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.

#DementiaRights

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.

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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

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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’

#DementiaRights

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’

dementia-big-SS

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.

epidemiology

(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.

Amnesia

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.

“Suffering”

“Horrible”

“Terrible”

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.)

 

 

If we’re ‘curing’ Alzheimer’s disease, can we ‘solve’ delayed discharges too?

Cambridge-University-Senate-House

The famous ‘Two cultures’ speech was delivered in 1959 at the Senatre House in Cambridge by CP Snow, controversially on the growing schism (growing since the Industrial Revolution, at least) between the arts and sciences.

Coincidentally, 37 years later, I did finals in the same location in neuroscience for my Bachelor of Arts degree, with a mind to do a PhD in young onset dementia at Cambridge (which I then did).

I was really struck by the “two cultures” yesterday. In an ideal world, we shouldn’t have to fight about it – but as some will tell you on one particular political side, money does not grow on trees, but curiously there always seems to be enough money for certain types of research.

I found the Horizon programme on a cure for dementia good in as far as it went. It wasn’t really on a cure for dementia, but mainly an advert for some grant programmes in biomedical research in Alzheimer’s disease.

Nick Fox, now a Professor at Queen Square and Director of the Dementia Research Centre there, but who was getting towards the end of his protracted time as Specialist Registrar to Prof Martin Rossor when I was a junior there, explained how voxel based morphometry (specialised brain scanning) could be used to confirm a case of posterior cortical atrophy, previously undiagnosed.

The pitch though was entirely to miss the point. It would have been much more helpful to know what the precise rehabilitative offering for the patient with posterior cortical atrophy was – the patient himself described his own vision as “a jumble” in his own words.

There was hurried talk of tau markers in the cerebrospinal fluid. But a lumbar puncture is an invasive procedure. And a cure which could stop the building up of toxic tau would have been useful to discuss, but Fox totally skirted around what the benefit of his hard won diagnosis was.

If you take the view that the precise name of the dementia is relevant, but the dementia is merely a pathological description of a buildup of tau in the brain somewhere, that helps you with your sledgehammer approach of taking an anti-tau drug forward. Then it means Fox should have entered into some sort of debate as to whether we are all ‘tauopathies’ now, ranging from Alzheimer’s disease, to frontotemporal dementia or posterior cortical atrophy.

Does this make the underlying genetic basis irrelevant? I think somewhat the arguments that posterior cortical atrophy is a variant of Alzheimer’s disease have always been rather anaemic, without reference to why there is such selective neuronal degeneration in the visual parts of the brain, and without reference to the underlying commonalities in genetics basis.

But the problem for Fox with his ‘dementia can be spotted now a decade before symptoms approach’ is the lack of answer to what proportion of people with slightly aberrant brain scans or markers, at what time, would be taken forward for a possible therapeutic treatment.

We saw elsewhere a different person, made patient, through apolipoprotein genotyping, who had become quite distressed about the lack of genetic counselling.

The actual situation for Fox is that there are hundreds or thousands of neurologists or general medics who do not even know what the clinical presentation of posterior cortical atrophy is, so it is no wonder that such patients both here and abroad get taken round the houses, invariably through an ophthalmologist or eye clinic, over years, prior to a diagnosis.

The programme was predictably full of ‘sufferers’ and ‘devastating’, shock doctrine stuff, rather than ANY acknowledgement of any people with dementia leading fulfilling lives. I don’t have any ideological problem with people crying on TV as it represents an authentic emotion.

The narrative however was fraudulently set up as an epidemic of dementia – despite the fact it is now widely conceded that the prevalence of dementia is falling – and here’s the sunny uplands of cure to solve everything. It was good to see cognitive neurorehabilitation get a mention though, even though it was essentially bordering on window dressing.

Quality of care research would be desirable too, as well as good quality of life research.

This was yesterday’s headline in the Times.

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The problem was made more graphic with genuinely horrific stories from the Health Ombudsman’s report on poor quality of elderly hospital care, focusing on delayed discharges. But the data hailed from 2014/5, that’s a good two or three years after the Prime Minister’s Dementia Challenge, one year prior to the Prime Minister claiming he wanted the UK to be ‘the best country to have dementia in by 2020′ in a completely deluded manner, with social care funding on its knees.

The social model of disability correctly admonishes calling all people with dementia as ‘sufferers’ or ‘victims’, but rather holds them to be active participants in citizenship with fundamental human rights, such as a right to dignity. And yet another costly report has shown what we knew already – of people languishing stuck in hospital, who cannot be discharged. We knew all this prior to the last general election too. People have sadly suffered at the hands of the NHS and social care due to mismanagement.

Don’t get me wrong. Biomedical research is important. I followed the tweets from the British Geriatrics Society conference, and one of the tweets involved somebody with dementia who had entered into a coma due to a drug prescribed for delirium. This example shows why it does matter to diagnose some types of dementia (diffuse Lewy Body disease), and the need for clinicians to recognise delirium superimposed on dementia.

A cure for dementia before the onset of symptoms would be remarkable, especially for some rarer young people who face a near-certain likelihood of developing one of the strongly inherited dementias.

But we DO need to face facts, Dementia Awareness Week or otherwise, surely? If we’re ‘curing’ dementia really by focusing on a handful of manageable subtypes such as familial Alzheimer’s disease only, can we ‘solve’ inequitable delayed discharges too for an increasing number facing Jeremy Hunt’s NHS?

 

 

Call for ‘Dementia Rights Champions’

Dementiarights

Please use the form below if you would like to be considered to join Andy Tysoe and Cathrina Moore as the first “Dementia Rights Champions”. You will need to be able to deliver Dementia Rights information sessions, according to comprehensive guidance.

Rights are pervasive in all aspects of dementia life, for example in the right to dignity (to be in clean hospital clothes through an inpatient stay) or a right to a fair trial (to make a complaint against a care home if need be).

Dementia Rights involves public information sessions, lasting about 40-60 minutes, containing fun activities promoting a rights-based approach to dementia.

Main responsibilities include:

  • To organise your own volunteering in times and places that fit your availability.
  • To promote Dementia Rights throughout your own networks and communities.
  • To act as an ambassador for Dementia Rights, treating everyone with respect and dignity.

Dementia Rights is on Twitter, @DementiaRights.

 

What would you say to Dementia?

For Dementia Awareness Week on 15–21 May 2016, the Alzheimer’s Society are asking people to confront dementia head on by asking,

‘What would you say to Dementia?’

And I suppose my answer to that question is, actually, a question, and, that is:

‘What gives you the right to be considered on your own?’

I have no trouble in pretending that cats are human beings. I conceptually do not think of ‘dementia’ as a person, but I concede a common image is for dementia to be portrayed as an ‘unwanted travelling companion’, often converting a husband and wife relationship into a ménage-a-trois.

The metaphor is usually pushed to an extreme as one being on a ‘journey’ with dementia. When indeed I mentioned this to a particular celebrity campaigner living with dementia, he said ‘it’s the only journey you make where the ticket is definitely one-way and you don’t want to look after the ticket’.

As for this particular ‘journey’, we don’t currently have a national sense of care pathways. An advantage of care pathways according to the current literature would be to specify a set of basic needs for decision points from the point of diagnosis (even before) to death (and even beyond), which was sufficiently flexible to factor in inevitabilities such as local cuts to services.

But say you are talking to this mythical person with dementia. It is possible that the media have whipped you up into a state of anger and frustration into an emotion of ‘What do we need to do to make you go away?” This would be to embrace full-on the metaphor of warfare and battle. The problem with this approach is that you rarely hear of people ‘winning the war against dementia’.

And it has never been adequately explained what the end point of ‘defeating dementia’ is. For the 48 million people living with dementia around the planet, it might not be necessarily that drug cure that ‘stops dementia in its tracks’. There has already been some expectation management in that even if a drug were found to treat dementia ahead of schedule it might be too expensive to be made widely available – as has been the case for novel therapeutic drug agents for cancer.

‘Defeating dementia’ might alternatively be living with dementia but more easily given appropriate help. In the same way you might be given a scooter if you have mobility problems, you might be given a computer tablet which could remind you what day of the week it is, and what jobs you needed to, to make up for your cognitive disability. For this purpose, people with dementia must know the rights that attach to them, so they become active participants in citizenship in society, not “sufferers” or victims of a disease. It’s this reframing of the narrative to the ‘medical model’ to the ‘social model of disability’ that is much warranted, and, yes, let’s DO talk about the limitations of the ‘medical model’ even if some people have invested heavily in it.

I feel that is essential to consider the answer to the question, “What gives you the right to be considered alone?” When a diagnosis of dementia is closed to the person with that particular diagnosis, the actual diagnosis is being made to close friends and family too for whom the news involves a major life readjustment.

The problem with charities viewing things through only a ‘dementia lens’ is that this can get in the way of ‘seeing the person not the disease’. In other words, to raise awareness of dementia, you use dementia to form the identity of that person. And as such the power attaches, say in sympathy, respect, grants, or even media status, if a label of ‘dementia’ rather than ‘MCI’ (minor cognitive impairment) attaches to you.

And it is disingenuous to define someone by a condition even as important as dementia when people invariably live with other conditions. This is of course the massive problem in thinking that the ‘one drug cures all’ philosophy, in that drugs are invariably trialled on younger people with single pathologies not older people with multiple pathologies on numerous drugs.

And the other travelling companions on this ‘journey’ must be the ones closest to the persons with dementia, often unpaid members of immediate family who find them thrust into a strengthened rôle of caring and/or supporting. But understanding the emotions and value of those people are vital if we are to understand various particular issues with the ‘dementia journey’, in other words the loss of an ability to make a decision on your own, the possible need to move from home to a residential care setting, or the adjustment in ‘facing up’ to dementia as a terminal illness.

So I still think the answer to their question is my question. But I am particularly interested in the responses of those people currently living with dementia, and their carers, as I can more easily predict what some molecular biologists or people in charity or the pharmaceutical industry think. It can’t be said enough that they’re the real experts, so if you happen to see any as window dressing late in the afternoon of an expensive conference, do say something.

 

“Dementia Rights” will launch in Dementia Awareness Week 2016 (#DAW2016)

Dementiarights

The “Dementia Rights” project

 

In August 2015, the Mental Health Foundation published its long awaited report on dementia, rights and the social model of disability. In April 2016, the Alzheimer’s Disease International accepted unanimously a proposal from the Dementia Alliance International to prioritise rights based approaches in their policy on dementia.

 

The “Dementia Rights” project aims to embed through word of mouth and social action a rights based consciousness towards rights. International statutory instruments and their interpretation are important in their own right, but it is critical that rights are understood by people with dementia. Without this basic awareness, it is impossible for people with dementia to use their rights locally in society.

 

The aim of this project was to design an initiative building on the known success of ‘Dementia Friends’, launched in 2012 by the Alzheimer’s Society and Public Health England. Whilst this programme has been successful thus far in turning communication into action over basic awareness of dementia, to overcome stigma, prejudice and social isolation, the programme has its limitations. It is not intended principally for people themselves living with dementia. A programme called ‘Dementia Friends’ cannot be aimed mainly at people living with dementia. Furthermore, “Dementia Friends” does not refer to rights.

 

The rights are pivotal, however, not only internationally but in domestic jurisdictions. The “Dementia Rights” initiative is written in such a way as to cover the main principles of rights, touching on the social model of disability, but is not dependent on any particular domestic statutory instruments, which are in a state of continual renewal.

 

The information session is designed to take place between 45 and 60 minutes, to be given by a “Dementia Rights Champion” who is neither an expert in dementia nor in public law. It contains two interactive tasks designed to generate discussion.

 

I hope you get a chance to explore “Dementia Rights”, to be launched officially in Dementia Awareness Week #DAW2016 by the first Dementia Rights Champions.

 

 

 

 

 

 

 

The Dementia Society

May 2016

Bringing dementia rights home

 

A previous Government in 1997 launched a white paper consultation into the future of human rights legislation in England and Wales. This document called ‘Bringing rights home’ set out the then Government’s intention to bring onto the statute books a way in which parliament could make it straightforward for its citizens to bring human rights case, without petitioning Strasbourg directly. Access to the European Court of Human Rights in Strasbourg was considered too costly and time-consuming.

Unless England and Wales stop being signatories to the Council of Europe, which is another component of uncertainty from the current administration, citizens in England and Wales will still be able to petition Strasbourg directly, as has been made clear for some time by their Lordships specialising in human rights.

Britain, under a previous Conservative government, had a major influence in drafting up the current European Convention of Human Rights. The rights themselves, such as a right to be free from torture or degrading treatment are  pretty uncontroversial themselves. They are a huge factor in allowing citizens to hold their Governments to account. Under current legislation, the Human Rights Act 1998 in England and Wales gives citizens ‘rights’ against anyone carrying out a public sector function such as local authorities for breaches of human rights, and there are few sectors as important in this regard as health and social care.

“Dementia Rights” is a new initiative I have designed, which I intend to launch in Dementia Awareness Week. Dementia Rights, building on the success of “Dementia Friends”, sees dementia not from the perspective of someone who is ‘dementia friendly’ but from the person living with dementia and doubtless many other co-morbidities.

A right gives a person with dementia a license to do something, and these rights are currently legally enforceable through a number of routes. For example, the Equality and Human Rights Commission will see the occasional case of someone discriminated against on the grounds of living with dementia.

The logic is particularly relevant for someone living with a young onset dementia, that is a dementia which has shown itself before the age of 65. These tend to be dementias which are in the early presentations of some traditional late onset dementias, or late presentations of young adult or childhood conditions. They are not merely dementias which have been diagnosed early.

Such citizens tend to have young families or serious work commitments. They particularly need protection against unfair dismissal, that is dismissal for no good reason in no fair way, on the grounds of a disability. This is disability discrimination. The Equality Act (2010), which is not being abolished, indeed brought forward by a previous Labour government but in fact rooted in a consolidating act from previous Conservative instruments, defines dementia to be a disability. If it were to recognise formally a sustained cognitive impairment as a disability in keeping with their definition of a “disability” as “that which has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” in this context, it would be much easier to bring cases to employment tribunals for people being sacked due to a sustained cognitive impairment.

If the ‘Dementia Rights’ initiative works, run by Dementia Rights Champions, it will help to embed a rights based consciousness in society. I do not intend to pitch it at any commissioners, though we do need to have some accurate measures of its benefit and outcomes. I intend rather to make it freely available as ‘open source’ in the best spirit of Paul Mason’s work on post-capitalism.

Launching in ‘Dementia Awareness Week’, I hope this will bring an added, a much needed further dimension, to living with dementia apart from future cures and other (predominantly reductionist biochemical) research, ‘dementia friendly communities’ and a social care system on its knees.

‘Dementia rights’ consists of a number of activities designed to encourage a discussion about the unique importance of rights for people with dementia, to emphasise five key messages: these messages are that rights apply to everyone and ought not to be taken away, rights go together with responsibilities, dementia is in law a disability, it is possible to enforce legal rights. and a major function of human rights law is to protect against discrimination.

I am grateful to all members of the public who have expressed an interest in this initiative of mine. I think none of this would have been possible had it not been for the groundbreaking work of Dementia Alliance International working in a strategic alliance with Alzheimer’s Disease International, in particularly the leadership shown by Glenn Rees and Kate Swaffer.

I am, in addition, particularly grateful to two members of the Queen’s Counsel, in the legal profession, who have shared the five key messages. Rights can be restricted in a legal away, but as soon as you deny rights unfairly, such as denying a right to complain, a right to a care home reflecting your sexuality, or a right to culturally appropriate diet, you are on a slippery slope.

The rights based approach is not supposed to replace the medical approach of diagnosis and cure, but I feel has substantially more to offer the rehabilitation and enablement approach pervasive from the social model of disability. A correct diagnosis of dementia should be helpful to all recipients of that diagnosis, not an encumbrance, and I feel promotion of dementia rights locally as well as internationally is now essential for this. Call it ‘Bringing dementia rights home’ at last.

 

A quick word about my campaign ‘Dementia Rights’

Dementiarights

I intend to launch a campaign called ‘Dementia Rights’.

But I should like to say a few words.

I do not wish to give the impression that I am campaigning on behalf of people with dementia on this. This would be to overrule every instinct I have on this. I have always believed that people after a diagnosis of dementia need to be leading on campaigns themselves. What I have found a bit annoying is some people using people with dementia to further their own script. Like an authentic newsreader.

For this reason, I have decided to time the launch of this at an appropriate time in relation to the Dementia Alliance International (DAI). I think the primacy of their work is paramount. With Dementia Awareness Week in the UK coming up, I’d like to ensure that the spotlight is shining on the right targets. I will be supporting ‘Dementia Friends’ as a Dementia Friends champion as usual.

I part company from the ‘Dementia Friends’ initiative a bit in that I feel the campaign caters well people for people who do not have dementia, and unwittingly produces a ‘them against us’ situation. I find the word ‘friends’ a bit patronising, but I know no malice is intended. It reminds me of ‘Does he take sugar?’ – that’s all.

This morning I was asked to discuss about the use of the hashtag ‘#DementiaRights’ not from anyone I work with usually. The criticism is that human rights are universal and therefore should not be constrained for people with dementia. This is of course correct, and it is an argument I have made myself indeed. But on the other hand I do think for too long, as a person outside of the community of people living with dementia, that the rights of people with dementia have been somewhat ignored – take for example the primacy of the ‘dementia friendly’ (rather than ‘dementia inclusive’) approaches, or the inability to segregate carers’ rights from the rights of people living with dementia. I should like to emphasise that carers’ rights are extremely important too for distinct reasons.

I will not be flogging ‘Dementia rights’ to any commissioners. I will make the materials freely available for anyone to use. Money will not be involved in any way. I am very irritated as you know with dementia being exploited for commercial gain.

The material of ‘Dementia Rights’ will not be confined to any particular geographical jurisdiction.

The format of ‘Dementia Rights’ will be, like Dementia Friends, a public awareness session given by anyone. It will have five key themes, and will be built around various activities and an original analogy of mine to explain human rights.

The aim of this initiative is to bomb policy with rights-based advocacy, and to get people talking about dementia rights. I don’t have the infrastructure of Big Charity, or the resources, but never deny the good which can be done from small acorns, to corrupt a Margaret Mead quotation often used by DAI themselves.

“Sea hero quest” – adding signal or noise to research?

My tweet on this – including Hilary Evans’ excellent explanation – is as follows.

Sea Hero Quest was launched today by Alzheimers Research UK. It has been developed by London based studio Glitchers and follows a captain as he tries to recover his father’s lost memories. You navigate the boat but there’s no mini-map within the level, you’re given all the locations to visit at the start of the game from a map.

The link to the app is here.

Here’s a typical screenshot from the game.

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I downloaded the game for free onto my iPad. It was easy to get into – I quite liked the option also of not sharing the data from my experiments too, but the notion of contribution to a giant experiment through ‘gamification’ is also extremely appealing to many.

I really don’t see how X minutes of playing the game can equate to Y minutes of ‘traditional research’ – but I am not in the least bit bothered about that.

The game was not what I expected it to be. Searching for objects in a task in humans is well known to people who experiment with primates – it’s officially known as a spatial working memory task.

The ‘official’ line on the task is that it somehow taps into the function of the ‘hippocampus’ – a part of the brain near the ear, in the ‘temporal lobe’, so called because it looks like a sea horse (it is claimed) in brain sections. It’s a pretty robust finding since about the late 1970s that the hippocampus is one of the very first parts of the brain to be affected in Alzheimer’s disease.

Alzheimer’s disease is THE most common type of dementia. It strictly speaking is a syndrome of different diseases of varying causes, but typically clinically is manifest as problems early on in learning and memory.

A good example of this, in fact, is in the film ‘Still Alice’, where the person who develops dementia notices early on navigating for a jog around a university campus familiar to her. And indeed it’s a fairly consistent finding that spatial memory, and learning lists of things and names can be difficult for someone relatively newly diagnosed with Alzheimer’s disease.

This task has some validity from the animal literature. In rats swimming to submerged landmarks, the Morris water maze task, it’s well known that if you get rid of the hippocampus with physical destruction rats have real difficulty with this task.

Also, if you chemically manipulate the hippocampi of the rats’ brains with an agent which chemically blocks the way in which memory is laid down, known as ‘long term potentiation’, rats can’t do the task.

There are therefore different types of error – known as ‘between search’ and ‘within search’ errors.

Within-search errors were made if a participant returned to an already searched box; between-search errors occurred if a participant returned to a box that was already known to contain a target item.

There is a long and proud history of research into this, such as this paper.

The problem is – this is vastly to oversimplify the situation. If you extend the time window of the task, it no longer is a task of working memory, but more like a task of a ‘episodic’ memory for events. And the brain area really involved in spatial working memory has a large contribution from the frontal lobe, the part of the brain near the front. We know that this part of the brain tends to be affected later on in Alzheimer’s disease.

Still with me?

Well done.

There’s a problem also in the programmers’ use of the term ‘dementia’. Dementia is an umbrella term of well over 100 different conditions. Alzheimer’s disease is one of many conditions. But it is conceivable that other dementias may provide different patterns of behaviour on the task.

This is of course no bad thing – as ideally you should want to match up the different cognitive profiles of people playing the game with known diagnoses, such as likely normal ageing, or not.

But this is beyond the scope of the game. And a clear demarcation is made between playing the game for fun, and it NOT being used as a diagnosis of dementia.

But say you have problems in a different part of the brain, such as the parietal cortex. This part of the brain is involved in visual perception, so persons with the posterior cortical atrophy type of dementia might exhibit a different profile altogether.

And why this is relevant is all to do with how space is represented in the human brain.

Space which is allocentrically represented, i.e. objects in relation to each other, are more likely to be expressed in a cognitive map involving the hippocampus. On the other hand, space which is egocentrically related, i.e. related to YOU in space, is more likely to be involved in a map involving the parietal cortex.

As a summary of where these parts of the brain are, see this diagram.

brain

So – it’s likely that behavioural performance on the task will involve performances from a hotchpotch of people, including some people with undiagnosed dementia. There’ll be some people who do badly on the task who don’t have dementia, so might be needlessly worried.

On the other hand, the game is brilliant for people to feel as if they’re participating research, without leaving the comfort of their own iPad or iPhone. And it’s great branding for the people involved in its creation and as a media campaigning tool.

I think the task itself is not a good computerised task. I worked in the lab which developed CANTAB in Cambridge under Prof Trevor Robbins, so there’s a bit of a conflict of interest. I found the music quite irritating actually, which is not fatal for motivation. But I think there is a major motivational confound in this task, where you can simply get bored of it the longer you play it for, affecting performance.

The lack of instructions was potentially a good thing – in that it minimised the confound of language problems affecting task performance. There are also some groups of patients who might be rather oversensitive or insensitive to rewards of any sort – such as people who are impulsive narcissistic at one end, or people who are profoundly depressed at the other end.

It’s also not a good pure test of memory either – there’s a huge perceptual component, evidenced by the great graphics. Also, there is a strong attentional component.

The attentional component is quite interesting though. In 1979, a paper in the Science journal first put the attentional part of the brain on the map, the so-called ‘cholinergic’ chemical system – which is why people are so interested in drugs such as donepezil today (donepezil is an example of a cholinesterase inhibitor.)

I think what would be interesting is if all the hundreds of thousands or millions of performances could be put into a giant database, and some sort of Big Data analysis could be run on it to see if different patterns of performance could be fractionated out. What would THEN be interesting for Dr Hugo Spiers and colleagues from UCL would be then to match up these profiles with known ‘diagnoses’, such as early Alzheimer’s disease, ageing, posterior cortical atrophy.

But this would be to get into the mire of ethical research, research approval and valid consent, perhaps?

I don’t wish to paralyse the greatness of this game by overanalysis. Go and download it, and help dementia research! Well done to the Alzheimer’s Research UK for an excellent collaboration which is very interesting indeed.