In “Big Dementia”, who cares about dementia carers?

Without the work of unpaid carers, the formal care system would be likely to collapse. Some feel that the State gets a “very good deal” out of this current system. The ongoing support from unpaid carers will be a particular issue for the care system in the future, as changing demographic patterns, shifts in family composition, labour force participation and increased geographical mobility will affect the availability of the unpaid care workforce. There are also significant issues emerging in care work.

It can be argued that some carers in dementia, whether unpaid carers or paid care workers, are perceived rather unfairly by society, and this is a matter of real national concern. The issue of researching personalised medicines, and pooling clinical drug trial data, across a number of different jurisdictions, is a curiously international phenomena. It feeds into the ‘big is better’ narrative, which is of course a key aspect of why large multinational companies like ‘Big Data’. But converting our response to dementia to a solution for Big Pharma is not solely the answer. The answer is not simply ‘Big Dementia’, much as that might be attractive for the corporates. It is just as crucial to consider who cares about dementia carers. The two are not necessarily mutually exclusive of course. In an ideal world, we should like to offer the best care for people with dementia, as well as effective symptomatic treatment as well as a cure. However, it’d be a disaster if we could hold our hands up, and say that we could in all reality offer neither. As the international economies recover after the global financial crash, caused by the effects of poor global regulation of securitised mortgage products, it might seem fitting that the international landscape can be tweaked to make dementia profitable for Big Pharma. However, it is clear that our own national parliament, in the recent ‘dementia care and services’ debate on 7 January 2014, wishes to have a frank and sincere debate about who cares for the carers. As a society, this is dependent on economics within our control. If people need to talk about about the ‘cost’ of dementia relentlessly, there might be an equal and opposite need to talk about the value of carers; and this needs to be a national debate.

The usual tired mantra from politicians would of course be trotted out, particularly from those of a certain political inclination, that as the economy improves our living standards will improve. But it has been a concern of all main political parties that living standards for the many are not expected to rise as the economy recovers. In this jurisdiction, there’s a particular phenomenon of how the very wealthy seem to have been relatively immune from the global financial crash. This ‘cost of living crisis’ has been partly attributed to big corporates colluding legally to maintain prices to promote shareholder dividend rather than customer value. In England, the Health and Social Care Act (2012) was legislated by the current government to promote a quasi-market in the NHS in England. The aim was to introduce competition, bolster an economic market regulator, and to produce a mechanism for fast managed decline of ‘failing’ NHS Foundation Trusts. Clinical commissioning groups (CCGs) and health and wellbeing boards were also introduced new parts of the NHS in England. CCGs plan and buy local health services, while health and wellbeing boards influence the local decisions that shape health, public health and social care. In this new political and socio-economic landscape, it has been particularly striking, but encouraging, that the shared vision of the “Dementia Action Alliance” is of an England and Wales where the health and wellbeing of carer of a person with dementia are of equal priority to those of the person for whom they care. Ideally, for competition to thrive, it should not be in the hands of a few corporates and corporate-like charities, but all stakeholders should be given a fair slice of the action.

The wellbeing of carers of dementia in England is related to both its national economy and law, and this is something which is not within the powers of the G8 arena. In keeping with previous Conservative governments, George Osborne has warned that “self-defeating” increases to the minimum wage could “cost jobs”, and John Major, the Prime Minister 1990-7 had argued strongly the dangers of the national minimum wage. Many of the same arguments are likely to resurface as the UK Labour Party will undoubtedly raise the importance of the “living wage”, prior to the general election to be held on May 7th 2015. Cabinet ministers including Business Secretary Vince Cable and Work and Pensions Secretary Iain Duncan Smith are reportedly pressing, currently, for an “above-inflation rise” of 50p or more. Mr Osborne said he too wanted to see the £6.31 hourly minimum wage rise, but he said it should be left to the Low Pay Commission to set the appropriate level.

As Norman Lamb said in the parliamentary debate the other day, “We ask carers to do some of the most difficult work that one can ever imagine but the rewards and the training and support they get is minimal.”

An emerging political consensus has promisingly emerged that “we can never get good care on the back of exploiting very low-paid workers”, as Lamb put it. It turns out that carers are currently paid the national minimum wage if they are lucky. That is, of course, a breach of the minimum wage legislation. According to an authoritative study Dr Shereen Hussein, of King’s College London, estimates that there are between 150,000 and 220,000 care workers in this position. And this is using conservative assumptions – the real number could be higher. The flouting of national minimum wage has, however, become alarmingly widespread.  There are a variety of employment practices that result in the minimum wage being circumvented, the most common of which is when councils sign contracts with private providers who recruit staff to provide short slivers of care in the home. A quarter of an hour can be all that a care worker gets to wash, change, feed and talk to someone with dementia. Dignity for the client is often the first casualty: a variety of groups representing the vulnerable, as well as some of the more scrupulous employers, fear that rushed care contracted by the minute often means inadequate care. Previous findings suggest almost half of councils still set 15 minutes as their minimum time slot.

Furthermore, many paid care workers are on zero-hours contracts. Unison’s ethical care charter  aims to put an end to poor pay and working conditions in home care services. Under the charter, for example, Islington council has agreed to implement the charter’s main principles of getting rid of zero hour contracts, ensuring travel time is counted in employees’ paid hours and implementing the London living wage, as well as setting up occupational sickness schemes. Islington, alongside Southwark council, has been an early adopter of the recommendations put forward by Unison in the their report into home care. Published in 2012, the report found that good carers were being lost to “easier jobs that pay more, like in supermarkets” after finding themselves unable to support their family on an inadequate and unreliable salary.

Many paid care workers also do not get paid for travelling between the appointments they undertake, but clearly care workers must be paid when they are travelling from one home to another. Furthermore it is common for remuneration systems to pay only pay per minute actually spent with clients, not the travel time between them. Dozens of these work-related journeys could be made each week as it’s a core part of the job. Not being paid for this time means those who care don’t get paid for a full day’s work.

It is also important for councils commissioning care work to be absolutely clear with those they contract with that they expect total compliance with the law. If a council is commissioning in a way which almost becomes complicit in a breach of the law, that is completely unacceptable. On the other hand, NHS Wiltshire has commissioned an “outcomes based continuing healthcare service” designed to improve quality, reduce cost and link up with social care – but which completely restricts patient choice. The “Help to Live at Home”  service has been commissioned jointly with Wiltshire Council. Contracts for the £23m service. The provider a patient receives will depend on where in the county they live. All health and social care services will be delivered by that provider and payment will depend on achieving a set of agreed outcomes.

There is a big difference between “care workers” and “unpaid carers”. A phenomenon worth keeping an eye on is that of “family caregiving” which has been on an upward trend in various jurisdictions, in part due to the economic recession. Some families lack the financial capabilities to pay professional caregivers. In fact, a huge group of carers comprise the “unsalaried family caregivers”. Family caregivers of people with dementia, often called the “invisible second patients”, are critical for people living with dementia. The effects of being a family caregiver, can be both positive and negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Indeed, it is mooted that comprehensive care of a person with dementia can include building a partnership between all health professionals and family caregivers. Many family caregivers of people with dementia might also employed, of whom many have reported that they missed work; a proportion may have even that turned down promotion opportunities or given up work to attend to caregiving responsibilities. There is furthermore no doubt that the benefit system is confusing, and it had been hoped that universal credit would be a method of simplying that. If you care for someone with dementia, you are normally advised to check that you are both getting all the benefits and tax credits you are entitled to. For example, you may be able to claim Personal Independence Payment or Attendance Allowance for the person with dementia, and Carer’s Allowance for the carer. You, or the person you look after, may be entitled to a discount on your council tax. Again, the situation can be complicated, and many people get simply put off from applying for the benefits for which they could be entitled due to sheer complexity and/or lack of guidance.

So, how will we eventually know when carers are being looked after? We will hear that carers of people with dementia are confident that their own health and wellbeing needs and requirements are recognised and supported, so that no carer feels alone, and are given regular breaks. This is in keeping with how local and national guidance for working time should be implemented anyway. Carers of people with dementia are also recognised as essential partners in care, assuming an approach which could be best called “coproduction”. Furthermore, carers of people with dementia would also have access to expertise in dementia care for information, advice, support and co-ordination of care. The “Dementia Action Alliance” has been the coming together of over 800 organisations to deliver the National Dementia Declaration; a common set of seven outcomes informed by people with dementia and their family carers. The Declaration provides an ambitious and achievable vision of how people with dementia and their families can be supported by society to live well with the condition

It would be incredibly valuable to have carers have a voice on CCGs and health and wellbeing boards, especially since commissioners are supposed to be promoting wellbeing pursuant to the Care Bill currently being discussed in the House of Commons and the House of Lords. The demands of caring for someone with dementia are great and many carers say they feel  totally unsupported. How to include unpaid care workers in this commissioning  debate is undoubtedly a difficult issue, but one which simply cannot be ultimately parked for convenience.

“Big Dementia” may not provide all of the answer, unless care is combined with cure.

Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing

The publication date is 17 January 2014, i.e. next week.

Thank to Charmaine Hardy (@charbhardy), a very important #dementiachallenger, for kind permission for me to use the picture of her poppy on the front cover of my book.

From the book:

“There are approximately 800,000 people with dementia in the United Kingdom, costing the economy £23bn a year. By 2040, the number of people affected is expected to double – and the costs are likely to treble.

This unique guide provides a much needed overview of dementia care. With a strong focus on the importance of patients and families, it explores the multifaceted meaning behind patient wellbeing and its vital significance in the context of national policy.

Adopting a positive, evidence-based approach, the book dispels the bleak outlook on dementia management. Its person-centred ideology considers fundamental areas such as independence, leisure and other activities, and end-of-life care – integrating the NICE quality standard where relevant. It also places great emphasis on patient environment including practical home and ward design, the importance of gardens, and sensory considerations.

All public and health care professionals will be stimulated by Rahman’s outstanding assimilation of theory and practice. Patients, their families and friends will also find much for inspiration and practical assistance.”


  • CPD accredited: helping you to achieve your points effectively for revalidation
  • An evidence-based, thought-provoking overview of  the ever-enlarging field of ‘living well with dementia’
  • Highly practical and unique – assimilating theory and patient –centered practice. Covers topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments successfully preparing readers for real-life caring
  • Fully referenced with case studies, tables and charts help to illustrate key points and ensure a strong foundation of knowledge is gained.

Summary of contents

Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Innovations i living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion


‘Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’
Professor John R Hodges, in his Foreword

‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’
Sally-Ann Marciano, in her Foreword

Bringing back memories to allow people to live better with dementia

There’s been a lot of snobbery about some therapies to improve wellbeing in dementia. This snobbery I think comes in part from the idea held by some, particularly non-molecular biologists, that just because it doesn’t involve a PCR gel or test tubes, research can’t be any good.

But I’ve never been failed to be struck about how actual persons with dementia have clearly been described substantial benefit in their quality of life, with not a Big Pharma product in site.

In a  2009 study from the University of California, the human brain was imaged while people listened to music. That study found specific brain regions linked to autobiographical memories and emotions are activated by familiar music. The UC Davis study titled, “The Neural Architecture of Music-Evoked Autobiographical Memories,” was published in the journal Cerebral Cortex. That particular finding may help to explain why music can elicit strong responses from people with Alzheimer’s disease. The distributed neuronal network that the music activated is located in the medial prefrontal cortex region—right behind the forehead—and happens to be one of the last areas of the brain to atrophy over the course of Alzheimer’s disease.

 In a 2011 study, on a completely different continent, Finnish researchers used a groundbreaking method that allowed them to study how the brain processes different aspects of music, such as rhythm, tonality and timbre (sound colour) in a realistic listening situation. Their study was published in the journal NeuroImage. The researchers discovered that listening to music activates wide networks in the brain, including areas responsible for motor actions, emotions, and creativity. Their method of mapping revealed complex dynamics of brain networks and the way music affects us. For this study participants were scanned with functional Magnetic Resonance Imaging (fMRI) while listening to a stimulus with a rich musical structure, a modern Argentinian tango.

Taken together, these findings suggest as if familiar music serves as a soundtrack for a mental movie that starts playing in our head. It calls back memories of a particular person or place, and you might all of a sudden see that person’s face in your mind’s eye. This might explain the phenomenon that some carers have noticed – that some people with dementia can start smiling when they hear a piece of music of particular significance to him or her.

And indeed the issue about how music can bring back memories is certainly alive and well.

See, for example, this recent tweet:


Harry O’Donnell, a former Clyde welder and waterpolo player, has a type of dementia known as “vascular dementia”. After a period of illness, Harry and his wife Margaret were struggling to connect with each other. “Playlist for Life” worked with them both to identify a playlist that would evoke memories from Harry’s life. Margaret began sharing it with him on an iPod at every visit.

“Playlist for Life” encourages families and caregivers to create for their loved one – at home or in residential care – a playlist of uniquely meaningful music delivered on an iPod whenever needed.

(The original source of this video is here).

There is accumulating evidence that if people with dementia are offered frequent access to the music in which their past experience and memories are embedded, it can improve their present mood, their awareness, their ability to understand and think and their sense of identity and independence. This strikingly is no matter how far their dementia has progressed. It might be also that music that is merely familiar in a general way, although pleasurable, is not likely to be so effective.

This is an example of a wider body of work known as “reminiscence therapy”. Reminiscence therapy stimulates memory and conversation through the use of prompts –images, sounds, textures, tastes, and objects that spark the senses. Research shows that it can improves mood and quality of life. Reminiscence therapy typically uses prompts, such as photos, music or familiar items from the past, to encourage the person to talk about earlier memories.  Since the late 1990s, partially controlled studies have shown that this treatment has a small but significant positive effect on mood, self-care, the ability to communicate and well-being. In some cases, this therapy improves intellectual functioning.

Steve Rotheram MP referred to “The House of Memories” in the parliamentary debate on dementia care and services in Parliament this Tuesday:

“I thank the Minister for giving way. He is absolutely right about the individual care package that somebody who, unfortunately, has dementia or Alzheimer’s gets. Thankfully, long gone are the days when somebody was given a couple of tablets in the hope that that might somehow affect their condition. Is he aware of the House of Memories project in Liverpool? Is he also aware that there is an event that I am hosting here on 17 June that Members of this House are welcome to attend?”

The “House of Memories” programme demonstrates how a museum (or by association a library, arts centre, or theatre) can provide the health and social care sector with practical skills and knowledge to facilitate access to an untapped cultural resources; often within their locality. It is centered on the fantastic objects, archives and stories at the Museum of Liverpool and is delivered in partnership with a training provider, AFTA Thought. The programme provides social care staff, in domicile and residential settings, with the skills and resources they need to inform their practice and support people living with dementia.

This powerful initiative aims to raise awareness of the condition, and enable participating professional health services, carers and families to help those directly affected to live well with dementia.  Indeed “House of Memories” has had a profound impact in relation to the ‘culture of care’ across the three regions, which can be directly attributed to the strong empathic qualities and personal resonance inherent in the programme’s content, design and delivery. The evaluation has revealed a demonstrable shift in participants’ cognitive and emotional understanding of dementia and its implications for those directly affected and carers alike.

Their training programme is designed to be easy to use and informative, acknowledging the central role the carer can play. They can help unlock the memory that is waiting to be shared, and provide a stimulating and rewarding experience for the person living with dementia. The programme provides participants (care workers, dementia champions, home care workers, agency support workers) with a variety of accessible practical experiences to introduce basic knowledge about the various forms of dementia, and to introduce memory activity resources linked to the museum experience, which can also be used within care settings.

To extend the learning beyond the initial training experience, participants are also equipped with resources to take back into settings. These include a ‘memory box’, a ‘suitcase of memories’, and a ‘memory toolkit’.

The power of memories in general life is undeniable. “Nothing is ever really lost to us as long as we remember it”, as L.M. Montgomery said in “The Story Girl”.

Thanks to @TommyNTour [Thomas Whitelaw] for sharing “Playlist for life”.

Could personal budgets give better choice and control over cure or care for dementia?

“But in the final months of my mum’s life last year, our family saw both the best of the NHS and things that need to change – like a microcosm of the national strategic challenge. We saw fantastic GP support, great specialist cancer services and unbelievably supportive hospice care. We also saw insufficient community support (not enough district nursing and too few hours of home support via continuing health care). But this was not just an issue of insufficient resources in the wrong places, there were also problems related to a lack of shared decision making. My mum felt too powerless in the face of decisions made by systems that professionals felt they had to go along with and managers enacted.”

“Personal Health Budgets and the left – less heat more light please”

This article is an excellent overview of personal health budgets by Martin Routledge.

Currently in England, according to the Government, more than 15 million people have a long term condition – a health problem that can’t be cured but can be controlled by medication or other therapies. This figure is set to increase over the next 10 years, particularly those people with 3 or more conditions at once. Examples of long term conditions include high blood pressure, depression, and arthritis. Of course, a big one is dementia, an “umbrella term” which covers hundreds of different conditions. There are 800,000 people in the United Kingdom who are thought to have one of the dementias. However, a thrust of national policy has been directed at trying to remedy the diagnosis rate which had been perceived as poor (from around 40%).

The Mental Health Foundation back in 2009 had publicly set out a wish that there would be a high level of satisfaction among people living with dementia and their carers with planning and arranging the ongoing support they receive via the different forms of self-directed support, and that specific examples and stories of real experiences, both positive and negative, in the use of the different forms of self-directed support will have been shared. Indeed, various stories have been fed into the media at various points in the intervening years.

People, however, tend to underestimate the extent to which GPs cannot treat underlying conditions.

For example, a GP faced with a headache, the most common neurological presentation in primary care, might decide to treat it symptomatically, except where otherwise indicated.

A GP faced with an individual which is asthmatic may not have a clear idea about the causes of shortness of breath and wheeziness, but might reach for his or her prescription pad to open up the airways with a ‘bronchodilator’ such as salbutamol.

However, this option not only does not work effectively for memory problems in early Alzheimer’s disease for many (although the cholinesterase inhibitors might have some success in early diffuse Lewy Body’s Disease). It is also very relatively expensive for the NHS compared to other more efficacious interventions, arguably.  In September 2013, it was reported that treatment of mild cognitive impairment with members of a particular class of medications, called “acetylcholinesterase inhibitors” was ‘not associated with any benefit’ and instead carried with them an increased risk of side effects, according to a new analysis. The “meta-analysis” – published in the Canadian Medical Association Journal – looked at eight studies using donepezil, rivastigmine, galantamine and memantine in mild cognitive impairment.

These experts argued that the findings raised questions over the Government’s drive for earlier diagnosis of dementia, but the issue is that medications may not be the only fruit for a person with dementia in the future. One aspect of ‘liberalising the NHS’, a major Coalition drive embodied in the Health and Social Care Act (2012), is that clinical commissioning groups can ‘shop around’ for whatever contracts they wish, with the default option being competitive tendering through the Regulations published for section 75.  When a person receives a timely diagnosis for dementia, it’s possible that a “personal health budget” might be open to that person with dementia in future.

A personal budget describes the amount of money that a council decides to spend in order to meet the needs of an individual eligible for publicly funded social care. It can be taken by the eligible person as a managed option by the council or third party, as a direct (cash) payment or as a combination of these options. At their simplest level, personal budgets involve a discussion with the service user/carer about how much money has been allocated to meet their assessed care needs, how they would like to spend this allocation and recording these views in the care plan. Personal budgets differ from personal health budgets, and from individualised budgets, and you can read an overview of them here.

For some, the debate about ‘personal health budgets’ is not simply an operational matter. They are symbolic of two competing political philosophies and ideologies. A socialist system involves solidarity, cooperation and equality (not as such “equality of provider power” such as the somewhat neoliberal NHS vs ‘any qualified provider’ debate). A neoliberal one, encouraging individualised budgets, views the market in the same way that Hayek and economists from the Austrian school view the economy: as one giant information system where prices are THE metric of how much something is worth. In contrast, the “national tariff” is the health version of interest rates, artificially set by the State. Strikingly, cross-party support is lent in the implementation of this policy plank, largely without a large and frank discussion with members of the general public at election time.

A major barrier to having a coherent conversation about this is that the major protagonists promoting personal budgets tend to have a vested interest in some sort for promoting them. That is of course not to argue that they should be muzzled from contributing to the debate. But it’s quite hard to deny that personal health budgets not offer potentially more choice and control for a person with dementia (possibly with a carer as proxy), unless of course there’s “no money left” as Liam Byrne MP might put it.

With the introduction of ‘whole person care’ as Labour know it, or ‘integrated care’ as the Conservatives put it, it is likely that policy will move towards a voluntary roll-out of a system where health and social care budgets come under one unified budget. No political party wishes to be seen to compromise the founding principle of the NHS as ‘comprehensive, universal and free-at-the-point-of-need’ (it is not as such ‘free’, in that health is currently funded out of taxation), but increasingly more defined groups are being offered personal budgets. Personal health budgets could lead to a change of emphasis from expensive drugs which in the most part have little effect, say to relatively inexpensive purchases which could have massive effect to somebody’s wellbeing or quality of life. Critics argue that, by introducing a component of ‘top up payments’, and with the blurring of boundaries between health and social care with very different existant ways of doing things, that ‘whole person care’ or ‘integrated care’ could be a vehicle for delivering real-time cuts in what should be available anyway.

On Wednesday 9 October 2013, Earl Howe, Lord Hunt and Lord Warner didn’t appear to have any issue about a duty to promote wellbeing in the Care Bill, though they differ somewhat on who should promote that particular duty. This is recorded faithfully in Hansard.

Wellbeing is certainly not a policy plank which looks like disappearing in the near future. Norman Lamb, Minister for State for Care Services, explicitly referred to the promotion of wellbeing in dementia in the ‘adjournment debate’ yesterday evening:

“There is also an amendment to the Care Bill which will require that commissioning takes into account an individual’s well-being. Councils cannot commission on the basis of 15 minutes of care when important care work needs to be undertaken. They will not meet their obligation under the Care Bill if they are doing it in that.”

The broad scope of the G8 summit was emphasised by Lamb:

“The declaration and communiqué announced at the summit set out a clear commitment to working more closely together on a range of measures to improve early diagnosis, living well with dementia, and research.”

And strikingly wellbeing has not been excluded from the dementia strategy strategy at all.

This is in contradiction to what might have appeared from the peri-Summit public discussions which were led by researchers with particularly areas in neuroscience, much of which is funded by industry.

Norman Lamb commented that:

“Since 2009-10, Government-funded dementia research in England has almost doubled, from £28.2 million to £52.2 million in 2012-13. Over the same period, funding by the charitable sector has increased, from £4.2 million to £6.8 million in the case of Alzheimer’s Research UK and from £2 million to £5.3 million in the case of the Alzheimer’s Society. In July 2012, a call for research proposals received a large number of applications, the quality of which exceeded expectations. Six projects, worth a combined £20 million, will look at areas including: living well with dementia; dementia-associated visual impairment; understanding community aspects of dementia; and promoting independence and managing agitation in people with dementia.”

In quite a direct way, the issue of ‘choice and control’ offered by personal health budgets needs to be offered from parallel ‘transparency and disclosure’, in the form of valid consent, from health professionals with persons with dementia in discussing medications. With so many in power and/or influence clearly trumping up the benefits of cholinesterase inhibitors, with complex and costly Pharma-funded projects looking at whether any of these drugs have a significant effect on parts of the brain and so forth, both persons and patients with dementia need to have a clear and accurate account of the risks and benefits of drugs from medical professionals who are regulated to give such an account. This is only fair if psychological (and non-pharmacological) treatments are to be subject to such scrutiny particularly by the popular press.

The personal health budgets have particular needs, and they are obvious to those with medical knowledge of these conditions. Quite often there might be a psychological reaction of denial about the condition and needs, associated the stigma and personal fear about ‘having’ dementia; but this can be coupled with a lack of insight into the manifestations of dementia, such as the insidious behavioural and personality changes which can occur early on in the behavioural variant of frontotemporal dementia. There might also fluctuating levels of need on a day to day basis; like all of us, people with dementia have ‘good days and bad days’, but some subtypes of dementia may have particularly fluctuating time courses (such as diffuse Lewy Body Dementia). Apart from the very small number of cases of reversible or potentially treatable presentations which appear like dementia, dementia is a degenerative condition and so abilities and needs change over time. This can of course be hard to predict for anyone; the person, patient, friend, family member, carer or professional.

So having laid out the general direction of travel of ‘personal budgets’, it’s clearly important to consider the particular challenges which lie ahead. In the Alzheimer’s Society document, “Getting personal? Making personal budgets work for people with dementia” from November 2011, a survey for “Support. Stay. Save.” (2011) is described. This survey was conducted in late 2010, and comprised people with dementia and carers across England, Wales and Northern Ireland. In total there were 1,432 respondents. The survey asked whether the person with dementia is using a direct payment or personal budget to buy social care services. 204 respondents said that they were using a personal budget or direct payment to purchase services and care. In total 878 respondents had been assessed and were receiving social services support, meaning that 23% of eligible respondents were using a personal budget or direct payment arrangement. Younger people with dementia and their carers appeared more likely to have been offered, and be using, direct payments or personal budgets than older people with dementia.

This is intriguing itself because the neurology of early onset dementia. Two particular diagnostic criteria are diffuse Lewy Body dementia which tends to have a ‘fluctuating’ time course in cognition to begin with, and the frontotemporal dementias where memory for events or facts (“episodic memory”) can be relatively unimpaired until the later stages. Clearly, the needs of such individuals with dementia will be different from those who have the early onset of Alzheimer’s disease, where episodic memory is more of an issue. Such differences will clearly have an effect on the types of needs of such individuals, but it can be argued that the patient himself or herself (or a proxy) will be in a better position to know what those needs might be. A person with overt problems in spatial memory, memory for where you are, might wish to have a focus on better signage in his or her own environment for example, which might be a useful non-pharmacological intervention. Such a person might prefer a telephone with pictures of closest friends and family to remind him or her of which pre-programmed functional buttons. Such a small disruptive change could potentially make a huge difference to someone’s quality of life.

As the dementias progress, nonetheless, it could be that persons with dementia benefit from assistive technologies to allow them to live independently at home wherever possible. This is of course a rather liberal approach. It is a stated aim of the current Coalition government that they want to help people to manage their own health condition as much as possible. Telehealth and telecare services are a useful way of doing this, it is argued. According to the Government,  at least 3 million people with long term conditions could benefit from using telehealth and telecare. Along with the telehealth and telecare industry, they are using the 3millionlives campaign to encourage greater use of remote monitoring information and communication technology in health and social care. It is vehemently denied by the Labour Party that ‘whole person care’ would be amalgamated with ‘universal credit’, forging together the benefits and budget narratives. Apart from anything else, the implementation of universal credit under Iain Duncan-Smith has been reported as a total disaster. But there is a precedent from the Australian jurisdiction of the bringing together of the two narratives, as described by Liam Byrne and Jenny Macklin in the Guardian in September 2013. In this jurisdiction, adapting to disability can mean that your benefit award is in fact LOWER. If the two systems merged here – and this is incredibly unlikely at the moment – a person with disability and dementia in a worst case scenario could find that what they gain in the personal budget hand is being robbed to pay for the benefits hand. Interestingly, in the Australian jurisdiction, personal health budgets have an equivalent called “consumer directed care”, which is perhaps a more accurate to view the emerging situation?

There are of course issues about the changing capacity of a person with dementia as the condition progresses, and this has implications for the medical ethics issues of autonomy, consent, ‘best interests’, beneficience and non-maleficence inter alia. Working through carers can be seen a good enough proxy for working directly with the person with dementia, and of course a major policy issue is a clear need to avoid financial abuse, fraud and discrimination which can be unlawful and/or criminal under English law. However this in itself is not so simple. A person with dementia living with dementia, and his or her carer(s) should not necessarily be regarded as a ‘family unit’. Furthermore, caring professional services – both general and specialist, and health and social care – may not be signed up culturally to full integration, involving sharing of information. For example, we are only just beginning to see a situation where some care homes are at first presentation investigating the medical needs of some persons with dementia in viewing their social care (and not all physicians are fluent in asking about social care issues.) It is possible that #NHSChangeDay could bring about a change in culture, where at least NHS professionals bother asking a person with dementia about his perception and self-awareness of quality of life. This is indeed my own personal pledge for staff in the NHS for #NHSChangeDay for 2014.

I, like other stakeholders such as persons with dementia, can appreciate that the ground is shifting. I can also sense a change in direction in weather from a world where people have put all their eggs in the Pharma and biological neuroscientific basket. Of course improved symptomatic therapies, and possibly a cure, one day would be a great asset to the personal armour in the ‘war against dementia’. Of course, if this battle is won, the war to ensure that the NHS is able to provide this universally and free-at-the-point-of-need is THE war to be won, whatever the direction of ‘personal health budgets’. But I feel that the direction of personal health budgets has somewhat a degree of inevitability about it, in this jurisdiction anyway.

Thanks to @KateSwaffer for help this morning too.

#NHSChangeDay 2014: an opportunity for a distributed leadership to drive change to promote quality of life for people with dementia

Research from McKinsey’s and Company recently argued in a document entitled “What it takes to make integrated care work” that integrated care can be implemented in virtually any health system. However,
three elements are necessary to ensure success.

They are: a clear focus on specific segments/diseases, an emphasis on multidisciplinary care, and key support systems including clinical leadership and information sharing.

NHS Change Day 2013 was the biggest day of collective action for improvement in the history of the NHS. A countrywide event in England, NHS Change Day was a grassroots initiative devised and driven by a small group of emerging clinicians and improvement leaders. Their idea was to create a mass movement of National Health Service (NHS) staff demonstrating the difference they can make by one simple act, proving that large-scale improvement is possible.

You can read more about the NHS Change Day here.

NHS Change Day created a sense of urgency by focusing on a single day of collective action. In many cases Change Day provided the necessary prompt to galvanise and amplify activity that was already planned.

The story in fact began in 2012 when a conversation began on Twitter betweena GP and healthcare improvement thought leader. GP Dr Stuart Sutton had just attended Helen Bevan’s talk on “Building Contagious Commitment to Change” as part of the learning programme run for Darzi Fellows by the King’s Fund. Helen had worked for years to apply social movement principles to improving health care. Trained in community organising methods, Helen encouraged others in the NHS to learn from leaders of great social movements, people who had few resources, no hierarchical and positional power, but who delivered results by building power through collective action.

Pledges have come from many and different areas of health and social care (see “the Wall”).

My pledge is here.

Medications are not the only fruit.

There is actually something very clever happening here with NHS Change Day – and could be a big deal for how the NHS and other caring establishments consider how to care in dementia.

Distributed leadership highlights leadership as an emergent property of a group or network of interacting individuals. These individuals might include academics, carers, people with dementia, members of the public, innovators/passionate people in the NHS, private companies, community interest groups, corporates, social enterprises, and so forth. They do include medical thought leaders, experienced in the dementias and ethics, too such as Dr Peter Gordon (@PeterDLROW). This contrasts with leadership as a phenomenon which arises from the individual.

Also, contrasted with numerical or additive action (which is the aggregated effect of a number of individuals contributing their initiative and expertise in different ways to a group or organisation), concertive action is about the additional dynamic which is the product of group activity. Put simply, “the whole is greater than the sum of its constituent parts”. The idea of a power network having massive collective action is an altogether different way of doing things, compared to leaders in large charities or government having a lot of powerful and influence.

A distributed leadership suggests openness of the boundaries of leadership. This means that it is predisposed to widen the conventional net of leaders.

Furthermore, distributed leadership entails the view that varieties of expertise are distributed across the many, not the few.

There’s also an interesting narrative about ‘ties’, which is briefly touched upon in the de-briefing from last year’s #NHSChangeDay.

Weak ties networks

NHS Change Day created what one member of the core team called ‘thousands upon thousands of weak ties at the operational level.’ Quite simply – who knows who’ll you be speaking to on Twitter?

It could be Prof Burns, the national clinical lead for dementia (@ABurns1907).

Our job is to put in place a platform and tools where we do nothing, but which enables other people to do it for themselves. That will enable change that we won’t even know is happening. We will provoke conversations and relationships between different groups of people in different parts of the NHS that will make lots of little changes that will build up to a big change.” (Joe McCrea).

My pledge for #NHSChangeDay explicitly asks people in health and social care to ask a person living with dementia – and/or carers – what their beliefs, concerns and expectations about living with dementia might be. Advocates for personal experiences of current living with dementia themselves must be a crucial part of that experience (for example Norman McNamara [@NormanMcNamara] and Kate Swaffer [@KateSwaffer]), as well as people who’ve had direct experience of the highs and lows of caring for someone with one of the dementias (such as the outstanding Beth Britton [@BethyB1886], Sally Marciano, Kim Pennock or Thomas Whitelaw [@TommynTour]). Outside medicine, nursing specialists clearly will hold the magic key (people like @lucyjmarsters).  Leaders such as Lee [@dragonmisery] prioritise choice and control for carers by the provision of accurate, helpful and accessible information. I cannot express how much their wisdom far surpasses the knowledge of some so-called dementia ‘experts’ I worked with about a decade ago.

Gill Phillips (@WhoseShoes) knows exactly what I mean. Her innovation “Whose Shoes” emphasises the identity of a person, not the name of any diagnosis.

It’s not particularly that I wish ‘professionals’ to “take a back seat”, but that I feel that they have a different area of expertise. For example, it is not unheard of for clinicians helping big dementia charities to report a long list of potential conflicts of interest of funding from Big Pharma in publishing papers on dementia, while stating correctly they have no conflicts of interest for those large dementia charities. Indeed, in the world of evidence based medicine, very few medications which have been ‘recommended’ for Alzheimer’s disease, the most prevalent form of dementia globally, have been proven to have had a significant beneficial effect on quality of life or wellbeing.

To minimise any one particular group of stakeholders having an undue influence on dementia policy, it might be helpful to mitigate the risk by recognising other leaders from different groups. This is where person, patient and carer engagement in the dementias might be especially critical.

I am therefore mindful of a sense of “urgency”, akin the urgency of NHS Change Day. I don’t happen to be one of those people who thinks dementia is ‘solved’ by a medical Doctor reaching for his prescription pad, although some of the modest or good effects on memory and attention in some individuals with dementia are clearly to be welcomed.

This means a change in culture from the medical mindset to a more person-centred focus of nursing and social care, where there is of course a place for drugs. I do not dismiss the impact of pharmacological agents in dementia, having published myself a paper on methylphenidate and paroxetine in frontal dementia in Nature Neuropsychopharmacology and Psychopharmacology respectively. To arrive at this new culture of whole person or integrated care, it will be necessary to ‘unfreeze’ from the medical mindset, applying the seminal work of Kurt Lewin from last century.

The popularity of the pledge itself can be measured by the number of ‘likes’, but I suppose a more enduring legacy is whether for example doctors or nurses routinely ask about the person’s beliefs, concerns and expectations about wellbeing in a routine history. It’s hard to know whether this battle will have been won, until a special box for wellbeing starts perhaps appearing on clinical proforma sheets in hospitals or care homes.

I asked a Consultant in Department for Medicine for the Elderly in an English hospital whether my pledge might catch on. He advised sympathetically that he has ‘enough trouble’ getting his juniors to do an accurate history and examination in admitting patients in his hospital let alone asking about wellbeing which is so clearly relevant to someone’s hospital care. He then reminded me of how he had been asked to review a patient with dementia at 5 am the other week, and the night nurse had forgotten to turn off a bright lamp dangling down on her face while that patient was attempting to sleep.

I am particularly mindful of the difficulties with the term ‘living well’. For example, there are some individuals with extremely advanced dementia whose quality of life is observed as very poor. I think those involved in caring in any capacity still aspire that they can be somehow contented. I suppose that I am more concerned about persons in the earlier stages of dementia, although there is in fact a chapter in my book entitled, “Maintaining wellbeing in end-of-life care for living well with dementia.”

I have started a special Twitter account (@Dementia_Change) to discuss my pledge (a raw number of followers might serve as a useful metric, as well as the number of “likes” for the actual pledge.)

Many thanks to the organisers of #NHSChangeDay. I hope it receives worldwide attention as it did last year, as it is an outstanding initiative.

Not just medicalisation, but Alzheimerisation?

I asked some practising medics, including GPs, neurologists, and obstetricians, about the following case vignette. I had tried to eliminate mentions of the word ‘dementia’. The original vignette was published in an article in the Guardian this week, under the title, “My 70-year-old husband has turned aggressive – I fear he has dementia”.

I enjoy his company: he is charming, intelligent and considerate. He has always had periods when he would become moody and unpleasant to me, but these are few and far between.

He is a bit forgetful, but he has had some bizarre memory lapses; he becomes aggressive if I mention it, sometimes says odd things, and has become hypersensitive to criticism. Recently, my husband lost his temper with me after what seemed to me a trivial matter, although it obviously wasn’t to him. His reaction stunned me. He started to scream at the top of his voice, then picked up the grill tray of the cooker. I thought he was going to hit me with it, but he turned and bashed the cooker repeatedly, leaving dents and marks. He then screamed abuse at me. He has not spoken to me since, but when he speaks to our boys on the telephone, he sounds cheerful and normal.

I have never seen him lose control so completely before, and worry that next time he may go for me. I don’t feel I can talk to him about this because I know that he would lose his temper again, and I dare not mention that I worry about his health. I feel the only thing I can do is to leave him. But I feel heartbroken and baffled that such a happy relationship could end like this and don’t know how to broach the subject of separation. What should I do?

The article itself went to consider how the individual might seek confidential advice from a charity such as the Alzheimer’s Society. The background to this is that, previously, the Alzheimer’s Society, a large charity, in partnership with the Department of Health launched a national campaign to address the ‘diagnosis gap’, of individuals not receiving a clinical diagnosis of dementia. With a series of videos and huge coverage, including the G8 dementia summit which was publicised heavily in the national media, a new map of diagnosis rates nationally has been launched.

Alzheimer’s disease is the main presenting form of dementia globally, although there are in total over hundred types of dementia. Prof John Hodges, who has written one of the Forewords to my book “Living well with dementia”, has reviewed the medicine of the dementias in his chapter for the Oxford Textbook of Medicine (available here).

It is generally considered that memory problems constitute the main picture of the clinical presentation of “typical” Alzheimer’s disease. In contrast, in a common dementia in the slightly younger age group, called frontotemporal dementia, the dominant presentation can be one of an insidious personality or behaviour change. Depression can easily be confused with dementia, in that depression can cause memory problems and changes in personality.

There are further issues at play. Because of artefacts in their training, a neurologist is more likely to be asked to diagnose a dementia, and a psychiatrist a depression. A GP seeking a specialist opinion might prefer locally to refer to a psychiatrist rather than a neurologist in their locality, as the waiting time is shorter.

And the G8 dementia summit has caused a lot of problematic issues to resurface. The Summit itself spent much more time in discussing data sharing of genomic and drug trial information, with a view to developing personalised medicine, in other words treatment and cure, rather than in discussing the often inadequate resources for frontline care in specific jurisdictions including the UK. Rather than closing down the ‘cure vs care’ debate, the G8 summit has instead thrown the debate into the spotlight; see for example the separate useful contributions from Beth Britton and Prof Peter Whitehouse.

But the odd phenomenon is now emerging that not only has their being growing medicalisation of the dementias, with such a focus on diagnosis, treatment and cure, but the focus has been like a targeted missile strike; it is “Alzheimerisation”, meaning that even all possible dementia presentations all go down the final common diagnostic pathway of Alzheimer’s disease.

There is already an interesting pre-existant literation on “Alzheimerisation”. My friend in Adelaide, Kate Swaffer, has referred to the phenomenon on her popular and leading blog (blogpost here).

A critical path in producing the correct diagnosis and differential diagnosis is the age of the patient and spouse. I unhelpfully didn’t include this information.

The points raised by the Consultant Paediatrician by training were therefore generic points which could have helped, whatever the diagnosis was. He queried: Has he got or recently had physical illness? Is he anxious or depressed? He then suggested he would “triangulate views” with other family members, friends etc. This Paediatrician immediately latched onto the difficult ethical issue in this problem, stating: “Don’t provoke him with a direct approach but he needs help.” As a person of his status in the NHS, he then queried sensibly as to whether he had seen GP recently, with a view to elucidating a recent medical history. Intriguingly, the Paediatrician did not shut down non-dementia diagnoses. In fact, he never mentioned dementia once (but this to be expected as dementia is far less common presentation in child and adolescent medicine/psychiatry than old-age for example.)

Another clinician, actively involved in his Royal College (for Obstetrics and Gynaecology) for training and other issues, came straight to his point:

“The only diagnosis going through my mind is dementia. However still need to consider acute confusional state. Also maybe thyroid disorders, vitamin deficiency, drug or alcohol abuse or depression.”

Interestingly, the Consultant Neurologist did pick up on the dementia twang of the history, but was more concerned about what type of dementia it might be, given the observed differences between Alzheimer’s disease and frontotemporal dementia.

That Neurologist remarked:

“Hard to be specific given limited info, but given personality change I’d wonder about FTD, would want to know though about other things eg alcohol history or substance abuse, past psychiatric history, family history. Being vague but then the details are vague.”

But even there that neurologist in question did not shut down non-neurology diagnoses – neurologists on the whole do not do the “acute medical take” in the majority of hospitals – and produced a good range of medical/psychiatric alternatives.

In contrast, a General Practitioner was hugely concerned about the social/cultural dimension, and the overall ethical issues.

“Assuming it is the wife that is consulting me, I would:

Encourage her to contact the police, especially if there are further episodes of violence
Refer social services if children living in house, esp if witnessed episode (doesn’t sound like they are from your blurb)
Encourage her to move out, at least temporarily
Give her details of women’s refuge
Tell her to advise him to consult his GP as difficult to help medically otherwise.

Your description makes me think about neuropsychiatric problems rather than just adjustment/personality/relationship difficulties. I don’t know how likely it is that I would get that flavour from the wife. However, abrupt change in personality, saying odd things and bizarre memory lapses would be a concern.

If the husband consulted me, depending upon my assessment (which would certainly include consideration of drug and alcohol use and perceptual disturbances), I would be thinking about referral to psychiatry, not because I think a physical problem unlikely but because I suspect it might be quicker than neuro. However, I might seek advice from a neurologist.

As for 10 minute appointments, the first with the wife would over-run. The assessment of the husband might take place over 2-3 appointments, after which there would be a fair amount of time taken up with considering/arranging referrals.”

After having read the discussion in the Guardian article, and clearly with the benefit of knowing the age of the person and his spouse, that General Practitioner picked up further on the ethical issues:

“Having now read the article, the age puts one in mind of a narrower range of diagnoses, perhaps, and one would think of memory clinic referral. The suggestion that the GP should make a home visit as a way of bypassing the need for patient consent and cooperation is a little worrying. Clearly it is an option but would only be considered in very exceptional circumstances – and frankly then I would worry about the safety of the GP. Ethically it sounds even more dubious than setting up a screening system to bypass patient consent! I would personally rely on the husband coming to me.”

Another GP came up with broadly the same list of diagnoses to consider as the other clinicians who had suggested a list:

“If you are looking for a diagnosis, I would consider as differentials:

  • mental distress
  • alcohol
  • dementia
  • illegal drugs

some physical illness such as hyperthyroidism, temp lobe epilepsy. I would need to check out her story.”

Often, criticism has been made of General Practitioners in shutting down the dementia diagnosis, but the third General Practitioner I asked not only mooted the dementia diagnosis, but also queried whether it might be frontotemporal dementia:

“Sounds a bit too bizarre to be a simple mood disorder. I’d be thinking of something more organic, like a frontal lobe problem. Perhaps fronto-temporal dementia? Hard to separate the case from the fact that you have an interest in this, though Shibley – would I consider this if it was in my surgery?”

It is in fact arguably quite likely that a Psychiatrist Specialist Registrar or Consultant will wish to exclude temporal lobe epilepsy or an intermittent explosive disorder, as well as a dementia.

Psychology studies have shown that people tend to confirm their preconceived ideas and ignore contradictory information, a phenomenon known as “confirmation bias“.

Julie spotted this danger at once:

and its potential unintended consequences:

This bias is the tendency of people to favour information that confirms their beliefs or hypotheses. People display this bias when they gather or remember information selectively, or when they interpret it in a biased way. The effect is stronger for emotionally charged issues and for deeply entrenched beliefs. People also tend to interpret ambiguous evidence as supporting their existing position.

The prestigious journal, New England Journal of Medicine, considered this issue in an article.

To examine the role of confirmation bias in psychiatric diagnosis, researchers gave a case vignette to 75 psychiatrists (with an average duration of professional experience of six years) and 75 fourth-year medical students. Participants were asked to choose a preliminary diagnosis of depression or Alzheimer disease, and to recommend a treatment. The vignette was designed so that depression would seem the most appropriate diagnosis. Participants could then opt to view up to 12 items of narrative information; their “summary theses” were balanced between the two diagnoses, but the narratives overall favored the dementia diagnosis.

For the preliminary diagnosis, 97% of psychiatrists and 95% of students chose depression. 13% of psychiatrists and 25% of students chose to see more confirmatory than disconfirmatory items. In the end, 59% of psychiatrists and 64% of students reached the correct diagnosis of Alzheimer disease. Psychiatrists performing confirmatory searches were less experienced and more likely to make the wrong diagnosis. Participants were more likely to make the wrong final diagnosis if they chose to view six or fewer pieces of additional information. As one would intuitively expect, making the wrong diagnosis affected treatment decisions.

This study, with no patient examination and only two diagnostic possibilities, provided less time pressure to arrive at a diagnosis than in clinical practice. However, the findings reinforce the importance, in psychiatric education and in clinical practice, of considering evidence contrary to our initial impressions and avoiding premature closure.

The results from that study alone perhaps suggest that clinicians should search for disconfirmatory evidence and be aware of bias that might arise from patients’ past diagnoses and the opinions of referring clinicians.

The vignette does throw up a very troubling problem though. Medical charities promote their conditions for a slice of the funding pie. A clinician will have to keep his or her mind open, and even have to consider non-medical diagnoses (this is specifically examined in the clinical part of the higher postgraduate examination of physicians currently, “PACES” in the MRCP(UK) postgraduate examination for general medicine).

Bear in mind recipients of the age did not know the age of the people involved in the vignette, but the only non-medic I asked mooted the following:

Finally, if you phone up the helpline of a dementia charity, you may not necessarily be speaking with someone with a general medical qualification, and the best that that person can do is to encourage the caller to go for more tests for dementia. Individuals clearly have a right to a correct diagnosis, but it is often disregarded that the media and “non medical others” equally have a responsibility not to send people down blind alleys. If you do not adequately resource GPs or memory clinics, the drive to diagnose lots of dementia could lead to many false diagnoses, and, quite simply, be a massive disaster waiting to happen.


Mendel R et al. Confirmation bias: Why psychiatrists stick to wrong preliminary diagnoses. Psychol Med 2011 May 20; [e-pub ahead of print]. (

The ‘cure vs care’ debate: “Priorities for the future”, a conclusion by Prof Peter Whitehouse

Review: “The end of Alzheimer’s disease—From biochemical pharmacology to ecopsychosociology: A personal perspective.” in the journal “Biochemical pharmacology” to be published 2014.

His biography is as follows:

Prof. Peter J. Whitehouse, MD, PhD is Professor of Neurology as well as current or former Professor of Cognitive Science, Psychiatry, Neuroscience, Psychology, Nursing, Organizational Behavior, Bioethics and History. His is also a member of the faculty of the Fowler Center for Sustainable Value at the Weatherhead School of Management. He received his undergraduate degree from Brown University and MD-PhD (Psychology) from The Johns Hopkins University (with field work at Harvard and Boston Universities, followed by a Fellowship in Neuroscience and Psychiatry and a faculty appointment at Hopkins.

In 1986 he moved to Case Western Reserve University to develop the University Alzheimer Center, now a part of the University Neurological Institute at University Hospitals Case Medical Center. This center became one of the ten best funded in the world. He continued his own life-long learning with a Masters Degree in Bioethics and Fellowship in Organizational Behavior at Case

He is clinically active at University Hospitals of Cleveland in the Joseph Foley Elder Health Center caring for individuals with concerns about their cognitive abilities as they age. He is working to develop an integrative health practice focused on the healing power of storytelling. He envisioned and cofounded the Greenwall Foundation supported StoryBank, a regional resource for transdisciplinary analysis and utilization of narratives of illness and health that foster community well-being.

He is the author (with Danny George) of a provocative book entitled The Myth of Alzheimer’s: what you aren’t being told about today’s most dreaded diagnosis.

This is the conclusion entitled, “Priorities for the future”:

We must essentially reverse priorities for the treatment of AD. Care must be viewed as more important than cure rather than the current message from the Alzheimer’s Association and others that cure (ending ” Alzheimer’s”) is the answer. Even if effective drugs are developed, they might improve mortality (i.e. by keeping people out of nursing homes longer) and hence might not in the long term diminish the number of older people with cognitive impairment. If such drugs prolong life, they might actually increase health care costs and might even cause individuals to live longer with dementia rather than the hoped for goal of improving cognition but not affecting the age at which people die. Current drugs do not, and potential future drugs might not, improve quality of life. Evidence suggests psychosocial interventions, like educational and arts programs, do in fact have such a benefit [4,12]. Supportive and enriching information technology [8] may be more important than biotechnology. Providing home-like community based programs should be more of a priority. In fact in the future society should work to improve the quality of eldercare communities in general. A dementia-friendly community is likely to be more comfortable for elders in general, children and in fact all the residents. AD is a cultural lever for social change that is actually more important than even the enormous personal and social challenges age-related cognitive impairments themselves pose. Within the seeds of reconsidering the concept of AD lies the potential for deep reflection about the role of the brain in our lives, the processes of aging, the importance of science and also understanding its limitations, and the very nature of our individual human lives in community. Rethinking and revaluing so called AD can lead to social and economic benefits far beyond this unfortunate clinical label. Therein lies true hope in my view.

Concerns about the paired associates learning test for dementia

To begin to understand how a cathode-ray TV set works, I could remove one component called the “transistor”, and the picture disappears. It would be an incorrect conclusion to say that the purpose of that transistor is to produce the picture. However, I could argue correctly that the transistor was somehow part of the system required to produce the picture.

If I showed the transistor was particularly “hot” while the TV set was on, producing a picture, it might be reasonable for me to conclude the transistor was involved in producing the picture.

This is the sort of basic approach still used to work out what is going on in the brains and minds of people with Alzheimer’s disease, typical presentations of which might be memory problems. You can see whether removing parts of the brain in humans produces similar effects to the problems in thinking found in Alzheimer’s disease. Or alternatively, you could just try to look at the system of components in the brain which might be contributing to memory in brains working normally.

TV set

Whatever, it’s a puzzle. In this particular case, it’s a puzzle to solve correctly.

An innovation culture in the diagnosis of Alzheimer’s disease

David Cameron praised Cambridge Cognition’s work in developing new innovative tests for Alzheimer’s disease in the G8 summit held towards the end of last year.

There has been concern that some individuals with Alzheimer’s disease do not receive their diagnoses in a particularly fast way. A number of explanations for this have been offered, including medical personnel not being able to spot the symptoms of Alzheimer’s disease easily.

It is also helpful to understand what an “innovation” is. An innovation might be a product which enables you do something much more easily, and depends for its success popular uptake by the user. Strictly speaking, paper was an innovation too. However, the rise in cost of diagnosing Alzheimer’s disease, arguably, is an intriguing example of “Baumol’s cost disease“.

Individuals with Alzheimer’s disease have memory problems which are typically not thought to be qualitatively similar to those found in ageing elderly individuals. Often such people have real problems in navigating around environments. It is clearly a very laudable aim to have a bedside test which might be able to alert a physician to an underlying memory problem in Alzheimer’s disease.

The benefits and concerns, and my passing involvement

There are a number of important caveats here. Not all dementias are Alzheimer’s disease. There are in fact hundreds of dementias, some of which are reversible. Whatever test is used, the test should be sensitive enough to identify reliably a genuine thinking problem in Alzheimer’s disease, but should not be so ‘broad brush’ the test also misattributes memory problems, say found in the ‘mild cognitive impairment’ or even depression, to Alzheimer’s disease. Such mislabelling can perceivably cause distress, and cause people to be caught up in the medical system for further lengthy tests when they should not have been in the first place. On the other hand, it is of concern that the diagnosis might be missed in some people, and hence the drive from the Department of Health and the Alzheimer’s Society in “The Prime Minister’s Dementia Challenge”.

I wish Cambridge Cognition well, not least because I have worked with CANTAB whilst a graduate student at the University of Cambridge. In fact, some of my papers are cited in their bibliography. Their search facility is here.


The CANTABmobile “paired associates learning” test

To explain the “paired associates learning” test from first principles, and I’m not using actual screenshots, imagine me presenting you with a number of blank boxes dotted around the screen.

Fig 1

And I open each box in turn and reveal a shape to you. I can present the problem with a varying number of shapes.

Fig 3     Fig 2

After showing you all the shapes, I then present to you a shape and ask you to identify the box in which it was first presented.

Fig 4

Cambridge Cognition in welcoming the Draft National Plan to Address Alzheimer’s disease in my opinion set out entirely correctly the advantages of this computerised testing battery; including fast, not culturally biased, not heavily loading on language, norm-referenced, culturally unbiased, and easy-to-use.

The reasoning behind it being sensitive to early Alzheimer’s disease – but what about mild cognitive impairment?

To understand why the narrative for the test being so attractive in early Alzheimer’s disease, you have to understand that this test has been found to be sensitive to functions of particular brain areas. If you chop out bits of the brain near the front of the head (frontal cortex) or near the ear (temporal cortex), performance on this task is impaired, as Prof Adrian Owen showed when he was a post-doctoral fellow (paper here). With hindsight, perhaps Owen should have looked at the effects of other brain areas further back in the brain, such as the parietal cortex, which are also now thought to be important in memory for spatial cues.

A consistent finding has been loss of brain cells in the “entorhinal cortex”, in the temporal cortex, early in Alzheimer’s disease (see for example here). Therefore, that the paired associates learning test should identify memory problems in early Alzheimer’s disease immediately makes intuitive sense.

But the issues I feel are much more complicated, and I wish Cambridge Cognition well in clarifying them.

If it’s not Alzheimer’s disease, what else could be causing the memory problems?

One possibility is “mild cognitive impairment”. It is described, for example on the authoritative Mayo Clinic website, that:

“Mild cognitive impairment (MCI) is an intermediate stage between the expected cognitive decline of normal aging and the more serious decline of dementia. It can involve problems with memory, language, thinking and judgment that are greater than normal age-related changes. If you have mild cognitive impairment, you may be aware that your memory or mental function has “slipped.””

David Hart, Senior Business Development Manager of Cambridge Cognition, kindly sent Dr Peter Gordon the rationale for the use of the CANTAB task by Dr Andrew Blackwell, their Chief Scientific Officer (as produced on Peter’s blog here).

Cambridge Cognition concede that distinguishing between MCI and Alzheimer’s Disease “is difficult”, but this is a distinction that must be arrived at otherwise a test potentially will give “false positives” – but no test is perfection, and it basically is impossible to strive for perfection. What we all trying avoid is where a test for possible dementia itself is expensive followed by a further expensive investigation to show the original result was a false positive – or as the Express euphemistically called it recently, “Dementia diagnosis proved wrong by new super scanner”.  (It is important to state clearly here that no details are given how a diagnosis had been arrived at previously for Ros Davies.)

To give them credit, Cambridge Cognition cite the Chandler et al. (2008) paper, but the full citation of this is “Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association Volume 4, Issue 4, Supplement , Pages T551-T552, July 2008″ – i.e. it is a supplement of abstracts not full papers. This particular abstract can be viewed here.

It is hoped that this full study will have been published elsewhere, and if so Cambridge Cognition will need to update their website with the full paper. Notwithstanding this, the numbers of individuals in each group are disappointingly low: there are seventeen with putative MCI and twelve with putative Alzheimer’s disease.

Is this task actually sensitive and specific?

However, the discussion by Dr Andrew Blackwell and colleagues in his 2004 paper is useful. I have more than a passing interest in that paper as the main author on that paper was one of my PhD supervisors at Cambridge, Prof John Hodges. John has also kindly written one of my three Forewords for my book, “Living well with dementia” to be published on January 14th 2014.

Blackwell remarks correctly that this task has been used to distinguish between unipolar depression and Alzheimer’s disease in Rachel Swainson’s study. But is this enough? I looked to the previous Beats study in “geriatric depressive”, and there was nothing forthcoming there. How confident can one be that only early patients with Alzheimer’s disease, and not those severely depressed or with an underactive thyroid, will perform abnormally on the PAL? Personally, I’m not at all confident yet, despite the Swainson study, but these fears can easily be allayed with a sensitivity/specificity study of much higher power.

Blackwell is however correct in citing my study with Dr Andy Lee in that patients with semantic dementia and behavioural variant frontotemporal dementia are relatively unimpaired, though the clinical presentations of the frontotemporal dementias can be quite clearly different in the clinic from Alzheimer’s disease. Completing the double dissociation, I did find that the behavioural variant of frontotemporal dementia did present with rather specific risk-taking decision-making of its own.

But in the meantime the comparison with frontotemporal dementias is useful.


Nonetheless, this approach is being rolled out.

On 28 June 2013, the use of CANTABmobile was described as follows:

“The Guildford and Waverley Clinical Commissioning Group (CCG) is leading the use of an innovative new iPad-based memory assessment  system as part of a national push to decrease dementia diagnosis waiting times and streamline the referral process.   Accessed through NHS medical professionals, CANTABmobile enables GPs to test a patient’s episodic memory through an easy to use and administer 10-minute cognitive assessment.”

The CANTAB paired associates learning test is pictured under the heading “intuitive touchscreen interface”. if you go to “download information” on this page.

It was covered in the national media here: for example Victoria MacDonald’s report (this page provides a criticism of another report by Victoria MacDonald this time over Prof Brian Jarman’s proposed HSMR data by NHS Consultant, Dr Jacky Davis).

So what does this task test?

In understanding how the task works in reality, I found a paper where Prof Ed Bullmore and colleagues put individuals with Alzheimer’s disease and control subjects performing the task into a scanner really helpful.  Bullmore and colleagues frontloaded their discussion with the following comment:

“Independent of the level of difficulty, the majority of subjects in both groups activated a network of brain regions, including the anterior cingulate, lateral, and medial occipitoparietal and frontal cortices, during successful encoding and retrieval.”

This is interesting as it doesn’t point to the usual suspects of the narrative, i.e. the entorhinal cortex and other parts of temporal lobe. Even Andrew Blackwell had described how the damage to the entorhinal cortex might possibly account dor deficits on the paired associates task:

“The transentorhinal region is a complex transitional area located between the entorhinal region proper and the adjacent temporal isocortex. It has been suggested that damage to this site in early [Alzheimer’s disease] disrupts reciprocal connections with the hippocampal formation and that this disruption underlies deficits in episodic memory.”

But on reflection is this wholly a surprise? Ed Bullmore and colleagues from their results, also from Cambridge, discuss that the lateral parietal activations reported during episodic memory tasks are thought to reflect recognition processes and retrieval processing of spatial information. Medial parietal activity has been proposed to underlie imagery and retrieval success.

I don’t feel it’s altogether surprising given what is known about the build-up of pathology in Alzheimer’s disease, either. The authors of one study looking at this report that:

“[18F]FDDNP-PET signal was significantly higher across widespread cortical regions in subjects with poorer neuropsychological test performances. Strong correlations were seen in the entorhinal, orbitofrontal, and lateral temporal cortices, temporoparietal and perisylvian language areas, parietal association cortices, and much of the dorsolateral prefrontal cortex.”

But the Sahakian lab elsewhere did find something was up with the parts in “the hippocampus and associated structures”, i.e. the structures in the temporal lobe, in this task.

But that study was only comparing MCI with normal controls. It did not include patients with Alzheimer’s disease. This is relevant, if you happen to believe that MCI ‘predates’ Alzheimer’s disease, as the authors of that study clearly do:

“Later in the course of the transition from MCI to clinical Alzheimer’s disease, functioning of the MTL deteriorates further to an extent that such compensatory activity is no longer possible. The hyperactivity in early MCI might then represent a possible predictor or biomarker of the progression to Alzheimer’s disease.”

But in the real world this is far from clear.

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009). Drug companies have been trying hard to push the identification of “biomarkers”, possibly subtle psychological ‘deficits’, scan results or changes in substances in the fluid surrounding the brain (or cerebrospinal fluid). It is no accident that psychological testing and biomarkers were heavily promoted in David Cameron’s G8 dementia speech in Lancaster House at the end of last year.

In summary, I don’t think it can be taken as red that entorhinal cortex problems are causing the observed deficits in the CANTABmobile paired associates learning task.


Overall, my personal view is that the deficits on the CANTAB paired associates learning task are real in early Alzheimer’s disease, but possibly not for the reasons felt by some in their groups. Above all, I don’t care as such, as long as greater numbers of people benefit from a correct diagnosis of Alzhemer’s disease, but I do feel that the logic in their reasoning has gone a bit awry.

My academic viewpoint is utterly irrelevant actually, as above all I wish the whole of the medical profession well in their “war against dementia”.

I’d be the first to admit I’ve got it wrong. I am simply raising the issues in a constructive way that I hope is beneficial for the public interest.

But Dr Mitul Mehta, Reader in Neuroimaging at the IoP, does have his concerns.