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Book launch for ‘Enhancing health and wellbeing in dementia’: final timetable

The aim of this event is to celebrate the successful publication of my book “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” by Jessica Kingsley Publishers on 19 January 2017.

The presentations for my book launch are finally confirmed as follows. This is a free event, private by invitation only, free and with no funding. All places have now been finally allocated.

A book signing will take place at 1 pm. Copies of Jessica Kingsley Publishers books will be available on the afternoon, including Kate Swaffer’s “What the hell happened to my brain?” (Jessica Kingsley Publishers, 2016). I will ensure that, if I achieve permission from the relevant parties, that items from the afternoon are published on Vimeo after the event.

I am delighted to be joined by Kate Swaffer as well as 49 other delegates.

Event timetable

1.00 Book signing

 

1.40 Introduction to afternoon presentations

Lisa Rodrigues CBE, writer, coach and mental health campaigner, www.LisaSaysThis.com

 

1.50 Enhancing health and wellbeing in dementia: a person-centred integrated care approach

Shibley Rahman

 

2.10 Co-production, human rights and citizenship

Alison Cameron, citizen journalist and activist

 

2.30 Technology and supporting well

Maneesh Juneja, Digital Health Futurist, MJ Analytics

 

2.50 Living alone at home, Jo Moriarty, Senior Research Fellow and Deputy Director, SCWRU

 

3.10 Care homes and promoting wellbeing

Yvonne Manson and Joe Walker, Dementia consultants, Balhouise Care Group

 

 

3.30 Networking Break (with afternoon tea and biscuits)

 

3.50 Preventing excess disability through psychological approaches: a clinical psychologist’s view

Reinhard Guss, Chair, British Psychological Society, Faculty of the Psychology of Older People

 

4.10 Introduction to person-centred acute care in hospitals

Shibley Rahman

 

4.20 Acute hospitals and caring well: a clinical nursing specialist’s view

Lucy Frost, Dementia lead, Sussex Community NHS Trust

 

4.40 Hospices and dying well, Sarah Russell, Head of Research and Clinical Innovation Hospice UK

 

5.00 pm Discussion

One of the questions asked in the final scope of the new NICE guidance currently in development [please see below] is, “How should care be arranged to optimise the health and wellbeing of people living with dementia and their informal carers?”  This will be the question for our 30 minute discussion in my book launch.

I am privileged that the discussion event will be chaired by friend and colleague Kate Swaffer, finalist in this year’s Australian of the year competition, CEO and co-founder of Dementia Alliance International, and member of the World Dementia Council.

There are fifty delegates in attendance, including myself, with a very wide range of backgrounds and experiences all relevant to the dementia field. An invitation to attend was sent out and tickets were allocated on a first come first served basis. A waiting list was in operation. There was no problem in filling the places as this free event was massively oversubscribed.

I feel that I have been able to cover a huge amount of material relevant to English dementia policy, including in my previous books “Living better with dementia: good practice and innovation for the future” (Jessica Kingsley Publishers, 2015) and “Living well with dementia: the importance to the person and the environment” (CRC Press, 2014). I was honoured that my very first book won best book of the year award for health and social care in the BMJ Awards in 2015.

Reflecting best practice

The NICE guideline “Dementia: assessment, management and support for people living with dementia and their carers” currently in development will update the NICE guideline on Dementia (CG42).

The final scope is published here.

The key themes of this guidance mirror closely my new book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach’, published by Jessica Kingsley Publishers in January 2017.

They are, as stated in the Final Scope:

1. Ethics, consent and advance decision-making
2. Training and development of health and social care staff
3. Recognition (signs and symptoms, risk factors)
4. Assessments for suspected dementia
5. Diagnosing dementia
6. Slowing the progression of dementia
7. Identifying dementia subtypes
8. Intercurrent illness in people living with dementia
9. Comorbidities and multimorbidities
10. Risk management and how it can support people living with dementia to avoid harm and maintain independence
11. Interventions to maximise the health and wellbeing of people living with dementia who experience changes in cognitive function
12. Interventions to maximise the health and wellbeing of people living
13. Assessing the needs of carers
14. Psychosocial interventions for carers of people living with dementia
15. Integrated health and social care
16. Inpatient services
17. Palliative care, pain relief and care at the end of life for people living with dementia

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How should care be arranged to optimise the health and wellbeing of people living with dementia and their informal carers?

The NICE guideline “Dementia: assessment, management and support for people living with dementia and their carers” currently in development will update the NICE guideline on Dementia (CG42).

The final scope is published here.

The key themes of this guidance mirror closely my new book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach’, published by Jessica Kingsley Publishers in January 2017.

They are, as stated in the Final Scope:

1. Ethics, consent and advance decision-making
2. Training and development of health and social care staff
3. Recognition (signs and symptoms, risk factors)
4. Assessments for suspected dementia
5. Diagnosing dementia
6. Slowing the progression of dementia
7. Identifying dementia subtypes
8. Intercurrent illness in people living with dementia
9. Comorbidities and multimorbidities
10. Risk management and how it can support people living with dementia to avoid harm and maintain independence
11. Interventions to maximise the health and wellbeing of people living with dementia who experience changes in cognitive function
12. Interventions to maximise the health and wellbeing of people living
13. Assessing the needs of carers
14. Psychosocial interventions for carers of people living with dementia
15. Integrated health and social care
16. Inpatient services
17. Palliative care, pain relief and care at the end of life for people living with dementia

One of the questions asked in the final scope is, “How should care be arranged to optimise the health and wellbeing of people living with dementia and their informal carers?”  This will be the question for our 30 minute discussion in my book launch.

The presentations for my book launch will be as follows. A book signing will take place at 1 pm. Copies of Jessica Kingsley Publishers books will be available on the afternoon, including Kate Swaffer’s “What the hell happened to my brain?” (Jessica Kingsley Publishers, 2016). I will ensure that, if I achieve permission from the relevant parties, that items from the afternoon are published on Vimeo after the event.

1.50pm Enhancing health and wellbeing in dementia: a person-centred integrated care approach
2.10pm Co-production, human rights and citizenship
2.30pm Technology and supporting well
2.50pm Living alone at home
3.10pm Care homes and promoting wellbeing
3.50pm Preventing excess disability through psychological approaches: a clinical psychologist’s view
4.10pm Introduction to person-centred acute care in hospitals: cultural considerations
4.20pm Acute hospitals and caring well: a clinical nursing specialist’s view
4.40pm Hospices and dying well

There are fifty delegates in attendance, including myself, with a very wide range of backgrounds and experiences all relevant to the dementia field. Inevitably, I am sad in that this is my last entrance into the dementia field. I would like to say it has been a pleasure, but my views on this are well known.

I feel, notwithstanding, that I have been able to cover a huge amount of material relevant to English dementia policy, including in my previous books “Living better with dementia: good practice and innovation for the future” (Jessica Kingsley Publishers, 2015) and “Living well with dementia: the importance to the person and the environment” (CRC Press, 2014). I was honoured that my very first book won best book of the year award for health and social care in the BMJ Awards in 2015.

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My final book on dementia: on a person-centred approach to enhancing health and wellbeing

The title of the book reflects the fact every person has a human right to health, and that wellbeing is a critical part of wellbeing. It was published earlier this month by Jessica Kingsley Publishers (page including pre-publication reviews here).

 

Many of the issues raised in the book coincidentally have been raised in the draft World Health Organization global ‘draft action plan’, worth a look at here http://apps.who.int/gb/ebwha/pdf_files/EB140/B140_28-en.pdf, published 23 December 2016.  It is felt that while this document is not ‘perfect’ it is a good start. For example, the palliative care approach is specifically signposted in clause (56).

 

People are entitled to the best of care regardless of setting – for example, Dementia Care Mapping™ (DCM™) has been used as an observational tool which has been designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. This book is, in fact, in part dedicated to Dawn Brooker, and frequent references are made in the text to Tom Kitwood. The book is also dedicated to Martin Rossor, national director for dementia research, for whom I worked in 2003. I do not of course wish to speak about the specialist area of personhood as I feel that would be entirely inappropriate.  An excellent book on this area, however, is “Person-Centred Dementia Care, Second Edition: Making Services Better with the VIPS Framework”, by Dawn Brooker and Isabelle Latham, also published by Jessica Kingsley Publishers https://www.amazon.co.uk/d/Books/Person-Centred-Dementia-Care-Second-Framework/1849056668.

 

 

My book is intensely evidence-based but not in a way, I hope, which is off-putting to the primary audience – who are not commissioners, but persons living with dementia and carers. I certainly believe that it is the primary duty of researchers at least to think about the basic translation of research into practice. Many of the interventions and service developments will ultimately rely on this.

 

Thankfully, there are people in care settings who think very carefully about the environment of care, for example helping carers identify, find solutions and create a care culture to overcome mealtime eating problems in dementia. ‘Working with’ collaboratively not working to patients has been a fundamental change in attitude for organising services and research, and the fundamentals of co-production are intimately linked to citizenship and human rights. And we do need to ensure people get access to the right care at the right time. For example, there can be difficulty seeing your GP, or dementia care is an increasingly important strategic consideration for palliative and end of life care providers, including hospices. It is noteworthy that, through working in partnership with their local community and care providers, hospices can ensure that the best of hospice care is extended to everyone affected by a diagnosis of dementia within their local community.

 

 

Responding to the challenge

 

The NHS Five Year Forward View, the current strategic ‘masterplan’ of the NHS, emphasises integration, personalisation and empowerment:

 

There is broad consensus on what the future needs to be. It is a future that empowers patients to take much more control over their own care and treatment. It is a future that dissolves the classic divide, set almost in stone since 1948, between family doctors and hospitals, between physical and mental health, between health and social care, between prevention and treatment.”

 

Chapter 1, Five Year Forward View, 2014 (https://www.england.nhs.uk/ourwork/futurenhs/nhs-five-year-forward-view-web-version/5yfv-ch1/)

 

Dementia has been the target of much stigma from society, and despite the rhetoric of ‘parity of esteem’, much more can be done to understand the physical and mental health needs of persons living with dementia.  Recent initiatives such as ‘dementia friendly communities’ have identified that dementia is unlikely to be the only medical condition a person might live with long-term, and all that communities should be inclusive and accessible. Preventing certain people from being lonely and isolated has immeasurable social and well-being benefits for the individual. There are some amazing ‘dementia friendly’ initiatives – for example, a visit to the theatre can have a profound impact on people living with dementia and their families. It is crucial that all initiatives are culturally inclusive too, including raising awareness and promoting understanding of dementia within culturally diverse communities, which might mean physically visiting day centres, community groups and religious centres to talk about dementia and tackling the stigma that surrounds dementia.

 

Dementia is thought to be the most feared condition in adulthood, and this can affect diagnosis-seeking behaviours as well as the message that ‘nothing can be done’ after a diagnosis. A person never receives a diagnosis of dementia alone; so, understanding how the diagnosis impacts on that person and those closest to him or her is of fundamental importance. What happens after a diagnosis can be incredibly complex, and we need health and social care systems which are flexible, adaptable, and correctly resourced to cope. Interventions for living well, supporting well or caring well are not just medical, but can also be psychological (cognitive or behavioural) – and might prevent further decline. Professionals can unfortunately instil a feeling of helplessness in a person diagnosed with dementia, referred to within Kate Swaffer’s construct of ‘prescribed disengagement’™.

 

I propose in the book that there are key demands of integrated care which I picture in the Preface as spokes of an umbrella.

umbrella

 

‘Responding’ to a new diagnosis of dementia needs new, flexible ways of adapting.

 

Take for example the description of Wendy Mitchell – living with dementia:

 

However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.”

 

(Wendy Mitchell’s blog – “Which me am I today?” https://whichmeamitoday.wordpress.com)

 

Dementia is a prevalent condition, but trends are complicated due to the effect of risk reduction work, the numbers of our ageing population and improved rates of diagnosis nationally. There are approximately about 900,000 people currently living in the UK with dementia. However, the nature of the condition means that managing it can pose unique and sometimes difficult issues, both in the community and in other care settings, and “dementia is everybody’s business” meaning that this is a widespread societal concern, not just the caring professions.

 

With the right support and opportunities, people with dementia and carers can successfully communicate, engage, participate and continue to be part of relationships and communities, and this is no matter how advanced their dementia.

 

This third book provides some of the ingredients to a recipe providing the change for people living with dementia and carers would be supported in a holistic, person-centred way. It is impossible to deliver person-centred care in an exceptional way, without staff feeling properly supported and empowered to fulfil their roles. The language we use is a critical aspect to this. Notwithstanding, there is a strong sense of interconnectedness in the ‘dementia’ sphere, and people in person-centred integrated care tend to be aligned to certain values of openness, trust, valuing difference, innovation and collaboration.

 

There have been enormous strides in how people living with dementia are supported, however there is always more to be done. Technology now embraces telehealth, telecare, mobile health, telemedicine, e-health, smart home technologies and Internet of Things, but is increasingly including informatics (including electronic health and care records), big data, artificial intelligence as well as health and care robotics. Digital technology and social networks provide some of the most powerful tools available today for building a sense of belonging, support and sharing among groups of people with similar interests and concerns.

 

Despite the lack of ‘caring well’ in the NHS Transformation Network, presumably subsumed under ‘living well’ and ‘supporting well’, my book is worth reading with their construct in mind. It can be viewed on this hyperlink: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf.

 

dementia-well-pathway

 

Cost pressures are requiring providers to find new ways of developing a compassionate, capable and competent, yet affordable workforce. Furthermore, both specialist and generic services can struggle to cope with the increased demand upon services. We know there’s a ‘funding gap’ referred to the ‘Five Year Forward View’. But this should be the driver behind transformation plans. Many people involved in dementia care feel there’s also a ‘time gap’ – people with dementia need more of it and hospitals don’t seem to have any. The experience of someone with dementia is often affected by how well the discharge out of hospital goes. For example, a specialist occupational therapist to make sure we got the discharge process right for dementia patients and focussed on safe transfer of care from hospital into the community. Many would like to give a commitment to really making time for residents in its care homes and houses allows all to be treated as individuals, as this provides an environment where residents who are living with dementia can improve their quality of life.

 

The pressures on residential care are enormous. Some care homes face insolvency. A person with dementia is an individual with individual needs and changes to the environment can affect that person, and these could include the health and wellbeing of staff.  The potential problem with framing promoting wellbeing as ‘activities’ is that the focus instead of being on the person becomes focused on the task. Promoting wellbeing might advance ‘life skills’ and improve mental condition, helping and inspiring participants to reminisce and rediscover aspects of their lives. Ideally then all ‘activities’ would be based on the interests, desires and wishes of our residents, and might include tai chi, massage, cream tea, arts, singing, flower arranging, or music. We know that communication is incredible important. Stories can strengthen emotional links between generations, and help to mitigate against negative effects of the combination of dementia, depression and loneliness in communities.

 

We live in exciting times.

 

 

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Physical health, diversity and disability rights must be critical components of dementia friendly communities

Simon

 

At one level, it is essential to know in detail about the experiences of people with dementia and carers of their NHS and social care services. The reality is that local commissioning decisions might mean a shortage of day centres or Admiral nurses, while the brilliant work, which I fully support, in dementia friendly communities continue.

I feel ‘dementia friendly communities’ have been a great successful initiative from the Alzheimer’s Society in levelling against the stigma which surrounds dementia, and to re-engaging a level of community activism for dementia in keeping with what might have transpired in the Big Society. It is noteworthy however what the policy priorities of ‘dementia friendly communities’ (DFC) have been, and whether they can be reconciled easily with a record number of delayed discharges from hospital or 30 hour waits on hospital trolleys in the medical admissions unit for example.

Existing DFC domains, defined by Alzheimer’s Disease International, within the constructs of WHO’s Age Friendly Cities principles and tactics, include: public awareness and information access, planning processes, the physical environment, access and consideration for dementia among local businesses and public services, community-based innovation services through local action, and access to transportation.

I do not want to consolidate the viewpoint that the world of a person with dementia and carer should be solely restricted to the health and social care systems, when the whole point of dementia friendly communities is that people with dementia can lead fulfilling lives in communities. But it is palpably clear that dementia friendly   communities, to seek to preserve the safety and wellbeing of those living with dementia, “it should also empower all members of the community to celebrate the capabilities of persons with dementia, and view them as valuable and vital members of the towns, cities, villages and countries in which they reside.”

But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities. There’s also the issue of inadequately acknowledging the capabilities of persons with dementia.

An excellent starting point are the original data cited in “Building dementia-friendly communities: A priority for everyone, Executive summary August 2013” from the Alzheimer’s Society. While people with dementia face barriers to engaging with their community, it is argued that it is possible to make changes that can make their day-to-day lives much better. It is clearly stated that “people face psychological and emotional barriers to being able to do more in their community, alongside physical issues” it is my contention that in England, with the NHS and social care systems on their knees, people living with dementia are severely handicapped from poorly developed person-centred integrated services.

One of the most common barriers are mobility issues (59%) and physical health issues (59%). And it is further described that, to help support them to live well in their local area, 10% people with dementia and their carers “wanted improved health – related either to their dementia or another condition”. Dementia is a condition which very rarely travels alone. A person is unlikely to live solely with dementia, but also with a number of other conditions. The hallmark of dementia is its complexity, and this will inevitably be reflected in a response from ‘dementia friendly communities’.

In both domestic and international policy, it is wholly laudable that, for example, “community-based solutions support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes”, but with inadequate attention, say, to care planning (including advance care planning) or ambulatory case-sensitive conditions, there is a serious danger that the rhetoric outpaces the reality, and people with dementia go in and out of acute care in an avoidable way.

In the learning disability field, it is a priority to acknowledge that children and adults with profound and multiple learning disabilities are, like everyone else, unique individuals, but sometimes it is tempting or even helpful to talk about groups of people who have common concerns. This can help us as a society to form a response to make sure that people’s human rights in certain communities are upheld.
 However, it is vital that we understand the distinctive needs of people who are often excluded from society, and, totally irrespective of the medical argument for the different causes of dementia, no one person with dementia is the same as another. It is only by focusing on their needs and rights, and working to remove the barriers they face, that people with cognitive disabilities will achieve their rightful place in society.

My first supervisor in Cambridge was Prof Simon Baron-Cohen. Baron-Cohen once commented that: “The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points. Stigmatising anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.” Neurodiversity is defined as ‘the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species’.

And I feel embracing “differentness” is important. This does not make people with dementia ‘inferior’ in any way – just celebrating ‘uniqueness’, which we should like to do all of our fellow citizens. It is really hard to achieve this, arguably, through the broad-brush approach of macro policy of DFCs.

As Prof David Mitchell writes: “I recognize, however, that much of the diversity among individuals reflects the fact that human beings are unique in their individual learning styles, motivation, interests and experiences. I affirm that, irrespective of such diversity, all individuals can and do learn and are capable of having that learning extended and enriched by education. I recognize that all children have a right to receive a quality education appropriate to their needs.”

Recognising diversity does not mean turning a blind eye to either cognitive or physical disability in people with dementia, or poor mental health. Indeed, cascading the overall tenets of the United Nationals Convention on Rights of Persons with Dementia to local jurisdictions (“think global act local”) has become rightly fundamental.

But channelling DFCs through the ‘happy shopper’ prism, perfectly understandable through the ideological drive to ‘nudge’ or behavioural insights in the last UK government, causes a fixation problem, where measuring the outcome of dementia friendliness might come through measuring customer satisfaction of people with dementia with high street brands, rather than measuring the impact of dementia friendly communities on improving wellbeing. And yet this was a prominent aspect of the previous UK government in ‘measuring happiness’ (see, for example, this article from the Guardian in 2010).

Here the “capability approach”, first articulated by the Indian economist and philosopher Prof Amartya Sen in the 1980s is particularly noteworthy, employed in the context of human development, for example, by the United Nations Development Programme, as a broader, deeper alternative to narrowly economic metrics such as growth in GDP per capita.

The capability approach attempts to address various concerns that Sen had about contemporary approaches to the evaluation of well-being, including that individuals can differ greatly in their abilities to convert the same resources into valuable functionings (‘beings’ and ‘doings’). Particularly intriguing, one of Sen’s proposals, is that “people can internalise the harshness of their circumstances so that they do not desire what they can never expect to achieve. This is the phenomenon of ‘adaptive preferences’ in which people who are objectively very sick may, for example, still declare, and believe, that their health is fine.”

If one is a proponent of the ‘small state’, it is easy to argue that people with dementia and carers might be encouraged to overestimate their degree and extent of coping with poor health if living in a content fashion in a dementia friendly community. This might be a dangerous conclusion.

A recent study of “meaningful activity for persons with dementia” from the perspective of the family caregiver, by Dr Kaitlyn Roland, PhD, and
 Dr Neena L. Chappell, published in American Journal of Alzheimer’s Disease and Other Dementias (2015, Vol. 30(6) 559-568) emphasises the importance also of participating in the community for improving health and wellbeing:

“Caregivers consider activity outside the home to be beneficial for the general health of the PWD (9.7%), including exercise, leisure games, and social outings. Activity participation keeps the body strong, maintains memory, and reduces anxiety. Of those who consider the health benefits, 77.2% emphasize physical exercise as imperative for fitness, cognitive function, improved mood, and secondary muscle weakness.”

Physical health and participation in a dementia friendly community clearly then have a beneficial effect to one another. To this end, Admiral nurses from Dementia UK, clinical nursing specialists in dementia, therefore have a critical role, but underlying this is a strong sense of the importance of disability rights and acknowledgement of diversity, as all three contribute to one of the most substantial possible outcomes of ‘dementia friendly communities’ – and possibly the hardest to define of all.

And that, of course, is dignity.

 

 

@dr_shibley

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Review: Diagnosed with Alzheimers or Another Dementia by Kate Swaffer and Lee-Fay Low

31G6C6F5llL._SX325_BO1,204,203,200_

Diagnosed with Alzheimers or Another Dementia, 1 Sep 2016, by Kate Swaffer and Lee-Fay Low

Book available here

I loved reading this up-to-date book, and this title is essentially a ‘must read’ whatever your connection to person living with dementia might be. This relatively new book is an essential read if you wish to familiarise yourself with the key issues in Alzheimer’s disease and other dementias. As the authors explain, you might have received a diagnosis yourself, or somebody close to you has. And therein lies the first source of power of the book. This is a book partly written by Kate Swaffer, possibly the world’s leading advocate in dementia living with a dementia herself. There are few books which meaningfully discuss the issues of living with dementia from a contemporary rather than historic perspective, for other people with dementia and people in a caring rôle, from somebody who herself has met thousands of people with dementia as a world leader. Though Kate is only one person living with dementia, and Kate would not dare to pretend to be the representative of all 49 million people living with dementia in the world, Kate’s contributions are clearly identifiable to me as having enormous gravitas and immense accessibility. Having said that, however, Kate happens to be an exemplary rôle model.

I found myself noticing certain things about the book, having written three books myself. This particular title is far better than anything that I could’ve written. Firstly, this book is not cluttered or slowed down by loads of references. This is great, and makes the book in fact highly enjoyable to read. That does not make the book a stream of consciousness or informed opinion. Here are two authors who know what they are talking about, Kate Swaffer and an Associate Professor Lee-Fay Low. The writing style of the whole book is seamless and elegant, and does not come across as a clunky chain-letter with vastly different writing styles from the two authors. The tone of the book is infused with a deep interest and passion in the humanity of what it is like to live with dementia, which would have been simply impossible from an authorship not living with dementia. The book – as it happens – accurately reflects the current global literature on dementia, as I know it, but I think will help to guide the future of the shape of the global literature. The big bonus of this book is that it will go a huge way to fight the societal stigma that surrounds the dementia experience for many. In the context of the brilliant contemporary drives for ‘dementia friendliness’ (and genuine inclusion), this is wonderful.

Writing a book if you live with dementia is the ultimate form of ‘empowerment and engagement’ you could provide. This book can be read equally well by a person who has received a diagnosis of dementia himself or herself, a carer, an academic, practitioner/professional, or otherwise. The discussion of what caring means is brilliant, and I particularly loved the discussion of ‘backup brain’ as an alternative to the word carer. This perspective is entirely in keeping with viewing dementia as a condition which provides neurocognitive rehabilitation potential, and the book does not shy away from great tips about dealing with dementia you would find difficult to find elsewhere. There’s a great section on global myths surrounding dementia, and an impressive discussion of Kate’s original contribution to the field – prescribed disengagement™. There’s a strong human rights and disability activism twang to the book, and I couldn’t turn the page without learning something new (for instance autoethnographic approaches to self-reflection in living with dementia, neuroplasticity and learning in dementia). All of these sections are woefully under-represented in other guides and books to dementia, and provide a much-needed refreshing and original read.

I don’t think you must live in Australia to benefit from the book, though the signposting of services is complete if you do happen to live in Australia. But this is the perfect book to have if you’ve been newly diagnosed with dementia wherever you are. I think there are too many books, written by medics for medics for example, which really do not address the needs of persons with dementia or backup brains, and this book fills that critical void. It’s incredibly reasonably priced, which means that the primary aim of this book is clearly to educate as many people as possible – in modern times, this is thoroughly admirable.

I would definitely recommend this book to anyone, ranging from any members of the public who want to know what ‘dementia’ is (it contains some complicated areas brilliantly explained too including types of dementia and both pharmacological and non-pharmacological interventions), to current health professionals wanting to brush up on their knowledge and relevant attitudes, behaviours and skills. This book gets straight to the nitty-gritty of the diverse range of topics of dementia, and refreshingly has no sense of ‘me, me, me’ coming from the authorship. Can you learn as much about dementia through other routes? My answer is: definitely not; but it’s true that you should learn as much as you can about dementia from anyone or anywhere, particularly from other leaders living with dementia. Is it a book you should at some stage meet in your exploration of dementia: I’d humbly submit, definitely.

Dr Shibley Rahman
@dr_shibley

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Time for the ‘little platoons’ of Dementia Friends to give way for something more impressive

JH DF

Although never in the Coalition agreement, the Big Society was the ‘next big thing’ of the David Cameron government. Cameron boasted, at the start of that period of forced political marriage, that he wished his tenure of office to be judged by three things: Afghanistan, the reduction of the deficit, and ‘the Big Society’.

The Big Society never achieved traction despite many many launches and relaunches, lunches and re-lunches. Rather like Cameron himself, the idea was tolerated rather than loved. The Big Society, Cameron admitted, was not supposed to be an original idea but a rebadging of inherently worthy elements of society: in other words, devolution of purpose to members of society, a reduction in the top-down power of the State, and ‘social action’.

Irrespective of the nauseating graphics on Twitter, actually, social action has been done to death, along with call to actions. The ideological priority placed better customer service with a leading high street brand as a high priority in the dementia friendly community than improved human rights of residents in care homes.

It was always said that dementia friendly communities was ‘more than health and social care’, but the result always was nearly ubiquitously to expunge discussion of health and social care needs of people with dementia and carers out of the equation. Social care was diabolically addressed in the original 2012 Prime Minister Dementia Challenge, and the rest is history.

Well, relatively recent history to boot plays this out. At the weekend, the NHS was controversially called a ‘humanitarian crisis’ by the Red Cross, but putting aside the fairness of equating the NHS to Syria or Yemen it is undeniable that the 800,000 or so people with dementia with their complex comorbidities are amongst those caught up in waiting for hours to become admitted to NHS hospitals and amongst those to be stuck in hospitals without prompt care packages.

And the NHS crisis is not simply a crisis of the NHS. It is a crisis of the whole system, especially housing and social care, and whilst these continue to be neglected compared to leading high street brands and social enterprises specialising in dementia friendly gimmickry, the dementia friendly new world cannot materialise.

At around 2011 and 2012, Jeremy Hughes CBE, nearly appointed CEO of the Alzheimer’s Society, made numerous noises along with then Tory Minister for Civil Society Nick Hurd MP about how “dementia friends”, a call to action in dementia awareness, was a good example of how the third sector (no longer to be called the ‘voluntary sector’), the State and the community could all work together. This was apparently ‘the Big Society in action’.

Ideologically, this came at the time of wishing to liberalise the NHS market, while personal budgets continued to be rolled out through the back door in social care policy, through the Health and Social Care Act (2012). The ideological machinery was set up to outsource and sell off bits of the State in delivering dementia care through the dreaded section 75.

Cameron, in rolling his sleeves up, is thought to have been inspired by the talk of ‘little platoons’ of that other great Conservative (other than him) Edmund Burke. This referred to an army of little busybodies up and down the land who would, say, be able to buy their local refuse collection services to run them.

And the Dementia Friends Champions, run by Angela Rippon CBE, were the modern equivalents of the little platoons. And Dementia Tsar, Prof Alistair Burns CBE, would promote Dementia Friends and latterly see to fruition a NHS Transformation Network which omitted caring well.

The lack of ‘caring well’ in the ‘living with dementia’ network is, make no mistake about it, a national disgrace. It is a very loud insult to the million or so unpaid family carers of dementia. It is a disgrace to respite care services. It is a disgrace to home care services. It is a disgrace to clinical specialist nurses, consistently and comprehensively given short shrift from the “dementia friendly community” despite robust agreement on their enormous clinical volume.

And, at the weekend, the new Conservative Prime Minister, Theresa May MP confirmed in both an article in the Sunday Telegraph and an interview with Sophy Ridge for Sky, that she wished to see a ‘sharing society’ rather than a ‘big society’. I quipped with Sir David Nicholson, former CEO of the NHS, that sharing of risk was of course what enabled the provision of universal health care – and David said in a tweet ‘that is at the heart of it’.

I tweeted that the shared society was if the work by Phillip Blond in the think tank Respublica, though to have heavily influenced the Big Society, had never happened.  Blond responded also back in a tweet that one couldn’t be so sure.

From what little we do know about May’s new vision, and we do know she doesn’t like giving a ‘running commentary’ on anything, the shared society is less about the rights of individuals but their collective responsibilities, in which the State might possibly intervene to fix injustices.

At the moment, there are thousands of people with dementia and carers suffering from poor or no care, completely untouched by the little platoons of the Dementia Friends brigade. The ‘Care Connect’ offering of 2012 in care homes never quite happened. The vision of someone with a forget-me-not badge would help out somebody fumbling with change in Sainsbury’s, or be able to make a new diagnosis of dementia in Tescos, did not quite happen (and good thing, many would argue, too).

Unfortunately, resource allocation in services is a zero sum gain, and the millions pumped into Dementia Friends have seen sacrifices elsewhere. The gravy train of Dementia Friends, with a less than enthusiastic ‘social movement’ some conscripted online out of desperation, needs to give way to the shared society of better State intervention on enhancing health and wellbeing in dementia, particularly through more and more highly trained social care practitioners, more AHPs, more Doctors and more specialist clinical nurses.

The Big Society is dead. The dementia ‘awareness’ has been a very good thing – but it is time for the Dementia Friends to make way too.

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The desperate need for ‘dementia friendly communities’ in England to up their game

friends

As such, whilst “dementia friendly communities” have a clear brand identity and value to the Alzheimer’s Society and Alzheimer’s Disease International, it is concerning that there have only been thirteen papers ever in the peer reviewed literature specifically looking at the term including one review from 2016.

The problem with its adoption as a marketing brand is that it has largely escaped constructive criticism, particularly from commissioners who are not particularly familiar with people with dementia, carers, or the literature.

Whilst it is true that not all perspective on living a life with dementia or being a carer should necessarily viewed through a prism of the health and social care systems, it is intuitive the these should not be airbrushed out of the discussion, even if that would not particularly perturb Big Society, its brand ambassadors or powerful grant lobbyists. The NHS and social care systems are not getting adequate funding matched to demand, even if one views that ultimately the ‘better bang for your buck’ would be served by new models of care heading towards a US style of accountable care organisations.

The newly published Draft Action Plan on Dementia by the World Health Organisation, published just shy of Christmas 2016, is an important contribution, which takes us a lot further. My beef with the document is that it doesn’t really add up. The “prevention” arguments need to be done with extreme caution. There is a ‘history’ of prevention in medicine as being seen as the more profitable end of healthcare provision. See for example the famous lobbying of Nixon for the 1973 HMO Act. And the arguments for successful prevention can be overstated. If for example you believe that a high level of education can protective against dementia, this in itself does not explain why Oxford graduates Margaret Thatcher and Harold Wilson went on to develop dementia. There is, however, probably something in the prevention drive, in that the MRC CFAS study of epidemiology of Cambridge strongly points to successful targeting of vascular risk factors being able to reduce the incidence of dementia.

The WHO Draft Action Plan is further problematic for England as it takes about universal coverage for NHS and social care (the latter is clearly not the cause being means tested and now being subject to considerable local authority rationing). Furthermore, if it involves a rôle for private insurance system, you can immediately see the problem of insurance packages for dementia, even if you have the most basic knowledge of insurance law. That is, an insurer will want to make voidable any insurance contracts where the person being insured has not been complete or fraudulent in specifying risky behaviours for dementia when he or she took out the insurance package. Insurance companies are of course scrupulous about paying out, as we know from the US jurisdiction. And you also can’t directly sue the insurer.

That aside, it is clear that ‘dementia friendly communities’ needs a revamp. As acknowledged, there are many different forms of dementia with different manifestations according to how brain function has been affected. The actual diagnosis is a moot point often, with many diagnoses being ultimately being called ‘mixed’. The term ‘friendly’ is a nonsense, in that one would be hard pushed to advocate a campaign called ‘dementia nasty communities’. And we don’t know how big a community is, although we do know from the initial guidance of the Big Society which falls into the timeline of dementia friendly communities in the England that communities are large enough to drive local community action, decreasing the need for expensive State-driven intervention. What we have seen in England of course is relative draconian cuts in the NHS and social care, while the brand of the Alzheimer’s Society and its chief proponents have gone from strength to strength.

The original definition of the ‘dementia friendly community’ in England by the Alzheimer’s Society completely failed to address two extremely important issues. Firstly, the independent living argument was made with barely any reference to the impact of disability on loss of independence, and yet this was precisely the argument from the WHO Aged Cities work which predated the English dementia friendly communities. The effect of this was to ignore completely dementia as a disability clearly stated in the regulations to the Equality Act (2010), and strongly alluded to in the preamble of the United Nations Convention of Rights for Persons with Disabilities. Secondly, the human rights argument, with at its heart protection of individual against excesses of their of the State (e.g. lack of dignity in dementia care, excess surveillance in care homes, mitigation against physical restraint), was utterly lost in the English version, though the Scottish version did well to enmesh the PANEL human-rights based approaches in its policy.

The emphasis in the Alzheimer’s Society version is clearly one which benefits the economy, in keeping with the Big Society. Not everyone with dementia wishes to see themselves as ‘economically productive’. Besides, if you took out the hard work done by unpaid carers, the economy would implode under the weight of unmet needs. Carers are absolutely pivotal in getting the diagnosis and management of people with dementia right, as well as improving their wellbeing. On a practical basis, the carer has an invisible hand on the timing of when crises happen, or when a person with dementia may have his or her needs better catered for by a residential care settings.

You don’t see much of carers, say compared to high street banks, in the Alzheimer’s Society ‘dementia friendly community’. High Street Banks can easily all very well market themselves as ‘dementia friendly’, creating competitive advantage through a ‘nudge’. But that’s all it is – marketing, if the customer experience does not actually improve. We do not know how many outcomes have realistically been produced. For example, for all the millions of pounds which have been pumped into ‘Dementia Friends’, why is it that newspaper headlines are incessantly using the terms ‘dementia victims’ or ‘dementia sufferers”? It is as if there is absolutely little accountability on the ‘return of investment’ of this initiative, to a large extent funded by the taxpayer with money leaching into marketing agencies thereafter.

It is therefore a substantial improvement that cross-cutting themes in the new WHO Draft Action on Dementia include improving the human rights of persons with dementia, empowerment and engagement of people with dementia and their carers. The NHS England Transformation Network has the appearance with an emperor with no clothes on as it has no ‘caring well’, in addition to the other ‘wells’ – see below, reproduced under the open government license.

dementia-well-pathway

The relentless airbrushing of ‘caring well’ might suit people who wish to pretend that social care does not exist, or that clinical specialist nurses (Admiral nurses) do not exist either, or that respite care and domiciliary care are an utter irrelevance – but sadly this rests uneasily with the rest of the world’s policy on dementia.

WHO therefore arrive at a much more balanced view of ‘dementia friendliness’, para. 31:

31. A dementia-friendly society possesses an inclusive and accessible community environment that optimizes opportunities for health, participation and security for all people, in order to ensure quality of life and dignity for people with dementia, their carers and families. Shared key aspects of dementia-friendly initiatives include safeguarding the human rights of people with dementia, tackling the stigmatization associated with dementia, promoting a greater involvement of people with dementia in society, and supporting families and carers of people with dementia. The concept of dementia-friendliness is tightly linked to societies also being age-friendly. Both age- and dementia-friendly initiatives should take into account the fact that a significant number of older people are living alone and are sometimes very isolated.”

And I feel this is one which clearly reflects a rights-based consciousness, investing in concepts such as autonomy and dignity, the themes of the Alzheimer’s Europe conference in Glasgow in 2014. This definition gets away from the “does he take sugar?” approach to dementia, and affords people with dementia and carers with hugely more respect. Now that the World Health Organisation have given a lead, there is now a definite need for England to up its game.

@dr_shibley

 

Note. Dr Shibley Rahman’s book on integrated care pathways in dementia is about to be published by Jessica Kingsley Publishers on January 19th 2017. It is called “Enhancing health and wellbeing in dementia: a person-centred integrated care approach”.

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