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My book ‘Frailty: from assets and deficits to resilience’ will be published in early 2018

I am pleased to announce that my book ‘Frailty: from assets and deficits to resilience’ will be published early next year. I am honoured that the two main forewords to the book will be by Prof Kenneth Rockwood and Prof Adam Gordon. Both Rockwood and Gordon have contributed excellence in research. It is not inappropriate to describe Rockwood as a world leader, whose research into frailty has ranged from mathematical modelling of deficit accumulation to social vulnerability and inequality.

For me – the discussion which must be aired generally is “What makes us healthy?”, as well as “What makes us ill?”

Unfortunately, this discussion appears to have been rather muted thus far for frailty.

“Frailty” generally describes how our bodies gradually lose their in-built reserves, leaving us less resilient and much more vulnerable to dramatic, sudden changes in health triggered by seemingly small events such as a minor infection or a change in medication or environment. Epidemiology suggests that as many as ¼ of people above the age of 80 could be classified as ‘frail’ in the UK, which means that there is a material risk of pathologising ageing. In medicine, frailty tends to refer to a group of older people who are at highest risk of adverse outcomes such as falls, infections, disability, admission to hospital, or the need for long-term care. There are important nuances in how frailty is defined, and there is a discussion now to be had whether the perception of frailty is necessarily all negative in keeping with a pathogenic medical model. This means framing the rather specialised field of frailty within health and social care with much more meticulous detail, where scientific progress is not divorced from the wider discourse of ageing. I intend that this book will be a thought-provoking original contribution to the literature, and will stimulate much needed debate by all stakeholders.

I feel a new book is desperately needed, given that a large part of care of the elderly service provision in the NHS and social care is currently being oriented towards persons living with frailty. There are virtually no books available at all in this important subject area. Conversely, there has been in recent years a huge volume of guidance from the NHS and various agencies on frailty.

The topic of frailty is not an issue of concern only for the medical profession – other professionals, practitioners and academics have important views too, as well as patients themselves self-managing the condition and carers. By fixating on all the deficits might lead to an error where insufficient attention is given to building up strengths (e.g. good bone strength, nutrition, exercise). Unpacking biases in this debate leads to a rather different view of frailty to the one we currently have.

At the current state of play, frailty is in a danger of being inadequately discussed by both health and social care of what it actually means for whole systems and ethical attitudes towards those persons who are frail. Frailty has been notoriously difficult to identify accurately, although progress has been made in relation to measuring it and also in relation to quality of life. Building up strengths is fundamental to the ‘assets based approach’ pivotal to promoting wellbeing in frailty care, and empowering people with frailty using this construct might also go some way to the stigma generated by a frailty label. This approach puts emphasis on building on what people can do (rather than cannot do), and gets out of the attitude that patients once declined are effectively put into an irreversible ‘downward spiral of decline’. In fact, I successfully argued such an approach in a previous book ‘Living well with dementia’ (CRC Press, 2014), which won “Best Book of the Year Award” for the BMJ Book Awards 2015.

There seems to me, contemporaneously, a real gap in the book market for a competitively priced book on frailty, suitable for anyone interested in this subject, which draws on cutting-edge multidisciplinary strands, which also gives due attention to political and ethical concerns. The book will address this gap, and reflect latest state of the art clinical research and service provision on frailty at the time of publication.  Furthermore, this book would mark an innovative, original contribution to the current literature in not placing the discussion so firmly placed on deficits. I wish to re-orient the narrative towards wellbeing, and the interaction between personhood and the environment, and how different approaches such as advocating human rights or co-production might see better engagement of persons who are frail with the health and care services.

Key features (for example, why is the book unique, well suited to the needs of readers?)

  • Critical evaluation and analysis of current worldwide literature on frailty.
  • Frailty framed originally in the context of salutogenesis in promoting wellbeing, whilst building on the latest biomedical evidence.
  • Will be a useful read for all professionals and practitioners wishing an introduction to the field.
  • Overview of the whole academic and practitioner field of frailty – not solely confined to a particular subject area, e.g. ‘survival analysis’ or ‘sarcopenia’.
  • Written in an easily accessible and inclusive style
  • Not simply seeing ‘frailty’ through a medical prism, i.e. focused on deficits, but a more holistic approach emphasising assets and resilience, consideration of the society, the social model of disability and sociological principles.
  • A focus heavily emphasising personhood and the environment.
  • Use of figures and tables to make reading the text enjoyable.
  • “Key points”/ “pointers”
  • Written by an experienced researcher in care of the elderly medicine with a proven record of outstanding academic books.

Table of contents

ToC

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We need to talk sensibly about frailty

My book on frailty will be published next year. I intend to review the current global peer-reviewed literature on frailty, and argue that  the account as is takes to fail into consideration adequately a narrative based on health assets and fails to address the stigma and labelling considerations either.

 

 

 

It’s great that frailty as a ‘brand’ is getting so much publicity, but is it all the right kind of publicity?

 

For example,

 

Our treatment of the frail elderly is a national scandal”, Sunday Express, 8 March 2011

 

(cited in Manthorpe and Iliffe, 2015)

 

But some of the copy has been to generate a “moral panic”, defined as a feeling of fear spread among a large number of people that some evil threatens the well-being of society.

 

Stanley Cohen (1973) states that moral panic happens when “a condition, episode, person or group of persons emerges to become defined as a threat to societal values and interests”.  You can sometimes feel this with the reported crushing burden financially of ‘frail elders’ on the NHS and social care.

 

It is generally agreed that frailty is characterised by increased vulnerability to stress due to decline in homeostatic reserve secondary to dysregulation in various multiple interrelated systems. Frailty is a multifactorial syndrome that represents a reduction in physiological reserve and in the ability to resist environmental stressors. Age-related frailty is related to adverse health outcomes.

 

But framing ‘frailty’ entirely through deficits is arguably problematic even if somewhat convenient for medical profession. I wish to look at this in my blogpost, but also two issues which I feel are rarely mentioned: (a) the stigma of frailty, (b) frailty with an assets-based approach.

 

Too often, individuals can be reduced to a “list of problems” to be solved very quickly. Because of a mutual drive for certainty despite complexity, the heuristic, often deployed on the general medical take, is to decide whether a patient is frail – or not. This is of course partly at the whim of diagnostic criteria in operation at any one time. For example, Fried and colleagues (2001) have defined the presence of the frailty phenotype based on the presence of three or more of the following physical criteria: weight loss, exhaustion, physical activity, walking time, and grip strength. People are classified as frail if they meet three or more of these features, pre-frail if they meet one or two, and non-frail if they do not meet any of the criteria.

 

But in reality –  frailty is not really an all or nothing phenomenon.

 

As elegantly argued by Romano-Ortuno and O’Shea (2013), it can be difficult to place people on the ‘frailty continuum’. Whilst wellbeing is not simply the absence of illbeing, according to the current quality of life research anyway, it is reasonable to view people as lying on a continuum between ‘fitness’ and ‘frailty’. It seems that the rate of increase in the accumulation of deficits is an estimate of the rate of aging, and, in general, the “frailty index” characterises individual health across the fitness-frailty continuum from the fittest (those who compared to others at their age, have accumulated just a few health problems) to the frailest people who, having accumulated many more problems than have others of their age, are the most vulnerable to stresses (Mitnitski, Song and Rockwood, 2013).

 

The word ‘frailty’, though, itself is interesting.

 

The word ‘frailty’ is defined in the Oxford English dictionary as “the condition of being weak and delicate”. A comment is made that the word in part derives from the Middle English (in the sense ‘weakness in morals’): from Old French frailete, from Latin fragilitas, from fragilis (see fragile). The modern idea of stigma owes a great deal to the seminal work of Erwin Goffman.  According to Goffman (1963, p. 3), stigma is an attribute that extensively discredits an individual, reducing him or her “from a whole and usual person to a tainted, discounted one.”  Stigmatising “stereotypes” are generally widely shared and well known among members of a culture, and they become a basis for excluding or avoiding members of the stereotyped category. This sense of otherness is a barrier to societal inclusion.

 

An aim of encouraging health in frailty is to build up physiological resilience, broadly defined as the ability of an organism to cope with a challenge, and return to normal baseline function following the pertubation. Common challenges include surgical stress or bone fractures. Engaging or “activating” patients is currently a policy priority. It is crucial for positive living and enhanced quality of life. It also motivates patients to assume the management of their own health. But the experience is from other conditions, including HIV and dementia, is that stigma can be a significant barrier to self-management,

 

In the recent study from Puts and colleagues (2017), it was mentioned that stakeholders spoke about the stigma regarding frailty and suggested it should addressed; as very few people want to be labelled as ‘frail’, which makes inviting them into possible programmes to prevent frailty even more difficult. Recent stakeholder research published by Age UK in conjunction with the British Geriatrics Society  (Age UK, 2015) noted that respondents universally regarded the word ‘frail’ as a negative label. Older people described frailty as something they could recognise in others but which they would never use to describe themselves.  Furthermore, a qualitative study of 29 older people aged 66–98 years found that ‘most participants actively resented the identity’, even those who could be classified as frail using objective criteria (Warmoth et al., 2015). The frailty label may be rejected or resisted as individuals struggle to maintain a positive self and postpone an identity crisis (Fillit and Butler, 2009).

 

To balance the narrative regarding frailty, I think it’s imperative that assets must be given due weight. Assets can be described as the collective resources which individuals and communities have at their disposal, which protect against negative health outcomes and promote health status.  An asset based approach makes visible and values the skills, knowledge, connections and potential in a community. It promotes capacity, connectedness and social capital.  Asset based approaches emphasise the need to redress the balance between meeting needs and nurturing the strengths and resources of people and communities.

 

One “asset” might be to reduce the “fear of falling” which leads to a decline in daily physical activity, quality of life, a change in gait parameters, an increased risk of falling and a loss of self-confidence, which in turn may lead to a complete loss of independence. This could be achieved through psychological therapies aimed at building confidence. Recent evidence confirms the importance of both quantitative (energy intake) and qualitative (nutrient quality) factors of nutrition in the development of frailty syndrome in older adults (Lorenzo-López et al., 2017).  Boosting nutritional assets through “prehabilitation” might build up resilience sufficiently for a frail person to avoid delirium after a general anaesthetic. Finally, the psychological benefits of social integration potentially have the capacity to displace money as a source of status and self-worth (Richards, 2016).

 

The irony is, that in the supposed promotion of person-centred care, there has been an explosion of initiatives focused on diseases, such as “frailty care pathways”, “frailty units” and “frailty checklists”. And this approach might inadvertently exacerbate ‘otherness’ or lack of inclusion. But if patients don’t feel happy with their brand identity as frail due to stigma, it might prevent them from engaging optimally with health and social care services. By focusing on assets too will take the narrative away from one solely to do with deficits, and I feel that this can only be a good thing.

 

 

 

References

 

Age UK. (2015) The British Geriatrics Society, Britain Thinks. Frailty: Language and Perceptions. A report prepared by BritainThinks on behalf of Age UK and the British Geriatrics Society https://www.nursingtimes.net/Journals/2015/07/23/o/e/e/Age-UK—BGS—Frailty-Final-Report.pdf.

 

Cohen, S. (1973). Folk Devils and Moral Panics: The Creation of the Mods and Rockers. Paladin.

 

Fillit, H., Butler, R. (2009), “The frailty identity crisis”, Journal of the American Geriatric Society, Vol. 57, No. 2, pp. 348-352.

 

Fried LP, Tangen CM, Walston J, Newman AB, Hirsch C, Gottdiener J, et al. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci. 2001;56(3):146–156. doi: 10.1093/gerona/56.3.M146.

 

Goffman, E. (1963) Stigma, London: Penguin Books.

 

Lorenzo-López L, Maseda A, de Labra C, Regueiro-Folgueira L, Rodríguez-Villamil JL, Millán-Calenti JC. Nutritional determinants of frailty in older adults: A systematic review.  BMC Geriatr. 2017 May 15;17(1):108. doi: 10.1186/s12877-017-0496-2.

 

Manthorpe, J, Iliffe, S. (2015) Frailty – from bedside to buzzword, Journal of Integrated Care Vol. 23 No. 3, pp. 120-128.

 

Mitnitski A, Song X, Rockwood K. Assessing biological aging: the origin of deficit accumulation. Biogerontology. 2013 Dec;14(6):709-17. doi: 10.1007/s10522-013-9446-3. Epub 2013 Jul 17.

 

Puts MT, Toubasi S, Andrew MK, Ashe MC, Ploeg J, Atkinson E, Ayala AP, Roy A, Rodríguez Monforte M, Bergman H, McGilton K. Interventions to prevent or reduce the level of frailty in community dwelling older adults: a scoping review of the literature and international policies. Age Ageing. 2017 Jan 6. doi: 10.1093/ageing/afw247. [Epub ahead of print]

 

Romero-Ortuno, R, O’Shea, D. Fitness and frailty: opposite ends of a challenging continuum! Will the end of age discrimination make frailty assessments an imperative? Age Ageing (2013) 42 (3): 279-280. DOI: https://doi.org/10.1093/ageing/afs189.

 

Warmoth, K, Lang, A, Phoenix, C, Abraham, C. (2016) ‘Thinking you’re old and frail: a qualitative study of frailty in older adults, volume 36, Issue 7, pp. 1483-1500.

 

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My session at the end of life in dementia community of practice

I will on June 14th 2017 present a session on legal and ethical principles in end of life in dementia for a community of practice run for 38 specialists, for Dementia UK and Hospice UK.

Talk 1

I will give a hour one talk on the following topics.

  • Definition of end of life
  • Legal method
  • Introduction to ethical dilemmas
  • Four ethical principles
  • Duty of care
  • Mental capacity
  • Best interests and advocates
  • Advance decisions
  • Abuse and neglect
  • Advance care planning
  • Deprivation of liberty safeguards
  • UN Convention on Rights for Persons with Disabilities
  • Artificial nutrition and hydration
  • Do not attempt resuscitation
  • Assisted suicide and euthanasia

I will then discuss with the group collective responses to eight legal and ethical scenarios.

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Dementia and “the war against information”

data

 

It is perhaps easy to see why there is a session on ‘the war against information’ on today, this the first day of the Bilderberg meeting. The programme was helpfully disseminated by Wikileaks.

Healthwatch England has instigated a number of inquiries in the past over the barriers to poor care in dementia, and poor information has consistently been found to obstruct good care.

Poor information could be interpreted that there is none available to patients and users of dementia services. But this is unlikely to be the case. Due to the ‘internet of things’, you can even “ask Alexa” anything about dementia. Gone are the days where you would even want to quiz your GP on minutiae details over dementia perhaps.

Information does need to have some external standards though. The NHS Information Standard has had some success in maintaining safeguards so that the public can ‘trust’ information about dementia as NHS patients. One cannot help feeling though stopping fake claims about dementia is an impossible task, like King  Canute trying to “stop the tide”.

With so many political actors involved, it is however important to be able to see the wood from the trees. However, the claims are often heavily marketed and branded, and it can be unclear why certain ideologies are more correct than others.

Information is not necessarily the same as knowledge, which in turn not the same as wisdom necessarily. One may indeed wonder what the need for an experienced geriatrician, physician or psychiatrist Is in making a timely diagnosis of dementia, when a giant supercomputer can do.

Indeed, ‘big data’ have been successful at making the genome wide associations in dementia needed to make sense of the complicated inheritance patterns, revealing potential guidance on what sort of people are ‘at risk’ of developing dementia.

It is not however the volume of information which is the matter, but how it is communicated and chosen. This of course is pivotal, for example, if you might be choosing a residential home where you would like to live. Choice and control have been major drivers in the personalisation agenda of recent governments, manifest in a number of areas including personal budgets.

Information has of course to be retained long enough online and be processed appropriately. An inability to do this is part of the definition of where capacity is lost in English law. Capacity at one end is important in safeguarding certain people with dementia from making ‘bad’ decisions. However, it opposes the inalienability and universality of human rights, as specified for example in instruments such as the United Nations Convention on the Rights for Persons with Disabilities.

An over-reliance on software running on the “internet of things” is of course susceptible to a giant cyberattack, and there is worry that external agencies can dump malicious information worming their way into healthcare services. But it is important to embrace risk at all to ‘live well’ – similarly, we can’t be petrified that our computers, some helping with dementia services, are all about to shut down.

Finally, information like dementia friendly communities might seem instantly attract because of the appearance of cost neutrality. Indeed information may be cheap – but lack of wisdom in using it in dementia might be costly.

 

@dr_shibley

 

 

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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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Human rights in dementia. The only way is Kyoto.

It wasn’t that long ago that many people, after receiving a diagnosis of dementia, would be propelled head-first into an abyss of the health and social care systems, with no supportive ‘dementia friendly communities’.

As leading international campaigner Kate Swaffer provided in a talk in 2016, people beyond a diagnosis of dementia “are not provided with rehabilitation or other enabling post diagnostic support” and “are not provided with the same disAbility support as every other person with a disability”. It is widely recognised that people living with dementia are frequently denied their human rights both in the community and in care homes.

What I feel is the power in dementia is not as such the nebular notion of dementia, but that individuals with distinct lives of their own have rights. As Chris Roberts, also living beyond dementia, said this morning in Kyoto, “People with dementia have their rights trampled on – these are not just rights relating to their disability, but also their human rights”.

The back story is as follows.

The WHO International Classification of Functioning, Disability and Health (ICF) defined disability as ‘an umbrella term for impairments, activity limitations and participation restrictions’ (WHO, 2002, p. 2), referring to the negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors (environmental and personal factors).

According to Article 1 of the UN Convention on Rights of Persons with Disabilities (UNCRPD):

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

In UK law, the Equality Act [2010] states that a person (P) has a disability if:
 (a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

The term ‘disability’ is therefore not meant merely stigmatising label to be imposed upon individuals. Nor is the term ‘disability’ in this context intended to focus on what a person can’t do, but rather the wider societal context in which a person with a disability lives their life and what they can do. This is significant as the act of the diagnosis of dementia not in itself be profoundly disempowering.

National laws and policies (e.g. mental capacity legislation, health and social care services, dementia-friendly communities, etc.) must be compliant with human rights legislation – disability rights are therefore potentially powerful levers for change.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Their mission particularly includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. This unique group advocates for a more ethical pathway of support that includes their fundamental  human right to full rehabilitation and full inclusion in civil society; “nothing about us, without all of us.”

I’ve found their pamphlet ‘The Human Rights of People Living with Dementia – from Rhetoric to Reality’ very helpful.

There’s been a huge amount of work about why the label of dementia can bring with it negative stereotypes and pre-conceptions. The literature since the seminal work of Becker in the early 1960s is now substantial into the field of “stigma”Stigma can be a contributing factor for why people with dementia do not claim their rights.

Owen Miller wrote originally as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, the following.

“But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.”

Kate Swaffer, Chair and CEO of DAI, was the first to use the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her.

Many people with dementia report a common experience of loneliness and social isolation which they experience when friends and family members stop visiting, Older people are more fearful of developing dementia than they are of cancer, a poll recently suggested. 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.

The 161 countries that have ratified the CRPD are required to submit regular reports to the UN CRPD Committee. Non-Governmental Organisations (NGOs) and Disabled Persons Organisationshave the right to submit ‘parallel reports’ which are taken into consideration in the Committee’s Concluding Observations and Recommendations. All of the articles are significant, but it is especially noteworthy that a right to legal capacity on an equal basis was enumerated in the CRPD in Article 12 as a subsidiary to the right to equal recognition before the law.

An accessible Users Guide to the Convention is here.

In March 2015, Kate Swaffer made three demands at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the CRPD
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

It was further reported that, at the Alzheimer’s Disease International conference’s international conference in April 2016, the leaders of 38 national Alzheimer Associations committed to a human rights based policy and full access to CRPD.

Prof Peter Mittler CBE in August 2016 noted:

“But people living with dementia are at great risk of being left behind in the sustainable development groups because there is a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than the inter-sectoral responsibility of all Ministries, including Housing, Transport, Social Care and Protection. These would enable us to have access to the whole range of supports, services and amenities available to persons with disabilities recommended in CRPD.”

The human rights based approach (HRBA) is important.

HRBA is based on participation of people with lived experience, as with the disability rights movement’s motto ‘nothing about us without us’. Yet there is a shocking lack of consultation with people with dementia throughout much of dementia care. It was recently found the quality of dementia care in OECD countries is very poor.

Rights pop in various contexts.

For example:

  1. In many countries people living with dementia are often physically and chemically restrained, even when regulations are in place to uphold their rights. Furthermore, people living with dementia can also be victims of neglect and abuse.
  2. More recently the broader concept of advance care planning (ACP), a multi-stage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care, has been introduced. Evidence shows that one to one discussions with a trained professional over a period of time are the most successful. ACP may thus provide an opportunity for more person-centred care, although such discussions should occur while the person still has capacity.
  3. Sexual self-determination is considered a fundamental human right by most of us living in Western societies. Conduct follows strict rules relating to consent and coercion, but for older people with dementia living in residential aged care facilities, however, the issue becomes more complex. But it is hard to deny a wish for people to form loving relationships, and this is bound to happen too in the context of residential care. We are at danger of treating all relationships which occur in residential care with suspicion until proven otherwise. This arguably offends inalienable, universal human rights and a right to democratic citizenship.
  4. Article 8 of the European Convention on Human Rights concerns the right to family and private life. This includes the right to respect for an individual’s home and correspondence. The right contained in Article 8 is known as a qualified right which means that there may be circumstances in which some interference with it is justifiable. This right means that an individual has the right to the level of personal privacy which is compatible with a democratic society, taking into account the equivalent rights and freedoms of others. Any interference with this right by a public authority, such as CCTV video surveillance, may be subject to a test of acceptability. This might also clash with the so-called “deprivation of liberty safeguards”, where somebody with dementia might have his liberty taken away by the State.

There’s no doubt that human rights are a big deal, and I have no doubt that the WHO/UN Sustainable development groups/human rights approach will become enshrined within the new vocabulary of dementia friendly societies or age friendly cities in time.

@dr_shibley

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‘Dementia friendly communities’ – are you “luvving it”?

There is no universally accepted description of international marketing.

The American Marketing Association defines it as “the multi-national process of planning and executing the conception, prices, promotion and distribution of ideal goods and services to create exchanges that satisfy the individual and organisational objectives.”  Unless we’re careful, the corporatisation of dementia friendly communities will mean that this policy takes a turn for the worst.

The notion of ‘dementia friendly communities’ has a long and distinguished history. The concept of the Alzheimer Café was established in the Netherlands as a vehicle for providing a welcoming atmosphere in an accessible location for all people with or affected by dementia. The first Alzheimer Café took place in 1997 in a collaboration between Dr Bère Miesen and the regional branch of Alzheimer Nederland in north Zuid-Holland. There are now 230 Alzheimer Cafés run by volunteers in the Netherlands with around 35,000 unique visitors each year.

In #ADI2015, Kate Swaffer, world leader living beyond dementia, said pretty emphatically in a talk on ‘dementia friendly communities’ “It’s about our basic human rights.”

Kate at the time said that “people without dementia cannot really know what it means to live with dementia”, and I completely agree. When Donald Trump was surrounded by about ten men signing an executive order on abortion rights, the world was aghast.

There’s been a huge amount of preparatory work on what ‘dementia friendly communities’ might include, and the genuinely global examples all around the world cited in this ADI report are very interesting.

There have been some remarkable achievements.

Look at Dennis Frost, a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which [Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.]

“Two local groups were then formed to establish
a Kiama Dementia Action Plan: the Dementia Alliance, made up of people with dementia, carers, the local council, and service providers; and the Dementia Advisory Group, formed solely of people with dementia and carers. Information sessions for local groups and the public have taken place, the Kiama Community College is working towards becoming dementia friendly, local newspapers have published positive stories about local people with dementia, and the project is showcased online. Kiama is seeing improved community awareness about dementia and training has been provided to help community groups such as the local Probus club, choir, music and knitting groups support people living with dementia to participate/ remain involved with their groups.”

(ADI report)

There’s no doubt that ‘dementia friendly communities’ as a marketing brand is very difficult to disagree with. After all, as Kate pointed out in 2015, a definition of “friendly” is “favorably disposed; not antagonistic”. The work builds on WHO “AGE friendly cities” – and you can see from this checklist that many of the aims overlap with dementia friendly communities, though there are obvious differences (e.g. city vs rural community).

I think as the worldwide narrative on human rights for dementia becomes more fine-tuned later this year, through the groundbreaking work of Alzheimer’s Disease International and Dementia Alliance International, it is reasonable to take stock of what ‘friendly’ means, other than not being overtly antagonistic.

Kate at the time mentioned ‘respect’, ‘inclusion’, ‘equality’, and ‘autonomy’, and these are of course essentially the human rights based approaches (take for example the PANEL principles of ‘participation’, ‘accountability’, ‘non-discrimination’, ‘empowerment’ and ‘legality’).

As Glenn Rees, ADI chair, said in a recent speech:

“A lot has happened in the last two or three years in other countries in implementing dementia friendly communities. The principal message of this publication is that there is no right or wrong way to make communities dementia friendly, though projects will fail if they are not inclusive of people with dementia.”

Unless there is a genuine cultural shift in priorities, there’ll be a perpetual sense of ‘groundhog day’ in this. Only today, the UK government were requested to lead the way in improving access to buildings for disabled people, according to a new report. The document, Building for Equality: Disability and the Built Environment, published by the Women and Equalities Committee, highlights the challenges facing disabled people in accessing homes, public spaces and other buildings. It recommends that the government should develop a cross-departmental strategy bringing together all built environment policy affecting accessibility.

Whatever your view about ‘dementia friendly communities’, I feel that it is a dangerous mentality which has emerged that such communities need to be ‘commissioned’ and somehow overseen by a ‘provider’. I have known some excellent local initiatives to have been totally annihilated by not having the ‘appropriate’ backing. This has to cause alarm for anyone who is interested in equity. And it does rather beg the question of whether ‘dementia friendly communities’ have become too much of a brand, with slick marketing?

Take, for example, the notion that ‘dementia friendly communities’ should align to a certain specification or standards. Intuitively, this makes sense for streamlining the efficiency of the production of a dementia friendly communities, but dementia friendly communities are not BigMacs – i.e. the same product whether in Dublin or Dubai. With the rest of the world entrenched in austerity, it is curious that bits of the third sector should somehow consider themselves immune from financial pressures. What would have been helpful was whether the introduction of standards would unnecessarily cost money for what ideally should be organic initiatives led by persons living beyond a diagnosis of dementia. Also, whether the standards basically only benefited big business in some weird neoliberal ‘survival of the fitness’ by imposing a level of top level management where only the financially fittest could survive.

I disagree fundamentally with the assumption made so easily in conferences and commissioning pitches that ‘Dementia Friends’ is a social movement. I think any process where you can become a ‘Dementia Friend’ by clicktivism merits scrutiny. There’s no doubt that ‘Dementia Friends’ has had a formidable up-front investment, and the results of the quality monitoring of this unbelievably are still in development. ‘Dementia Friends’ is a brand. If you object to my characterisation of this, feel free to look at the number of diverse intellectual property classes it is registered for.

For example https://www.ipo.gov.uk/tmcase/Results/1/UK00002640312

Examples of classes

The product in ‘Dementia Friends’, a script delivered verbatim by many volunteers, a script so rigid and intransigent that you should not depart from it even if you happen to be a dementia academic or practitioner, is so homogenous  that I really feel it cannot even with the most generous will in the world be called ‘a social movement’. If you have private interests in dementia research or the collapse in social care (mitigating against the delivery of high quality dementia friendly communities), as a dementia friends ‘champion’, you are best parking them at the front door. Again: not a social movement.

But I do not wish to give a biased one sided view of Dementia Friends.

It was a highly effective programme for mitigating against the stigma and prejudice faced by dementia (though it is worth noting that five years after its introduction the English newspapers are still stuffed full of headlines about ‘dementia sufferers’ or ‘dementia victims’.) As a brand, across different jurisdictions, it has the promise to be cost-effective due to ‘economies of scale’, and well rehearsed marketing channels (possibly due to good relationships between large multinational dementia charities).
As a product, it is highly visible with good brand identity.

That’s the selling BigMacs in different continents without needing to change the product bit of the blogpost. But we know that there are huge cultural differences in perception of living beyond dementia and caregiving, as well as formidable socio-economic differences. So the argument runs that the homogeneous international marketing of a particular brand of ‘dementia friendliness’ runs the risk of squashing diversity and innovation, and at the very worst is a horrible form of cultural imperialism imposing one nation’s cultural views about dementia.

Global image of the brand can be effectively reinforced via the application of standardisation to integrated marketing communication strategy. The slogan of a global sports clothing company Nike, ‘Just Do It’ can be mentioned to justify this argument. This slogan effectively communicates the same marketing message and promotes the same lifestyles in the global scale, and so far Nike has immensely benefited from this strategy in terms of profit maximisation.

Nike

However, one wonders whether larger providers in the third sector are really the best people alone to build ‘dementia friendly communities’. If one is not careful, corporate and regulatory capture can both rear their ugly heads. Corporate capture refers to the means by which an economic elite undermine the realisation of human rights and the environment by exerting undue influence over domestic and international decision-makers and public institutions. Regulatory capture is a form of government failure that occurs when a regulatory agency, created to act in the public interest, instead advances the commercial or political concerns of special interest groups that dominate the industry or sector it is charged with regulating.

In international marketing, the “adaptation strategy” implies changing various aspects of products and services to a considerable extent in order to meet the needs of consumers in international markets taking into account their differences. Adaptation strategy offers advantages of meeting differences of local markets at various levels, and in this way achieving greater levels of customer satisfaction. But here it is worth noting why the language is in itself objectionable – people living beyond a diagnosis of dementia and their care partners are citizens, not merely consumers to be sold an ever increasing number of products in a ‘dementia friendly way’.

So Glenn for me absolutely hits the nail on the head for me in his speech for the 19th Asia Pacific conference:

“Across the world the concept of dementia friendly communities is being given practical expression in four different ways by;

  1. Being inclusive and supporting and protecting the rights of a person with dementia.
  2. Tackling stigma and lack of community understanding of dementia.
  3. Increasing the capability of the health and care workforce and availability of 
key services.
  4. Improving the physical environment – a topic that is central to the ageing cities 
movement.

.There is no one size fits all in designing dementia friendly communities. But to be successful there are some key steps. 
First, to involve people with dementia as equal partners. Second, to determine what action is needed. 
Third, to ask people with dementia and other stakeholders if they consider their community to be dementia friendly. And if not, why not. 
Fourth, to form local dementia alliances involving businesses, local government, service agencies, medical services and hospitals. This may help attract funds for the project and a project officer.”

One way of avoiding the big corporatisation of dementia friendly communities is to support the organic initiatives which do not attract as much funding. The work of ‘Dementia Alliance International’ is particularly recommendable as it works closely with Alzheimer’s Disease International on the formation of global policy, including the application of the United Nations Convention on Rights of Persons with Disabilities’ and dementia.

Dementia Alliance International (here) is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . They seek to represent, support, and educate others living with the disease, and the wider dementia community. They are an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

As they themselves say:

“Our work on claiming the Human Rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. We are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded.”

 

That is surely where the discussion of ‘dementia friendly communities’ MUST start?

Enjoy #ADI2017.

 

 

@dr_shibley

 

 

 

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What would happen if there were no medical treatment options for dementia?

Currently, what will get physicians or psychiatrists grabbing for the prescription pad in dementia for a person living with dementia might be a need to prescribe a drug to produce a modest improvement in thinking, or a sub-domain of thinking such as memory. There’s been a drive, particularly since the famous report by Prof Sube Banerjee in 2009, to reduce the volume of inappropriate antipsychotic prescriptions. These antipsychotics were sometimes given inappropriately as a disproportionate chemical form of restraint, thus offending human rights, where other options might have been more suitable (for example finding out that a person with dementia had a treatable source of pain which could be treated appropriately.)

Whilst there’s a lot of hype to do with ‘change’, some of it unhelpful, some of the work in change is very helpful. I came across, via tweet from Helen Bevan, a very interesting activity called “BANNED“, from the Patient Safety and Quality Control Council.

I’d be very interested to hear of responses to this activity for the specific scenario where a clinical practitioner is unable to recommend or prescribe ANY medication for dementia. In the case of cognitive enhancers, these can have modest effect anyway (though it is worth noting for some the effect is significant and substantial).

I have therefore reproduced the activity instruction sheet accordingly.

“Sometimes turning your thinking on its head can be the best thing to do when trying to generate new ideas and solutions to old problems. The banned exercise gets you to create future scenarios based on imagining a world in which a product, service or experience no longer exists. It explores how people might adapt in this situation to generate new ideas and creative solutions.

You’ll need

  • 30 minutes
  • Groups of 6-8
  • Flipchart paper for storyboards
  • Marker pens

What to do

Decide on a scenario to investigate. For example, a world in which there is no medical treatment for dementia, for example there are no cholinesterase inhibitors or antipsychotics.
Determine time and scope for the scenario. For example, we begin when the person with dementia and care partner enter the room, with the person with dementia having been newly diagnosed with dementia.
Identify stakeholders. For example, patients, nurses, physiotherapists, occupational therapists, care aids, physicians, etc.
Create a storyboard by drawing your scenario. How would you adapt in your new world in which there were no medical treatment options for dementia? You might recommend memory aids or smartphone apps. Try to generate as many adaptations as possible.
Analyse the scenario through discussion. Explore your adaptations and how they might be put into practice.
Summarise insights. Discuss your adaptations and people’s reactions to them. Are any possible to test or implement?

Debrief

  • What did it feel like to imagine a world where medical treatment option no longer existed?
  • Were you surprised by the ideas that you were able to generate?
  • How could you apply this learning/experience in your work?”

 

@dr_shibley

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education for all about dementia