia’ might seem at first glance like a bit of a crap slogan, and actually quite offensive for those people who have witnessed loved ones in severe forms of dementia. But it’s an attempt to convey the idea that every individual with dementia is entitled to respect and dignity, and there is much we can do to enable people to live well with dementia by a careful study of the person and his or her environment.

It is apart from anything else the name of the 2009 English strategy, which Sube co-wrote, and which is about to be renewed.

This video is of course particularly timely for ‘Dementia Awareness Week’ running from May 18-24 2014. Our Facebook page is here.

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An innovative programme to encourage extensive knowledge sharing: the HE KSS/BSMS Primary Care Dementia Fellowship Programme

The HE KSS/BSMS (Health Education Kent Surrey and Sussex / Brighton and Sussex Medical School) have launched the “Primary Care Dementia Fellowship Programme”.

This is a programme for GPs, practice nurses and staff, and community nurses in Kent, Surrey and Sussex.

(Health Education Kent Surrey and Sussex will provide the funding to release Fellows to attend a regional skills development programme that will run from March to September 2014.

The Fellows will join with doctors and nurses from Kent, Surrey and Sussex (KSS) to build the knowledge and skills needed for them to create better dementia services in KSS.

Prof Sube Banerjee and Breda Flaherty of Brighton and Sussex Medical School (BSMS) are leading this initiative based on their successful experience in the NHS London Deanery.

It appears that the main aim is to build a network of Fellows who can act as ‘change catalysts’ (my words not theirs), to spread best contemporaneous practice in dementia care.

It’s important as dementia is one of the top five strategic priorities in the KSS Skills Development Strategy.

Modules will be led by Banerjee and Flaherty, with contributions from clinical experts in dementia; colleagues in social care; people in the care home sector; NGOs; persons living with dementia and carers; specialists in service development; commissioners and researchers.

I believe that such a course will have considerable competitive advantage in being totally disruptive in how traditional training for juniors in dementia is conducted.

The value is clearly in the collaborative ties between members of the network. By lowering the cultural barriers in this way, the team at Sussex have something very special here.

The set-up is perfect for boundary-less knowledge sharing, and this is enormously value as we all get to grips with what the priorities in local and national policy in dementia might be.

There are three modules running from March to June: good practice in dementia assessment and care, good practice in dementia, and changing practice.

These are followed by a ‘Next Steps’ conference and a period of evaluation and research.

Such an approach might become paradigmatic for future learning in the NHS in dementia.

 

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'Reasons to be cheerful' part 4. Prof Sube Banerjee's inaugural lecture in Brighton on living well with dementia.

For me the talk was like a badly needed holiday. I joked with Kay there, a colleague of Lisa, that it felt like a (happy) wedding reception.

Unknown to me, the title of Prof Banerjee’s talk is an allusion to this famous track from 1979 (when I was five). It’s “Reasons to be cheerful (part 3)” by Ian Drury and the Blockheads.

The Inaugural Lecture – Professor Sube Banerjee (“Professor of Dementia”), ‘Dementia: Reasons to be cheerful’ was held on 26 February, 2014, 6:30 pm – 8:30 pm, at Chowen Lecture Theatre, Brighton and Sussex Medical School, Sussex Campus. BN1 9PX. Details are here on the BSMS website.

I found Prof Banerjee to be a very engaging, ‘natural’ speaker.

I arrived with hours to spare, like how the late Baroness Thatcher was alleged to have done in turning up for funerals.

Apprehensive

Brighton are very lucky to have him.

But his lecture was stellar – very humble, yet given with huge gravitas. Banerjee is one of the best lecturers of any academic rank in dementia I have ever seen in person.

Opening slide

Banerjee started off with a suitable ‘icebreaker’ joke – but the audience wasn’t at all nervous, as they all immediately warmed to him very much.

SUBE2 GENERAL

He is ‘quite a catch’. He is able to explain the complicated issues about English dementia policy in a way that is both accurate and engaging. Also, I have every confidence in his ability to attract further research funding for his various teaching and clinical initiatives in dementia for the future.

Most of all, I was particularly pleased as the narrative which he gave of English dementia policy, with regards to wellbeing, was not only accurate, but also achievable yet ambitious.

1979 was of course a big year.

SUBE1 1979

Prof Banerjee felt there were in fact many ‘reasons to be cheerful’, since Ian Drury’s remarkable track of 1979 (above), apparently issued on 20 July of that year.

Banerjee argued that the 1970s which had only given fruit to 209 papers, but things had improved ever since then.

It was the year of course Margaret Thatcher came to power on behalf of the Conservative Party.

1979 DEMENTIA

In contrast, there have already been thousands of papers in the 2000s so far.

Banerjee also argued that “what we know is more likely to be true” which is possibly also true. However, I immediately reminisced of the famous paper in Science in 1982, “The cholinergic hypothesis of geriatric memory dysfunction”. This paper, many feel, lay the groundwork for the development of cholinesterase inhibitors such as donepezil (“Aricept”, fewer than twenty years later.

It is definitely true that ‘we are better at delineating the different forms of dementia’.

I prefer to talk of the value of people with dementia, but Banerjee presented the usual patter about the economic costs of dementia. Such stats almost invariably make it onto formal grant applications to do with dementia, to set the scene of this particular societal challenge.

SUBE3 COSTS

I am of course a strong believer in this as my own PhD was in a new way to diagnose the behavioural variant of frontotemporal dementia. In this dementia, affecting mainly people in their 50s at onset, the behavioural and personality change noticed by friends and carers is quite marked. This is in contrast to a relative lack of memory of problems.

Not all dementias present with memory problems, and not all memory problems have a dementia as a root cause. I do happen to believe that this is still a major faultline in English dementia policy, which has repercussions of course for campaigns about ‘dementia awareness’.

A major drive in the national campaigns for England is targeted at destigmating persons with dementia, so that they are not subject to discrimination or prejudice.

The dementia friendship programmes have been particularly successful, and Banerjee correctly explained the global nature of the history of this initiative drive (from its “befriending” routes in Japan). Banerjee also gave an excellent example to do with language of dementia friendship in the elderly, which I had completely missed.

SUBE7 Japan friendships

Raising awareness of memory problems in dementia is though phenomenally important, as Alzheimer’s disease is currently thought to be the most prevalent form of dementia worldwide.

The prevalence of dementia may even have been falling in England in the last few decades to the success prevention of cardiovascular disease in primary care.

The interesting epidemiological question is whether this should have happened anyway. Anyway, it is certainly good news for the vascular dementias potentially.

That dementia is more than simply a global public health matter is self-evident.

I’m extremely happy Banerjee made reference to a document WHO/Alzheimers Disease International have given me permission to quote in my own book.

SUBE9 ADI

Banerjee presented a slide on the phenomenally successful public awareness campaign about memory.

SUBE12 Alz Soc campaign

Nonetheless, Banerjee did speak later passionately about the development of the Croydon memory services model for improving quality of life for persons with mild to moderate dementia.

In developing his narrative about ‘living well with dementia’, Banerjee acknowledged at the outset that the person is what matters at dementia. He specifically said it’s about what a person can do rather than what he cannot do, which is in keeping to my entire philosophy about living well with dementia.

And how do we know if what we’re doing is of any help? Banerjee has been instrumental in producing, with his research teams, acceptable and validated methods for measuring quality of life in dementia.

The DEMQOL work has been extremely helpful here, and I’m happy Banerjee made a point of signposting this interesting area of ongoing practice-oriented research work.

Banerjee of course did refer to “the usual suspects” – i.e. things you would have expected him to have spoken about, such as the National Dementia Strategy (2009) which he was instrumental in designing at the time: this strategy was called “Living well with dementia”.

SUBE4 National dementia strategy

“I’m showing you this slide BECAUSE I want YOU to realise it IS complicated”, mused Banerjee at the objectives of the current English dementia policy.

SUBE8 Dementia national strategy objectives

I asked Banerjee what he felt the appropriate ‘ingredients’ of the new strategy for dementia might be – how he would reconcile the balance between ‘cure’ and ‘care’ – “and of course, the answer is both”, he said to me wryly.

Banerjee acknowledged, which I was massively pleased about, the current ‘barriers to care’ in this jurisdiction (including the known issues about the “timely diagnosis of dementia”.

Clearly the provision at the acute end of dementia care is going to have to come under greater scrutiny.

SUBE11 Barriers to care

I increasingly have felt distinctly underwhelmed by the “medical model”, and in particular the repercussions of this medicalisation of dementia as to how grassroots supporters attempt to raise monies for dementia.

That certain antidepressants can have a lack of effect in dementia – Banerjee’s work – worries me.

That antipsychotics can have a dangerous and destructive effect for persons with dementia – also Banerjee’s work – also clearly worries me.

I am of course very proud that Prof Alistair Burns is currently reading my book focused on the interaction between the person and the environment in dementia.

Alistair Burns Shibley Rahman email

And of course I’m ecstatic that Lisa Rodrigues and Prof Sube Banerjee signed my book : a real honour for me.

book photo

I signed Lisa’s book which was most likely not as exciting for her! X

There was a great atmosphere afterwards: the little chocolate brownies were outstanding!

Being an antisocial bastard, I didn’t mingle.

Mingle

BUT I had a brilliant chat with Lucy Jane Marsters (@lucyjmarsters) who gave me a little bag of ‘Dementia is my business’ badges, very thoughtfully.

SUBE 13 Badges

We both spoke about Charmaine Hardy. Charmaine was missed (and was at home, devoted to G.)

I’ve always felt that Charmaine is a top member of our community.

This apparently is a ‘Delphinium’.

Delphinium

A reason not to be cheerful was leaving Brighton, for many personal reasons for me.

Upset to be leaving

Not even the Shard was a ‘reason to be cheerful’, particularly.

The Shard

But when I came back, I found out that ‘Living well with dementia’ is to be a core part of the new English dementia policy.

I have, of course, just published a whole book about it.

The photograph of the poppy was of course taken by Charmaine Hardy: I have such great feedback on that one poppy in particular!

Book cover

And what does the future hold?

Over to Prof Banerjee…

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