Home » Posts tagged 'wellbeing'
Tag Archives: wellbeing
Time for a new regeneration. The New Secretary of State for Dementia.
Ed Miliband looks a bit awkward eating a bacon sarnie, or simply looks a bit “weird”. This man doesn’t look like your next Prime Minister?
But switch back into the reality. A cosmetic reshuffle where the present Coalition had to ditch a Secretary of State more toxic than nuclear waste from Sellafield to transport in a catwalk of tokenistic young hopefuls, “governing for a modern Britain”.
And engage a bit with my reality: where English law centres have been decimated, nobody is feeling particularly “better off” due to the cost of living crisis, GPs have been pilloried for being “coasters”, criminal barristers have gone on strike, or you can’t get your passport on time.
Whisper it quietly, and nobody wants to admit it, that despite all the concerns that Labour will front another set of middle-class neoliberal policies, Labour is in fact going to walk it on May 8th 2015 as the new UK government.
This will obviously be quite a shock to the system, and you can already feel the Civil Service behind the scenes mentally preparing themselves for a change in flavour for the dementia policy.
The current dementia policy had “Nudge” fingerprints all over it. “Customer facing” corporates could become dementia friendly so as to allow market forces to gain competitive advantage for being ‘friendly’ to customers living with dementia.
The Alzheimer’s Society got thrust into the limelight with the Prime Minister’s Dementia Challenge, ably supported by Alzheimer Research UK, to offer the perfect package for raising awareness about dementia and offering hope for treatment through basic research. This private-public partnership was set up for optimal rent seeking behaviour, with the pill sugared with the trite and pathetic slogan, “care for today, and cure for tomorrow.”
Except the problem was that they were unable to become critical lobbying organisations against this Government, as social care cuts hit and dementia care went down the pan. Dementia UK hardly got a change to get a look in, and it looked as if a policy of specialist nurses (such as Admiral nurses) would get consigned to history. They are, after all, not mentioned in the most recent All Party Parliamentary Group report on dementia.
It is widely expected that Labour’s NHS policy will be strongly frontloaded with a promise of equality, which the last Labour government only just managed to get to the statute books. Insiders reckon that this policy will be frontloaded with an election pledge with equality as a strong theme.
In the last few years, it has become recognised that caregivers feel totally unsupported, people get taken from pillar to post in a fragmented, disorganised system for dementia with no overall coordinator, and there are vast chasms between the NHS and social care treatment of dementia.
The next Government therefore is well known to be getting ready for ‘whole person care’, and it now seems likely that the new Secretary of State for Health and Care under a new government will have to deliver this under existing structures. This will clearly require local authorities and national organisations to work to nationally acceptable outcomes for health and wellbeing through empowered Health and Wellbeing Boards. This will help to mitigate against the rather piecemeal patchwork for commissioning of dementia where contracts tend to be given out to your friends rather than the quality of work. Health and Wellbeing Boards are best placed to understand wellbeing as an outcome (which can become missed in research strategies of large corporate-like charities which focus on care, cure and prevention).
And the switch in emphasis from aspirational friendly to a legal equality footing is highly significant. The new policy for dementia under the new Secretary of State will be delivering what people living with dementia have long sought: not “extra favours”, but just to be able to given equal chances as others. Environments will have signage as reasonable adjustments for the cognitive disabilities of people living with dementia in the community under the force of law, rather than leaving up to the whim of a corporate to think about with with the guidance of a fundraising-centred charity to implement.
With the end of the Prime Minister’s Dementia Challenge in March 2015, which has been highly successful in places in delivering ‘dementia friendly communities’, a commitment to improved diagnosis rates and improved research, it is hoped that the next government will be able to take the baton without any problems. It will be quite a public ‘regeneration’ from Hunt to Burnham, but one which many people are looking forward to.
Foreword to my book ‘Living well with dementia’ by Prof Facundo Manes
This is a Foreword to my book entitled ‘Living well with dementia‘, a 18-chapter book looking at the concept of living well in dementia, and practical ways in which it might be achieved. Whilst the book is written by me (Shibley), I am honoured that this particular Foreword is written by Prof Facundo Manes.
There are two other Forewords that also make for a brilliant introduction to my book.
Sally-Ann Marciano’s Foreword is here.
Prof John Hodges’ Foreword is here.
Prof Manes’ biography is here (translation by Google Translate):
“Facundo Manes is an Argentinian neuroscientist. He was born in 1969, and spent his childhood and adolescence in Salto, Buenos Aires Province. He studied at the Faculty of Medicine, University of Buenos Aires, where he graduated in 1992, and then at the University of Cambridge, England (Master in Sciences). After completing his postgraduate training abroad (USA and England) he returned to the country with the firm commitment to develop local resources to improve clinical standards and research in cognitive neuroscience and neuropsychiatry.
He created and currently directs INECO (Institute of Cognitive Neurology) and the Institute of Neurosciences, Favaloro Foundation in Buenos Aires City. Both institutions are world leaders in original scientific publications in cognitive neuroscience. He is also President of the World Federation of Neurology Research Group on Aphasia and Cognitive Disorders (RGACD) and of the Latin American Division of the Society for Social Neuroscience. Facundo Manes has taught at the University of Buenos Aires and the Universidad Católica Argentina. He is currently Professor of Neurology and Cognitive Neuroscience, Faculty of Medicine and Psychology of the Favaloro University and was appointed Professor of Experimental Psychology at the University of South Carolina, USA.
He has published over 100 scientific papers in the most prestigious original specialised international journals such as Brain and Nature Neuroscience. He has also given lectures at several international scientific fora as the “Royal Society of Medicine” (London) and the “New York Academy of Sciences”, among others. His current area of ??research is the neurobiology of mental processes. He believes in the importance of scientific disclosure for Society. He led the program ” The Brain Enigmas ” on Argentina TV and wrote many scientific articles in the national press. Finally, Prof. Facundo Manes is convinced that the wealth of a country is measured by the value of human capital , education, science and technology, and that there is the basis for social development.
This biography wants to put on record this journey. And the beginning of the future.”
FOREWORD TO ‘LIVING WELL WITH DEMENTIA’ BY PROFESSOR FACUNDO MANES, PROFESSOR OF NEUROLOGY AND COGNITIVE NEUROSCIENCE AT FAVAROLO UNIVERSITY, BUENOS AIRES, ARGENTINA AND CO-CHAIR OF THE WORLD FEDERATION OF NEUROLOGY APHASIA/COGNITIVE DISORDERS RESEARCH GROUP
A timely diagnosis of dementia can be a gateway to appropriate care for that particular person. Whilst historically an emphasis has been given to medication, there is no doubt that understanding the person and his or her environment is central to dementia care. Shibley’s book will be of massive help to dementia researchers worldwide in my view, as well as to actual patients and their carers, and is great example of the practical application of research. For patients with dementia, the assistance of caregivers can be necessary for many activities of daily living, such as medication management, financial matters, dressing, planning, and communication with family and friends. The majority of caregivers provide high levels of care, yet at the same time they are burdened by the loss of their loved ones. Interventions developed to offer support for caregivers to dementia patients living at home include counselling, training and education programmes, homecare/health care teams, respite care, and information technology based support. There is evidence to support the view that caregivers of patients with dementia especially benefit from these initiatives.
I am currently the Co-Chair of Aphasia/Cognitive Disorders Research Group of the World Federation of Neurology (WFN RG ACD). In this group, we also have a specialist interest in world dementia research. “Wellbeing” is notoriously difficult to define. Indeed, the World Health Organization indirectly defines wellbeing through its definition of mental health:
“Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.” (WHO, 2011)
Such a definition necessarily emphasises the potential contribution of a person to society. Some people who participate in research are voluntarily contributing to society. Irrespective of the importance that they assign to their own wellbeing, it is the duty and responsibility of researchers to protect participants’ wellbeing and even to contribute towards it if possible. Participating in research can and should be a positive experience.
I felt that there is much ‘positive energy’ in dementia research around the world. Dementia research is very much a global effort, and many laboratories work in partnership both nationally and internationally, where expertise can be pooled and more progress can be made through collaborative efforts.
In England, the support and funding of world-class health research in the best possible facilities by NIHR, Medical Research Council, the Economic and Social Research Council and the Research Charities is vital to the development of new and better treatments, diagnostics and care. Likewise, the “World Brain Alliance” is working toward making the brain, its health, and its disorders the subject of a future United Nations General Assembly meeting. As part of this effort, a “World Brain Summit” is being planned for 2014, Europe’s “Brain Year,” to create a platform involving professional organisations, industry, patient groups, and the public in an effort to set a World Brain Agenda.
It is certainly appropriate to think these are exciting times, at last, for living well with dementia.
Prof Facundo Manes
Buenos Aires,?Argentina
24th August 2013
References
Mental health: a state of wellbeing. [October 2011]
A Foreword to my book ‘Living well with dementia’ written by Sally-Ann Marciano (@nursemaiden)
This book has now been published and is available here.
I am very grateful to Sally-Ann for writing a Foreword to my book on ‘Living well with dementia’. The other Foreword has been written by Prof John Hodges, Professor of Cognitive Neurology, NEURA Australia and Emeritus Professor of Behavioural Neurology Cambridge University. Sally-Ann offers an unique perspective regarding her father’s own dementia, especially as she is a trained nurse. Sally-Ann’s journey, I feel, shows how in its purest form a “medical model” can fail patients, and a person-centred approach might be much positive for all. Prof. Hodges and I feel deeply honoured that Sally-Ann has added her enormously valuable contributions here.
FOREWORD TO ‘LIVING WELL WITH DEMENTIA’ BY SALLY-ANN MARCIANO, PROJECT SPECIALIST, SKILLS UTILISATION PROJECT, SKILLS FOR HEALTH, BRISTOL.
I feel a tremendous honour that I have been asked to write a foreword to Shibley’s outstanding book. I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia. I have never met Shibley in person, which makes being asked to write this even more special. What we do have in common, however, is real passion for raising profile of dementia and a hope that we can – one day –improve care for all those living with dementia.
Many people with dementia will live for many years after their diagnosis, and it should be everyone’s ambition in health and social care to ensure that those living with dementia do so as well as possible for all of the remaining years of their life. Diagnosis is just the start of the journey, and, with that, should come full care and support to allow those with dementia to live where they wish, and with their closest present every step of the way.
Sadly my father’s experience revealed a system where no one appeared to take direct responsibility for his care or support. He was, rather, classified as a “social care problem”, and as a result, he had to fund his own care. Even when he was dying, his care was classified as “basic” so that he did not even qualify for funded health care. Our only visit was once-a-year from the memory nurse, and, as his condition declined, my once intelligent, articulate father, who did not even know my name towards the end, needed total care.
Dementia of Alzheimer type destroyed his brain so badly that my father was unable to feed himself, mobilise, or verbalise his needs. He became totally dependent on my mother 24/7. As the condition advanced, my father became increasingly frail, with recurrent chest infections due to aspiration from swallowing difficulties. Each time the GP would be called out, antibiotics prescribed, and so the cycle would begin again. As a nurse, I wanted to see proactive management of my father’s condition. The system locally, however, was quite unable to provide this service. I feel that the dementia of Alzheimer type is a terminal condition, and, as such, should be treated like other similar conditions in care models. What we instead experienced was a “reactive “system of care where the default option was admission to hospital into an environment where my father would quickly decline.
Dementia awareness and training amongst staff must be better; many staff within health and social care will come into contact with people living with dementia as part of their everyday work. That is why I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics “head on”, and put the person living with dementia and their families at the centre of his writing. You can tell it is written by someone who has observed dementia, has seen its joy, but also felt the pain.
My father was cared for at home right up until he died, mostly through the sheer determination of my mother to ensure she fulfilled his wishes. Not everyone is so fortunate, and for these individuals we really need to be their champion and advocate. Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.
Sally-Ann Marciano (@nursemaiden)
Bristol, England, United Kingdom
August 8th, 2013
Foreword to my book ‘Living well with dementia’ by Prof John Hodges
This is the Foreword to my book entitled ‘Living well with dementia‘, a 18-chapter book looking at the concept of living well in dementia, and practical ways in which it might be achieved. Whilst the book is written by me (Shibley), I am honoured that the Foreword is written by Prof John Hodges.
Prof Hodges’ biography is as follows:
John Hodges trained in medicine and psychiatry in London, Southampton and Oxford before gravitating to neurology and becoming enamoured by neuropsychology. In 1990, he was appointed a University Lecturer in Cambridge and in 1997 became MRC Professor of Behaviour Neurology. A sabbatical in Sydney in 2002 with Glenda Halliday rekindled a love of sea, sun and surf which culminated in a move here in 2007. He has written over 400 papers on aspects of neuropsychology (especially memory and languages) and dementia, plus six books. He is building a multidisciplinary research group focusing on aspects of frontotemporal dementia.
Resilience in the midst of austerity: a challenge for dementia wellbeing
In Prof. Felicia Huppert’s latest chapter entitled, “The state of well-being science: concepts, measures, interventions and policie”s, to appear in Interventions and Policies to Enhance Well-being (Huppert, F.A. and Cooper, C.L. (eds.) ), Prof. Huppert re-establishes the perspective that it is possible to demonstrate wellbeing even in the presence of a label of a clinical diagnosis. This aligns itself nicely with the argument which I have been advancing, that it is the possible to enhance the wellbeing of an individual with dementia through careful consideration of his or environment. For example, one could attempt to make the home or ward better designed, attempt to involve the individual with leisure activities or general activities (such as reminiscence therapy), seek to encourage adoption of assistive technologies or assisted-living technologies, or try to encourage more social activities including participation in a wider community. However, Huppert and So (2013), to establish what components comprise well-being, have examined carefully the internationally agreed criteria for the common mental disorders (as defined in DSM-IV and ICD-10) and for each symptom, listed the opposite characteristic. This resulted in a list of ten features which represent positive mental health or ‘flourishing’. These are: competence, emotional stability, engagement, meaning, optimism, positive emotion, positive relationships, resilience, self esteem, vitality.
Just as symptoms of mental illness are combined in specific ways to provide an operational definition of each of the common mental disorders, they proposed that positive features could be combined in a specific way to provide an operational definition of flourishing. The diagnostic criteria for a mental disorder do not require that all the symptoms be present; likewise, the operational definitions of flourishing (Keyes, 2002) do not require that all the features of positive feeling and functioning be present. There is currently a relative paucity of literature on the efficacy of psychological techniques such as “mindfulness” in enhancing wellbeing in individuals with dementia, but it is possible that innovative ways of improving any aspects of the multi-dimensional construct could be developed through such a technique. Among the reported benefits of mindfulness training in other populations, which are related to subjective well-being, are: reductions in stress and anxiety, increased positive mood, improved sleep quality, better emotion regulations, greater bodily awareness and increased vitality, and greater empathy (Huppert, in press.)
Clearly, ignoring the economic climate of an individual with dementia is not going to be possible, although I have thus far successfully managed to avoid such a discussion. The data reported in Huppert and So (2013) are from 2006/07, two years before the severe economic recession from which many countries have since suffered. Huppert (2013) argues that it would be very interesting to know if the recession has changed the prevalence of flourishing or its component features within and between countries, and the extent to which country rankings of the prevalence of flourishing may have altered. Relatively recent data from the Gallup World Poll show almost no impact of the economics crisis on subjective well-being in the UK (Crabtree, 2010). However, one clearly has to acknowledge the ‘social determinants of health”, famously described by Marmot (2012) as: “Mental health and mental illness are profoundly affected by the social determinants of health; psychosocial processes are important pathways by which the social environment … impact [s] on … physical and mental health … ” Indeed McKee and colleagues (McKee et al., 2012) make a constructive but profoundly depressing link between illbeing and austerity:
“For many months, the political and financial aspects of the crisis have filled the headlines. However, behind those headlines, there are many individual human stories that remain untold. They include people with chronic diseases unable to access lifesustaining medicines, persons with rare diseases who are losing income support and forced to care for themselves, and those whose hopes of a better life in the future have been dashed see no alternative but to commit suicide. So far, the discussion has been limited to finance ministers and their counterparts in the international financial institutions. Health ministers have failed to get a seat at the table. As a consequence, the impact on the health and wellbeing of ordinary people was barely considered until they made their feelings clear at the ballot box.”
More optimistically, Huppert and So (2011) argue that this parcellation of the positive wellbeing multidimensional construct may be useful for developing targeted interventions:
“If a population group is high on some features of well-being such as positive relationships, but low on others such as engagement or resilience, it is clear where interventions should be targeted.”
Resilience
Psychosocial resilience is a dimension of wellbeing which perhaps will be worth considering in detail, of how an individual and immediates might be able to cope and adapt to future adversity. This indeed is reflected in a definition of psychosocial resilience as provided by Williams and Kemp (in press) as “a person’s capacity for adapting psychologically, emotionally and physically reasonably well and without lasting detriment to self, relationships or personal development in the face of adversity, threat or challenge.” Reaching a logical conclusion, whilst there might be aspects of life which encourage illbeing, a reasonable strategy might be to strengthen components which can help to improve specific aspects of wellbeing. This would not have been possible had it not been for the work of Prof. Felicia Huppert and colleagues emphasising that wellbeing is a multidimensional construct, in the same way that it is widely acknowledged that it is unhelpful to think of dementia as a unitary diagnosis.
The Department of Health (2012) policy document, “No health without mental health: implementation framework” very nicely produces a backdrop for emphasising the importance of wellbeing in dementia. Their core principles are set out “a clear and compelling vision, centred around six objectives: more people will have good mental health, more people with mental health problems will recover, more people with mental health problems will have good physical health, more people will have a positive experience of care and support, fewer people will suffer avoidable harm, and fewer people will experience stigma and discrimination“.
Notwithstanding this, it appears that the analysis of ‘living well in dementia’ is now benefiting from an approach which has led to an appreciation that no dementia is clinically the same; nobody’s wellbeing is exactly the same, because of the way in which all the contributing parts have come together. This approach is elegant, holds incredible promise for the future.
References
Crabtree, S. (2010) Britons’ wellbeing stable through economic crisis Gallup, November 24, 2010. Available at: http://www.gallup.com/poll/144938/Britons-W%20ellbeing-Stable-Economic-Crisis.aspx
Department of Health (2012) No health without mental health: implementation framework, available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/156084/No-Health-Without-Mental-Health-Implementation-Framework-Report-accessible-version.pdf.pdf
Huppert, F. (in press) The state of well-being science: concepts, measures, interventions and policies, to appear in Huppert, F.A. and Cooper, C.L. (eds.) Interventions and Policies to Enhance Well-being, Oxford: Wiley-Blackwell.
Huppert, F.A. and So, T.T.C. (2013) Flourishing across Europe: application of a new conceptual framework for defining well-being, Social Indicators Research, 110(3), pp 837-861.
Keyes, C. L. M., (2002) The mental health continuum: From languishing to flourishing in life, Journal of Health and Social Behavior, 43, 207– 222.
Marmot M. (2012) Health inequalities and mental life, Advances in Psychiatric Treatment, 18, pp. 320-322.
McKee, M., Karanikolos, M., Belcher, P., and Stuckler, D. (2012) Austerity: a failed experiment on the people of Europe. Clin Med, 12(4), pp. 346-50, available at: http://www.rcplondon.ac.uk/sites/default/files/documents/clinmed-124-p346-350-mckee.pdf.
Williams, R, and Kemp, V. (in press.) Psychosocial resilience, psychosocial care and forensic mental healthcare. In: Bailey S, Tarbuck P. (eds.) Adolescence Forensic Psychiatry, Cambridge: Cambridge University Press.
Preface to my book: “Living well with dementia: where the person meets the environment”
Volumetric MRI dementia
Introduction
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 problem, 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, building on progress made through the National Dementia Strategy, so that people with dementia, their carers and families get the services and support 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 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. Thinking about how society should respond 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. Whilst indeed there has been a lead through the Prime Minister’s Dementia Challenge (2012), it is clear that 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.
NICE quality standard 30 on ‘supporting people to live well with dementia’
In 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. I hope the book will be useful for a ‘diverse audience’, in other words anyone interested in the diagnosis, investigation or management of dementia, with especial emphasis on improving wellbeing; such interested people might particularly include the general public, psychologists, innovation specialists,, psychiatrists, neurologists, geriatricians, general medical physicians, nurses, public health physicians, medical students, engineers, economists, psychologists, commissioners and hospital managers. 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: this is described in chapter 4 has 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. This timely 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 a discussion which should not be avoided. 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 his/her immediates. 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.
Contents
- Introduction
- What is “living well with dementia”?
- Measuring living well with dementia
- Socio-economic arguments for promoting living well with dementia
- A public health perspective on living well in dementia, and the debate over screening
- The relevance of the person for living well with dementia
- Leisure activities and living well with dementia
- Maintaining wellbeing in end-of-life care for living well with dementia
- Living well with specific types of dementia: a cognitive neurology perspective
- General activities which encourage wellbeing.
- Decision-making and an introduction to advocacy in living well with dementia
- Communication and living well with dementia
- Home and ward design to promote living well with dementia
- Assistive technology and living well with dementia
- Ambient-assisted living well with dementia
- The importance of built environments for living well with dementia
- Dementia-friendly communities and living well with dementia
- Conclusion
Chapter synopses
It is possible to read each chapter in this book independently, and indeed each chapter is independently referenced.
Chapter 2 is an introduction to the whole book. 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 a 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 should 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 limited, serious considerations have to be made as to which interventions are truly cost-effective, including of course the assistive technologies.
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. A core aim of the National Dementia Strategy (1999) 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).
Chapter 9 identifies that it is in fact 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 neural networks which are hypothesised to be important in behavioural variant frontotemporal dementia, and how this “social context network model” fundamentally affects our notion of wellbeing in such individuals.
Chapter 10 introduces ‘general activities which encourage wellbeing’, in a first chapter on the possibility of “assistive technologies” in enabling individuals with dementia to live well. Certain memories can be particularly potent in the dementia of the Alzheimer Type, and, whilst the ‘jury is possibly out’ on the validity 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. General principles are described as how to wellbeing can be improved through careful design of certain parts of the house (such as balconies, bathrooms, bedrooms, living rooms and dining rooms), and considers the 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.
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”.
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.
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.
References
Department of Health (2009). Living well with dementia: A National Dementia Strategy: Putting people first. London: Her Majesty’s Stationery Office. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/dh_094052.pdf.
Department of Health (2013) The Dementia Challenge. London: Her Majesty’s Stationery Office. Available at: http://dementiachallenge.dh.gov.uk
Department of Health (2013) Improving care for people with dementia. London: Her Majesty’s Stationery Office. Available at: https://www.gov.uk/government/policies/improving-care-for-people-with-dementia
Department of Health (2012) The Prime Minister’s “Dementia Challenge”: Delivering major improvements in dementia care and research by 2015. London: Her Majesty’s Stationery Office. Available at: https://www.gov.uk/government/policies/improving-care-for-people-with-dementia
National Institute for Clinical Excellence (2013). Supporting people to live well with dementia (QS30). Available at: http://guidance.nice.org.uk/QS30.
UK government. Mental Capacity Act (2005) http://www.legislation.gov.uk/ukpga/2005/9/contents
