Preface to’Living well with dementia’

Dancing

“Living well with dementia” is a major new text on wellbeing in dementia to be published in January 2014.

Opening remarks 

Living well with dementia is fundamentally about what an individual can do, rather than what he or she cannot do. For example, on an evening in March 2013, Filmmakers and scientists come together at an event hosted by the University of Bristol to increase the public understanding of dementia. A series of short films about dementia, curated by local filmmaker James Murray-White, preceded a discussion with researchers from the University of Bristol and other institutions supported by “BRACE”, a local charity that funds research into Alzheimer’s disease and other forms of dementia.

At the start of this book, I begin a long journey into ‘living well with dementia’, but this a journey which will only begin in English public health policy really where this book finishes.  The main actors of the play are now well known. Wellbeing is more than the absence of illbeing, just as health is more than the absence of disease (Huppert, 2013, citing WHO, 1947). Huppert – only this year – remarks, “Yet it is remarkable how resistant large sectors of the academic, practitioner, and policy communities are to recognising the importance of positive well-being or of positive health.”

This has been incredibly challenging book to write, but also an incredibly exciting one. It is a massively complex issue, but an extremely significant one for society. Dementia in our population is a huge issue, but so is wellbeing; any attempt to write a book on both of these issues is bound to be ambitious task. I have been fortunate in that I have written the book completely unfunded, with no income in the form of sponsorship even. This means that I can write freely without any conflicts-of-interest at all. This book does not give any medical or legal advice, and you are encouraged anyway to read this book in conjunction with other sources of useful information. You are, in particular, advised to be guided by professional lawyers and physicians for aspects of advice which require their expertise (such as capacity-related issues, pain or hydration), but hopefully this book will provide an interesting and thought-provoking introduction to the ever-enlarging field of ‘living well with dementia’.

The scale of the ‘challenge’

According to the Department of Health’s “Improving care for people with dementia” (2013), there are around 800,000 people with dementia in the UK, and the disease ‘costs’ the economy £23 billion a year. By 2040, the number of people affected is expected to double – and the costs are likely to treble. There is no doubt therefore about the scale of the societal issue, and it needs the finest minds in showing leadership on how to enable individuals with dementia to live better, and indeed live well. The Prime Minister’s Challenge on dementia (“Challenge”) (2012) set out a renewed ambition to go further and faster on substantial progress in previous policy, building on the work of the National Dementia Strategy, so that people with dementia, their carers and families essentially get the services and support that they need. This Challenge wished to address in particular certain issues, such as the observation that the number of people with dementia is increasing, that currently the diagnosis rates are thought to be relatively low, and there is sadly a lack of awareness and skills needed to support people with dementia and their carers. Whilst it is possibly difficult to find a ‘miracle cure’ for dementia, it is a reasonable aspiration for individuals with dementia (and their immediates) to have as best a quality of life as possible, and it is not necessarily the case that subtle but significant improvements in quality of life will “cost the earth”.

It is intended that this book should not just of interest in the UK, as the problems in healthcare are relevant to all jurisdictions. This story will be of interest to patients, families, friends, geriatricians, psychiatrists, nurses, students, social works, economists, lawyers, managers, leaders, journalists, public health professionals, GPs, commissioners, politicians, and many more. Thinking about how society should respond inevitably does pose some jurisdiction-specific issues; for example, this book refers to legislation in the UK such as the Equality Act [2010] or the Mental Capacity Act [2005], or regulations in health and safety relevant to building design in the UK. However, a consideration of the global issues in public health leads one quickly to appreciate the complexity of the economic case for improving wellbeing in individuals in dementia and their immediates, and that there are many people who are genuinely interested.

Responding to the ‘challenge’

Whilst indeed there has been a lead through the Prime Minister’s Dementia Challenge (2012), previous administrations in England have latterly decided to prioritise dementia as a public health priority (for example, the National Dementia Strategy, “Living well with dementia” (2009)). The ‘ecosystem’ of interested parties is large, and it is striking that there are so many passionate ‘#dementiachallengers’ on Twitter daily for example who are always a source of contemporary information, enthusiasm and innovation. There are currently huge advances being made in research and policy, and it is only possible through dementia communities ‘working together’ to keep abreast of them all. For that reason, this book has necessarily had to include electronic references, and I have tried to maintain links as correct as up-to-date at the time of publication. However, please feel free to look for any related information anywhere, and please do not use this book as an authoritative source of information to rely on necessarily. This book is intended simply as an introduction to a vibrant field, and certainly please be guided by healthcare professionals regarding individual care. The text of this book provides general principles, which I hope you might find interesting.

The NICE quality standard on ‘supporting people to live well with dementia’

The original clinical guidance by NICE for dementia (CG42) was published as far back as 2006, and yet the importance of wellbeing in dementia is clearly seen even then. This in part has been driven by a relative lack of strong neuropharmacological interventions in early dementia of the Alzheimer type, perhaps. As recently as April 2013, NICE published its quality standard 30 on ‘supporting people to live well with dementia’. This quality standard was intended to cover the care and support of people with dementia. It applies to all social care settings and services working with and caring for people with dementia.

NICE quality standards are supposed to describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing guidance, which provide an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.

The areas covered in this ‘quality standard’ includes:

Statement 1. People worried about possible dementia in themselves or someone they know can discuss their concerns, and the options of seeking a diagnosis, with someone with knowledge and expertise.

Statement 2. People with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.

Statement 3. People with dementia participate, with the involvement of their carers, in a review of their needs and preferences when their circumstances change

Statement 4. People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.

Statement 5. People with dementia are enabled, with the involvement of their carers, to maintain and develop relationships.

Statement 6. People with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.

Statement 7. People with dementia live in housing that meets their specific needs.

Statement 8. People with dementia have opportunities, with the involvement of their carers, to participate in and influence the design, planning, evaluation and delivery of services.

Statement 9. People with dementia are enabled, with the involvement of their carers, to access independent advocacy services.

Statement 10. People with dementia are enabled, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.

Overview

The aim of this book was not to provide a prescriptive text for this quality standard, but to make occasional reference to it where appropriate. I am hoping especially that the book will be interesting to what I have called ‘immediates’ – by which I mean people who are close to an individual with a diagnosis of dementia, which might include a friend or relative. It is therefore extremely hard to find all this information ‘in one place’, and it is hoped that this book will help to provide a much needed overview and to build bridges between different ‘silos’ of thinking.

The approach of the “National Dementia Strategy: Living well with dementia” (from the Department of Health) (2009) devotes the whole of its chapter 5 to the issue of living well with dementia. In the preceding chapter to this Strategy, chapter 4on ‘early diagnosis’, the approach described is obviously inclusive:

From our consultation, and based on a successful DH pilot and the DH cost-effectiveness case, it appears that new specialist services need to be commissioned to deliver good-quality early diagnosis and intervention. Such services would need to provide a simple single focus for referrals from primary care, and would work locally to stimulate understanding of dementia and referrals to the service. They would provide an inclusive service, working for people of all ages and from all ethnic backgrounds.

A ‘timely diagnosis’ is only of benefit, it is felt if there is a ‘useful’ intervention in dementia or appropriate support can be given in keeping with the wishes of the patient. The diagnosis has to be correct, and appropriate to the patient at that particular time. This is described in chapter 4 as having three essential components: making the diagnosis well, breaking the news of the diagnosis well to the individual with dementia and their immediates, and providing directly appropriate treatment, information, care and support for such individuals. The present book is part of a drive to dispel the notion that ‘nothing can be done’ in the context of management of dementia, even if current pharmacological therapies might have limited efficacy. The book is an overview of the field, describing what ‘wellbeing’ actually means, and why it is important in the context of national policy.

The book quickly establishes the importance of the ‘person’ in discussing dementia care, including independence, leisure and other activities, and, in the final stages, end-of-life care, which is an unavoidable discussion. No individual with dementia should be abandoned in relation to his or her environment, and indeed there is much evidence to support the idea that the environment can be optimised to improve the wellbeing of an individual with dementia and people who are closest to him or her. Considerations include home and ward design, the use of assistive technologies and telecare, and the ‘built environment’. A constructive interaction of an individual with his or her environment is clearly vital, and this includes understanding communication issues, how to champion the rights of an individual living well with dementia through independent advocacy, and the way in which ‘dementia friendly communities’ can be supported.

Chapter headings 

  1. Introduction
  2. What is “living well with dementia”?
  3. Measuring living well with dementia
  4. Socio-economic arguments for promoting living well with dementia
  5. A public health perspective on living well in dementia, and the debate over screening
  6. The relevance of the person for living well with dementia
  7. Leisure activities and living well with dementia
  8. Maintaining wellbeing in end-of-life care for living well with dementia
  9. Living well with specific types of dementia: a cognitive neurology perspective
  10. General activities which encourage wellbeing.
  11. Decision-making, capacity and advocacy in living well with dementia
  12. Communication and living well with dementia
  13. Home and ward design to promote living well with dementia
  14. Assistive technology and living well with dementia
  15. Ambient-assisted living well with dementia
  16. The importance of built environments for living well with dementia
  17. Dementia-friendly communities and living well with dementia
  18. Conclusion

Chapter synopses

It is possible to read each chapter in this book independently, and indeed each chapter is independently referenced. However, I feel the book makes much more sense if read from beginning to end – not at one go obviously!

 Chapter 2 is an introduction to the whole book. It introduces the concept of what is like to ‘live well with dementia’. Investigating wellbeing has broadened the scope of previously overly narrow approaches to healthcare in measuring outcomes. This chapter also introduces the idea that it is grossly unfair to consider ‘dementia’ as an unitary diagnosis, as in fact the term is a portmanteau of hundreds of different conditions at least. There has been an incorrect growing trend that ‘dementia’ and ‘memory problems’ are entirely synonymous, and this has added unnecessary noise to the debate. Dementia care is currently done in a number of different settings, and assisted living may be of increasing relevance in a drive to encourage individuals to live well independently with dementia.

Chapter 3 presents the formidable challenges of how ‘living well’ might be measured in general. There are issues about how quality of life measures change as a dementia progresses, what the relationship might be between wellbeing and physical health, and how wellbeing in dementia could be measured accurately at all.

Chapter 4 looks at the current socio-economic arguments for promoting a wellbeing approach in dementia. There are a number of converging cases for considering wellbeing, such as the economic case, the ethical case and a case based on social equality. While resources are always limited, serious considerations have to be made as to which interventions are truly cost-effective, including, of course, the assistive technologies and ambient-living innovations.

Chapter 5 presents the background for dementia as a public health issue in the UK. There is also a very active debate as to whether one should ‘screen’ for dementia, although the general consensus at present is that screening for dementia as a whole would be inadvisable. A core aim of the National Dementia Strategy (2009) is therefore to ensure that effective services for early diagnosis and intervention are available for all on a nationwide basis. It is argued, in this Strategy, that, “the evidence available also points strongly to the value of early diagnosis and intervention to improve quality of life and to delay or prevent unnecessary admissions into care homes.”

Chapter 6 considers how and why being a ‘person’ has become so central to living well with dementia in academic and practitioner circles. In a way, the approach of ‘person-centred care’ is a historic one, but it has been a consistent strand of English health policy developing into contemporaneous views of integrated and whole-person care. This chapter also introduces ‘personhood’, and the approach of ‘dementia care approach’.

Chapter 7 addresses the specific rôle of leisure activities for an individual with dementia. Leisure activities are generally considered for many to be beneficial for the mental and physical wellbeing of individuals with dementia, and there are specific problems to be addressed such as the reported levels of relative inactivity in care homes.

Chapter 8 details how wellbeing is relevant also to end-of-life in dementia. This chapter considers the importance of support for carers, for the wellbeing of individuals with dementia and their carers. This chapter considers where optimal care could be given for individuals with dementia, the contribution of medication, but how it is vital to address specific issues in advanced dementia which have a direct impact on wellbeing (such as pain control). This is of course an extremely complicated professional area, with deeply rooted ethical issues, and this chapter only at best skims the surface of this huge sub-discipline from a general perspective.

Chapter 9 further elaborates the idea that it is impossible to consider dementia as a unitary diagnosis, and that specific forms of dementia can present their own formidable demands and issues. This chapter considers in detail how and why memory problems can be a presenting feature of dementia of the Alzheimer type, and the implications for interventions in wayfinding which could rationally improve wellbeing in such patients. The chapter also includes recent elegant work about the distributed neuronal networks which are hypothesised to be important in behavioural variant frontotemporal dementia, and proposes an initial view of how this “social context network model” fundamentally affects our notion of wellbeing in such individuals.

Chapter 10 introduces ‘general activities which encourage wellbeing’. Certain memories, once revived, can be particularly potent in the dementia of the Alzheimer Type, and, whilst the ‘jury is possibly out’ on the experimental robustness of reminiscence therapy, the chapter discusses the possible benefits of the CIRCA project on the wellbeing of individuals with dementia. Other activities are also considered; how they may help wellbeing, such as dancing, exercise, and music.

 Chapter 11 takes up an important theme in living well with dementia; that is empowering the invididual to make decisions, the law relating to capacity, and how independent advocacy services have a beneficial rôle to play. Independent dementia advocacy is a critical area of a statement in NICE QS30, and this chapter reviews types of advocacy (and its relevance to wellbeing and person-centred care), the current mental capacity legislation, and the crucial importance of diversity and equality in policy.

Chapter 12 explains why good communication is so crucial in the setting of individuals living well with, but not simply restricted to healthcare professionals. This not only appears to be in terms of providing information about the condition locally, but also face-to-face communication with people living well with dementia. This chapter looks in detail at both verbal and non-verbal methods of communication, with a view to raising awareness of their impact on living well with dementia.

 Chapter 13 analyses the importance of home and ward design for improving wellbeing in dementia. ‘Therapeutic design’ is a central philosophy of good design, and this chapter has as its focus a number of different setting. This is a philosophy which has been warmly embraced by a number of different stakeholders, ranging from the King’s Fund to RIBA, the professional body for architects in this jurisdiction. General principles for the improvement of wellbeing through careful design of certain parts of the house (such as balconies, bathrooms, bedrooms, living rooms and dining rooms) are described, and this chapter considers some basic neuroscience of sensory considerations at play (for example in lighting and vision, and sound and hearing.)

 Chapter 14 is the first of two chapters on ‘assistive technologies’ in dementia, providing an overview of this important area for living well with dementia. This chapter explains what ‘assistive technology’ is, what its potential limitations are, the INDEPENDENT project, the importance of “telehealth” (and important ethical considerations), and the design of ‘smart homes’.

Chapter 15 is the second of two chapters on ‘assistive technologies’ in dementia, looking specifically at an approach called ‘ambient-assisted living’ (AAL). The rationale behind the use of AAL in improving wellbeing is explained, as well as the general issue of how to encourage adoption of innovations in an older population. Detailed examples of specific AAL projects in improving wellbeing are described including SOPRANO, COACH and NOCTURNAL.

Chapter 16 introduces the general emphasis on the ‘built environment’ setting, and how inclusivity still drives this area of work in living well with dementia. Ageing presents its own challenges including opportunities and threats, but this chapter focuses on the remarkable initiatives which have recently taken place in improving the outside environment for individuals with dementia. The chapter details the I’DGO project, and highlights the especial importance of inclusive design for furthering wellbeing in dementia outside environments. The chapter concludes with an evolving theme in the research that the quality of wellbeing of an individual with dementia is a highly personal affair. It is very much dependent on that person’s unique interaction with his or her environment.

Chapter 17 considers how an individual with dementia lives as part of the rest of a community and society, and policy initiatives which have sought to address this. The discussion is unexpectedly problematic about a need to define what a ‘community’ might be, but the chapter includes domestic and international approaches to the ‘dementia-friendly community’, including the RSA’s “Connected Communities” and WHO’s “age-friendly communities” initiatives.

As a central policy plank which is thought to be critical for developing wellbeing in individuals with dementia and their immediates, this chapter considers why dementia-friendly communities are worth encouraging at all, why there is a societal need to involve individuals with dementia in their communities, what aspects individuals with dementia wish from such communities (including the “Four Cornerstones” model), and the benefits of “resilient communities”.

Chapter 18 completes my thesis. It concludes with a review of some of the themes which emerge in this book, but puts especial focus on the language of the debate regarding ‘prompt diagnosis’ or ‘timely diagnosis’ and tries to put current policy on living well with dementia into a realistic and achievable perspective.

 

Further information

You are advised to look at specialty websites which are devoted to all the dementias (such as medical charities), which often have useful information factsheets and booklets.

Also, the Department of Health and their ‘Dementia Challenge’ website is an impressive source of information. You are also advised to consult https://www.evidence.nhs.uk which has access to a number of useful contemporaneous clinical evidence sources. Online medical journals are also an excellent source of peer-reviewed research, such as the BMJ, the Lancet, and the New England Journal of Medicine. You are also strongly recommended to become familiar with the output of the King’s Fund, the Royal College of Physicians and the Royal College of Psychiatrists, which have all produced interesting contributions in this field.

In the references, I have decided to include some electronic references, but only where I feel this would really help, given the problems that these links may become dead ‘in due course’. All links are to citations which were accessible on the internet at the time of submission of the manuscript, on August 1st, 2013. I apologise if you are unable to find links as updated, though it might be worth using a search engine to discover whether links have been relocated. They are, by-and-large, important documents which are unlikely to be taken ‘off’ the internet.

 

 Looking to the future

There are, of course, no “right answers” to many issues, and a wise person is a person who knows where to find relevant information. However, the sense of optimism and goodwill is a genuine one in UK health policy, regarding dementia. Whilst there will often be difficult debates regarding dementia such as “How willing should a GP be to make a diagnosis of dementia when a patient has only gone to see his GP because of a sore throat?” or “Should we look to research a drug which can immunise people against dementia?”, the fact there are so many bright people in the UK working in areas relating to dementia is a real credit to English health policy as it faces formidable challenges of its own.

Developments in neuroscience and cognitive neurology have helped to shape this policy, but also there are formidable converging strands of thinking in social care, bioengineering, general medicine, economics, social and cognitive psychology and innovation management, to name but a few. The impact of the English law, for example in equality and mental capacity, cannot be underestimated either, and helps to see some of the policy elements as enforceable rights rather than well-meant aspirations. Understanding how elements of this jigsaw all produce a coherent picture of living well in dementia is certainly challenging, but undeniably rewarding.

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4 thoughts on “Preface to’Living well with dementia’

  1. Here’s to a great launch in January, Shibley, and thank you for producing this celebration of joy and wellbeing for people with dementia, their care partners and in fact just about everyone else too! I hope people will read this and understand what the true meaning of having dementia can be. So much can be gained by just listening to those who cope so well.

    Like

  2. Pingback: Welcome to Barbarous Britain: Treat your own dementia, Essex patients told By Shibley Rahman | Investigating the New Imperialism

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