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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

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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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"Alive inside: the story of music and memory". A film screening in Brighton on March 20th.

I always tell anyone I can meet, “Anything can happen to anyone at any time”.  I believe in persons not patients; I believe in looking at what people can do rather than what people cannot do; I believe repair is important, but so is care.

2 Shibley

Don’t let anyone fool you into thinking that the human brain is anything other than complex. There’s about 1 000 000 000 000 000 different nerve cells, some of which are connected w’ith other, but some aren’t.

“Alive inside: the  story of music and memory” is a film which charts a one-man mission of Dan Cohen to bring music to residents of residential nursing homes.

I am honoured to have been invited yesterday to introduce this film at St George’s Church, Brighton, to an audience of about 100-120 members of the community.

3 Before

I am truly grateful to Lucy Frost, a clinical nursing specialist in Brighton, and Rachel Mortimer, from “Engage and Create”, a social enterprise which promotes wellbeing in an evidence-based way.

1 Lucy Frost

Music is a remarkable cultural phenomenon. Whatever side of your political fence, it’s true that the whole is more than the sum of the individual parts.

Music, as correctly observed by Prof Oliver Sacks, is in an unique position to involve numerous distributed neuronal networks involved in auditory perception, emotions, and attention. But what is also special about music is that it can raise powerful personal emotions, including ‘chills’ down your spine, and can compel you into voluntary movement and coordination.

Furthermore, it can bring back powerful personal memories from your autobiography. It is not uncommon for someone to tell you that they can vividly recollect the first time they heard a particular song.

Henry in his 90s, in a nursing home in a slumped posture in a chair, becomes ‘awakened’ when he hears music. But the remarkable thing is that this phenomenon is replicable.

I don’t feel ‘awakening’ is a hyperbolic word to use in this context.

I remember when I would put a horizontal cane in front of a person with Wilson’s disease, a rare copper metabolism problem; and who was ‘stuck’ in movement, like someone with Parkinson’s disease. The year was 1998, and the city was Warsaw as I was doing a study on cognition for my Ph.D.

This is reminiscent of the ‘Awakenings’ captured later in the famous film to do with the magical effect of a dopamine chemical medication on people with Parkinson’s disease symptoms, as following the outbreak of encephalitis lethargica.

Medical breakthroughs always come from the weirdest of places.

I think unlocking movement through a physical obstacle is akin to unlocking thinking through music.

In other words, I think the human brain responds well to external triggers when it cannot generate the computer program itself. I think the human brain has a form of human metronome which enables this response to physical obstacles and music in different contexts.

The late (and great) Prof Sir Richard Doll, after a lecture at Cambridge, said to me how he’d been told that, “serendipity is like looking for a needle in a haystack, and finding the farmer’s daughter.”

Numerous previous research studies have showed that your wellbeing is improved if you improve the wellbeing of others. Also, the effect of the musical ‘intervention’ is quite longlasting, in improving someone’s quality of life, or enhancing temporarily memory.

In this target-driven culture, where all outcomes have to be identified in meticulous detail, it is quite remarkable that music used this way has very few risks (e.g. it does not cause physical disease, it is not intensely costly if you have an inexpensive mp3 player which has relevant playlists.)

I managed to do a bit of ‘product placement’ for my own iPod Nano, even.

4 photo with iPod

And the potential benefits are enormous. Historically, it has been far too easy for certain professionals to abuse their power to prescribe antipsychotic medications as a ‘chemical cosh’ to “turn off” residents with dementia in homes.

The whole project forces us to justify whether the money put into prescribing medications which often very have modest effects on cognition and wellbeing, and have no proven effect on disease progression, is justified.

If Pharma did not have such a policy strangehold through corporate and regulatory capture, social prescribing, where doctors could prescribe a mp3 player, would be the norm not the exception. “Nesta”, the innovation hothouse, found in their report that most people want it but most people aren’t offered it.

As Kate Swaffer, Co-Chair of the ‘Dementia Alliance International’, a peak body representing people with dementia, emphasised last week addressing dignatories in Geneva for the World Health Organization, we need more effort to be put into research into living well with dementia.

“It is possible to live well with dementia” is in a way the first amendment of the Alzheimer’s Disease International. Bringing music back into some people’s lives might be a good start.

I was much more open about where I thought our English dementia policy has gone wrong, in a small pub in Brighton round the corner from the venue. Elated by my Diet Pepsi, I explained how we could be in a better place – but that’s for another day.

5 after

 

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