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I will co-author my 3rd book on dementia with Prof Rob Howard

Essentials of dementia
Shibley Rahman and Rob Howard
Jessica Kingsley Publishers 2018

There are about 900,000 people living with dementia in the UK.mThe Royal Colleges of Physicians have estimated that people with dementia can sometimes end up comprising even 25% of the acute medical take.

This short, inexpensive book, to be published early 2018 by Jessica Kingsley Publishers, will be a lively and informative quick reference guide for contemporary students and teachers of dementia covering all the essentials about dementia in a clear, jargon-free, sensible way as they negotiate their busy working life, as well as a concise guide to effectivestudy skills.

The recently published Dementia Core Skills Education and Training Framework is an extraordinarily usefulresource which  details the essential skills and knowledge necessary across the health and social care spectrum. Education, training and skills acquisition are all agreed to be a  hallmark of good dementia care.

This document should act as a landmark resource for anyone who is concerned, directly or indirectly, with educational aspects of dementia care. It should inform curricula, provision of educational courses and the development of projects in dementia

This original new title, my third book with Jessica Kingsley Publishers (but my fourth book overall), will be invaluable for anyone with an active interest in or responsible for courses in core skills and knowledge about dementia, for the purposes of further study or research, to access excellent guidance at his or her fingertips.

The book will consider why dementia awareness is important and why a timely diagnosis is so important, how principles in person-centred care are pervasive in all areas of dementia care such as communication or end of life, the importance of family carers, equality, diversity and inclusion in dementia care, and contemporary approaches in law, ethics and safeguarding.

With the workforce in mind, in particular social workers with an interest in mental health, nursing specialists in dementia, physicians and psychiatrists in training, as well as general practitioners, this book will be an up-to-date evidence-based review of the current field. The book will also help practitioners and professionals who wish to develop their skills in research and evidence-based practice, as well as leadership in transforming dementia care.

The text makes reference to best practice including current NICE guidelines and BPS advice on psychological therapy, and will consider also the current-state-of-play in the range of pharmacological interventions in particular cognitive enhancers and antipsychotics and potential for the development of new drugs.

This “all you need to know” new text will also provide practical support for anyone living with or caring for dementia, reflecting best practice in person-centred care promoting the person at the centre of living and care.

I’ve decided to invite Karen Dening, Head of Research and Publications at Dementia UK and member of INTERDEM, to write the foreword – and I am glad to say Karen has accepted.

The book will be co-authored by Prof Rob Howard. After undergraduate study at Cambridge and St Bartholomew’s Hospital in London, Rob joined the Maudsley Hospital in 1988 and became Professor of Old Age Psychiatry and Psychopathology at King’s College London in 2002. In 2015, he moved to the Division of Psychiatry at University College London, where is currently Professor of Old Age Psychiatry.

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My personal view on the #DementiaTax

I am an academic physician in dementia, and this is a personal view.

Although I have voted Labour all of my adult life, I feel that the #DementiaTax cannot possibly be justified from any reasonable perspective of English dementia policy as it currently stands.

It is also highly objectionable under the international framework provided by the United Nations Convention on the Rights for Persons with Disabilities.

It is not a ‘party political point’ for me to criticise this policy which has colloquially become known as ‘the Dementia Tax’. I feel that it is my responsibility, conversely, to do so.

The origins of the term are uncertain, but it is possible that the term was first used by a caller to the “James O’Brien Show” on LBC. The term has been subsequently popularised in common parlance, and even on the front page of the Financial Times.

The ‘Dementia Tax’ is in effect a home equity release scheme. It is proposed that as a source of capital for some people facing large social care costs, you can be given a debt for which the equity on a property is a security. It would be up to you to repay that debt. It is proposed that the debt could even be paid back after you die. The scheme is extended to both domicilary and residential care.

It is not unreasonable to be concerned about people with dementia being in this situation. The costs of care, whether at home or in residential settings (for example, a nursing home or a care home), can be large, far in excess of an average income.

Over successive governments, of differing shades, the social care market has suffered from failure. It is impossible to discount market failure from failed private markets in policy.

There are about 900,000 people living with dementia in the UK. It is worth noting that many do live at home. It is worth noting that many are older and female. This scope for inequality and discrimination makes the operation of private markets in dementia especially perilous.

There is a large number of people who have substantial care needs. It is the current aspiration of policy to be able to enable people to live independent lives. National initiatives such as dementia friendly communities are confirmed by WHO and UN global policy of sustainable development goals.

A right to health is a fundamental human right in international law. The proposal from the Conservative government is potentially inequitable on putting unacceptable pressure on certain individuals who are unable to pay. It is, furthermore, a huge concern that carers will feel under pressure to offer the family home as a security in this home equity release scheme.

We already known that the care system for dementia only functions at all because of the monumental efforts of unpaid, family carers. These essential parts of the care system are pivotal in offering emotional and financial support. They are themselves highly vulnerable of becoming burnt out unless they themselves are looked after.

Caring is an intensely rewarding vocation for many carers, both paid and unpaid, spousal or children, or not. But the State, not the free market, arguably has responsibility in safeguarding  them – this means protecting vulnerable adults.

This home equity proposal is possibly the most unfair way of arranging certain people pay for their care. It is worth remembering that it is very uncommon for someone to know in early adulthood that he or she will develop dementia later on. Also, we do need a solution to problems in dementia care fast, and also social care in general, and this home equity proposal turns the clock many years pre Dilnot and Barker (although their solutions were not perfect, but considerably better.)

Whilst recent policy has emphasised prevention and risk reduction in dementia, in keeping with the emphasis put by HMOs in the US in recent history similarly, it is worth noting definitive prevention of dementia does not exist. For example, lack of education while being a risk factor for dementia did not prevent two previous British Prime Ministers both who were highly educated developing dementia in later life.

The home equity release proposal is further dangerous in English dementia policy, for the mission creep it could provide for private insurance provision in dementia. Whilst a social insurance arrangement with the State would be very different, where we could all pool risk equitably and fairly, private insurance markets suffer in future from well-known issues such as “adverse selection” or “loss aversion” which means that they would ultimately fail for dementia, if there were not sufficient anti-discrimination safeguards in law for example for gender or genetics.

It is intuitively unfair for people who have paid off a mortgage for a property over their lives to see it consumed in care costs, rather than bequeathed as a final legacy, unless you fundamentally view that a purpose of dementia is financial punishment.

 

 

Dr Shibley Rahman

Dr Shibley Rahman is an academic physician in dementia based in London. His last book ‘Enhancing health and wellbeing in dementia: a person-centred integrated care approach” was published to critical acclaim earlier this year, discussing important aspects of the integrated care pathway for dementia.

 

 

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Revisiting the diagnosis of dementia: a response to Howard.

In yesterday’s online Lancet Psychiatry, Prof Rob Howard opined openly whether a group of frequent attenders at international conferences, living with dementia, were representative of that general population of those who had been diagnosed with dementia (Howard, 2017).

I enclose tweeted pictures of the article from the Lancet Psychiatry’s own Twitter thread here.

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One point in Howard’s argument appears to be that the ‘frequent attenders’ run the danger of making other people with dementia feel as if they are not living up to expectations, in say delivering public talks to big audiences. I think it is easy to clear up here an important potential misconception – that these people living with dementia do not hold themselves out to be ‘representatives’ of the 48 million people living with dementia. But that is not to say they do not consider themselves as part of an important social movement with important international legal rights. And many people newly diagnosed with dementia, facing quite massive upheavals in their personal and professional identity, find (rightly) hurtful the accusation of ‘you don’t look as if you have dementia’. To which, the reply has been, often: “Well, please tell me, what does a person with dementia look like?”  It is this sense of otherness, or being different, which is a barrier to full acceptance and inclusion of people with dementia (indeed one of the criticisms of ‘dementia friendly communities’ is that it unwittingly emboldens this sense of otherness). But there is no reason to disbelieve that any of the frequent attenders has been given a diagnosis of dementia in the sense that bystanders do not have access to the detailed findings their respective clinicians have. There has, for example, been a plethora of articles on how nobody should be ‘diagnosed’ at a distance – including Donald Trump (see here).

It is proposed from the literature that dementia – or major neurocognitive disorder – by definition then seems to threaten the identity and selfhood of the individual at risk, leading earlier writers to see dementia as ‘the loss of self’ or ‘loss of the person’ (Higgs and Gilleard, 2016). I would contend that the identity further imposed as a high profile public figure living with a condition further adds to issues of personhood and identity unexplored, which become problematic if at any stage a diagnosis later becomes questioned (for example for lack of response to pharmacological therapeutic agents.) Recent approaches in post-diagnostic support have indeed tried to build up a continuum of the life of a person before a diagnosis of dementia and his or current life; for example, the process of ‘life story’ has been used specifically to enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard (McKeown et al., 2010). It has becoming increasingly recognised that research on the experience of receiving and living with a diagnosis of dementia is sparse, and that people newly diagnosed with dementia arguably need a mechanism of understanding and making sense of the diagnosis to help them deal with issues of loss and to make positive adjustments to their lives through employing specific coping strategies (Lee, Roen and Thornton, 2014).

A regularly exercised statistic by people wishing to raise funds for dementia, outside of the mechanism of general taxation for the NHS or social care, is that dementia is the most feared condition in adulthood (Various news agencies, 2014). For example, in one poll published in 2014, a finding was that just under four per cent said they were frightened about getting a heart condition and less than one per cent were concerned about developing diabetes, according to a survey of 500 adults aged over 50 from across the UK who were asked which condition they feared most; two thirds of people over the age of 50 fear that they will develop the condition, while just one in 10 said they were frightened about getting cancer (various news agencies, 2014). The reaction of people receiving a diagnosis of dementia below the age of 65, so-called young onset dementia, is informative. Patients perceive changes in their identity while caregivers perceive changes in the caregiver-patient relationship. Both can experience grief, isolation, and stigma (Spreadbury and Kipps, 2017). Across European Union countries stigma has been found to influence late presentation to services (through the minimisation and concealment of symptoms), delays in recognition and diagnosis after presentation (through the belief that services had little to offer), and service response to dementia (through therapeutic nihilism and pessimism regarding prognosis) (Vernooij-Dassen et al., 2005; Jolley and Benbow, 2000).

In this recent opinion article in the Lancet Psychiatry, Prof Rob Howard, chair of psychiatry at University College, London firmly argues for the importance of listening to the lived experiences of people with dementia (Howard, 2017). But the line which really strikes you from the piece is: “Put bluntly, they are not a bit like the people with dementia that I have diagnosed and treated.” In English policy, the policy and care purpose about an accurate and timely diagnosis of dementia was so that people could finally have a coherent medical explanation for their symptoms, and that through various specialties could be enabled to live with the condition, along with other comorbidities. In this view, an earlier diagnosis is meant to be of benefit to a person newly diagnosed with dementia, so that clinical care planning might be initiated, including both pharmacological and non-pharmacological interventions, as well as financial or legal guidance (for example, Rahman, 2017). In other words, the length of time actually living with dementia ‘well’ from the event of diagnosis is longer. But we do know this can be far from reality. In England, there has been much success in closing the ‘diagnosis gap’ amongst clinical commissioning groups (e.g. Fox et al., 2014). It has been long recognised that people living with dementia would often have to wait for a crisis late on in their condition or might enter a care home before receiving a formal diagnosis of dementia, and recent policy initiatives such as the Prime Minister’s Dementia Challenge 2020 have tried to remedy this (Department of Health, 2015).

Whatever the ‘rights’ and ‘wrongs’ of people with dementia being used as ambassadors for charity in dementia, akin to brand ambassadors in marketing utilised by big corporates, the intention is undoubtedly well meaning. An international stakeholder group, Dementia Alliance International, is a collective of people living with dementia setting their own agenda for quality of life of people beyond a diagnosis of dementia (https://www.dementiaallianceinternational.org). The medical profession has tended to see people with dementia in the latter ‘stages’ of dementia (although the linearity of staging of the hundreds of dementias including the dementia of Alzheimer type is hotly disputed), so there is an issue with whether advocates living with dementia are ‘like’ people normally seen in clinic. People normally admitted to secondary care are ill compared to people living with a chronic long term condition in the community with health assets optimised and illness at bay. So it might genuinely be that the medical profession is genuinely unused to the idea of people living ‘well’ with dementia (the high bar that ‘living well’ is for all of us). These issues rarely get aired in public, but now is probably the time the discussion takes place constructively and openly.

Howard states explicitly: “I have no reason to doubt that these people sincerely believe that they have dementia and I hope in turn that they will not see this piece as an attack upon them.” Encouraging people to be fully integrated in the community to inspire others to identify themselves about being able to live with dementia in a contented way is, of course, precisely the aim of English policy in the ‘dementia friendly communities’. Howard is definitely not arguing that high-profile activists with dementia are ‘living a lie’, although phenomena such as the “imposter syndrome” exist. Cohen (2015) writes of the “imposter syndrome: “the fear of being exposed, that you don’t deserve your success, aren’t as good as others – and could be “found out” at any moment.” English policy, indeed international policy, in dementia combines an odd split personality where charities in dementia try on the whole to campaign solely on the dementia identity and yet try to convey that the identity of a person is more than his or her label of dementia (hence people raising placards in photoshoots: “putting the ME back in deMEntia”). The issue that activists in dementia at international conferences is that their identity ’as having dementia’ becomes emboldened such that, once public about their diagnostic label, it would be hard for them to become ‘undiagnosed’ without the potential for loss of face.

But I do think likewise that professionals charged with making a diagnosis of dementia should not be intimidated into not reviewing their diagnoses, when so much hinges on the diagnosis. We can all agree that the disclosure of the diagnosis of dementia is indeed a life-changing event. But a diagnosis of any medical condition has to be reviewed as further information comes to light either supporting or not supporting an original diagnosis. Symptoms vary according to how advanced the biology of a condition might be. To review a diagnosis of dementia is not to suggest that a recipient of a diagnosis of dementia is a fraud, or has deliberately misled a clinician, in the same way that a change of diagnosis should not immediately lead to accusations of blame or that someone somewhere has “made a mistake” necessarily. We know that some diagnoses of dementia, especially ones of people in younger age groups, fall within a very grey area where there is considerable uncertainty, where certain investigations can indeed appear normal such as the behavioural variant of frontotemporal dementia or levy Body dementia.

Howard’s well written piece I think is important for two further reasons, if one assumes that activists with dementia appearing in high profile are doing us all a great service. Firstly, the need to keep the diagnosis under review is in all of our interests. Accurate diagnosis of most diseases that cause dementia depends on post mortem neuropathological examination, and the mismatch between in vivo and post mortem diagnoses can be stark (Love, 2005). Secondly, the possibility does genuinely remain that these high profile people living with dementia, who seem relatively mobile and articulate, do represent an important subgroup of those people living with dementia. They could represent a group of younger patients who are physically active, benefit from social networking (whether virtually or in ‘engagement’ events), and keep their brains active. All of these are indeed recommendations in promoting ‘brain health’, or slowing the rate of decline of a dementia, as reviewed in the evidence comprising the recent Blackfriars Consensus (e.g. Lincoln et al., 2014). The mere act of packing a suitcase, jumping on a train or plane and giving a presentation might have a genuine therapeutic effect as yet untested through any randomised control trial for post diagnostic support for dementia. It is known that levels of arousal and motivation and affect can be major determinants of cognitive function, for example a boost in cognitive performance in older adults has been found after a bout of exercise (reported by Johnson et al., 2016).

As such, it could be that the original diagnosis of dementia was inaccurate, and would have been fulfilled though the diagnosis of ‘mild cognitive impairment’. Since its inception in 1999 (Petersen et al., 1999), the concept of mild cognitive impairment (MCI) has evolved. The original criteria for MCI focussed on memory impairment, but during recent years, they have been expanded to define subtypes, including non-amnestic (without memory impairment), as well as single and multi-domain impaired forms (Petersen, 2004). Efficient ways of identifying the ‘at risk’ population (conversion from any pre-dementia state to dementia) are required for larger-scale research studies (Ozer et al., 2016). Internationally there is no consensus on the proportion of people with MCI who ‘convert’ to dementia, and indeed it has become the nirvana of the pharm-focused research to identify such susceptible individuals early-on through sophisticated tests such as biomarkers (e.g. Bos et al., 2017). Looking at Howard’s predicament unconstructively, it could be that some of the people he identifies could or should be ‘ambassadors’ for living well with mild cognitive impairment, but the problem exists that there is no Mild Cognitive Impairment Society.  It is perhaps worth noting here that my mere mention of this reinforces a cliff-edge phenomenon between ‘mild cognitive impairment’, where being a mild cognitive impairment is unlikely to lead to as many doors for discussing your lived experience. And yet this difference between mild cognitive impairment and dementia is simply an artefact of how senior clinicians have desired to draw up the arbitrary criteria for cognitive disorders at any one time. Looking at Howard’s observation helpfully, it could be that this group of people shines light on a possible therapeutic window when a psychosocial intervention could most benefit people facing the potential prospect of a future diagnosis of dementia. But it is still indeed the case that people who are expected to be living with dementia will find their diagnoses being questioned quite offensive.

Clinicians should not in the business of undermining people, and I feel Howard’s piece is a long way from that. On the contrary, Howard, as a senior specialist in dementia, holds an important and valid view which merits scrutiny and questioning about assumptions about living with dementia, professional, personal or otherwise. There will have been many people to have benefited from a prompt timely diagnosis of dementia, but there will be some, unfortunately, who will have received harm from receiving the wrong diagnosis (harm for being treated for the wrong illness and not being treated for the right illness). We do not collect in England how many people received a wrong diagnosis of dementia, from having made intense efforts to improve the diagnosis rate, though there is now acknowledgement that this was a policy drive which may have gone too far. Like dementia itself, the various arguments are incredibly complex.

 

 

References

Bos I, Vos SJ, Frölich L, Kornhuber J, Wiltfang J, Maier W, Peters O, Rüther E, Engelborghs S, Niemantsverdriet E, De Roeck EE, Tsolaki M, Freund-Levi Y, Johannsen P, Vandenberghe R, Lleó A, Alcolea D, Frisoni GB, Galluzzi S, Nobili F, Morbelli S, Drzezga A, Didic M, van Berckel BN, Salmon E, Bastin C, Dauby S, Santana I, Baldeiras I, de Mendonça A, Silva D, Wallin A, Nordlund A, Coloma PM, Wientzek A, Alexander M, Novak GP, Gordon MF; Alzheimer’s Disease Neuroimaging Initiative, Wallin ÅK, Hampel H, Soininen H, Herukka SK, Scheltens P, Verhey FR, Visser PJ. The frequency and influence of dementia risk factors in prodromal Alzheimer’s disease. Neurobiol Aging. 2017 Apr 8;56:33-40. doi: 10.1016/j.neurobiolaging.2017.03.034. [Epub ahead of print]

Cohen, C. (2015) Imposter syndrome: Why do so many women feel like frauds? The Telegraph 16 November 2015 http://www.telegraph.co.uk/women/work/imposter-syndrome-why-do-so-many-women-feel-like-frauds/

Department of Health (2015) Policy paper. Prime Minister’s challenge on dementia 2020https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020

Fox M, Fox C, Cruickshank W, Penhale B, Poland F, Steel N. Understanding the dementia diagnosis gap in Norfolk and Suffolk: a survey of general practitioners. Qual Prim Care. 2014;22(2):101-7.

Higgs P, Gilleard C. Interrogating personhood and dementia. Aging Ment Health. 2016 Aug;20(8):773-80. doi: 10.1080/13607863.2015.1118012. Epub 2015 Dec 28.

Howard, R. Doubts about dementia diagnoses. Lancet Psychiatry, available online 9 May 2017, https://doi.org/10.1016/S2215-0366(17)30150-5.

Johnson L, Addamo PK, Selva Raj I, Borkoles E, Wyckelsma V, Cyarto E, Polman RC. An Acute Bout of Exercise Improves the Cognitive Performance of Older Adults. J Aging Phys Act. 2016 Oct;24(4):591-598. Epub 2016 Aug 24.

Jolley DJ, Benbow SM. Stigma and Alzheimer’s disease: causes, consequences and a constructive approach. Int J Clin Pract. 2000 Mar;54(2):117-9.

Lee SM, Roen K, Thornton A. The psychological impact of a diagnosis of Alzheimer’s disease. Dementia (London). 2014 May;13(3):289-305. doi: 10.1177/1471301213497080. Epub 2013 Aug 5.

Lincoln P, Fenton K, Alessi C, Prince M, Brayne C, Wortmann M, Patel K, Deanfield J, Mwatsama M. The Blackfriars Consensus on brain health and dementia. Lancet. 2014 May 24;383(9931):1805-6. doi: 10.1016/S0140-6736(14)60758-3. Epub 2014 May 19.

Love S. Neuropathological investigation of dementia: a guide for neurologists. J Neurol Neurosurg Psychiatry. 2005 Dec;76 Suppl 5:v8-14.

McKeown J, Clarke A, Ingleton C, Ryan T, Repper J. The use of life story work with people with dementia to enhance person-centred care. Int J Older People Nurs. 2010 Jun;5(2):148-58. doi: 10.1111/j.1748-3743.2010.00219.x.

Ozer S, Young J, Champ C, Burke M. A systematic review of the diagnostic test accuracy of brief cognitive tests to detect amnestic mild cognitive impairment. Int J Geriatr Psychiatry. 2016 Nov;31(11):1139-1150. doi: 10.1002/gps.4444. Epub 2016 Feb 18.

Petersen RC. 2004. Mild cognitive impairment as a diagnostic entity. J Intern Med 256: 183–94.

Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangalos EG, Kokmen E. Mild cognitive impairment: Clinical characterization and outcome. Archives of Neurology. 1999;56(3):303–308.

Price, C. Revealed: the dementia diagnosis drive that went too far 26 February 2016 http://www.pulsetoday.co.uk/clinical/more-clinical-areas/neurology/revealed-the-dementia-diagnosis-drive-that-went-too-far/20031247.article

Rahman, S. (2017) Enhancing health and wellbeing in dementia: a person-centred integrated care approach, London: Jessica Kingsley Publishers.

Various news agencies (2014). Older people are more scared of dementia than cancer, poll finds. http://www.telegraph.co.uk/news/health/elder/11008905/Older-people-are-more-scared-of-dementia-than-cancer-poll-finds.html

Vernooij-Dassen MJ, Moniz-Cook ED, Woods RT, De Lepeleire J, Leuschner A, Zanetti O, de Rotrou J, Kenny G, Franco M, Peters V, Iliffe S. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. Int J Geriatr Psychiatry. 2005 Apr;20(4):377-86.

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