Tag Archives: dementia friends

An emphasis on outcomes not process is now much needed for dementia

Today was a pretty disastrous day for me as a member of the army of million unpaid family carers. Yes, I merely ultimately burnt dinner for us which I had slaved for for hours.

But I am enormously grateful to be in a loving relationship where it can be hard work – and I will definitely  still miss it.

I am trained as an academic physician in dementia, with both a research and professional, and personal, interest in the subject. Just ask anyone who has known me well for the last 25 years or so.

As an unpaid carer, but one of many, I don’t feel the aggrandisement of the words ’empowerment’ and ‘engagement’ are what I particularly want, though I think these interrelated concepts, popular with professional grant applicants, are very important.

As not a member of the ‘conference class’, I do not in any way resent those with the power, influence or ‘deep pockets’ fronting yet again conferences where the greatest and good can exchange best practice with one another.

As an unpaid carer, I think what I really desire are “dignity”, “time” and “space”. Of course these are not words which trip off the tongue of professional wonks or conference organisers, as they suffer from the perceived lack of ‘measurable outcomes’.

The managerial adage ‘if you value it, measure it’ unfortunately comes with some operational baggage, ‘if you don’t value it, don’t measure it.” To say I was alarmed at the lack of ‘caring well’ in “The Well Pathway for Dementia”, despite the consultation events which undoubtedly were seen to happen, is a mild understatement.

I don’t care about myself, but I do think it’s a kick in the teeth to those who are, or who are concerned with, unpaid carers, paid carers with parlous employment rights, clinical nursing specialists providing high quality care (including in end of life and palliative care), respite care (day centres, for example), care at home, and so on.

At the start of this year, I was able to celebrate with close friends and colleagues the launch of my third book on dementia, published by Jessica Kingsley Publishers, entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

My first book “Living well with dementia: the importance of the person and the environment”, written around the NICE Quality Standard 30, was published in 2014, and won best health and social care book of the year award for the BMJ Book Awards in 2015.

My second book, “Living better with dementia: good practice and innovation for the future” published in 2015, the first of mine to be published by Jessica Kingsley Publishers, with main foreword by Kate Swaffer was the one where I confronted eating well, incontinence, GPS ‘tracking’, whole person care, delirium, ‘sporting memories’, antipsychotics and diversity, to name but a few.

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Thanks to all my close friends who came to support me on this important day for me. All the speakers and all the delegates attended entirely free of charge – it was an amazing afternoon, I thought.

This third (and not the last) book reviewed extremely well from a wide range of interested parties. In this book, I considered what I perceived to be what elements of the integrated care pathway might need to be present.

After the diagnosis of dementia, which also can come with a sense of relief that there finally exists an explanation for a whole series of ‘difficulties’, many people describe their journey through the NHS and social care as baffling, perplexing and stressful.

At my launch event, I was lucky to be joined about a number of great speakers, who don’t often tour the conference circuit despite being heavily involved with aspects of topics which interest me in dementia.

I’d like to thank Majidur Rahman, a friend of mine from when I did my MBA 2011-3. Majidur meticulously archived the event in the film below in his rôle at Aleph Productions. Whilst it comes in at about 200 minutes, I hope you agree it provides a wonderful, illustration of what can happen when people come together with individual concerns and hopes.

I’d also like to thank Kate Swaffer, who kindly gave up time to see us all and to lead the discussion at the end of the day. Kate is CEO of Dementia Alliance International, the partner group of Alzheimer’s Disease International. For me, too much of what is not good in commissioning dementia is the obsession with unsound metrics. For example, whether or not you change hearts or minds in newspaper articles by saying or not ‘dementia victims’ in large font as the headline might not be covered with the overall number of ‘Dementia Friends’.

And special thanks to Lisa Rodrigues CBE – personal friend, personal inspirational mentor, fierce advocate for health – who hosted the whole afternoon for me brilliantly.

I agree with the need for public education about dementia, articulated well in the only English dementia strategy ‘Living well with dementia’ (Department of Health, 2009). I do, however, think it inappropriate to equate a multi-million pound intensely professionally marketed product, where the scripting of sessions is not only inflexible but also intransigent, with a ‘social movement’.

Measuring the wrong outcome is of course, whisper it, a cardinal sin. The ‘impact’ of dementia rights is not how many placards you can hold up saying you ‘like rights’ (in no way reversing the closure of law centres which happened around the time of the David Cameron Dementia Challenge 2012). It would, however, be relevant whether the national government listens to professional concerns over the alleged offences in the United Nations Convention on Rights for People with Disabilities (UNCRPD). Or whether the Care Quality Commission cares seriously about abuses in degrading treatment, privacy or liberty as actionable abuses of human rights.

I would like to suggest something now deeply politically incorrect now. You do need ‘experts’ to help make the case that ‘supported decision making’ for dementia might be abuse of the UNCRPD. Such arguments could be and should be coming from DAI as they negotiate policy at the world stage viz United Nations or World Health Organization.

Likewise, the success of empowerment and engagement cannot be necessarily gauged by the number of local groups run, the number of policy groups ‘influenced’ or the number of harmonised facilitation sessions executed according to strict guidelines. This for me is a triumph of market-led process over outcomes leading to the potential of high quality care.

I hope that you can find time to listen to our video above. It wasn’t “commissioned”, or “budgeted for”, and does not have “outcomes” which need “evaluating”, but it does convey the notion that some things fall outside of the scope of a dementia industry.

I have no doubt about the ‘feel good factor’ for these annual conferences. And I think it’s terrific that the #Dementia2020 organisers went out of their way a number of free places available. But these are the same speakers with the same tired messages with the same glaring omissions – for me only, but everyone’s different.

Here’s to a happy time for me earlier this year.

 

Enjoy!

Go, figure.

 

@dr_shibley

 

 

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Time for the ‘little platoons’ of Dementia Friends to give way for something more impressive

JH DF

Although never in the Coalition agreement, the Big Society was the ‘next big thing’ of the David Cameron government. Cameron boasted, at the start of that period of forced political marriage, that he wished his tenure of office to be judged by three things: Afghanistan, the reduction of the deficit, and ‘the Big Society’.

The Big Society never achieved traction despite many many launches and relaunches, lunches and re-lunches. Rather like Cameron himself, the idea was tolerated rather than loved. The Big Society, Cameron admitted, was not supposed to be an original idea but a rebadging of inherently worthy elements of society: in other words, devolution of purpose to members of society, a reduction in the top-down power of the State, and ‘social action’.

Irrespective of the nauseating graphics on Twitter, actually, social action has been done to death, along with call to actions. The ideological priority placed better customer service with a leading high street brand as a high priority in the dementia friendly community than improved human rights of residents in care homes.

It was always said that dementia friendly communities was ‘more than health and social care’, but the result always was nearly ubiquitously to expunge discussion of health and social care needs of people with dementia and carers out of the equation. Social care was diabolically addressed in the original 2012 Prime Minister Dementia Challenge, and the rest is history.

Well, relatively recent history to boot plays this out. At the weekend, the NHS was controversially called a ‘humanitarian crisis’ by the Red Cross, but putting aside the fairness of equating the NHS to Syria or Yemen it is undeniable that the 800,000 or so people with dementia with their complex comorbidities are amongst those caught up in waiting for hours to become admitted to NHS hospitals and amongst those to be stuck in hospitals without prompt care packages.

And the NHS crisis is not simply a crisis of the NHS. It is a crisis of the whole system, especially housing and social care, and whilst these continue to be neglected compared to leading high street brands and social enterprises specialising in dementia friendly gimmickry, the dementia friendly new world cannot materialise.

At around 2011 and 2012, Jeremy Hughes CBE, nearly appointed CEO of the Alzheimer’s Society, made numerous noises along with then Tory Minister for Civil Society Nick Hurd MP about how “dementia friends”, a call to action in dementia awareness, was a good example of how the third sector (no longer to be called the ‘voluntary sector’), the State and the community could all work together. This was apparently ‘the Big Society in action’.

Ideologically, this came at the time of wishing to liberalise the NHS market, while personal budgets continued to be rolled out through the back door in social care policy, through the Health and Social Care Act (2012). The ideological machinery was set up to outsource and sell off bits of the State in delivering dementia care through the dreaded section 75.

Cameron, in rolling his sleeves up, is thought to have been inspired by the talk of ‘little platoons’ of that other great Conservative (other than him) Edmund Burke. This referred to an army of little busybodies up and down the land who would, say, be able to buy their local refuse collection services to run them.

And the Dementia Friends Champions, run by Angela Rippon CBE, were the modern equivalents of the little platoons. And Dementia Tsar, Prof Alistair Burns CBE, would promote Dementia Friends and latterly see to fruition a NHS Transformation Network which omitted caring well.

The lack of ‘caring well’ in the ‘living with dementia’ network is, make no mistake about it, a national disgrace. It is a very loud insult to the million or so unpaid family carers of dementia. It is a disgrace to respite care services. It is a disgrace to home care services. It is a disgrace to clinical specialist nurses, consistently and comprehensively given short shrift from the “dementia friendly community” despite robust agreement on their enormous clinical volume.

And, at the weekend, the new Conservative Prime Minister, Theresa May MP confirmed in both an article in the Sunday Telegraph and an interview with Sophy Ridge for Sky, that she wished to see a ‘sharing society’ rather than a ‘big society’. I quipped with Sir David Nicholson, former CEO of the NHS, that sharing of risk was of course what enabled the provision of universal health care – and David said in a tweet ‘that is at the heart of it’.

I tweeted that the shared society was if the work by Phillip Blond in the think tank Respublica, though to have heavily influenced the Big Society, had never happened.  Blond responded also back in a tweet that one couldn’t be so sure.

From what little we do know about May’s new vision, and we do know she doesn’t like giving a ‘running commentary’ on anything, the shared society is less about the rights of individuals but their collective responsibilities, in which the State might possibly intervene to fix injustices.

At the moment, there are thousands of people with dementia and carers suffering from poor or no care, completely untouched by the little platoons of the Dementia Friends brigade. The ‘Care Connect’ offering of 2012 in care homes never quite happened. The vision of someone with a forget-me-not badge would help out somebody fumbling with change in Sainsbury’s, or be able to make a new diagnosis of dementia in Tescos, did not quite happen (and good thing, many would argue, too).

Unfortunately, resource allocation in services is a zero sum gain, and the millions pumped into Dementia Friends have seen sacrifices elsewhere. The gravy train of Dementia Friends, with a less than enthusiastic ‘social movement’ some conscripted online out of desperation, needs to give way to the shared society of better State intervention on enhancing health and wellbeing in dementia, particularly through more and more highly trained social care practitioners, more AHPs, more Doctors and more specialist clinical nurses.

The Big Society is dead. The dementia ‘awareness’ has been a very good thing – but it is time for the Dementia Friends to make way too.

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

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[NB At the time of publication of this blogpost, I was a ‘Dementia Friends Champion. I am no longer due to my own substantial professional commitments.]

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.

 
 

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.)

 

 

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What do we about the efficacy of a social movement like "Dementia Friends"?

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Whether or not interventions and initiatives are worthwhile demands long term scrutiny. This is to make sure that initiatives such as ‘Dementia Friends‘, the provision of mass information sessions for the public on some basics about dementia, or accreditation schemes for dementia friendly communities aren’t done, ‘signed off’, and silently disposed of when it’s unclear what the outcomes have been.

It’s always been said that “Dementia Friends”, not ‘training’ but provision of information about dementia, unsuitable for anything higher than tier 1 (in comparison specialist healthcare staff might be trained to tier 3), is a ‘social movement’ “turning communication to action”. In other words, armed with your new knowledge of dementia, you might do something constructive in response.

I have never convinced of a reason for this programme, say, is in improved detection by you of someone slow with their change ahead of you in a shopping queue because of dementia. In fact, getting frustrated at an old person in front of you due to slowness in counting change might be a phenotype of outright ageism, irrespective of the presence of dementia, or simply bad manners. There has been an issue of how the programme might encourage you to behave a certain way towards ‘a person with dementia’. But that is to assume you can identify a person with dementia as if they were wearing a sticker on their forehead with the word “DEMENTIA” in big letters. Many disabilities, including dementia, are indeed invisible. This is akin to not judging a person as ‘normal’ who happens to have an indwelling catheter due to continence issues in multiple sclerosis.

The late Conservative health minister, J. Enoch Powell, famous for various other things too, always warned against the ‘numbers game’. In a break-out session for the Alzheimers Disease International conference yesterday, four speakers from four jurisdictions, including England, Japan, India and Australia, described their perception of what a ‘dementia friendly community’ might be. Kate Swaffer, Chair of Dementia Alliance International, emphasised how such a community should be seen as enabling and inclusive, citing Kiama as an example of good practice.

But other jurisdictions clearly lapsed into “the numbers game” – Japan cited a growing number of ‘dementia caravan volunteers’. the state of Kerala in India offered  100,000 “dementia volunteers”, and Jeremy Hughes, CEO of the Alzheimer’s Society, cited how the Dementia Friends “With a little help from your friends”, slickly produced by professionals, had garnered over a half of million  ‘hits’ on YouTube.

Particularly having met Gina at the Alzheimer’s Society conference in London last year, I can say I love the Dementia Friends video as a creative pitch.

 

But there is a moral imperative to see what these dementia programmes are doing, not least because the substantial cost of a public backed initiative might be at an opportunity cost to other equally meritorious approaches, such as improving rehabilitation services for dementia. Also, there is a fundamental wish, surely, to know whether the initiative has met any of its original ambitions.

The original English dementia strategy, “Living well with dementia”, was supposed to last five years, and indeed did so from 2009. There was never a renewal of this strategy. There was instead an overwhelmingly underwhelming ‘implementation plan’ for ‘Dementia 2020’ from the Department of Health, which did not address the Baroness Greengross’ stated wish to log the ‘lessons learnt’ from the successes and failures of the original strategy.

In this strategy, it was clearly stated that English dementia policy had to prioritise mitigation against stigma and prejudice towards dementia. Of course, there can be ‘unintended consequences’ of so-called ‘dementia awareness’ – a substantial number believe that queuing in a shopping queue called ‘dementia friendly checkout’ or parking in a ‘dementia friendly car parking space’ in fact markedly exacerbates stigma, and is potentially quite offensive.

Even a badge, rather than encouraging inclusion, can impose an unintended ‘them and us’ distinction.

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So the idea of “Dementia Friends”, or any other jurisdictional attempts to emulate this, being a ‘social movement’ is deserving of scrutiny, and should not glibly assumed.

Consider this. Say there are 2 million people who go out each to buy a Mars Bar, a homogeneous product, following an intense publicly funding marketing campaign set up by top quality marketing agencies. Could be said that 2 million purchases of Mars Bars was a social movement of Mars Bar friends – or simply an anticipated benefit of a mass marketing ‘top down’ broad sweep campaign?

The talks from the other jurisdictions indeed touched upon what might have been reasonable outcomes.

Say, for example, in Japan.

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And indeed there are a number of possible ways in which you could consider ‘Dementia Friends’ has been of benefit.

These might conceivably include:

  • reduction of stigma and prejudice in public perceptions
  • better knowledge of dementia and how dementia impacts on personal lives
  • uptake of ‘dementia friendly initiatives’ in quality of care, such as ‘dementia friendly hospital wards’
  • better ‘customer experience’ from high street businesses or corporates
  • better perceived ‘quality of life’ of people living with dementia and those closest to them
  • better awareness of possible symptoms of dementia thus promoting more timely diagnosis of dementia
  • increased confidence of people with dementia living independently (not in isolation) in the community.

It is not fair and appropriate to reduce this into two or three questions, say “how much more confident do you feel about dementia?”. People invariably don’t know the sample size, or any other thing about basic demographics of the sample.

I have noticed a huge drive in Dementia Friends, and in fairness other jurisdictions too, to play ‘the numbers game’. So, at first, you are seeking one million friends – and then you can make the website deliver more friends more easily – so the number increases for little further effort. But this is being accompanied by a marked shift in societal attitudes in dementia? It’s like my mass marketing of Mars Bars analogies.

A social movement for me also implies that the people delivering the information session have some intellectual investment in the process. This is not true of Dementia Friends, which specifically wants Dementia Friends Champions to deliver the same product as advertised – as indeed a Big Mac is the same whether you buy it in Doncaster or Dubai. The organisers of Dementia Friends clearly do not want Mars Bars accidentally turning into Snickers, by the addition of a few peanuts, by a few ‘rogue champions’.

One or two companies delivering a ‘better customer experience’ will be an expected outcome from those companies which have invested money in such a programme. The issue is whether this is replicable through means such as ‘secret shoppers’.

 

So, all in all, it is of vital importance how you actually measure the efficacy of the social movement. I indeed asked this as a general discussion point in the session chaired by Glenn Rees, the Chair of Alzheimer’s Disease International.

And of course there are a number of ways to tackle this question.

Jeremy Hughes mooted the idea of high quality survey data. I think this would be far superior to relying on a quantitative analysis of pledges from the pledge card. For a start, there is a problem with potentially low response rates for pledge cards. Secondly, whilst easy to codify, the information from the pledge cards are only as good as the quality of the pledges you can pick from in a multiple-choice fashion. For example, in my experience as a Dementia Friends Champion, I have learnt that many people want to ‘join dementia research’, as it gives them some agency and hope about dementia. And yet this is not a stated pledge. It does concern me how slow Dementia Friends has seen to be in working with NIHR in fostering links between the ‘Dementia Friends’ and ‘Join Dementia Research‘ initiatives?

Formal assessments do of course exist of the ‘success’ of social movements. But for the reasons I describe above actually identifying the outcome measures is itself tricky.

Take for example the ‘social value return on investment’ (SROI).

The key assumption of SROI analysis is that there is more to value creation than purely economic value, indeed the value creation process can be thought of as a continuum with purely economic value at one end, through to socio-economic somewhere in the middle, and social value at the other end. Economic value creation is the raison d’etre of most for-profit corporations (i.e. taking a product to service to market that has greater value than the original inputs and processes that were required to generate it), whereas social value is created when ‘resources, inputs, processes or policies are combined to generate improvements in the lives of individuals or society as a whole’.

Social value creation is a huge goal for the third sector in facilitating social inclusion and access for those that may be marginalised). However, unlike economic value, social value is difficult to quantify, varies according to the type of organisation involved in its creation and does not have a common unit of analysis (such as money) that enables it to be easily standardised and compared.

The current interest and enthusiasm for measuring social or program impact is not new. The impetus arguably came from the United States, especially from university social work departments and was embraced by both the community sector and government.

Social Movement Impact Theory (otherwise known as Outcome Theory) is a subcategory of social movement theory, and focuses on assessing the impacts that social movements have on society, as well as what factors might have led to those effects. It is relatively new, and was only introduced in 1975 with William Gamson’s book “The Strategy of Social Protest,” followed by Piven and Cloward’s book “Poor People’s Movements”.

Finding appropriate methods to use for studying the impacts of social movements is problematic in many ways, and is generally a large deterrent to scholars to study in the field. The first problem scholars ran into was defining “success” for social movements; the significance of this is that key stakeholders often have disagreements of what a movement’s goals are, and thus come to different conclusions about whether a movement has “succeeded.” Argos might have different outcomes in mind to Addenbrookes Hospital in Cambridge?

Other issues arise when one attempts to locate a movement’s impact in all arenas. Impacts are most often studied at the political level,and yet it has been proven that they have individual, cultural, institutional, and international effects as well. Is exporting an operational homogenous product the same as propagating a wider social movement?
The psychology of the individuals who participate in movements are normally profoundly affected. But do the 1.5 million ‘Dementia Friends’ feel any sense of connectedness to one another? One suspects not, especially if some have achieved ‘Dementia Friends’ status through a few minutes on a computer terminal in isolation.

Has Dementia Friends shifted quality of care or attitudes in care homes, for example? Has it shifted political attitudes to dementia which have historically been shaped by much political lobbying? One parsimoniously thinks not if the current Government wishes to shift emphasis now to diabetes, and has not even renewed post 2014 the English dementia strategy.

 

Inevitably within government there continues to be an interest in and application of techniques for program or project evaluation such as cost benefit analysis. And this from an utilitarian perspective makes complete sense – in terms of society’s assessment of ‘getting most bang for your buck’.

Lessons for Dementia Friends can also be usefully learnt from other arenas.

For example, an interesting example of an impact evaluation is provided in a report from a few years ago. This report was entitled “An evaluative framework for social, environmental and economic outcomes from community-based energy efficiency and renewable energy projects for Ashton Hayes, Cheshire March 2012″ , and was published from the nef (the new economics foundation).

Ashton Hayes is a rural village located just outside Chester. Their aim is to become the first carbon neutral village in England, through energy efficiency measures and carbon offsetting; by: ‘…encouraging everyone in their community to think about how their way of life affects their impact on climate change and to help people to understand how simple actions can make a big impact on carbon dioxide emissions to the atmosphere.”

The report helpfully discusses choice of indicators.

It was proposed that all stakeholders are often the best people to identify indicators, but a common mistake is to misinterpret what is meant by ‘measurable’. One should avoid the trap of using inappropriate indicators just because they are readily available; so, if the outcome is important, you will need to find a way to measure it.

Outcomes work also concedes that effect of some outcomes will last longer than others. Some outcomes depend on the activity continuing and some do not. For example, in helping someone to start a business, it is reasonable to expect the business to last for some time after your intervention. The difference between ‘benefits’ and ‘outcomes’ is therefore imperative in this context.  The outcomes of a campaign such as ‘Dementia Friends’ will be valid as a snapshot in one particular time.

I feel things will change say when people with dementia are genuinely considered as ‘equal and reciprocal partners’ in any relationship. For example, it should be an automatic given that dementia friendly communities include people living with dementia as paid consultants, not tokenistically ‘involved’.

Kate Swaffer successfully conveyed the sentiments behind this for Australia yesterday, for example.

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And I think that is the way things are heading now with the Alzheimer’s Disease International umbrella approach of inclusion and a strong ‘rights based approach’, which hopefully will now filter down to national agencies for implementation.

I feel that how ‘successful’ Dementia Friends has been, given the statement below when the initiative was first announced in November 2012, needs to be comprehensively examined.

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And ultimately Dementia Friends has to be much more than a successful, easily exportable, marketing campaign – it needs to deliver results on the ground. This is no different for the Alzheimer’s Society and the Government as it is for small social enterprises. The rules of the game must be equally applicable to all, otherwise it’s an “unfair market”.

Dementia enabling communities primarily needs to be for the benefit of people living with dementia and their closest.

Kate Swaffer put it succinctly as follows.

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The energy of 'Dementia Friends' needs to be sustained as we begin to build the future

I had a terrific time between 2 and 5 September 2015 in Ljubljana in Slovenia for the 25th Alzheimer Europe conference: the theme of the conference (“Conference”) was “Putting strategies and research into practice”.

Helga managed to catch me on September 1 to invite me to come as an observer to the AGM. I enjoyed meeting Jens for the first time. This was the first time I’d seen Jean Georges chair a meeting, and there wasn’t a peep of dissent!

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Dementia, fundamentally for me and many others, is not about the European market, but about the European people. And here it’s useful for me to see where our endeavours, nation states of the United Kingdom, fit into the rest of the world (Alzheimer Europe last week and Alzheimer’s Disease International in Australia in April 2014). A pervasive thread in the development of global policy, done more in an incremental than revolutionary way on the whole, has been the ‘featuring’ of people living with dementia and carers. It’s become clear to me that people with dementia and carers have developed autonomy as independent groups on the whole, in that their views cannot necessarily be considered to be the same. The language has shifted subtlety from ‘engagement’ to ‘leadership’.

In talking with many people around the world, it’s abundantly clear that there is no comparison with where we are now compared to a few years ago. This does not mean we still haven’t got a long way to go. An imminent problem in the English policy is the future of social care funding. In the previous few years, there has been a relentless decrease in social care funding, which has not been ringfenced. The health of the National Health Service itself is dependent on the overall wellbeing of the social care system. The policy of dementia friendly communities took us from a very low baseline, that is people with dementia not feeling part of their community.

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The fact that there has been such a huge sign up to ‘dementia friendly communities’ specification programme is a testament to the interest in the notion of dementia friendliness, but, as the Alzheimer’s Society will be the first to admit, this is not meant to be a tick box exercise but the start of a commitment to making a community ‘dementia friendly’. Such communities are meant to promote independent living, not isolation.

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Some of the implementation of this inevitably is treating people with dignity and respect which in themselves are cost neutral, but the onus is on local authorities and employers to meet obligations under the Equality Act (2010) as the Regulations of this Act make clear dementia is a disability. The announcement by Marc Wortmann, the CEO of Alzheimer’s Disease International (ADI), will aim for ADI to be a signatory to the United Nations Convention on Rights of People with Dementia is highly significant, not least because of the clarity of leadership of the ADI in Marc and Glenn Rees, but symptomatic of a healthy relationship between ADI and international bodies such as WHO and the UN. Alzheimer Europe have had a longstanding willingness to sign up to the UN Convention. These developments, whilst gradual, all act together to make equality a reality, giving people with dementia true ’empowerment’ as nation states become accountable for their behaviour.

I am incredibly curious as to what other nation states think of the UK’s ‘Dementia Friends’ programme. ‘Dementia Friends’ is a mechanism, having started off in the UK in England, by which any member of the general public can sign up for a short 45 minute information session containing activities to learn about some basics of dementia. You don’t need to have heard about dementia beforehand. It’s a programme which is run by volunteers who themselves get trained up from the ‘Dementia Friends Champions’ programme. Fundamentally, our international colleagues are very impressed, and some blatantly envious.

But the endpoint, as such, is not whether there are one million or 4 million dementia friends, but it is encouraging that more than one million ‘dementia friends’ exist in the UK. All dementia friends have been encouraged to turn their understanding into a simple pledge, and it doesn’t matter how large or small this pledge might be. It could, say, write to a local newspaper to complain about the language referring to a person living with dementia if deemed derogatory. The Dementia Friends campaign, which was clearly signposted in the 2009 England National Dementia Strategy “Living well with dementia”, has helped to turn around the giant supertanker that is prejudice and discrimination towards dementia.

I hate military analogies, but all this means that the “war against dementia” is over. It is not in fact a “war against dementia”, but a war against poor dementia care standards, or a war against bigoted prejudice against people living with dementia. There is so much that can be done through a national programme, but the fact that there has been one at all, which has run smoothly, is a huge achievement. To take further the military analogy one is reminded of ‘Mission accomplished’. The “Mission accomplished” speech by George Bush from 2003 is extremely well known. It arises from a large barrier shown on the USS Abraham Lincoln aircraft carrier stating ‘Mission accomplished’, at a time when the vast majority of casualties were yet to occur. We don’t have a working definition of ‘post diagnostic care’, but Geoff Huggins at the Conference presented an overview of the various EU workstreams involved.

One such work stream, for example, is in residential care.

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I’ve now heard Jeremy Hughes, CEO of the Alzheimer’s Society, speak about Dementia Friends several times now. And, a bit like giving the Dementia Friends sessions myself as a Champion, I always glean a tiny incremental addition every time.

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I recently reviewed diversity in dementia around the world in my thesis ‘Living better with dementia‘, with forewords by Kate Swaffer, Chris Roberts and Beth Britton. It’s quite easy to under-estimate how bad it can be for people with dementia living abroad, but I feel that we can learn from other jurisdictions and their awareness campaigns.

Here was the context in Morocco presented last week – an example of a very successful awareness campaign instead.

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On the other hand, I have reviewed abstracts where there’s been, say, a release of balloons signifying an ‘end to Alzheimer’s’, but one does wonder about the efficacy of such publicity stunts in making a real difference. That difference is whether people with dementia are accepted in society as equals and as valued citizens. I’ve been hugely impressed with developments from the Alzheimer’s Society Ireland, notably their ‘Listen, learn, link ‘ campaign (“#forgetthestigma”).

 

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And the ‘out of the shadows‘ campaigning theme in Ireland has been effective. This reflects the notion of some people living with dementia becoming ‘warehoused’ and given inappropriate antipsychotic medications, for example. At worst, we occasionally hear about physical restraint which clearly implicates human rights. At another level, it’s about people in society simply being able to say ‘I live with dementia’, and not then be the recipient of funny looks, or pity.  Helga Rohra, Chair of the European Working Group of People with Dementia. is another such person who has emphatically come ‘out of the shadows’.

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There has been a shift in tone and content in reporting on dementia in mainstream media too, I feel. The progress has been sluggish perhaps, but it’s evident. I have found myself finding stigmatising language in the headline of a very positive story about dementia many times.

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I have written many times on the potential weaknesses of the term ‘Dementia Friends’ in inadvertently and unintentionally promoting otherness and victimhood, but one can only assume that ‘Dementia Friends’ is consistent with the drive behind building ‘dementia friendly communities’. The narrative of ‘dementia friendly communities’ has definitely evolved further to ‘dementia inclusive communities’ or ‘dementia accessible communities’, but the term ‘dementia inclusives’ would certainly seem odd to many. I have likewise had qualms about ‘#dementiachallengers’, in that it’s unclear to me what the challenge is – although one challenge certainly is the lack of prioritisation of social care funding and training in dementia. Nonetheless, logically, one can only assume #dementiachallengers have a common bond in working on the Prime Minister’s Dementia Challenge.

 

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I have had the hundred or so ‘Dementia Friends’ I have ‘created’ produce very diverse pledges. I have been struck though at the genuineness and sincerity of these pledges though. These have included a salaried GP thinking about how to talk about dementia with patients more effectively, or a nutritionist in training to thinking about how to promote eating well with dementia on a hospital ward.

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I think changing the way people talk is going to take time – and the potential danger is of course preaching to the converted. I think tackling this might involve something as fundamental as making sure responsible reporting of any mental health issues, including dementia, are on journalism courses. Journalists pride themselves inevitably on their high degree of professionalism, so they shouldn’t be coming up with such facile headlines on such a regular basis.

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The Alzheimer’s Society are part of a wider international narrative about the creation of dementia friendly communities. As an aside, there is quite an interesting conversation to be had about whether residential care (including care homes) are part of the ‘community’ – and many strongly believe that they are indeed ‘community hubs’. The danger however for ‘Dementia Friends’ is that becoming a ‘Dementia Friend’ becomes a quick fix for private care providers to say staff are ‘trained’ in dementia. The Alzheimer’s Society are very clear that Dementia Friends is not ‘training’ for such a responsibility or rôle, and to imply that having signed up as a Dementia Friends means that you are of a sufficient standard in dementia to care in a care home is wrong. The current manual given to all Dementia Friends Champions states categorically that the Dementia Friends sessions are not ‘training’. I personally though would like to see the development of accessible training for people in caring roles at home or in residential homes, but the questions remain cost, equity, and quality. Possibly a ‘Dementia Friends Plus’ for professionals interested in an extended period of such service improvement might be part of the solution at least.

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The Alzheimer’s Society of course do not work in isolation. The voluntary sector as a whole is vital in ensuring support for people with dementia and carers, but should not be expected to be doing so in the context of relatively underfunded services.

It’s hard to ‘measure’ the ‘success’ of Dementia Friends, and indeed I have brought up the issues of relying on the ‘numbers game’ in proving an initiative’s worth.

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We do live in times where everything does have to be costed carefully. I think we do need to be thinking about having the system properly resourced at all levels, including acute hospitals, primary care, hospices, dementia advisors, dementia support workers and clinical nursing specialists, but all interventions have to be financially do-able as well as promoting health outcomes. I even said so in my own talk in Ljubljana (and thanks very much if you managed to make it there!)

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Dementia Friends in Canada – showing there is a "wrong type of education"

Chris Roberts, who was diagnosed with mixed vascular and Alzheimer’s dementia in his late 40s, made a very focused comment yesterday in conversation with Angela Rippon at the annual Alzheimer’s Show in London.

Chris argued that we can all ‘be aware’, but “awareness is very different from education”.

Coincidentally, I had been privately been discussing with Angela Rippon before the session how struck I am that people around the world found the Dementia Friends programme groundbreaking.

I am extremely proud to be a ‘Dementia Friends Champion’ in England. I run ‘Dementia Friends’ sessions for the general public to the best of my ability, and the programme, an initiative from the Alzheimer’s Society and Public Health England, is good fun to be involved with, for me.

There’ve been various attempts at raising awareness about dementia, some with varying degrees of success. I remember judging one abstract for the Alzheimer’s Disease International conference we’ve just had in April 2015, where one group had released some purple balloons in a town scale.

This reminds me of the famous Lynton Crosby strategy of the “dead cat”.

As Boris Johnson MP describes about this strategy, “”The key point, says my Australian friend, is that everyone will shout ‘Jeez, mate, there’s a dead cat on the table!’; in other words they will be talking about the dead cat, the thing you want them to talk about, and they will not be talking about the issue that has been causing you so much grief.”

According to Health Minister Rona Ambrose said the goal is to reduce stigma, “so that when (people with dementia) go to the bank or the corner store, people understand to be a little more patient.”

Watch the promotional video for yourself.

Charities have a long track record of being engaging professional advertising agencies to get their message across. Here in England, it was reported that, “PHE will invest up to £4 million a year until 2014/15 and expects significant additional funding from partnership marketing. “The scale of the challenge demands far greater ubiquity than we alone can fund,” a PHE spokeswoman said.”

The allocation of scarce resources in itself is an important policy question, in the light of cuts in social care, and accusations of a relatively impoverished infrastructure of dementia advisors, dementia support workers and clinical specialist nurses including Admiral nurses.

The presenter of the Canadian video walks into a darkly lit theatre, in keeping with the usual ‘shock doctrine’ tactics which are quite common in such pitches.

The presenter then says, “It’s repeating the same word or phrase. It’s repeating the same word or phrase. It’s repeating the same…”

But this is problematic territory, as the lines are presented as if to be ‘mildly amusing’. When this approach was last used at the Sunday Night at the Palladium, in a more extreme version, it went down like a lead balloon.

A comic there said: “I think I am losing my memory. Do you ever think you have Alzheimer’s? Do you do that thing when you walk into a room and go ‘what did I come into this room for?’ Open up a fridge, and go into soft focus. And close the fridge and go ‘what did I open the fridge for?’ Driving my car and thinking where am I going. I was looking for something in the fridge.”

And, after a few minutes, the comic added: “Have I done the Alzheimer’s joke?”

Two of the symptoms he presents are symptoms which could be reasonably expected in people with Alzheimer’s disease, the most common form of dementia globally, presenting in the majority with problems with learning and memory. These symptoms are word finding difficulties, or not knowing where you are.

But other symptoms include “not being dressed for the weather”, “pacing up and down”, or “even using expletives such as “shit”, according to the presenter”. These symptoms are certainly not common at all for people living with any type of dementia early on.

I have had many thousands of conversations with people living with dementia, and use of profanity by either party has been negligible.

Sometimes some persons with the behavioural variant of frontotemporal dementia can be disinhibited; so in cognitive testing you would occasionally get the reply ‘sun, sea, sex, sangria, suspenders’ when asking someone to name as many words as possible beginning with S. This has been reported elsewhere.

But the interesting aspect of this for me is how certain people with dementia can perform very well on this test known as “verbal fluency”, often at a superior level to people without dementia.

The presenter finally refers to some people not even uttering a word. Such mutism is not specific to dementia, and tends to, when it occurs, in far more progressed dementias, not in the vast majority of people with dementia; and bear in mind there are 47 million people living with dementia in the world currently, it is thought from the ADI recent work.

Helga Rohra, pioneer advocate as Chair of the European Persons with Dementia, herself living with dementia, refers specifically to the “faces of dementia”, rather than the ‘stages’ of dementia.

But this episode with the Canadian video shows that there can be a wrong type of education. The presenter then remarks on the need to know about dementia, hence the campaign of ‘Dementia Friends’ in Canada from the Alzheimer Society of Canada.

I am not particularly ‘angry’ that this has happened. It’s obvious to me that this initiative from Canada must be strongly supported by people wishing to break down stigma and discrimination towards our fellow citizens with dementia around the world.

I am a bit disappointed that all of this could have been easily avoided simply by involving a ‘focus group’ of people living with dementia at all stages of development of this project; and possibly this film is a result of a vague instruction to a marketing agency.

But I feel that it would be worth thinking about tweaking the video in subsequent revisions of the promotion of this programme, to provide a more accurate representation of dementia.

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Information sessions for dementia are only the 'tip of the iceberg'

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Getting complex innovation into practice is no mean feat, but models do exist which have stood the test of time.

A lot of getting systemic innovations off the ground has to be down to good ‘communication’ as indeed one model highlights. Influence, if not power, is critical for this.

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For example, you are possibly going to be hindered in spread widely good practice in clinical specialist nurses for dementia if they fail to reach key policy documents such as this one published recently for Wales?

I think of this in terms of ‘charity capture’, similar to other phenomena such as ‘regulatory capture‘ or ‘corporate capture‘.

Jeremy Hughes is due to give a talk at the Alzheimer’s Europe conference this year in Slovenia on the success of the ‘Dementia Friends’ programme: “The dementia friends campaign in the UK: a vital element for the development of a dementia-friendly society“. The “Dementia Friends programme” is considered to be “the biggest ever initiative to change people’s perceptions of dementia” (according to them).

The importance of this information session campaign cannot be understated. It is by no means a small achievement to get more than a million people knowing a bit more about the basics of dementia than otherwise. It was very clearly signposted in the 2009 English dementia strategy entitled, “Living well with dementia”; and the importance of sharing of information about dementia has been considered to be critically important to combat stigma and discrimination (as discussed in the Alzheimer’s Disease International 2012 report on stigma).

The information sessions certainly set the backdrop for the public being able to contribute. For example, the Alzheimer’s Research UK charity have just commenced a campaign to get people more involved in research.

And you don’t necessarily have to be living with one of the hundred or so dementias to be able to contribute to dementia research. The “Join Dementia Research” programme aims to link up members of the public with current research programmes to do with dementia.

I am about to run some further “Dementia Friends” sessions over the next few months, details here.

Date Address Session Link/URL
25 Jun 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here
02 Jul 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here
06 Aug 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here
27 Aug 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here

These are indeed some actions from people who’ve attended my information sessions.

  • Encourage friends and family to become Dementia Friends by LA
  • Looking for dementia activity in my local borough, the London Borough of Redbridge by DE
  • wear my badge and tell 5 friends about the dementia friends initiative by SH
  • I am meeting with carers I met on the course to offer support and advice about the things that helped me when I was caring for my mother by RP
  • Volunteer to help support someone with dementia by SM

I myself get exasperated by physicians who erroneously think that all people who receive a diagnosis of dementia are deemed automatically to have lost legal capacity; a ‘Dementia Friends’ programme is unlikely to touch that. I am bound to get exasperated at the marketing behind explanations of why Admiral Nurses have been discontinued in Hull, despite the overwhelming economic and clinical benefits of the Admiral Nurses model, but this is inevitably related to the quality of people manning clinical commissioning groups. Some members of CCGS have never even heard of specialist nurses for dementia, it turns out; this is indeed a very tragic indictment.

People living with dementia, it seems, are finally ‘having a say’. For example, the combined efforts of Dementia Alliance International, an international advocacy and support group, of by and exclusively for, people living with dementia, are remarkable.

There is a focus on dementia, and this can only be a good thing. But there is likewise an urgent need to ‘fix the broken social care system’, as indeed George McNamara rightly brought attention to most recently.

Information sessions on dementia are definitely a good thing. But they’re no replacement for a properly funded health and care service. They are, therefore, the start.

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Building 'cognitive ramps' for NHS Change Day

Andy Tysoe, @dementiaboy, is on a remarkably important mission.

“Hi, my name is Andy Tysoe and I’m a dementia nurse, based at the Countess of Chester Hospital and campaign lead for NHS Change Day #dementiaDO. Part of my clinical role is to help people affected by dementia through the challenge of an acute hospital stay and also to deliver dementia awareness sessions to the staff who work there.”

On Wednesday 11 March 2015, local activities in #NHSChangeDay will take place to recognise the positive changes that have resulted due to the actions people have taken.

And Andy includes a powerful pledge.

“We need to build our cognitive ramps next to physical ones to assist people with cognitive (thinking) disabilities into our public services and buildings, and for me, carers are a crucial part of those ramps not just during visiting time either!”

Here’s the rub.

“Parity of esteem” is currently a big deal in the NHS, to put mental health and physical health on an equal footing. As provided by NHS England,

“The Mandate from the Government to NHS England instructs us to put mental health on a par with physical health, and to close the health gap between people with mental health problems and the population as a whole. But this is only our starting point: we need to go further by delivering ‘parity of esteem’ and commissioning services that are truly person centered in a way that addresses some of the profound inequalities of access to high quality care in England.”

The English law has created this parity of esteem in discrimination offences too. This is from my book to be published by Jessica Kingsley Publishers in July 2015.

From my book

In a seminal article by “The Network Secrets of Great Change Agents” by Julie Battilana and Tiziana Casciaro in the Harvard Business Review, the authors set out the properties of people in networks and how they can effect change.

People living with dementia, caregivers, nurses, healthcare assistants, doctors, and assorted members of the community are all “actors” in a network.

Most social networks exhibit “clusterability”: that is, they comprise groups of individuals who are tightly connected to each other. This can be reinforced by powerful hierarchies, such as in the NHS.

The power of Andy Tysoe, I feel, as a “change agent”, comes from his ability to bridge the NHS with the people it purports to care for:

“People who bridged disconnected groups and individuals were more effective at implementing dramatic reforms, while those with cohesive networks were better at instituting minor changes.”

(Battiliana and Casciaro)

Implementation of a radical change within any organisation can be conceptualised as an exercise in “social influence”, defined as the alteration of an attitude or behavior by one actor in response to another actor’s actions.

Network research has converged upon the notion that the degree of “structural closure” in a network, defined as the extent to which an actor’s network contacts are connected to one another, has important implications for generating novel ideas and exercising social influence. People in positions of power and authority can are not the only people who are influential, sometimes.

Cohesive ties unfortunately can be a source of rigidity that hinders the coordination of complex organisational tasks.

I have been particularly impressed by how Andy has taken to Twitter to lead on his change. This plays on one of the fundamental features of networks. Consider, for example, in a phone network, where the primary transaction is making or receiving calls, anyone with a network phone number can call any other person with a network phone number.

There has been growing recognition in the literature too, that “size isn’t everything”. As regards this, one cannot but help to be impressed by Andy’s conduct with people he’s encountered. Network members can, indeed, develop a reputation for honesty, trustworthiness, and dependability.

This helps Andy see about initiatives in the wider community, such as ‘dementia friendly checkouts’.

dementia friendly till

In “The new era of thinking and practice in change and transformation” from NHSIQ, authors Helen Bevan and Steve Fairman propose characteristics of “The Edge”:

“The edge as a virtual place for building relationships and networks; this is about purposefully positioning change agents at the edge of the organisation, enabling them to interface more easily with others, both inside and outside of the organisation, simultaneously. From this perspective, we see change agents as hyperconnectors, building relationships with other change agents and innovators, utilising open innovation principles to make social connections, pulling knowledge into the organisation, making sense of it and sharing it to speed up change.

The edge as a way of being as a change agent; choosing as a leader of change to operate at ‘the edge’, leading through networks and social connection, looking outwards to the wider world of knowledge, relationships and networks as well as inwards, influencing though the processes of organisational life.”

One of Andy’s main missions is to make the navigation of a person with later stages of dementia more easy through the system, with the help of caregivers in the formulation of care plans. This is very much in keeping with the RCN/Carers Trust “Triangle of Care” (2013).

Andy, like me, is supporting “John’s Campaign“: “the right for carers (particularly family) to stay with a person with dementia if they are admitted to hospital – 24/7 if necessary.” (twitter @JohnCampaign)

A lot can go wrong if such a person with dementia is left bewildered in acute hospital, as the totemic video of “Barbara’s Story” shows.

Leading from the edge has parallels in other sectors. For example, Danone introduced “discovery learning” in business education. This “edgy” method was introduced to facilitate this voyage of self-discovery, exposing “to experiences that are surprising or challenging”

By being at “The Edge”, Andy is in an unique position to help with the aims of raising ‘dementia awareness’, on top of the current “Dementia Friends” initiative, in meeting outcomes of tier 1 of the Health Education England initiative.

This change leadership, of course, is all a far cry from Machiavelli; who is reputed to have famously said that it is better for leaders to be feared than to be loved.

In contrast, in summary, I strongly commend to you Andy Tysoe, for #NHSChangeDay 2015 (#DementiaDo) to bring about awareness of dementia, to support “John’s Campaign”, and to stop discrimination against people with dementia.

Reading

Bonetto, T. and Irwin, L. (2013), Danone Leading Edge program – a leadership odyssey, EFMD Excellence in Practice Awards 2013: Executive Summary.

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I've made 77 Dementia Friends. Another session today.

My attempts at making ‘Dementia Friends’ are very modest.

But my friend Chris Roberts (@mason4233) keeps on emphasising its quality not quantity.

I’ve made 77 Dementia Friends thus far.

Chris would say that “that’s 77 more people who know more about dementia than they did before.”

My “dashboard” is very low key, but I am just one very small cog in a giant ‘social movement’.

77S

Today I’m giving another information session at BPP Law School. All are welcome, but you do need to sign up in advance if you wish to attend.

There are also plans to achieve three million more “dementia friends” in the latest announcement from the Prime Minister about dementia.

Some of my slides for today’s information sessions (excluding the activities) are shown below.

Dementia Friends For publication.ppt

Dementia Friends For publication.ppt

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"It's possible to live well with dementia": a crucial message in @DementiaFriends

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.

 

This is the plucky group of persons living with dementia at the Alzheimer’s Disease International meeting in Puerto Rico in 2014.

That’s right. They’re not there as representatives of any organisation, but there on their own as individuals as members of the “Dementia Action Alliance”.

They happen to have received a diagnosis of dementia.

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.

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