Home » Clinical conditions (Page 2)
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
GPs who call “empowering patients with dementia” “simply big words” are missing the point
Andy Burnham MP spent much time in addressing how combined health and social care approaches were vital in dementia, and for example was instrumental in establishing the Dilnot report. Rather awkwardly, I have found a viscerally hostile response for a well-meant desire to improve the wellbeing of patients with dementia coming from GPs themselves, with some people, who are doctors, saying that “empowering patients” are big words and mean nothing. I cannot even begin to explain how disappointed about this I am, as failing to address the quality-of-life of patients in this difficult time is clearly not desirable, socialist health system or not.
I have been latterly bombarded by some GPs with arguments as to why individuals should not be given an early diagnosis of dementia, saying it can destroy relationships. GPs owe a primary duty of care to their patient, and are expected to observe confidentiality, so there are further issues there as well as the central pillar of ‘primum non nocere’, at first “do no harm”. However, GPs are expected to tell the truth to their patients of course, and part of the big issue in policy is that individuals are scared from getting a diagnosis for the symptoms for fear of stigma. And why should a person who is worried not receive help from a GP? For a younger patient, which a GP is likely to refer on, it is important to consider early-onset familial Alzheimer’s Disease, which takes the argument into a different realm of genetic counselling. It is not only a Department of Health drive, but also an international drive (and has been for some time). There are certainly operational issues in that GPs cannot possibly refer on all people to memory clinics and or primary care as that would overload the system, but there is all the time more sophisticated research into the sensitivity and specificity of screening tools in the community (e.g. GPCOG in Australia). Certainly, a GP will need to use some judgment, as it is not inconceivable that a busy GP might miss the one-in-a-million temporal lobe glioma presenting as memory problems as accelerated ageing or dementia, missing that space-occupying-lesion which should be referred. But primarily I feel that GPs who do not wish to give individuals with dementia on account of it doing more damage than good are complicit in an agenda where it is treated as a ‘death sentence’ – this is wrong on so many different levels, not least because a huge amount can be to help people with dementia with their environments, in adding ‘life to years’ through empowering them through their environment. I will briefly address this at the end of this blogpost.
Prof Alistair Burns, @ABurns1907, this morning launched the awareness campaign launched today on 21 September 2012 to coincide with World Alzheimer’s Day, as part of the Prime Minister’s Alzheimer Challenge launched in March 2012.
Alistair is the National Clinical Director for Dementia here in the UK. The diagnosis is an important component of an individual’s journey in dementia care. This diagnosis explains symptoms for the first time so that the individuals concerned can understand, allows appropriate treatment to be started (this could be pharmacological, but also could well be non-pharmacological interventions aimed at improving symptoms or quality-of-life), empowers individuals, and, most importantly, averts crises. It can be a difficult conversation to encourage people to seek help from their GP, and this campaign is part of this process. I think it’s absolutely fundamental to encourage people to go to see their GP. Many people may not have dementia (might have depression, or something totally different), but it’s important that a GP gets to the bottom of it. We should try very hard as a society in trying to squash any stigma associated with a diagnosis of dementia, whether in its initial diagnosis or in ongoing support (for example through ‘dementia frjendly communities’). We now live in an age where there is a lot of enthusiasm (and increased resources) for “person-centred care”; many individuals with dementia will spend much time of their patient journey with social care services, so the initial diagnosis is just the very first step. A very important first step.
Click here on the link to an audio produced by Alistair for the Department of Health’s initiative.
As an academic, I am extremely keen to support this. I will be going in December 2012 to Hyderabad, for the Biennial Meeting of the World Federation of Neurology meeting. You will see even from our program for this year’s meeting that dementia can present to experienced physicians under a number of different guises, ranging from memory problems (amnesia) to problems doing maths (acalcula) or problems reading (alexia).
I did my Ph.D. at Cambridge with Prof John Hodges in the early diagnosis of a common type of dementia in younger patients, called the behavioural variant of frontotemporal dementia between 1997 and 2001. I published my findings in the journal in Brain in 1999, and this paper has now become a classic, cited by all the major labs in the world. In this paper, I provided for the first time a solution to the mystery that such patients were presenting to the memory clinic with very profound behavioural and personality change, unnoticed by them but totally obvious to their immediates such as friends or partners. And yet such people performed very well on standard neuropsychological assessment, and often had perfectly normal brain scans and brain electrophysiology.The solution to my problem in short is that all the traditional neuropsychology were testing the wrong parts of the brain. In this condition, the behavioural variant of frontotemporal dementia, there are profound changes in a part of the brain near the eye, the ventromedial or orbitofrontal cortex. It is very difficult to demonstrate that an invididual has a thinking changes unless you test specifically the right type of thinking, which I did. I found such patients universally to be prone to making excessively risk-taking decisions. I found that virtually always their memory and other abilities such as memory, spatial working memory or planning were normal.
Early diagnosis I feel is absolutely critical, as it empowers patients and their families with a credible explanation of problems, which they have previously been unable to discuss. Once they know this diagnosis, they can seek support from the NHS, including specialist NHS clinics, and, where appropriate, medications, such as for memory early on in the condition (cholinesterase inhibitors), or medications for some of the more severe symptoms once the dementia becomes advanced. The NHS has latterly treated dementia as a top priority, and the Prime Minister’s Dementia Challenge is a landmark initiative by the Department of Health to put on a firm base the importance of dementia, given how resources are tight and many conditions (such as chronic obstructive airways disease).
I think it is important to give individuals realistic expectations on their pathway through a diagnosis of dementia. There is at the moment no cure for treatment, whilst there are effective treatments for some of the key symptoms. I think above all the success of the Prime Minister’s Dementia Challenge so far has been immense in giving people hope, and making people feel that they are not alone. I had the privilege once of doing three months as a junior in the early 2000s in the clinical team of Prof Martin Rossor, at the National Hospital for Neurology and Neurosurgery. Dr Nick Fox, Dr. Huw Morris, Dr Jason Warren and Dr Giovanna Mallucci were my Specialist Registrars, and they are now a Professor and 3 Consultants respectively.
In those days, a patient with queried dementia would be admitted on Monday to the National. I would take a 2 hour history with them, confirmed by a Specialist Registrar. I would always have to take a history from an informant, somebody who knew the person well. The problem is that some individuals, such as with behavioural variant frontotemporal dementia, have virtually no insight into their condition. All individuals would have a MRI, cognitive psychometry and an EEG, and a full set of bloods (which always included screens for the rarer disorders, infections, and neurogenetics for systemic medical conditions known to cause dementia, where it might assist in diagnosis). All patients, if there was no contraindication, would receive a lumbar puncture for examination of cerebrospinal fluid. I remember this being usually the most difficult time of the week, as I had to make sure the results were back for the ward round on Thursday morning. Then Martin would review all the information, with his Registrars and Clinical Fellows, and, as a world expert, would arrive at the diagnosis.
I remember one patient in particular. I will of course not give any identifying details, but he was a dancer from West London. He had presented with an insidious cognitive change in thinking and some subtle change in his personality (not known to him). The issue was, however, that he was in his late 30s, and this would have been a very unusual presentation of Alzheimer’s Disease (although some early presentations do exist). The cerebrospinal fluid had a massive white cell count (I remember being totally shocked when I read the result for the first time), and I presented a MRI similar to this to Dr Stevens, eminent neuroradiologist at the National.
Prof Rossor agreed with Dr Stevens – and it matched all the other investigations. This man had HIV dementia as a first presenting feature of AIDS, and was then referred to University College Hospitals NHS Foundation Trust for triple therapy. This was a clear case of where knowledge was power.
I strongly recommend you to tell people you know in society about the Prime Minister’s Dementia Challenge. Just because I do not vote Tory (and vote Labour), I am very willing to support this challenge. To help with this Challenge, I am currently writing a 250 pp book on wellbeing in dementia. For this, I have received a number of papers from various academics: Prof Felicia Huppert (definition of wellbeing in dementia), Prof. Peter Lansley (socio-economic rationale for wellbeing approaches), Prof Facundo Manes (social cognition and contexts), Prof Marcus Ormerod (built environments), Prof Roger Orpwood (assistive technology and telecare), Prof Andrew Sixsmith (ambient environments), and Prof. Catherine Ward Thompson (art and dementia). Prof. John Hodges (my PhD supervisor from 15 years ago) has kindly agreed to write the Foreword to my book which he says is “desperately needed”. I have also been very much influenced by the seminal work at Stirling on design of the home, led by Prof June Andrews and Prof Mary Marshall.
I am gradually arriving at a synthesis of their work, and I write daily on a blog especially devoted to wellbeing and dementia. To engage people who might not realise the crucial importance of dementia I publicise the importance widely on my @dementialives and @legalaware Twitter threads. I am also very excited that there will be a further chapter on innovation, which I feel is critical to the NHS (I came top of the year in my own MBA in innovation management earlier this year), and personalised care, to be written by somebody who is absolutely devoted in this field.
