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My recent experience of acute hospital care for a person with dementia. It’s all in the implementation.

 

My mum’s emergency acute admission to a local busy NHS teaching hospital here in North London was in many ways ‘the best of times and the worst of times’.

 

There was a lot to be cheerful about. Many of the registered state nurses and health care assistants were teaching each other in front of my eyes about dementia care, in a way I had not expected. You see, my mother has been recently diagnosed with mixed Alzheimer’s and vascular dementias, and, as her only son who lives with her, we have both found the actual experience rather tough going at many times.

 

Nobody gives you a manual on how ‘to care’. You always feel you are not doing a good enough job, even if you are actually working at full throttle. You don’t often perceive of yourself as a carer, essentially doing a full time job, as you fell insidiously into the role.

 

I am on the GMC medical register, with a license to practise, so it was hurtful to see a Consultant essentially examining my mother in the Acute Treatment Area treating her like a slab of meat. My mother was clearly uncomfortable lying flat on the trolley, and, when I asked why the Doctor had not introduced herself, she said her name and that she was a Consultant.

 

I also found it hurtful that many healthcare professionals seem to judge me personally on my ataxic gait, dressed casually, jumping to conclusions over my perceivied lack of intelligence. One health care assistant aggressively accused of me being ‘drunk’, when in fact I have not had an alcoholic drink for over ten years being in recovery.

 

When my mum was on the acute medical assessment, it was the pits. There was a constant stream of different people, never introducing themselves (despite the #hellomynameis campaign), mum being taken to investigations without any warning, mum being expected to give information when all she could reply was, ‘ask my son’.

 

When I dared to explain I was entitled to visit my mother outside traditional visiting hours, another nurse pointed to a poster on the wall describing ‘John’s Campaign’. There’s no doubt for me that the campaign has been a roaring success with the ostensible backing of the great and the good, including the media, but it was disappointing to see a few nurses pointing at posters to demonstrate to me their actual understanding of the need for the campaign.

 

The dementia-friendy ward where my mum was transferred to was brilliant. The signage was excellent, though I did notice that the ‘dementia friendly clock’ was showing the wrong day one day which even I found disorientating. One HCA taught a nurse to give a massage rather than bleep the oncall for an anxiolytic.

 

And indeed the ward were very prompt at getting my mum sitting upright in her chair, with an inflating cushion, instead of lying all day in bed. The senior nurses had a very good understanding too of the spirit of #endpjparalysis, which I was very happy to see, and even provided a clear discussion of the potential problems in the campaign’s implementation.

 

But for all the incredible work of the staff on that hospital, system failures continue to undermine the patient and carer experience. I felt the social worker was the most impressive professional I have personally met in my lifetime, and indeed Wayne from transport was an incredibly nice guy.

 

We did end up waiting for transport for five hours and in the end mum and I left in fact at 11.30 pm after my mum had become quite agitated. But this is nothing to do with the hospital, but all to do with wider politics nationally.

 

@dr_shibley

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One day, there will be no paid carers for people living with dementia. Crisis, what crisis?

 

To a response of massive incredulity, the current Chancellor of the Exchequer, Philip Hammond, pre-briefed Andrew Marr at the weekend about the new heat of technology about to take over.

 

Mr Hammond tried to make a point about new technology and employment by correctly pointing to the lack of unemployed shorthand typists despite their skills becoming obsolete.

 

When a cure for dementia emerges in 2025, that’s only eight years away folks, we will no doubt wonder what will happen to the employment prospects of paid ‘dementia carers’.

 

In the rush to cutting costs and automisation, it’s conceivable that dementia robots, such as Paro Seal, will replace the equivalent of the shorthand typists – ‘doing more for less’, and achieving ‘better value’.

 

Finding a cure for dementia has always had the whiff of the search for magical snake oil. The last few years have witnessed, in addition to an acceleration in the number of failed phase III therapeutic orphan drugs for dementia, an increasing diversity of acrobatic attempts at finding a breakthrough.

 

For example: none of our attempts so far have worked, even with rampant evangelical attempts at ‘joining dementia research’, so a megabucks grant goes in, with the usual peers marking each other’s homework, on the combination of spurious variables which might predict even vaguely an increased risk of dementia.

 

The brilliant academic Adelina Comas-Herrera (@AdelinaCoHe)  herself tweeted what seemed an innocuous question the other day about what was known, or had been reported on, the relative resource allocations of cure and care.

 

This is of course is a question which nobody really wants to answer. It is clear that it would be nice not to argue about it, in that we should fund both. But this answer is a total cop-out, given the unavoidable ‘zero sum gain’.

 

As a comparison, the £38 billion going to pay the European Union is not going to be spent on the day-to-day running of social care, which everyone agrees is on its knees despite the valiant efforts of social workers daily.

 

And it seems that each penny of the £38 billion is well spent, and pretty easy to “sign off”, for some future ‘jam tomorrow’ whatever the travails of today. The future is apparently bright.

 

And if at all goes wrong, all the current ‘leaders’, particularly in the third sector or regulators, will be nowhere to seen, in much the same way that the ‘divorce bill’ is nothing to do with Nigel Farage.

 

It would be nice to think that Britain can get the best possible clean exit from the European Union. But no amount of lies will get round the hard facts from experts.

 

Even if we find a cure which covers all >100 dementias by 2025, we don’t know what the role of cognitive therapies through person-centred care will be in maintaining good brain health. This is analogous to refusing to acknowledge a need for a relationship with countries with the European Union after we ‘take back control’.

 

According to Dominic Grieve MP, Brexit was sold as an “all singing and dancing project, and nothing could be further from the truth.” And this is of course the story of a cure for dementia to a tee.

 

Crisis. What crisis?

 

 

@dr_shibley

 

 

 

 

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How might we further detail the identity of frailty?

The current future direction, and indeed past, of “frailty”, for both service provision and research at least, are both intimately linked with the angle of perspective you decide to choose.

“Anekāntavāda” (Sanskrit: अनेकान्तवाद, “many-sidedness”) refers to the Jain doctrine about metaphysical truths that emerged in ancient India; it states that the ‘ultimate truth and reality’ is complex, has multiple aspects (https://en.wikipedia.org/wiki/Anekantavada).

The Jain texts explain the anekāntvāda concept using the parable of blind men and elephant, in a manner similar to those found in both Buddhist and Hindu texts about limits of perception and the importance of complete context.

A famous parable has several Indian variations, but broadly goes as follows:

A group of blind men heard that a strange animal, called an elephant, had been brought to the town, but none of them were aware of its shape and form. They then tried to deduce its form from some preliminary investigations. In the case of the first person, whose hand landed on the trunk, said “This being is like a thick snake”. For another one whose hand reached its ear, it seemed like a kind of fan. As for another person, whose hand was upon its leg, said, the elephant is a pillar like a tree-trunk. The blind man who placed his hand upon its side said, “elephant is a wall”….”

The ‘ultimate truth and reality’ in frailty are sometimes difficult to see, when processes, procedures and policies appear to be so dominant in the discourse.

Part of the drive to wanting to ‘do something’ about frailty, as for dementia, is that there appears to be so much to stake in terms of exposure to risk of increased morbidity and mortality. As for dementia, the rationale has been to hope to intervene in a more timely way, with more accurate timely diagnoses. Frailty could learn lessons here from other fields such as dementia.

Artificial intelligence (AI) is a field of computer science that aims to mimic human thought processes, learning capacity, and knowledge storage. AI techniques have been applied, for example, in cardiovascular medicine to explore novel genotypes and phenotypes in existing diseases, improve the quality of patient care, enable cost-effectiveness, and reduce readmission and mortality rates.

Precision medicine is a new paradigm that combines diagnostic, imaging, and analytical tools to produce accurate diagnoses and therapeutic interventions tailored to the individual patient. This approach stands in contrast to the traditional “one size fits all” concept, according to which researchers develop disease treatments and preventions for an “average” patient without considering individual differences.

If frailty is viewed as a number of different symptom clusters, involving heterogeneity, a ‘swiss army knife’ approach to managing frailty might, in fact, reap dividends.  The “one size fits all” concept has led to many ineffective or inappropriate approaches across health and social care, especially for disease such as dementia and cancer, where comorbidity is the norm rather than the exception.

Psychiatric diseases are very heterogeneous both in clinical manifestation and aetiology, and many care of the elderly conditions are heterogeneous likewise. With the growing interest in personalised medicine, it becomes even more important not only to classify or diagnose someone as a patient with a certain disorder, its treatment needs a more precise definition of the underlying biology, since different biological origins of the same disease may require (very) different treatments.

There are different lines of thinking about what frailty is, and a broad consensus has indeed emerged. Frailty might, nonetheless, benefit from a more sophisticated approach to its identification, which takes on board how the person who is frail is just part of a wider ecosystem which brings with it its own factors encouraging vulnerability or resilience. The recent alternative interpretation (a “network approach”) is gaining some support. It suggests that a stressor causes symptoms that activate other symptoms, in a circular, self-reinforcing way.

This theory moves away from disorders being traditionally conceptualised as categorical or dimensional models. For example, while the clinical specialism of psychiatry has shifted its focus to a more biological approach, social factors still have an important role in crosscultural diagnosis, psychiatric disorders relating to social deprivation, rehabilitation and enabling social inclusion. The degree to which society is willing to accept people with various issues and problems has an obvious impact on their quality of life. An alternative representation of the long-term course of Crohn’s disease complications has introduced the notion of the “rolling phenotype”.

As is commonly observed in clinical practice, this definition allows progression to a more severe phenotype (stricturing, penetrating) but also, regression to a less severe behaviour (inflammatory, or remission) over time.  This might be especially fruitful in models of frailty, where a unilateral accumulation of deficits is often left unchallenged, despite various research and service improvement iniatives to provide effective ‘interventions’ for frailty.

Schizophrenia and dementia as complex syndromes are well recognised. Taking schizophrenia, similar to positive and negative symptoms, the three ’syndromes’ or clusters of symptoms appear to represent independent or semi-independent dimensions of psychopathology that frequently coexist in individuals with schizophrenia. Mental health is not the only place where clusters of symptoms occur. Physical symptoms are likely to occur in clusters that may be associated with adverse outcome in patients with heart failure (HF).

Despite the importance of early recognition of worsening symptoms in HF management, the impact of physical symptoms on adverse outcome has been relatively under-explored in the context of symptom clusters. For example, the “weary and the dyspneic” symptom clusters predicted cardiac rehospitalisation and cardiac mortality, respectively. Patient education for self-monitoring of symptoms should focus on symptom clusters rather than single symptom. Targeting management to the right people, the idea behind realistic medicine, is not a new idea. It has been called various things elsewhere, such as “Choosing Wisely” in the United States and “Slow Medicine” in Italy. They all grow from the same root—reduce unnecessary treatment, address unacceptable variation, and deliver more appropriate, personalised care.

 

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Were ‘dementia friendly communities’ the correct approach after all?

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Some time ago, the Alzheimer’s Society embarked on a programme of making a million (then two million etc.) “Dementia Friends”. These “Dementia Friends” were community ambassadors, not specialists in dementia, who went out to explain in standardised 45-minute chunks what dementia is.

To gauge how successful it has been has turned out to be rather difficult. To the best of my constructive knowledge, despite this investment costing millions, there has never been a peer-reviewed publication on the outcomes of that programme which consumed significant public money. The simple fact is, if this had been a project run by a social enterprise, it would have been subject to the most detailed of examination on value-based returns on investment.

I have no ideological beef with the Alzheimer’s Society. Far from it, I think in the last few years they have been uniquely successful in raising the brand awareness and brand identity of themselves and dementia. When the Health and Social Care Act (2012) was torpedoed by parliament, placing an emphasis on competitive tendering (despite much protesting otherwise), this was a useful competitive advantage for a lot of dementia policy.

There are well rehearsed arguments of where “dementia friendly communities” have been criticised, not just for the United Kingdom but in Japan. For example, it has been mooted whether the programme was primarily for the benefit for actual people living with dementia (here defined as people who’ve been diagnosed with dementia, not merely living with someone with dementia), or a carer. Or neither – it might have been primarily for the benefit of a high street shop or bank. Anyway, at the time, the ideology of behavioural insights and Nudge was beginning to gain momentum.

Indeed, Dementia Alliance International and Alzheimer’s Disease International, and indeed I, had some success in changing the vocabulary aware from ‘friendliness’, which for some denoted a rather patronising twang of ‘does he take sugar?’, to one of inclusivity and accessibility.

Where the Dementia Alliance International then had undoubted success, with the work of Kate Swaffer and Peter Mittler predominantly, was having ‘first mover advantage’ in realising the relevance of the United Nations Convention of Rights for People with Disabilities to the lives of people with dementia. I then discussed the importance of this to the World Health Organization’s policy of sustainable development goals, long before others “joined in”.

But I’m tempted now to heat and eat a strong dollop of humble pie. On the one hand, I have argued, quite vociferously, that promoting health must be a component of promoting wellbeing, and it was hard to sustain positive outcomes in dementia friendly communities against a backdrop of austerity or cuts, or a NHS and social care system perceived by many to be struggling to meet demand due to inadequate funding.

But actually, as put forward by the Alzheimer’s Society themselves, the experience of someone living with dementia, and his or her immediate friends or family, does not stop in a GP’s surgery or an acute admission. There is a wider community, where housing and transport could be ‘dementia friendly’.

Apart from a separate argument of whether it is appropriate to address persons in identity by one of their principal diagnoses (a conflict with person-centred approaches), it is evident to me that there is a strong argument for addressing the health assets of all people.

Indeed, as Chris Roberts, a leading campaigner in the UK said, and I hope that I’m not misquoting him, what is likely to be ‘dementia friendly’ is likely to be friendly for everyone. Should there be also  “frailty friends” or “cancer friends” for balance?

Taking a medical model of dementia even characterised by complexity and comorbidity, Chris’ approach is practical. Also, a move towards dealing with health assets would be a direct way of addressing health inequalities or the social determinants of health.

It also attempts to address the question of ‘what makes you healthy?’ as opposed to ‘what makes you ill?’  I feel that you can only measure value but asking people to identify what outcomes matter to them (ask ‘what matters to you?’ rather than ‘what’s the matter with you?’)

I remember first criticising ‘dementia friendly communities’ saying that it should be ‘dementia friendly networks’ (or similar), reflecting a potential online connectivity of all persons. But I am inclined to do a volte face on this too, in that it might not be possible to address all inclusion needs for people living alone with dementia from an app on a smartphone. As it happens, these are exactly the sorts of people who are genuinely ‘seldom heard’ at all – not just in conferences, but seldom heard from the NHS and social care radar until crisis point is sadly reached.

I think it’s now likely a more pro-active approach with advance care planning is needed to promote health assets for older people living with dementia and/or frailty. This is not simply a question of bean-counting, for the avoidance of admissions. This is not simply a question of reducing mortality or reducing morbidity, or being more cost effective. This, I feel, is good common sense?

 

@dr_shibley

 

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Essentials of dementia: dementia awareness for professionals and practitioners

Education, training and skills acquisition are a hallmark of good dementia care.

 

Dementia represents one of the biggest global health challenges facing society today. Proposed dementia care pathways involve many disciplines and health sectors, and a global priority is the continuing education of professionals delivering care (World Health Organisation, 2012).

 

In other words – “dementia awareness” should definitely apply to all practitioners and professionals too.

 

The aim is to support all professionals and practitioners to be responsive to the needs of people with dementia, to continue to develop their skills and expertise and to improve the contribution they make to achieving the best outcomes for people with dementia, their carers and families.

 

In England, it is estimated that around 676,000 people have dementia. In the whole of the UK, the number of people with dementia is 850,000.

 

At the heart of the task to improve dementia care is a workforce not sufficiently equipped to work with people with dementia. For example, people with dementia aged over 65 years occupy one quarter of hospital beds at any one time.

 

Key stakeholders are, however, beginning to respond to the agenda.

 

Some time ago, the Alzheimer’s Society “Counting the cost” (2009) report found that people with dementia are staying in hospital longer than those without dementia, with a detrimental impact on the individual’s dementia and physical health.

 

Around the same time, the Department of Health published the National Dementia Strategy for England in 2009, “Living well with dementia”, which committed to developing an informed and effective workforce was identified as key to delivering the Strategy.

 

It is widely believed that, to support people in living well with dementia, we need to continue to make progress on improving awareness and understanding of dementia to transform the way society thinks and acts about dementia. Every organisation and every person who makes up a community has both a role and a responsibility to act.

 

There is substantial interest from all parts of the health and care spectrum with a real demand for knowledge, guidelines and information from prevention to end of life care and everything in between.

 

Dementia Core Skills Education and Training Framework

 

This Dementia Core Skills Education and Training Framework is an extraordinarily useful and helpful resource which details the essential skills and knowledge necessary across the health and social care spectrum.

 

The Dementia Core Skills Education and Training Framework was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health, Health Education England, Skills for Care and an expert advisory group that ensured multi-organisational and multi-stakeholder representation. Launched in October 2015, it is a comprehensive resource which details the essential skills and knowledge necessary for staff across the broad and varied spectrum of health and social care settings and will support organisations to:

 

  • standardise the interpretation of dementia education and training
  • guide the focus and aims of dementia education and training delivery through key learning outcomes
  • ensure the educational relevance of dementia training
  • improve the quality and consistency of education and training provision.

 

It sets out standards needed in dementia education and training including raising dementia awareness, knowledge and skills for those that have regular contact with people affected by dementia and knowledge and skills for those in leadership roles.

 

 

Awareness and ‘social action’

 

Progress has been made on encouraging businesses, local authorities, the wider public sector and civil society to work together to tackle discrimination through dementia friendly communities.

 

Awareness and social action has already been a phenomenal success with over 2 million people becoming Dementia Friends. Dementia awareness and understanding has continued to increase through the creation of an additional 400,000 Dementia Friends and through the launch of Black and Minority Ethnic materials for Dementia Friends.

 

People aged over 65 now account for over two-thirds of patients in general hospitals and 30% of them will have dementia. Many may be diagnosed with dementia for the first time when admitted to hospital for another reason.

 

As such, all hospitals and physicians need to be ready to manage the care of patients with dementia.

 

All staff involved in dementia care need to be informed, skilled and have enough time to care. They need to be fully involved in the “social action” for change.

 

For example:

 

  • Nurses need good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication.

 

  • Speech and language therapy services should provide equal access to intervention for communication and for swallowing disorders. Early speech and language therapy intervention is crucial so that people with dementia and their carers have their needs met in a timely way.

 

  • Social work is at the heart of empowering people with positive risk taking approaches and making sure their rights are respected and supported (Department of Health, 2014). Social workers seek to build meaningful relationships with people with dementia and their family carers, making sure they remain at the heart of the decision-making process.

 

  • Occupational therapists evaluate persons with dementia to determine their strengths, impairments, and performance areas needing intervention (e.g. Schaber and Lieberman, 2010).

 

  • Likewise, physios can assess problems that restrict a person’s physical activities as well as how able they are to join in with everyday life. The physio can work with the person with dementia and their carers to encourage and promote physical activity and maintain their mobility and independence for as long as possible.

 

 

Dementia awareness and risk reduction

 

To date, there has been limited research concerning public perceptions of brain health and dementia risk reduction. For example, a national survey undertaken in Australia in 2005 found that popular beliefs about dementia risk were weakly aligned with the scientific evidence with a low level of understanding about the association between dementia and cardiovascular factors (Smith, Ali and Quach, 2015).

 

In addition, even if such links are made, such behaviour change is not always easy (O’Donnell et al., 2015).

 

Raising public awareness of how healthy lifestyle choices can reduce personal risk of developing dementia is a priority.  The “NHS Health Check” includes a mandatory dementia awareness raising component for people over the age of 65.

 

But merely providing information about the latest research via educational sessions to health professionals caring for people with dementia may be insufficient to drive change (Goodenough et al., 2016).

 

 

 

 

Exciting developments

 

Commissioners in both health and social care need support to improve their awareness of effective practice in the provision of post diagnostic care and support.

 

Individuals with dementia who may lack the mental capacity to make their own decisions have their rights enshrined in the Mental Capacity Act 2005 (MCA).  Implemented in 2007, the Mental Capacity Act (MCA) provides opportunities for assisting with planning and making decisions on others’ behalf, and may be expected to be entrenched within clinical practice. Jill Manthorpe, Kritika Samsi and Joan Rapaport (2014) conducted follow-up qualitative interviews with 15 community-based dementia nurses to detect changes and developments in views and practices of the MCA. It was striking that some participants were concerned about lack of understanding amongst other professionals and felt more public awareness was required. All providers of care need to be encouraged to make available suitable training materials to their staff.

 

The World Dementia Council has now been re-formed, with a new Chair and Vice Chair, a refreshed membership and terms of reference and a new more action-focused operating model. Improve awareness of dementia, increase the focus on risk reduction and preventative approaches and diminish the stigma associated with the disease (their work is described here https://worlddementiacouncil.org/our-work/our-vision-and-mission).

 

 

 

About this book

 

For high quality dementia care to be provided, we need a workforce that is not only knowledgeable about dementia but also skilled in the provision of care, and appreciative of its importance.

 

It is striking that other jurisdictions other than the UK have also had difficulties in effectively educating their workforce about dementia.

We hope that, whatever your personal and professional background, however little or much you know about dementia, you will find this book informative, interesting and relevant to your needs.

Please let us know what you think of our book, or how you get on.

Dr Shibley Rahman (Twitter @dr_shibley)

Prof Rob Howard ((Twitter @profrobhoward)

London, August 2017

 

Note:

“Essentials of dementia: dementia awareness for professionals and practitioners” by Shibley Rahman and Rob Howard will be published on January 21, 2018.

 

Contents

 

Foreword (Karen Dening)

Introduction (Kate Swaffer)

 

Preface

 

Chapter 1:

Dementia awareness

 

Chapter 2:

Dementia identification, assessment and diagnosis

 

Chapter 3:

Dementia risk reduction and prevention

 

Chapter 4:

Person-centred dementia care

 

Chapter 5:

Communication, interaction and behaviour in dementia care

 

Chapter 6:

Health and well-being in dementia care

 

Chapter 7:

Pharmacological interventions in dementia care

 

Chapter 8:

Living well with dementia and promoting independence

 

Chapter 9:

Families and carers as partners in dementia care

 

Chapter 10:

Equality diversity and inclusion in dementia care

 

Chapter 11:

Law, ethics and safeguarding in dementia care

 

Chapter 12:

End of life dementia

 

Chapter 13:

Research and evidence-based practice in dementia care

 

Chapter 14:

Leadership in transforming dementia care

 

Afterword

 

Bibliography

 

 

References

 

Alzheimer’s Society (2009) Counting the cost.

 

Department of Health (2009) Living well with dementia: A National Dementia Strategy. Department of Health: Leeds.

 

Department of Health (2014).  A manual for good social work practice. Supporting adults who have dementia.  https://www.gov.uk/government/publications/learning-resource-for-social-work-with-adults-who-have-dementia

 

Department of Health (2016) Prime Minister’s Challenge on Dementia 2020 Implementation Plan, https://www.gov.uk/government/publications/challenge-on-dementia-2020-implementation-plan

 

Goodenough B, Fleming R, Young M, Burns K, Jones C, Forbes F. Raising awareness of research evidence among health professionals delivering dementia care: Are knowledge translation workshops useful? Gerontol Geriatr Educ. 2016 Oct 24:1-15.

 

Manthorpe J, Samsi K, Rapaport J. Dementia nurses’ experience of the Mental Capacity Act 2005: a follow-up study. Dementia (London). 2014 Jan;13(1):131-43.

 

O’Donnell CA, Browne S, Pierce M, McConnachie A, Deckers K, van Boxtel MP, Manera V, Köhler S, Redmond M, Verhey FR, van den Akker M, Power K, Irving K; In-MINDD Team. Reducing dementia risk by targeting modifiable risk factors in mid-life: study protocol for the Innovative Midlife Intervention for Dementia Deterrence (In-MINDD) randomised controlled feasibility trial. Pilot Feasibility Stud. 2015 Nov 17;1:40.

 

Royal College of Nursing (2013). Dementia: Commitment to the care of people with dementia in hospital settings, https://www.rcn.org.uk/professional-development/publications/pub-004235

 

Schaber, P., Lieberman, D. (2010). Occupational therapy practice guidelines for adults with Alzheimer’s disease and related disorders. Bethesda, MD: AOTA Press.

 

Smith BJ, Ali S, Quach H. The motivation and actions of Australians concerning brain health and dementia risk reduction. Health Promot J Austr. 2015 Aug;26(2):115-21.

 

World Health Organisation. (2012). Dementia: A public health priority. Geneva, Switzerland: WHO Press.

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Should we use ‘scare tactics’ in promoting the urgency of dementia?

 

A very fortunate happened yesterday. A London black cabbie had promised me to drive me to the ExCeL centre in London, if I paid him, to attend first day the main conference of the Alzheimer’s Association International Conference.

 

This year, there are no ‘sunny uplands’. There is normally pretty active pre-briefing of the latest phase III trial of a possible cure for dementia. Not this year.

 

But I found the atmosphere of all the junior and senior scientists to be ‘buzzing’. The amount of detail and rigour in scientific method in discovering the neural susbtrates of brain function, of relevance of Alzheimer’s disease, was phenomenal.

 

I last did my Ph.D. in Cambridge between 1997 and 2000 with Prof John Hodges, a world expert in the frontotemporal dementia form of dementia. Frontotemporal dementia is still an important cause of dementia.

 

That black cabbie told me how his mother had been ultimately diagnosed with dementia, although she was first misdiagnosed with dementia in a hospital by a locum doctor when she had a urinary tract infection. She didn’t know what day of the week it was. She thought she was in a hotel. She had heard of Margaret Thatcher though.

 

There is clearly progress being made in the accuracy of diagnosing dementia through biomarkers in cerebrospinal fluid. But I was a junior physician at the National Hospital for Neurology and Neurosurgery, it used to take me at least 30 minutes to get this sample off a patient from using a special needle. And even then that was for inpatients.

 

The aim is with a sophisticated knowledge of the molecular biology of the process causing an individual’s dementia we might be able to slow down its progression more effectively.

 

This is of course partly an admission that the current method of diagnosis by ‘clinical acumen’ is subject to too much error, but the essential issue remains that many in the UK still don’t receive their diagnosis of dementia on time. And the subsequent post diagnostic care and support, for both an individual with dementia and carer, can be not that good.

 

You can’t help feel but proud at the sheer devotion of the scientists around the world, in ‘fighting dementia’, but I on the whole wish they would simply say they love neuroscience. An orange being stripped of its segments and peel, from an advertising company for the Alzheimer’s Research UK, both attracted massive praise and some criticism.

 

Terms such as ‘burden’ still continue to exist with dementia, and there’s no doubt that there are negative aspects to dementia. But I know from close family, who are loved ones, who happen to have dementia, that there’s a lot more to them than the certainty of their diagnoses (or not).

 

 

@dr_shibley

 

 

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The power of stigma. It was more than a mere balloon.

One of my mum’s ‘favourite books’ is “What the hell happened to my brain?” by her friend Kate Swaffer. Something that none of us predicted that the publisher, Jessica Kingsley Publisher, would arrange for different versions around the world to be produced, but some of the picture covers might get ‘lost in translation’.

The German version was originally somebody holding a balloon to his face. This, it is said, was supposed to signify somebody’s frailty in having dementia.

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Amazingly, despite the legal paperwork of liabilities, third party liabilities and contract law, >500 complaints led to this book cover being withdrawn.

Indeed, with me now writing a book on frailty for Routledge with main forewords by Prof Ken Rockwood and Prof Adam Gordon, I can see how the two areas might have blurred together. Frailty, although no widespread international definition exists, broadly refers to a low resilience to and high vulnerability to stressors or shocks when tend to leave a person not fully recovered. This means that someone with cognitive frailty, for example, might easily get affected by an urinary tract infection to become frankly delirious or show cognition at levels of a severe dementia.

Cultural differences do exist. Indeed, if a charity were to market its logo abroad, for example in selling the brand of ‘dementia friendly communities’, if it had substantial financial resources, it might instruct a branding agency to advise on cultural implications (e.g. colour) of the brand in a foreign jurisdiction.

It is hard for any of us who are not German to understand the precise meaning of why somebody holding a balloon to his face is an accurate and reliable portrayal of dementia. Cultural differences are particularly important in English dementia service provision, for example in respecting equality and diversity for population sub-groups such as black and minority ethnic subgroups or lesbian, gay, bisexual or transgender individuals.

I don’t want to go into half a century of literature on ‘stigma’ which I am reviewing for my book on frailty here. I did briefly go into stigma for my 2nd book ‘Living better with dementia’ in the context of dementia. But I have been struck with how the worlds of ‘stigma’ and ‘prejudice’ often have overlapped.

The word ‘stigma’ originally means “mark”. In frailty, it might be obvious in that someone who looks physically frail might be “recognised when you see it”. But there is still the possibility that someone is actually frail who does not ‘look frail’, as identified for example by the Electronic Frailty Index.

And the age old question of ‘what does a person with dementia look like?’ might be relevant here. A person with dementia might not have two heads and four feet, for example. This may seem like a ludicrously defensive statement, but the statement is still often made around the world: “But you don’t look like a person with dementia.”

Stigma is problematic as it can create a sense of “otherness”, at worst a different class or even subclass of “human beings”. This might get inadvertently exacerbated if that class gets their own award ceremonies (“most exceptional person with dementia”) or be the subject of accolades (“awards for dementia friendly communities”).

Unfortunately, what can be somebody’s stigma can be another person’s well intended brand. But the sense of ‘otherness’, or being different, is definitely one to watch out for, as it can engender a sense of inferiority. Stigma, for example, is enough for people with mental health issues such as schizophrenia and psychotic delusions to stop engaging with health and social care services.

Arguably, the sense of ‘otherness’ and ‘differentness’ is not particularly helped when a CEO of an international dementia charity excitedly tweets on a person with dementia speaking, “you could hear a pin drop”, as if that person with dementia is a tenth wonder of the world but not in a good sense.

The significance of stigma for me is that it can lead to individuals being labelled with an overriding narrative of power dynamics, whether from powerful charities or clinicians. This is worth looking out for, whoever you are.

 

@dr_shibley

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Dementia means dementia – especially for the dementia industry

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The phrase “Brexit means Brexit” epitomises a political farce of the highest magnitude, as no-one, not least Jean-Claude Juncker, knows what Britain ‘leaving’ the European Union will look like.

 

Brexit could mean leaving the single market altogether, halting involvement with the Customs Union, or even withdrawing from the jurisdiction of the European Court of Justice. No-one knows yet.

 

An equally fatuous assumption in the Prime Minister’s Dementia Challenge, where the Prime Minister in question was David Cameron, was that ‘dementia means dementia’.

 

In a world where the CEO of a dementia charity would now become the most influential person in dementia, not a hardworking FY2 grade working in an overloaded memory clinic in a large teaching hospital, dementia was reborne as a lucrative brand and industry.

 

The boon to PR agencies and marketing gurus was not felt by the managed decline of social care and social work, to all extent airbrushed from all policy documents on dementia from the current administration of the UK.

 

The systematised demise of health and social care systems, where experts were valued not rubbished, ran in parallel with the assumption that ‘there is no magic tree’. But as Noami Klein of ‘shock doctrine’ fame correctly pointed out on the Andrew Marr Show this morning, this myth was well and truly busted with the multi-billion pound recapitalisation of the banks after the global financial crash.

 

Whatever the ‘divorce bill’ for the European Union, we’ll pay it. But – to pay the workforce properly to optimise care and to prevent burnout, hmmm… “Cost neutral” dementia friendly communities, with dementia-friendly mail-order catalogues and obliteration of the supply of social housing, could easily pick up the pieces.

 

The pathway of top directors in dementia charities and social enterprises earning lucrative salaries in the dementia industry is deliverable only if some volunteers with dementia act as ambassadors with their travel expenses. There’s no money left for social work or social care, or for nurses, in Lewisham, but there is miraculously money for research and development in a California-based Pharma start-up.

 

It would then become all too uncommon for specialists in dementia to get routinely omitted from discussions or conferences on dementia, with engagement officers and ambassadors ‘too busy’ networking or promoting their charities and social enterprises to talk to clinicians or practitioners working daily in dementia care.

 

Like there are a hundred and one permutations to leave the European Union, there are over a hundred different causes of dementia. The idea that GPs could simply ask ‘have you had memory problems?’ to diagnose dementia was sadly a bit of fake news which took hold after the Prime Minister’s Dementia Challenge.

 

Every clinician with competence in dementia knew that the visual hallucinations in Lewy body dementia or the profound behavioural changes in frontal dementia would not easily get caught by this particular working definition of dementia, however good the marketing of young onset dementia charities.

 

“Virtue signalling” from dementia charity never has had it so good: loosely defined as “many people say or write things to indicate that they are virtuous”. So, intergenerational dementia might mean sitting together in a heavily branded “dementia friendly church” or teaching 3 year olds how to diagnose dementia in primary school (when senior clinicians have been inexplicably failing for decades), not asking very high-income youngsters to pay their taxes.

 

Of course, given the actual complexity of dementia, it is indeed impossible to talk convincingly of a single cure for dementia, even if the refashioning of existant drugs such as trazodone might be hyped up as the brand new cure somewhat beyond reasonable expectation.

 

But it is this promise of the bright future for dementia, for a ‘world without dementia’ or ‘ending dementia’ as espoused by large charities, which is the promised land. Meanwhile, one is encouraged to right to be resentful to pump money into promoting health and social care, in much the same way you should get rightfully get angry at paying your subsidies to the European Union.

 

Bring on the ‘twiddlemuffs’ and the audio playlists to improve the wellbeing of everyone with dementia. As far as I feel, the cure for dementia was a lie so large it should have been put on the side of a bus, but this is a world where anything goes, including reinforcing tower blocks with combustible cladding to give people council tax rebates.

 

@dr_shibley

 

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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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