The ‘I statements’ were not enough. Realistic dementia rights are needed now.


Of all the junkie platitudes, ‘keeping it real’ must be pretty high up. Mid Staffs and Winterbourne View were keeping it quite real for their service users too, all too sadly.

The history of ‘I statements’ is quite interesting.

In interpersonal communication, an I-statement is an assertion about the feelings, beliefs, values etc. of the person speaking, generally expressed as a sentence beginning with the word “I”. Thomas Gordon coined the term “I message” (the alternative to ‘I statement) in the 1960s while doing play therapy with children.

I-statements are often used with the intent to be assertive without putting the listener on the defensive. They are also used to take ownership for one’s feelings rather than implying that they are caused by another person.

The National Dementia Declaration, introduced a few years ago, is based on 7 I-Statements:

I have personal choice and control or influence over decisions about me.
I know that services are designed around me and my needs.
I have support that helps me live my life.
I have the knowledge and know-how to get what I need.
I live in an enabling and supportive environment where I feel valued and understood.
I have a sense of belonging and of being a valued part of family, community and civic life.
I know there is research going on which delivers a better life for me now and hope for the future.

If these ‘I statements’ were to have gathered momentum and achieved traction, my gut feeling is that they would have done so by now.

However, as with much in English dementia policy, the same messages are often re-branded and re-circulated in cycles of a few years. The point about well-set objectives is that they ought to have some meaning.

The November 1981 issue of Management Review contained a paper by George T. Doran called There’s a S.M.A.R.T. way to write management’s goals and objectives. It discussed the importance of objectives and the difficulty of setting them. Ideally speaking, each corporate, department, and section objective should be:

Specific – target a specific area for improvement.
Measurable – quantify or at least suggest an indicator of progress.
Assignable – specify who will do it.
Realistic – state what results can realistically be achieved, given available resources.
Time-related – specify when the result(s) can be achieved.

What is striking about the ‘I statements’ in dementia is that they mainly focus on care and support. There are somewhat surprising arbitrary exclusions, like in the domains of timely diagnosis and dying well/end of life. In contrast, the implementation of dementia friendly communities in England and Wales was meant to be much wider than the health and social care sector, i.e. empowering people to lead meaningful independent lives.

Reducing ‘what is important’ into a series of a few I statements would be bound as to be effective as the choice of the statements themselves. Human rights, whilst even more reductionist, can be applied to any setting, not just health and social care, and are indeed inalienable and universal.

The problem with the ethos of ‘I statements’ arguably is that rather than focusing on robust human rights which are in principle enforceable through the law (though important moral rights exist) they are a series of aspirational statements. This liberal approach is, nonetheless, more meaningful than a conservative approach where the statements would be more statements of current status.

The ‘I statements’ are also in keeping with a liberalising view of the market. One of the criticisms of the failure of service procurement in dementia is that there is inadequate ongoing assessment of performance of a contract. That is why service contracts in dementia must have realistic measurable outcomes and benefits against which the performance of providers, and commissioners, can be assessed.

There is no doubt, however, that rights are highly relevant to health and social care, such as the right to be with a primary carer on a hospital admission, or a right to food in keeping with your religious beliefs. It is highly relevant how and why these human rights have been embedded (or not) in the culture of the NHS snd social care. The ‘I statements’ are insufficient to meet this policy objective.

It is worth emphasising that this is much more than a turgid argument of policy. This goes to the heart of ‘what matters to you? why did this matter to you?’ approach currently being popularised in Scotland. And indeed other jurisdictions have made great progress in the embedding of human rights in life, through for example the PANEL and FREDA principles.

But the question remains – what rights are important to people living with dementia and their closest? And, more importantly, how do they feel that these rights can be achieved?

The success of the ‘dementia rights’ approach will, I feel, be reflective of the wider climate of the NHS and social care. The current Secretary of State has used regulation to attempt to drive up quality, which in part is a mitigation against risks. This, however, has not driven up quality consistently, and has led consistently instead into a diversion of scarce resources into regulation. However, an approach where people know their rights, and know how to use them to mitigate against risk in all walks of life including health and social care I feel could be useful.

This is why I think a social movement for ‘Dementia Rights’ is now much needed.

Dementia rights. When the world is not enough.

You will have seen an explosion of stuff on ‘dementia rights’, most probably. The hashtag #dementiarights has been extensively used with a lot of goodwill by many stakeholders in the narrative on dementia.

The campaigning hashtag #dementiarights is not owned by any one Big Charity. Looking at the great tweets using this hashtag you will see immediately why.

Having said that, I have absolutely no doubt there will be a territorial ‘grab’ for ‘Dementia Rights’. It is well known that ‘Dementia Friends’ is protected on the national trademark register across a number of different intellectual property classes including, strangely enough, “playing cards”. There is of course a fine line between legitimate protection of intellectual property and something else which can be diplomatically be described as ‘abuse of corporate power’.

Compared to the Dementia Friends campaign, delivered by the Alzheimer’s Society and Public Health England, to a cost approaching £10 million in total (though official costings are rather difficult to obtain), my Dementia Rights campaign literally costs nothing.

All the material has been written by me. I am dually trained in law, including human rights and intellectual property, and medicine, including dementia, so it was an honour and privilege to write the material.

Whilst there have been no sessions yet, there are two very able Dementia Rights champions who have expressed an interest about doing our information sessions. None of the material overlaps with Dementia Friends material. I know because I was a Dementia Friends Champion.

On the one hand, I really enjoyed the opportunity of explaining to the general public about dementia. National policy in 2009 came at a problem of stigma, prejudice and discrimination against dementia, which was in part attributable to ignorance about dementia. Raising basic awareness of dementia has been a joy for me.

But raising awareness of dementia is no replacement for high quality services, including that delivered by allied health professionals including clinical specialist nurses. As the NHS creaks away from a fragmented illness-fixing service, it will need to work constructively with social care to provide a national wellbeing-promoting service.

Dementia rarely travels alone. In the fervour of raising awareness of dementia, it must never be forgotten what the needs of the people with dementia are, and how they relate to carers’ needs. All people with dementia are entitled to the best quality health and social care services, regardless of setting. This might be at home, in an acute hospital, in a care home, or in a hospice.

At worst, “living well with dementia” can appear like a PR stunt, in the same way it can be glibly claimed that “England can be the best place to have dementia in 2020″. But there still needs to massive work done on the reality – social care funding on its knees, and access to palliative care services can be poor. The reluctance to consider dementia as a terminal condition has been a convenient attitude for those commissioners who wish to make their budgets lean, bordering on anorexic.

Advocating for rights in dementia by people with dementia and carers (and these rights are often complementary rather than the same) is only possible if people know what their rights are. That’s why I believe we do need a national programme to unlock these rights for the general public.

The initiative ‘Dementia Rights’ is designed to be self-sufficient. I have no intention, and nor does anyone else, of running these sessions contemporaneously with Dementia Friends. I do not want to advertise by association, particularly when I feel that dementia has got too marketed and commodified.

Rights in dementia, conversely, are inalienable and universal. It was known that racial segregation was morally unacceptable prior to the change in the South African legislation. So it would be wrong to put all your faith in rights in the legal basket.

At a time when the UK government intends to repeal human rights legislation, and with access to justice crippled by the legal aid legislation from 2012, it would be dangerous to make such a campaign too legally focused. The ‘Dementia Rights’ campaign, on the other hand, covers fundamental principles in rights-based advocacy common to all jurisdictions.

Rights are not the only solution. If a 55 year-old female with dementia in a wheelchair, also living with multiple sclerosis, finds herself discriminated against, she might also have a valid claim in sex discrimination, age discrimination, or disability, depending on the material facts.

During the #AliFuneral, for the amazing rights activist and boxer (and many other things) who is Mohammad Ali, somebody tweeted this great graphic about the identity of ‘Wonder Woman’.


But the analysis in law should not be obstructive to her fighting her injustice. And it needs to be shouted from the rooftops that dementia itself is a disability.

The ‘Dementia Rights’ social movement has complementary but different aims to Dementia Friends. They indeed  have completely different logos, with the Dementia Rights logo incorporated the international emblem for human rights. There are nearly 2 million Dementia Friends, and currently 0 Dementia Rights supporters. It is lazy to claim that there would be ‘some confusion’ only unless you take a very aggressive approach to intellectual property rather than have a genuine interest in public policy. And besides, the Court would flatten any claims under the Trade Marks Act (1994).

In response to my claim to be left-wing than others, the other day, somebody whom I respect massively said, ‘Well, Shibley, you’d be surprised’. I am determined to make my initiative ‘Dementia Rights’ available for the public good for free. I do not intend to ‘sell’ it to commissioners, because human rights and ideally their implementation should not cost money.

Therefore, I am designing a new website, and, as soon as the website is up and running, all of the materials will be downloadable for free. In particular, I want the Alzheimer’s Society, Dementia UK, Alzheimer’s Research UK, DEEP and Dementia Alliance International to know that they can do whatever they want with the initiative.

Views of experts by experience urgently needed for a new book on dementia for junior doctors

I personally find the term ‘expert by experience’ a bit “clunky”, but I am in absolutely no doubt that the people who know about dementia the most are those living with the condition, and they know the most in their specific time and place. Also, people closest to them, often ‘carers’, often know very many things which you’d never discover in any textbook.

You will know that I have a huge amount of admiration for the work of Dementia Alliance International. This is a mantra often quoted by them, which is undoubtedly inspirational.




I recently had experience of how the acute medical service works in a busy London teaching hospital. This was interesting to me in my dual identities as a family person helping to care and support and as an academic physician in dementia.

There were, in my view, islets of superb care – for example foot massage to improve the wellbeing of inpatients on the hospital wards. They were examples of care which was, arguably, organised from the provider not recipient perspective – like people with memory and attention problems being taken off for investigations without warning. I personally hoped that visiting hours could be more flexible.

I found, however, that senior members of that teaching hospital were very keen to contribute to learning as an organisation. This indeed surprised me.



I intend to write a book for junior doctors on principles of dementia care.

This book will be made available free-of-charge. It will be open source.

I think it’s fair to say that such a book has to be contextualised at peace with the rest of their professional training.

On the other hand, I don’t wish to produce yet another carbon-copy handbook or guide, particularly when there are so many outstanding initiatives (such as John’s Campaign and dementia-friendly wards) which are already making a difference bit by bit.



If you’re a person with dementia, or carer, and would like to say what you think junior doctors should know about dementia and dementia care, please complete the short survey here.

The survey will take about 5-10 minutes.


Thank you very much.

Scoping exercise for a new book for junior doctors on dementia

new book


Recent personal experience has allowed me to witness excellent acute hospital care. But I have also witnessed some examples of how clearly hospitals are potentially unpleasant environments for patients who happen to be living with dementia, and also their closest who accompany for them.

For this reason, I’d like to write a short book on dementia for junior doctors. I intend to publish the book with UCL Press, which will help to ensure high standards in copyediting and other production. I am mindful that hospitals are not the only venue of service provision, training or research (for example) for dementia, and the book should hopefully be of use to junior doctors not in employment, in primary care, in hospices, mental health settings, care homes or elsewhere. I am also, however, mindful of my college (Royal College of Physicians) wishing to train junior doctors able to provide the highest quality in dementia care if they need to.

I don’t wish to write a book focused to help them pass their higher professional exams. I have actually done this for the MRCP as it happens. But I would like to write a book which would be useful as they go about their work on the wards.

The book would be not for profit – but rather be a freely available pdf a valuable online. I was part of a generation which did not have to pay for his university education. Things are totally different now where a medical training can leave people in debt for years.

I am more concerned about publishing a book which is of practical use to patients with dementia, their friends, families and carers (there might be overlap in this). I want the book to be easy to read, not bogged down overly in detail, and be holistic in outlook. Hopefully the book will be useful for junior doctors as they navigate through concerns about the diagnosis itself, or subsequent care and support. For example, due to constraints of employment and training, junior doctors might be unaware of what other health professionals do, or what the needs of carers might be.

Please free to contribute on the form – you can do so anonymously if you so desire.



Living with dementia: Chris’ story

There’s a new Xbox game called ‘Grabbed by the Ghoulies!”

In this game, a young boy named Cooper and his girlfriend, Amber, are seen searching frantically for civilisation after they take a wrong turn. They are caught in a storm and head to a nearby mansion to seek shelter. Once outside, Cooper checks his map, but is unaware that someone is watching. Baron von Ghoul, the game’s main antagonist, looks down from his window and orders two gargoyles to retrieve Cooper and Amber.

‘Ghoulies’ is a term referring to a part of the body, colloquially and affectionately, affected when ‘hit in the groin’.

A diagnosis of dementia should never been given to the recipient of the diagnosis alone. Many have described the news of a diagnosis as worse than a ‘kick in the groin’. In fact, Chris Roberts, living with a mixed Alzheimer’s and vascular dementia, has mentioned in public how his own diagnosis was disclosed to him on a busy clinic day, with somebody knocking on the door asking if the room was going to be free.

If you ‘believe in’ person-centred care, you believe that care should be person-centred including at the point of diagnosis. This means that the diagnosis is given in a ‘timely’ way, taking on board the diagnosis recipient’s beliefs, concerns and expectations. The term ‘early diagnosis’ is not actually that helpful in this context, as, as such, a diagnosis of dementia of a rare genetic mutation could in theory be conducted in someone’s womb.

Knowing the context of someone’s life is incredibly important for gauging how he or she might react to that diagnosis. A correct diagnosis of dementia is a big deal, but what is often forgotten is that after the diagnosis you might have on average eight years to come. The figures vary in fact – Chris and I both know people who’ve had from two to at least sixteen years.

But the point is this. Irrespective of the current situation with ‘cures’ and ‘treatments’ for dementia per se, it’s the case that ‘dementia tends not to travel alone’. A person with dementia being admitted to hospital is likely to live with numerous other conditions, and be on the receiving end of numerous pharmacy prescriptions.

A person with dementia is an individual with a name, beliefs, concerns and expectations, and unique identity. His or her friends or family can end up being pivotal in a caring role, and, following diagnosis, the aim should be fully to enable and protect that person to live life with dementia to the full.

Whether or not the diagnosis and what follows happens in primary or secondary care, people living with dementia are entitled to the very best outcomes in health and social care. Indeed, most of the ‘suffering’ for people with dementia and carers can come from the devastating cuts in health and social care budgets.

Following the Prime Minister’s Dementia Challenge, England is in a hugely better place with dementia inclusive communities than before. Dementia is actually a disability under current equality legislation in force, and people with dementia are worthy of ‘reasonable adjustments’ just as in a physical disability. But it is important likewise to realise that a person with dementia has a unique set of positive skills and abilities too at any one particular time; this approach is known as ’embracing neurodiversity’.

What will happen on Thursday in the flagship BBC series ‘Panorama’ is Chris’ story. The title reflects correctly the notion is that this programme is not a definitive guide to living with dementia for everyone. Everyone has different unique experiences.

But this is Chris’ story. Chris was 50 when diagnosed with young onset dementia. He used to run a successful motorcycle shop, and had a young family. I had the pleasure of going on holiday and to the Alzheimer’s Disease International conference in Perth, Western Australia, last year with Chris, Jayne and Kate.

I strongly recommend their story to you. I have no idea what’s in it.

Labour peer Lord Mandelson said famously once, ‘I’m a fighter, not a quitter”. Whilst I don’t particularly like aggressive battle analogies such as ‘the war against dementia’. I think this unique documentary will also share a sense of the grit and optimism of Chris and family, as well as their to-be-expected fears of the future.

I have a philosophy that ‘anything can happen to anyone at any time’ – and as such it’s not how you fall, but how you get up again, which is the true measure of you. I think how Chris and family have taken head-on his diagnosis of mixed dementia will be informative and educational for many, not least for members of the medical profession whose ability in this area could itself be much improved.


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The biggest risk is the future

Steve Hilton

As the neverendum talk perhaps is beginning to wind up, both sides in the European referendum debate are getting their closing speeches to invite you to use your vote in the UK to decide on EU membership.

This week, it was a chance for Steve Hilton, former advisor to the current Prime Minister David Cameron MP, to trot out the standard Brexit arguments. One of them, he emphasised at one point, is: “The biggest risk is the future.” I politically have much more in common with Steve Milton from Innovations in Dementia – though that other Steve isn’t fond of Mr ByeRight T-shirts.

Of course, it is impossible to make the future fool-proof. Dementia is the most feared condition in adulthood, it appears, and it is standard practice for national and international Big Charity to prey on this fear to raise funds. This shock doctrine, in combination with the “one last push” from tabloids such as the Daily Express, is only let down by the harsh reality of the actual scientific evidence.

This negative result about bapineuzumab for mild to moderate Alzheimer’s disease in two global, randomized, phase 3 trials, for example, was only published officially about a fortnight ago.

sneaked out

But the mood music of the press release about this drug from the Alzheimer Association in 2012 was somewhat different. Money is incessantly being pumped into this particular area in dementia.

As the Alzheimer Association press release says,

“The urgency is clear. By midcentury, care for people with Alzheimer’s will cost the U.S. more than $1 trillion every year. This will be an enormous and unsustainable strain on the healthcare system, families, and federal and state budgets. Better treatments and prevention strategies are absolutely necessary to reduce the financial and personal toll the disease takes on individuals, families and the healthcare system now and in the immediate future.”

Big Charities deliberately ramp up the fear to encourage you to fund raise for dementia. This is particularly unfortunate in the UK where a big ‘cure for dementia’ has actually not been forthcoming, whereas social care and intermediate care funding have been on its knees meaning that many adult patients cannot get discharged in a timely way from acute hospitals. This predictably is ruining the patient and carer experience for many. It’s been estimated that 30% at least of all adult admissions for medicine involve someone with dementia.

The fear of the diagnosis can mean that someone, or his or her own friends and family, might delay seeking out an official diagnosis of dementia. I feel, however, there has been a substantial, if not complete, turnaround in societal attitudes towards dementia in England through initiatives such as ‘Dementia Friends’ from the Alzheimer’s Society. But national campaigns are unable to eliminate stigma, prejudice, discrimination and outright bigotry.

Closing the diagnosis gap was not simply down to a reluctance of general practitioners to diagnose dementia, although general practitioners were often blamed publicly for this. Alzheimer’s Scotland at the beginning of June are about to debate whether diagnosis and management for dementia should take place in primary and secondary care, but the mere title of this debate is a huge insult to patients. Patients should be able to choose the venue of where this discussion takes place – it should be beyond the power of professionals to choose where this diagnosis and post-diagnostic support takes place, whatever the actual answer to the question might be.

Take for example the 430,000 people living in care homes. A substantial proportion of them will be living with a dementia such as Alzheimer’s disease, and it would help to meet their care needs if a carer knew this. For example, a care home resident may not be able to remember some interactions he has had with a carer, or may not be able to remember whether he has taken his medication that morning.

Or, take a frail lady who falls over with a subsequent acute admission to a NHS hospital. She might be given a CT scan showing volume loss of brain, and with a background of blood results not explaining cognitive problems and a history of worsening memory problems, and it might be a case for a diagnosis of dementia to be approached.

Courage to face one’s fears is a pervasive strand, whether you’re a recipient or provider of care services. Courage involves making a decision, often in the face of some fear, about the future. Indeed, cognitive neurology research has now consistently shown that one of the cognitive symptoms of people with dementia might in fact be a lack of awareness of problems, or indeed a specific lack of ability to predict forward into the future. This interesting phenomenon is called ‘prospection‘, and future research into this area would be valuable.

So, I feel Steve Hilton is right in the sense that the ‘biggest risk is the future’. But having a diagnosis of dementia is ‘not a death sentence’, in that many people with dementia can live as well as possible for many years with the right care and support. Planning might not just be in care but also in financial and legal affairs. It is said that facing the future is easier in dementia once you finally have an explanation, such as for worsening memory problems. But dementia is not just about memory.

A big risk for people with dementia ‘suffering’ is people with dementia suffering from never-ending cuts to the NHS and social care. That is the reality of the situation, and it is time Big Charity campaigned on that too. Disappointingly this week, there was no representation of people living with dementia giving a talk at the global #WHA69 summit, although they was no shortage of the usual hobnobbers bigging up the successful political leadership. But it’s worth noting that some people would not have had ‘seats at the table’ at all had it not been for certain people with dementia who had put them there.



Embracing diversity is a crucial step in breaking down stigma for dementia


A curious thing happened when I was taking a taxi back home from the Royal Free Hospital in Hampstead. The taxi driver, somebody I first met several years ago in fact, reminded me that he is a father of two children living with autism. But he presented the information as if he was telling me some catastrophic news.

I have kept in touch with Prof Simon Baron-Cohen’s work, as Director of the Autism Research Centre at Cambridge, not least because Simon was my first ever supervisor there. I did a study with him on the genetics of synaesthesia, a condition where a person might see a colour in his mind’s eye on hearing a word.

Baron-Cohen has advanced the approach that people living with autism, whilst poor at empathy processing, tend to be very good at big picture systemisation planning. People with autism can flourish in highly mathematical and technical disciplines. Einstein, it is remarked, was poor at interactions with other children once and exhibited a symptom called ‘echolalia’ in speech, which can be a symptom of autism.

Dementia is an umbrella term referring to more than a hundred different conditions of the brain which can produce cognitive and behavioural symptoms over time, not just in memory. But imparting the diagnosis of dementia embraces the ‘cliff edge’ nature of dementia – that one moment you might not fit the diagnostic criteria, the other moment you do. Therefore, ‘having dementia’ is an all or nothing phenomenon, and has a sense of finality.

This sense of finality, however, can be very destructive. Kate Swaffer, Chair of Dementia Alliance International, has described the impact of the diagnosis as a disempowering experience. Many people with dementia experience social isolation and loneliness on diagnosis. As a likely result of the stigma of the diagnosis of dementia, dementia has become one of the most feared conditions in adulthood.

But I feel dementia inherently can be thought of using an approach of ‘neurodiversity’. Whilst dementia is not a mental illness, but rather a condition of the brain, we are acknowledging the diverse aspects of mental function already say in ADHD, autism and schizophrenia. Neurodiversity is a phenomenon akin to biodiversity, of species with varying adaptive traits, and the broad range of neurodiverse phenotypes makes as a whole a resilient population.

It is a matter of speculation what dementia might be adaptive for, but, people with ADHD, with distractibility and hyperactivity, might, theoretically, exhibit traits which are adaptive for the hunter-gatherer population.

I feel as another Dementia Awareness Week draws to a close that we are in a much better place with dementia than where we were only a few years ago. People on the whole are no longer ashamed to be living with dementia. As Dr Jennifer Bute said in a BBC programme last week, it’s not the challenge itself of interest of the diagnosis of dementia, but the personal reaction to that challenge.

This has led to a situation where people with dementia are respected for what skills and lifelong experience and wisdom they can bring to the table. This strength based approach is fundamentally different to the one which purely focuses on deficits.

I have no doubt, personally, that an approach which emphasises human rights for people living with long term disabilities is a right one. The UN Convention on Rights for People with Disabilities, whilst not explicitly mentioning dementia, clearly is supposed to embrace conditions such as dementia.

It is right that if a disability in cognitive function is identified it should be rectified through some sort of adaptation or adjustment. That is the purpose of the “PANEL” human rights approach globally, which implements equality non-discrimination and accountability.

But gone are the days when one size fits all, and that’s where the “neurodiversity” approach, celebrating skills and abilities as well as disabilities, comes in. I feel that embracing diversity of all people, in an inclusive way, is necessary and sufficient for breaking down stigma.

It is intuitive that we don’t want a population where we rank people on how fast they get to the same solution, even though this is what academic assessments at school and university appear to do. We should, instead, be encouraging a society where people can legitimately offer different things. This is not a question of ‘all shall have prizes’, but rather adopting an approach where success builds on success.

And if someone’s cognitive profile changes, that person with dementia should have inalienable universal rights to ensure that he or she can live as fulfilling life as possible. It is worth noting that this approach is entirely valid irrespective of whether a cure for dementia is found before 2025.

A sense of agency and urgency is at the pivot of ‘dementia rights’.

This week, the first two ever Dementia Rights Champions will give their first information sessions in the innovative ‘Dementia Rights’ programme.

Dementia Rights is a novel, innovative programme designed not just to dispel the stigma and prejudice which can surround dementia, but also is supposed to be of practical help to people living with dementia in the UK to help ‘unlock’ their rights.

Dementia Rights information sessions are about 45-minutes to 60 minutes, and are designed to spread five key messages the Dementia Society  thinks everyone should know about rights.

These are shown on their pledge card.


There are currently about 900,000 people in the UK who’ve received a diagnosis of dementia. All of them are defined by their unique identities as persons, not defined by the labels of the dementia diagnosis. The Dementia Friends programme from the Alzheimer’s Society and Public Health England was a social movement launched in 2012 as part of the Prime Minister Dementia Challenge to help to raise awareness of dementia.

One of the key messages in Dementia Friends is that it is possible to live well with dementia. For ‘Dementia Awareness Week’, the Alzheimer’s Society is asking everyone to confront dementia. Their research yet further shows that people are on the whole reluctant to seek a diagnosis. This is possibly due in part to the negative social perception of dementia.


I presented a talk earlier this year in Budapest at the 31st Alzheimer’s Disease International Conference. This talk presented novel survey data on how knowledge of legal rights from domestic and international instruments was generally poor. This lack of knowledge about rights is a major barrier to the widespread adoption of rights internationally, it is felt.

The international stakeholder group of people with dementia “Dementia Alliance International” have led on this rights based initiative to promote rights. As part of campaign, they have been globally concerned with making sure that people know that they can ‘make a difference’. This sense of agency and urgency is pivotal to make rights for dementia a reality. You can support their brilliant work directly here.

There is a growing feeling that rights based advocacy in dementia is not at all about people making money ‘out of opportunities’, and death by powerpoint or commissioning. I have written a pamphlet on the application of rights in England and Wales jurisdiction, which contains general principles of use in other jurisdictions. I am making this work available for free, but this is no replacement for actual legal advice; the pamphlet is clearly meant to be a general introduction to the area.

You can access this pamphlet here


You can help this Dementia Rights movement, by contacting me if you want to become a Dementia Rights Champion. I’d love to hear from you.


#DAW2016 Dementia Awareness Week: The Five Key Messages of ‘Dementia rights’


Dementia Rights” is a social action movement that aims to increase understanding of the importance of rights and dementia and inspire people to take action to promote these rights in the community.

To become a Dementia Rights Supporter, all you need to do is learn five key messages that we think everyone should know about dementia and rights in any country, and then commit to take an action which promotes rights in dementia.

1. Rights apply to everyone, and ought not to be taken away.

The 1948 Universal Declaration on Human Rights is by far the most widely accepted definition of human rights, encompassing civil and political as well as economic, social and cultural rights.

Human rights are relevant to all of us, not just those who face repression or mistreatment. They protect you in many areas of your day-to-day life. So – in summary, key qualities of human rights have been agreed upon by the international community.

Rights can never be taken away, although they can sometimes be restricted – for example if a person breaks the law, or in the interests of national security.

It has been agreed that human rights must be recognised as:

  • Universal: they belong to all of us, to everybody in the world
  • Inalienable: they cannot be taken away from us
  • Indivisible and interdependent: governments should not be able to pick and choose which are respected.  Rights go together with responsibilities.

2. With rights go together with responsibilities expected of individuals.

With rights come responsibilities expected of individuals. “Qualified rights” are rights which require a balance between the rights of the individual and the needs of the wider community or state interest. These inclue: the right to respect for private and family life, the right to manifest one’s religion or beliefs, or freedom of expression.


3. Dementia is in law a disability.

A mental health condition is considered a disability if it has a long-term effect on your normal day-to-day activity. There are many different types of mental health condition which can lead to a disability, including dementia. Dementia is one of the major causes of disability and dependency among older people worldwide.

Under article 9 of an international instrument called the UN Convention of Rights for People with Disabilities, all people with disabilities have the right to access all aspects of society on an equal basis with others including the physical environment, transportation, information and communications, and other facilities and services provided to the public.

4. It is possible to enforce legal rights.

Rights can be used in real life locally and have some “teeth”. Legal provisions in equality and human rights are enforceable in a number of countries, either directly or indirectly.

5. A major function of human rights is protect against discrimination.

Disability comes under this as a ‘protected characteristic’, and dementia is a disability. People are not allowed to discriminate because they have any of the protected characteristics. There is also protection against discrimination where someone is perceived to have one of the protected characteristics or where they are associated with someone who has a protected characteristic. Discrimination means treating one person worse than another because of a protected characteristic (known as direct discrimination) or putting in place a rule or policy or way of doing things that has a worse impact on someone with a protected characteristic than someone without one, when this cannot be objectively justified (known as indirect discrimination).

#DAW2016 Dementia Awareness Week 2016: The five fundamental messages of ‘Dementia Friends’


Ideally, at the end of a ‘Dementia Friends’ session, each participant will have learned the five key things that everyone should know about dementia, and aspired to turn an understanding into a commitment to action.

In this blogpost , I wish just to discuss a little bit these messages in a way that is interesting. If you’re interested in finding out more about ‘Dementia Friends’, please go to their website. Whatever, I hope you become interested about the dementias, even if you are not already.


I am a “Dementia Friends Champion”.


1. Dementia is not a natural part of aging.

This is an extremely important message.

However, it is known that the greatest known risk factor for dementias overall is increasing age. The majority of people with Alzheimer’s disease, typically manifest as problems in new learning and short term memory are indeed 65 and older.

But Alzheimer’s disease is not just a disease of old age. Up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s.

When you see someone who is old, say above 65, they do not necessarily have dementia.

Dementia, caused by a disease of the brain, can affect any of the functions of the brain – such as movement, visual perception, memory or attention.

It’s felt that almost 40 percent of people over the age of 65 experience some form of memory loss.

When there is no underlying medical condition causing this memory loss, it is known as “age-associated memory impairment,” which is considered a part of the normal aging process.

But brain diseases like Alzheimer’s disease and other dementias are completely different.

Alzheimer’s disease is the most common cause of dementia worldwide.

The risk of getting dementia increases with age, but it is important to remember that the majority of older people do not get dementia. It is not a normal part of ageing.

Old age does not cause dementia but is a factor in developing the condition. The probability of an individual developing dementia increases with age, but not everyone will develop dementia in old age.

Dementia can happen to anybody, but it is more common after the age of 65 years.

Indeed, “young onset dementia” (YOD) plays out at a much younger age, anyway.

YOD, which most often plays itself out in the form of Alzheimer’s disease, is an abnormal neurological condition that is likely caused by a combination of factors.

YOD is increasingly recognised as an important clinical and social issue. This group of individuals have distinct needs for living well with dementia as far as possible.

Young onset dementia (by EL Sampson, JD Warren and MN Rossor) [Postgrad Med J 2004;80:125–139. doi: 10.1136/pgmj.2003.011171] cite a useful breakdown of the most common causes.

These causes are diseases, and produce a chronic, progressive course of dementia. The spectrum of diseases causes YOD bears some similarities and differences to that of diseases causing dementia in the older age group.


(from Sampson, Warren and Rossor, 2004)

Prevalence rates of young onset dementia have been estimated between 67 to 81 per 100 000 in the 45 to 65 year old age group.

A rare type of dementia, the variant Creutzfeldt-Jakob Disease (vCJD) was first reported in 1996; the youngest patient developed symptoms at 16 years of age (reviewed in Verity et al., 2000).

As described in the WHO factsheet 180, Variant Creutzfeldt-Jakob disease (vCJD) is a rare and fatal human neurodegenerative condition which is classified as a Transmissible Spongiform Encephalopathy (TSE), because of its ability to be transmitted and the characteristic spongy degeneration of the brain that it causes.

Its diagnosis does need to be in very specialist hands.

But, notwithstanding all that, is likely that the situation is likely to be very complicated.

The basal forebrain cholinergic complex including nucleus basalis of Meynert provides the mayor cholinergic projections to the cerebral cortex and hippocampus.

cholinergic neurones

Source here.

It’s thought that the hippocampus represents the story of facts or events (episodic memory), one of the bookcases in the “bookcase analogy” of the Dementia Friends initiative.

But it has latterly been acknowledged (Schliebs and Arendt, 2011) that he cholinergic neurones of this complex have been described to undergo moderate degenerative changes during aging, resulting in cholinergic hypo function that has been related to the progressing memory deficits with ageing.




2. It is caused by diseases of the brain.

Prof John Hodges, who did the Foreword to my book, has written the current chapter on dementia in the Oxford Textbook of Medicine. He also supervised my Ph.D. The chapter is here.

There is a huge number of causes of dementia.

The ‘qualifier’ on this statement is that the diseases affect the brain somehow to produce the problems in thinking. But dementia can occur in the context of conditions which affect the rest of the body too, such as syphilis or systematic lupus erythematosus (“SLE”).

That ‘Dementia is caused by diseases of the brain’ may seem like a pretty innocuous statement.

There have been numerous attempts at looking at the numbers of the different causes of dementia, varying in overall success over the years.

One study “Prevalence of dementia subtypes: A 30-year retrospective survey of neuropathological reports” came from Hans Brunnström, Lars Gustafson, Ulla Passant and Elisabet Englundemail in 2008.

The authors  investigated the distribution of neuropathologically defined dementia subtypes among individuals with dementia disorder.

The neuropathological reports were studied on all patients (n = 524; 55.3% females; median age 80, range 39–102 years) with clinically diagnosed dementia disorder who underwent complete post mortem examination including neuropathological examination within the Department of Pathology at the University Hospital in Lund, Sweden, during the years 1974–2004.

The neuropathological diagnosis was Alzheimer’s disease in 42.0% of the cases, vascular dementia in 23.7%, dementia of combined Alzheimer and vascular pathology in 21.6%, and frontotemporal dementia in 4.0% of the patients.

Different types of dementia (and factsheets about them) are summarised in this page from the Alzheimer’s Society.

Part of the problems with the statement comes from the definition of ‘dementia’.

For example, a WHO definition is provided thus:

“Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.”

However academics and practitioners over the years have squabbled over the nuances of the definition. Should the definition compulsorily include memory in the early stages? Most people I think would agree ‘no’, if only because of the behavioural variant of frontotemporal dementia where individuals present with an insidious progressive change in behaviour and personality in the early stages can report no changes in their memory. And can it be reversible?

But problems in metabolism from the rest of the body can cause problems in brain function. The list is a long one, and an introduction to this topic here.

And antibodies raised in cancers which haven’t revealed themselves yet can cause a dementia-like picture.

Paraneoplastic limbic encephalitis (PLE) is a rare disorder characterized by personality changes, irritability, depression, seizures, memory loss and sometimes dementia.

This diagnosis is difficult because clinical markers are often lacking, and symptoms usually precede the diagnosis of cancer or mimic other complications.

A range of tumours outside of the brain can be implicated in this complicated conditions, including oesophagus, lung, bladder, colon, lung, thymus and breast.

This is for example a helpful summary table from Gultekin and colleagues in Brain. 2000 Jul;123 ( Pt 7):1481-94.

Table 1

They can be associated with markers in the fluid surrounding the spinal cord, and in magnetic resonance imaging of the brain. But to call them “diseases of the brain” would be a massive over-simplification?

And there might not be a biological disease at all causing profound symptoms.

McKay and Kopelman’s article “Psychogenic amnesia: when memory complaints are medically unexplained” in Advances in psychiatric treatment (2009) [vol. 15, 152–158 doi: 10.1192/apt.bp.105.001586] is an extremely useful introduction.

Amnesia is a particular cognitive problem. Amnesia has been defined as ‘an abnormal mental state in which memory and learning are affected out of all proportion to other cognitive functions in an otherwise alert and responsive patient’ (Victor 1971).

According to them, “A number of terms have been used to describe medically unexplained amnesia, including ‘hysterical’, ‘psychogenic’, ‘dissociative’ and ‘functional’. Each requires the exclusion of an underlying neurological cause and the identification of a precipitating stress that has resulted in amnesia. Unfortunately, the presence of amnesia may make it difficult to identify the stress until either informants have come forward or the amnesia itself has resolved”.

They helpfully provide this scheme for looking at the causes.


Hans J. Markowitsch looked at “Psychogenic amnesia” in an extremely useful article in NeuroImage 20 (2003) S132–S138.

Markowitsch, a world leader in memory, kicked off with the realisation that sometimes a disease of the brain, in terms of an identifiable pathology, often could not be located for quite profound symptoms.

“Commonly, memory disturbances are related to organic brain damage. Nevertheless, especially the old psychiatric literature provides numerous examples of patients with selective amnesia due to what at that time was preferentially named hysteria and which implied that both environmental circumstances and personality traits influence bodily and brain states to a considerable degree. Awareness of the existence of relations between cognition, soma, and psyche has increased especially in recent times
and has created the research branch named cognitive neuropsychiatry.”

Mizutani and colleagues (2014) have indeed reported a case which could to all intents-and-purposes have been caused by a disease of the brain.

Its cause is an overactive thyroid, a gland in the neck.

“We report the case of a 20-year-old Japanese woman with no psychiatric history with apparent dissociativesymptoms. These consisted of amnesia for episodes of shoplifting behaviors and a suicide attempt, developing together with an exacerbation of Graves’ hyperthyroidism. Patients with Graves’ disease frequently manifest various psychiatric disorders; however, very few reports have described dissociative disorder due to this disease. Along with other possible causes, for example, encephalopathy associated with autoimmune thyroid disease, clinicians should be aware of this possibility.”

Dissociative disorders can take many forms – see this factsheet from Mind.

It is thought that dissociative amnesia is amnesia caused by trauma or stress, resulting in an inability to recall important personal information.

Therefore ‘Dementia is caused by diseases of the brain’ is not in fact an innocuous statement. But for the purposes of “Dementia Friends”, it is.



3. It’s not just about memory loss.

This statement is perhaps ambiguous.

“Not just” might be taken to imply that memory loss should be a part of the presenting symptoms of the dementia.

On the other hand, it might be taken to mean “the presentation can have nothing to do with memory loss”, which is an accurate statement given the current state of play.

John (Hodges) comments:

“The definition of dementia has evolved from one of progressive global intellectual deterioration to a syndrome consisting of progressive impairment in memory and at least one other cognitive deficit (aphasia, apraxia, agnosia, or disturbance in executive function) in the absence of another explanatory central nervous system disorder, depression, or delirium (according to the Diagnostic and Statistical Manual of Mental Disorders , 4th edition (DSM-IV)). Even this recent syndrome concept is becoming inadequate, as researchers and clinicians become more aware of the specific early cognitive profile associated with different dementia syndromes.”

I remember, as part of my own Ph.D. at the University of Cambridge on the behavioural variant of frontotemporal dementia,virtually all the persons with that specific dementia syndrome, in my study later published in the prestigious journal Brain, had plum-normal memory. In the most up to date global criteria for this syndrome, which should be in the hands of experts, memory is not even part of the six discriminating features of this syndrome as reported.

Exactly the same arguments hold for dementia syndromes which might be picked up through a subtle but robust problem with visual perception (e.g.posterior cortical atrophy) or in language (e.g. semantic dementia or progressive (non-) fluent aphasia, logopenic aphasia.) <- note that this is in the absence of a profound amnestic syndrome (substantial memory problems) as us cognitive neuropsychologists would put it.

Dementia is a general term for a number of progressive diseases affecting over 800,000 people living in the UK, it is estimated.

The heart pumps blood around the circulation.

The liver is involved in making things and breaking down things in metabolism.

The functions of the brain are wide ranging.

There are about 100 billion nerve cells called neurones in the brain. Some of the connections between them indeed do nothing. It has been a conundrum of modern neuroscience to work out why so much intense connectivity is devoted to the brain in humans, compared to other animals.

For example, there’s a part of the brain involved in vision, near the back of the head, known as the ‘occipital cortex’. Horace Barlow, now Professor Emeritus in physiology at the University of Cambridge, who indeed supervised Prof Colin Blakemore, Professor Emeritus in physiology at the University of Oxford, in fact asked the very question which exemplifies one of the major problems with understanding our brain.

That is, why does the brain devote so many neurones in the occipital cortex to vision, when the functions such as colour and movement tracking are indeed in the eye of a fly.

The answer Barlow felt, and subsequently agreed to by many eminent people around the world, is that the brain is somehow involved in solving “the binding problem”. For example, when we perceive a bumble bee in front of us, we can somehow combine the colour, movement and shape (for example) of a moving bumble bee, together with it buzzing.

The brain combines these separate attributes into one giant perception, known as ‘gestalt’.

What an individual with dementia notices differently to before, on account of his or her dementia, will depend on the part of the brain which is affected. Indeed, cognitive neurologists are able to identify which part of the brain is likely to be affected from this constellation of symptoms, in much the same way cardiologists can identify the precise defect in the heart from hearing a murmur with a stethoscope.

In a dementia known as ‘posterior cortical atrophy’, the part of the brain involved with higher order visual processing can be affected, leading to real problems in perception. For example, that’s why the well known author has trouble in recognising coins from their shape from touching them in his pocket. This phenomenon is known as ‘agnosia’, meaning literally ‘lack of knowing’.

If a part of the brain which is deeply involved in personality and behaviour, it would not be a big surprise if that function is affected in a dementia which selectively goes for that part of the brain at first. That’s indeed what I showed and published in an international journal in 1999, for behavioural variant frontotemporal dementia, one of the young onset dementias.

If the circuits involved in encoding a new memory or learning, or retrieving short term memories are affected, a person living with dementia might have problems with these functions. That’s indeed what happens in the most common type of dementia in the world, the dementia of the Alzheimer Type. This arises in a part of the brain near the ear.

If the part of the brain in a dementia which is implicated in ‘semantic knowledge’, e.g. knowledge for categories such as animals or plants, you might get a semantic dementia. This also arises from a part of the brain near the ear, but slightly lower and slightly more laterally.

So it would therefore be a major mistake to think a person you encounter, with memory problems, must definitely be living with dementia.

And on top of this memory problems can be caused by ageing. It would be wrong to pathologise normal ageing in this way.

Severe memory problems can be caused by depression, particularly in the elderly.

In summary, dementia is not just about losing your memory.



4. It’s possible to live well with dementia.

I of course passionately believe this, or I wouldn’t have written a book on it. It is, apart from all else potentially, the name of the current English dementia strategy.

So why is this “it’s possible to live well with dementia” even a statement in “Dementia Friends“, a Public Health England initiative delivered by the Alzheimer’s Society. It should be obvious shouldn’t it?

The answer comes in the ‘icebreaker’ exercise at the beginning of the Dementia Friends session. Attendees are asked to think of the first word that springs to mind when they think of dementia.




And indeed it would be wrong to ignore how distressing a diagnosis of dementia can be for certain individuals with dementia. Take for example people with diffuse Lewy Body disease, typically individuals in the younger age bracket in their 50s, who have complete insight into the condition, realise that memory might be going, and are exasperated at the ‘night terrors’.

‘Living well with dementia’, conversely, is supposed to counteract the negative word associations may people have about dementia. It’s felt that such negative connotations contribute to the stigma individuals with dementia can experience after their diagnosis. This can ultimately lead to discrimination, hence the need for communities which are welcoming to such individuals.

It also happens to be the name of the English dementia strategy, which was introduced by the last Government in 2009. Dementia as a policy plank now in England has full cross party support, and the current ‘Prime Minister’s Dementia Challenge’ is due to come to an end next March 2015.

In the panel session above, somebody asks whether a dementia diagnosis should ever be withheld from a person with dementia. Kate Swaffer, living with dementia herself, believes firmly ‘no’, saying that one would never dream of withholding a diagnosis of cancer.

Policy in this jurisdiction and others has given due attention to whether the person receiving the diagnosis of dementia actually benefits – put simply is it ‘disabling’ rather than ‘enabling’.

Does it shut more doors than it opens?

But even if one takes the view that dementia is a disability which one is perfectly entitled to do on reading the case law surrounding the Equality Act (2010), the issue of making reasonable adjustments around this particular disability then becomes not a trivial one.

Richard Taylor elegantly advances this argument. Big Pharma have been impressively unimpressive in the offerings for dementia, although some report some substantial short-term symptomatic benefit for symptoms.

The National Institute for Clinical Excellence (NICE) have stated clearly that such medications do not slow the progression of the condition.

But they did offer very recently some enormously useful guidance on supporting people to live well with dementia.

And this issue is a push-pull one. Given the relative inefficacy of the medical interventions, one is possibly attracted to the things one might do to promote living well with dementia.

In a world of ‘whole person care’, where there might be care coordinators helping to break down the silos of service provision for people living with dementia, we might arrive at a destination where people with dementia do receive some help.

This might include assistive technologies, other innovations, or access to advocacy services.

And for a person who has received a diagnosis of dementia, Richard Taylor argues that trust is pivotal. This is somewhat related to Kate Swaffer’s views that ‘support groups’ (for carers) might inadvertently encourage division.

Whilst members of the support and care network clearly have substantial ‘needs’, not least in behavioural and psychological considerations, promoting quality of life for people living with dementia is clearly going to be a vital policy plank for the future.

Some inroads have already been made, as I recently discussed here, but there is a lot yet further still to do I feel.



 5. There is more to the person than the dementia.

This is an extremely important message. I sometimes feel that medics get totally lost in their own clinical diagnoses, backed up by a history, examination and relevant investigations; and they become focused on treating the diagnosis rather than the person with medications. But once you’ve met one person living with dementia, you’ve done exactly that. You’ve met only one person living with dementia. And it is impossible  to generalise for what a person with Alzheimer’s disease at a certain age performs like. We need to get round to a more ‘whole person’ concept of the person, in not just recognising physical and mental health but social care and support needs, but realising that a person’s past will influence his present and future; and how he or she interacts with the environment will massively influence that.

There’s more to a person than the dementia.

In 1992, the late Prof Tom Kitwood founded Bradford Dementia Group, initially a side-line. Its philosophy is based on a “person-centred” approach, quite simply to “treat others in a way you yourself would like to be treated”.

A giant in dementia care and academia, I feel he will never bettered.

His obituary in the Independent newspaper is here.

Personhood is the status of being a person. Its importance transcends medicine, nursing, policy, philosophy, ethics and law even.

Kitwood (1997) claimed that personhood was sacred and unique and that every person had an ethical status and should be treated with deep respect.

A really helpful exploration of this is found here on the @AlzheimerEurope website.

Personhood in dementia is of course at risk of ‘paralyis by analysis’, but the acknowledgement that personhood depends on the interaction of a person with his or her environment is a fundamental one.

Placing that person in the context of his past and present (e.g. education, social circumstances) is fundamental. Without that context, you cannot understand that person’s future.

And how that person interacts with services in the community, e.g. housing associations, is crucial to our understanding of that lived experience of that person.

All this has fundamental implications for health policy in England.

Andy Burnham MP at the NHS Confederation 2014 said that he was concerned that the ‘Better Care Fund’ gives integration of health services a ‘bad name’.

It is of course possible to become focused on the minutiae of service delivery, for example shared electronic patient records and personal health budgets, if one is more concerned about the providers of care.

Ironically, the chief proponents of the catchphrase, “I don’t care who is providing my care” are actually intensely deeply worried about the fact it might NOT be a private health care provider.

Person-centered care is an approach which has been embraced by multi-national corporates too, so it is perhaps not altogether a surprise that Simon Stevens, the current CEO of NHS England, might be sympathetic to the approach.

Whole-person care has seen all sorts of descriptions, including IPPRthe Fabians, and an analysis from Sir John Oldham’s Commission,  and “Strategy&“, for example.

‘Whole person care’ would represent a fundamental change in direction from a future Government.

Under this construct, social care would become subsumed under the NHS such that health and care could be unified at last. Possibly it paves the way for a National Care Service at some later date too.

But treating a person not a diagnosis is of course extremely important, lying somewhat uneasily with a public approach of treating numbers: for example, a need to increase dementia diagnosis rates, despite the NHS patient’s own consent for such a diagnosis.

I have seen this with my own eyes, as indeed anyone who has been an inpatient in the NHS has. Stripped of identity through the ritualistic wearing of NHS pyjamas, you become known to staff by your bed number rather than your name, or known by your diagnosis. This is clearly not right, despite years of professional training for current NHS staff. This is why the campaigning by Kate Granger (“#hellomynameis”) is so important.

It is still the case that many people’s experiences of when a family relative becomes an inpatient in the National Health Service is a miserable one. I have been – albeit a long time ago – as a medical student on ward rounds in Cambridge where a neurosurgeon will say openly, “He has dementia”, and move onto the next patient.

So the message of @DementiaFriends is a crucial one.

Together with the other four messages, that dementia is caused by a diseases of the brain, it’s possible to live well with dementia, dementia is not just about losing your memory, dementia is not part of normal ageing, the notion that there’s more to a person than the dementia is especially important.

And apart from anything else, many people living with dementia also have other medical conditions.

And apart from anything else, many people living with dementia also have amazing other skills, such as cooking (Kate Swaffer), fishing (Norman McNamara), and encouraging others (see for example Chris Roberts’ great contributions to the community.)