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Can you live well with dementia and suffer at the same time?

First, read Kate Swaffer’s poem. “Who’s suffering?

When the media fires bullets of suffering in their magazines (quite literally), it is not clear who is the suffering by, what they’re suffering, how they’re suffering, when they’re suffering, and why they’re suffering.

Many readers suffer at this lack of clarity.

It’s pretty clear this narrative has got extremely distorted for no clear reason. What do the caring professions or the media have to gain by describing so much suffering?

And are people really suffering as purported?

Are there any randomised placebo-controlled drug trials where the relief of “suffering” in #dementia is a reported outcome?

Kate Swaffer (@KateSwaffer)’s poem conversely is a very helpful contribution, based on a personal experience of living well with a dementia.

“Rhetoric referring to Alzheimer’s disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease.”

So comment Beard and colleagues.

“The fact that the words Alzheimer’s disease conjure up images of a hideous, debilitating condition demonstrates that an Alzheimer’s diagnosis can be both “a stigmatizing label and a sentence”. When depicted as a ‘living death’, Alzheimer’s can have countless social-psychological consequences for those diagnosed. Within a medical model, the relatives of persons with dementia are ascribed the role of ‘caregiver’ with a focus on the associated stressors or ‘burden’. Subsequently, health promotion efforts have historiiccally positioned family members as the ‘second’ or ‘hidden’ victims.”

Of course, this discussion is not confined to Alzheimer’s disease.

It is not uncommon for people who love people living with advanced dementia to have a miserable time, and suffer from that.

Alzheimer’s disease is the most common type of ‘dementia’, a disease of the brain. It’s not just about memory, although memory problems can be a common feature of Alzheimer’s disease early on in particular.

There is more to the person than the dementia. It’s possible to live well with a dementia. And dementia is not necessarily associated with ageing.

But some critics of ‘living well with dementia’ have attacked the concept saying it is trying to airbrush or sanitise suffering. I hope that this is not a widespread belief, as it is not true.

Across a number of jurisdictions, the word ‘sufferer’, like ‘victim’, is avoided in common parlance and academic papers when referring to people getting on with their own lives.

The term ‘live well with dementia’ is not indeed to enforce a degree of pleasantry on the lives of people. Contentment is not compulsory. But the term conveys a notion which is a pure and simple reaction to people being written off on the receipt of a diagnosis of dementia.

We owe much of the current drive in policy to ‘person centred care’ from the seminal work of the late great Prof Tom Kitwood on personhood. Persons living with dementia have been classified as “empty shells”, a label that may contribute to the development of paternalistic attitudes and behaviors toward care.

Kitwood suggested that people with dementia are often depersonalized and actively disempowered.

Research into the “self” in dementia is important for a number of reasons. It is important to understand how people with dementia experience their sense of self because this has implications for how people cope with the illness, how they relate to others, including friends, family, and health professionals, and what any types of intervention might be appropriate for them.

One person, interviewed by Wendy Hulko, described the experience as “hellish”.

But it turned out that this word was chosen partly out of word finding difficulties.

“Well, having um a difficulty coming out with the right words for example or phrases or um having difficulty with uh numbers and um dates, times, um having difficulty coming up with um, difficulty um, coming up with just a common expression uh, or um even words that are very frequently used by anyone without the disease and um having difficulty coming up with just ordinary expressions…”

Several of the participants dismissed the significance of having dementia, some focusing on the lack of impact it had on their lives. Several of the participants tolerated dementia, noting the inconvenience it caused and downplaying the negativity associated with it.

Despite extremely powerful national advocacy organisations founded over a quarter century ago in the United States and the United Kingdom, the voice of people with all forms of dementia has been surprisingly slow to emerge.

A recent exception to this has been the Dementia Alliance International.

The medical model has unintentionally forced a narrative in the media which does present people living with dementia in the positive light. Such ‘ringfencing’ of the person with dementia positions them as withdrawing from social life rather than considering how their social roles may have been withdrawn from them, which demotes them to ‘patient’ or ‘dementia sufferer’.

Such biomedical reductionism, arguably, can, therefore, create additional obstacles for diagnosed individuals and their families.

People with dementia, like all of us, undoubtedly have “rough spots” along an individualistic path of dementia, but the person is more important than the diagnosis as reflected in strategies for circumventing the rough spots.

There are typically personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations.

A number of devices can be used cognitive aids, made various modifications, garnered assistance from others’ engagement, akin to how people like me live with physical disability.

And often the language itself is intensely stigmatising.

Take for example this example by Dupuis and colleagues.

Such current language and discussion around “challenging behaviours” have the effect of blaming persons with dementia for behaviors and labeled persons as violent, aggressive, disruptive, challenging and so forth. This was hurtful and stigmatising and did not reflect the meanings of the actions of persons with dementia.

stigmatising language

Conversely, it is quite often – and incredibly politically incorrect to say so – a failure by the care or support network to understand communication by a person with dementia amidst intense frustration.

Sarah Lamb notes at the beginning of this year that the current North American “successful ageing” movement offers a particular normative model of how to age well, one tied to specific notions of individualist personhood emphasising independence, productivity, self-maintenance, and the individual self as project.

However, Lamb concludes that the “successful ageing” narrative “might do well to come to better terms with conditions of human transience and decline, so that not all situations of dependence, debility and even mortality in late life will be viewed and experienced as “failures” in living well.”

This thought is bound to raise eyebrows.

Frank

An emerging political approach suggest that individuals with dementia are viewed as having transgressed “core cultural values—productivity, autonomy, self-control, cleanliness—and these failures damage the ‘victim’s’ status as an adult, and indeed, full humanity” (Herskovits, 1995: 153).

In articulating a “political” model of dementia, Susan M. Behuniak suggests that one is inviting very different meanings:

“everything from absolute control over the individual to a total lack of public policy, from an emphasis on individual rights to that of social responsibility, and from laws that draw absolute lines to those that accommodate shades of grey.”

Although dementia is not traditionally viewed as a power question but as a medical condition, power in its most traditional of formulations can be seen when debates arise over who  should decide matters involving the individual with dementia.

This is, I feel, also an issue when we talk about a ‘carer’ or ‘support’ for a person with dementia. Whilst not as unsubtle as the word ‘sufferer’, there is an implicit power relationship there for me.

Chris Roberts [@mason4233], one of the @DementiaFriends, himself a card-carrying member of the ‘living well with dementia’ club has often remarked as follows:

Roberts

So it is possible to suffer and live well with dementia.

But once you’ve met one person with dementia, you’ve met only one person with dementia.

But hold on.

Carly Findlay, like Chris and Kate, also puts it beautifully, this time writing from Melbourne about “ichthyosis“.

In her piece, “I get told I suffer… I don’t suffer.”

Ask others for their opinion if possible, or those closest to them.

It’s very important that no views are simply shouted down, particularly since it will be an important strand of the English dementia strategy  (probably from next year.)

 

 

Further reading

Herskovits, E. (1995). Struggling over subjectivity: Debates about the ‘self

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Meeting other people living with posterior cortical atrophy

Even The Man Who Mistook His Wife for a Hat, from Oliver Sacks’ famous book, has since been speculated to have suffered from posterior cortical atrophy (PCA).

A dementia is not a natural part of ageing.

Dementia is caused by diseases of the brain.

It’s not just about losing your memory.

It’s possible to live well with dementia.

There’s more to a person than the dementia.

Sue Stephen, one of the founding members of the Dementia Alliance International (DAI), spoke about how she came to be diagnosed with PCA.

This is one of the latest additions on their blog, which I strongly recommend.  The DAI is an unique group of individuals with a strong sense of solidarity, who live with one of the various types of dementia.

“I had been noticing myself for the last few years that I was having visual issues… very bad glaring.. when I tried to read..”

She put it down to stress, but she still went ‘to get [my] eyes tested.’

And this went on for a few years. Interestingly, she reports this delay in diagnosis as rather typical for many people finding a diagnosis of PCA.

Tests for dementia of the Alzheimer type, typically initially shown up by problems in short term learning and memory, were negative.

When she was eventually given a diagnosis, she was told, “That’s it. There’s nothing I can do. Here’s a prescription for Aricept. See you in six months.”

But she described being shocked, and she had no idea what PCA is/was.

“I lost all certainty in my life. How do I make decisions in my life?”

She then sat on her month doing ‘research’, but reported ‘three wonderful things’ which came out of her research.

She found a list of symptoms which matched what she had been experiencing. “That was really good”. This enabled her to see her GP who then went referred her onto more suitable specific tests, confirming the diagnosis.

That’s one of the slight paradoxes about the way we approach a fellow citizen of ours living with a dementia. Nobody wants to be defined by any medical conditions they live with. They do not wish (rightly) to consider themselves as a collection of diagnoses.

But it is often reported by people living with conditions how it can be both a blessing to know what might happen but also a burden to know something might happen, with this information resulting from a clinical diagnosis.

She then reported discovering the work of Sir Terry Pratchett, who is living well with PCA, still writing books.

A third thing which she reports is finding a group of people on Facebook of people with posterior cortical atrophy. It’s a closed group where people can share in private “scenarios”.

“I could see in the future what symptoms might be. I look at symptoms, and I think if this happened to me, what could I do now to help?”

Stephen reports sharing these stories really helped.

Terry Pratchett went to see other people living with posterior cortical atrophy in 2010, a form of dementia.

Pratchett is an example of an individual who has shown that it is possible to live well with dementia.

Pratchett admitted he was apprehensive about the meeting, as he said it was like ‘seeing into the future’.

One person in the meeting, “Anything coming through the postbox, I can’t read. Susan has to do everything from cutting my nails to putting my shoes on. This disease.. or whatever you call it, changes your perspective.”

“It didn’t happen – it evolved.”

Pratchett though admitted despite his fears he enjoyed the meeting.

“I can see why people enjoy meeting up”

He had dinner with Graham Doggett, who is an 70 year-old author, and academic who has written books about quantum chemistry, and his wife.

“Susan is the gardener. If I help her, I can never find the wretched branches in the air to prune. They disappear.”

“I was doing computing since 1959. That’s gone.”

“I used to play piano up to grade 7. Gone.”

“Reading, writing, gone gone”.

When the term ‘living well with dementia’, one of the main disclaimers on that is that the person living with one of the dementias will have their life before to compare their experience to.

And this is bound to impact upon one’s own personal perception of living with dementia. Unless you bother to find out about the past of a person, in relation to his environment, you will not be able to understand his or her world.

The symptoms of PCA can vary from one person to the next and can change as the condition progresses.

The most common symptoms are consistent with damage to the part of the brain at the back of the head, an area responsible for processing visual information.

Consistent with this process are slowly developing difficulties illustrating its slow and progressive nature due to a disease of the brain.

Now you’re even able to follow it using sophisticated ‘imaging’ of the brain.

PCA imaging

These difficulties include visual tasks such as reading a line of text, judging distances, and  distinguishing between moving objects and stationary objects.

Other symptoms include an inability to perceive more than one object at a time, disorientation, and difficulty maoneuvering, identifying, and using tools or common objects.

Some people can experience hallucinations.

Yet further symptoms can include difficulty performing mathematical calculations or spelling, and many people with PCA experience anxiety, possibly because they know something is wrong.

In the early stages of PCA, most people do not have markedly reduced memory, but memory can be affected in later stages.

This illustrates how this particular dementia is not just about memory.

Age of onset is typically 50-65, demonstrating why dementia is not simply about ageing.

Both Stephen and Pratchett demonstrate by a country mile while there are more to people than their dementias.

If you’d like to find more about dementia, you can do a short 45 minute session close to where you live in England (and now in other parts of the UK). The initiative is run by the Alzheimer’s Society, but is a Public Health England initiative. To find out more about this initiative called “Dementia Friends”, please go to their website.

There’s more to this initiative than the badge you’ll receive in the process, but this initiative is all about improving understanding in the general population about the dementias. I hope you will wish to learn more.

People with PCA are are at risk of being let down by ‘traditional dementia support groups’.

That is partly because they are younger and face different challenges, and partly because the activities offered in day centres  puzzles, large-font books—are visual and thus actively unhelpful for people with PCA.

PCA is not new to the research community.

Already in 1902, the Czech psychiatrist Arnold Pick mentioned a woman’s inability to see and grab a lit candle held in front of her face in his essay “Ueber eine eigenthuemliche sehstoerung senile dementer,” Jahrbuecher f. Psychiatrie u. Neurol., see excerpt.

Several attempts at defining criteria for diagnosis exist.

The neurologist Frank Benson at the University of California, Los Angeles, coined the term while describing the pattern of symptoms in five patients (Benson et al., 1988).

Later, Mario Mendez, also of University of California and San Francisco proposed clinical diagnostic criteria arguing that PCA is its own syndrome, not simply Alzheimer’s disease with visual symptoms (Mendez et al., 2002).

The English dementia strategy is mindful of the needs to develop communities supportive of the needs of people living with PCA, of the need for high quality research research into PCA, and to think how people living with PCA can be best supported professionally and personally.

It’s not only people with posterior cortical atrophy who experience problems with vision, however. This is very important to be aware of.

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Social stigma, music and living well with dementia

There are 800,000 people living with dementia in the UK, it is thought.

There is no cure at the moment.

“Attitudes are changing. The old stigma is being replaced by the recognition that people with the disease can be helped.”

Later on, John Humphrys spoke this morning to a number of clinicians involved in managing persons with dementia.

The package begins with an initiative called ‘Singing for the brain’.

Singing for the Brain is a service provided by Alzheimer’s Society which uses singing to bring people together in a friendly and stimulating social environment.

The power of music, especially singing, to unlock memories and kickstart the grey matter is an increasingly key feature of dementia care. It seems to reach parts of the damaged brain in ways other forms of communication cannot.

Organisations such as Music for Life, Lost Chord, Golden Oldies and Live Music have also improved accessibility live musicians, both professional and amateur, most of them trained to deal with the special needs of an elderly, memory-impaired audience.

A nice overview of some of these initiatives is given on the Age UK website.

The way in which the brain might do this is indeed interesting.

Results from Petra Janata (1999) suggest that the dorsal medial prefrontal cortex (MPFC) associates music and memories when we experience emotionally salient episodic memories that are triggered by familiar songs from our personal past.

MPFC acted in concert with lateral prefrontal and posterior cortices both in terms of tonality tracking and overall responsiveness to familiar and autobiographically salient songs.

The MPFC is right at the front of the brain.

F1.large

My interpretation using the “bookcase analogy” of “Dementia Friends” is that while the bookcase representing your memories for events is shaking this bookshelf representing memories triggered by music is unaffected.

It’s virtually the same as the bookcase responsible for sporting memories, in my view of things.

I wonder if ability to reactive sporting memories is correlated with ability to reactivate music memories?

This would explain the efficacy of this approach to living well with dementia.

We not only have to face the reality of the scope of people living with dementia in society.

But as Humphrys articulates in his item.

“Part of it is how society is set up to respond to people who look confused… instead of reacting in a fearful way, we are thinking in terms of how to help such people”, so comments Dr Andrew Crombie from  South West London and St George’s Mental Health NHS Trust.

You can listen to the whole of the presentation by John Humphrys – for one week only from the date of this blogpost – on the BBC iPlayer.

Play from about 1 hr 34 mins in on this page.

Social stigma is the extreme disapproval of (or discontent with) a person or group on socially characteristic grounds that are perceived, and serve to distinguish them, from other members of a society. Stigma may then be affixed to such a person, by the greater society, who differs from their cultural norms.

Social stigma can result from the perception (rightly or wrongly) of mental illness, physical disabilities, diseases such as leprosy (see leprosy stigma), illegitimacy, sexual orientation, gender identity, skin tone, education, nationality, ethnicity, ideology, religion (or lack of religion[3][4]) or criminality. Attributes associated with social stigma often vary depending on the geopolitical and corresponding sociopolitical contexts employed by society, in different parts of the world.

According to Goffman in “Stigma: Notes on the Management of Spoiled Identity”, there are three forms of social stigma:

  • Overt or external signs, such as scars
  • Deviations in personal traits, including forms of medical conditions
  • “Tribal stigmas” are traits, imagined or real, of ethnic group, nationality, or of religion that is deemed to be a deviation from the prevailing normative ethnicity, nationality or religion.

Prof Alistair Burns is the National Clinical Lead for dementia for NHS England, and was interviewed by John Humphrys this morning.

“You have highlighted very well in the discussions today and yesterday .. about something which we hear much more of now, and that is: people can live well with dementia. On the interview yesterday, we heard from Linda who felt she was very supported by her friends yesterday, and you said that when you interviewed Grace she felt normal.”

Humphrys was concerned that this was only representative of people living with dementia in the earliest stages.

Burns said, “There are many things that we can do, whatever the stage of dementia.”

“If we look at person-centred care, that is treating people as individuals we’ve heard from ‘Singing for the brain’ and ‘Life Story Work’ can bring people together.”

And have we been doing this successfully thus far?

“It’s fair to say that there has been pockets of excellent work being done around the country.. And one of the things which we must do is to encourage people to do and to learn from areas which are doing well like the example we saw yesterday, and like the example we saw today.”

Humphrys then went on to probe Burns much more about the stigma.

“We know that, from surveys of people for people above the age of 55, dementia is the most feared disease, much more than, say, stroke, heart disease or cancer.”

“There is something about the stigma. What we have seen is a lessening of the stigma, things like ‘Dementia Friends‘, working with schools, and getting ideas into schools.”

Humphrys proposed that it is necessary was to get rid of the idea that there was something about dementia that is “shaming”.

“What you got yesterday from today and yesterday was that people felt normal and supported. But I hear from my own clinic that, experiences where once people receive a diagnosis of dementia, others cross the street.”

“And trying to wrestle that is important.”

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My personal experience of an introductory day to 'Dementia Friends' Champions

OK it’s not heaven on earth – but Kentish Town London does have some merits I suppose.

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To say that I am passionate about the dementia policy in England is an understatement.

Throwing forward, I believe living well with dementia is a crucial policy plank (here’s my article in ‘ETHOS journal’), for which service provision needs a turbo boost through innovation (here’s my article co-written in Health Services Journal).

“Dementia Friends” in reality means rocking up in a venue somewhere near you for about 45 minutes to learn something about the dementias.

Once you sign up on their website, the experience is also backed up by an useful non-public website containing details of training, pre-training materials, and help on how to promote sessions. You can also provide on that website precise details of any ‘Dementia Friends’ information sessions that you run in due course.

I had known of this initiative mainly through Twitter, where I am very active. I find the twitter thread of @DementiaFriends interesting.

Even I’ve been known to get involved in a bit of mass hysteria myself:

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I possibly signed up despite of the substantial interest in the media and social media, what psychoanalysts might call an “abreaction”. There’s a large part of me which feels that I do not need 45 minutes on dementia, having studied it for my much of my final undergraduate year at Cambridge, done my Ph.D., written papers such as this (one of which even appears in the current chapter on dementia in the Oxford Textbook of Medicine), written book chapters on it (which as this one which appears in a well known book on younger onset dementia), and even written a book on living well with dementia.

But Prof Alistair Burns is a Dementia Friend – and he’s the clinical lead for dementia in England.

I went out of curiosity to see how Public Health England had joined forces with the Alzheimer’s Society. I must admit that I am intensely loyal to the whole third sector for dementias, including other charities such as the Joseph Rowntree Foundation, Young Dementia UK, Alzheimer’s BRACE, and Dementia UK.

I have my own particular agendas, such as a proper care system for England, with the provision of specialist nurses such as Admiral Nurses. I think some of the English policy is intensely complicated, best reserved for those who know what they’re talking about – especially people currently living with dementia and all carers including unpaid caregivers.

I personally think the name ‘dementia friendly communities‘ is ill conceived, but the ethos of having inclusive communities, well designed environments and ways of making life easier for people with certain thinking problems (such as memory aids, good signage) highly attractive. It would be unfair in my view for this construct to be engulfed in cynicism, when the fundamental idea is likely to be a meritorious one.

But I don’t think Dementia Friends competes with any of that, and one must be mindful of the gap society had of awareness of dementia.

This gap is still enormous.

And the aim is for people – not just Pharma – to be interested in dementia. These are real people with their own lives, not merely ‘potential subjects for drug trials’ (worthy that the cause of finding an effective symptomatic treatment or even cure might be potentially). But these are people living in the now – take for example the Dementia Alliance International, persons with dementia with beliefs, concerns and expectations of their own like the rest of us.

Only at London Olympia at the “Alzheimer’s Show” [and it is very well I am not a fan of such events which I have previously called “trade shows”], the other week, I presented at London Olympia for my ‘Meet the author session’, arranged on the kind invitation of various people to whom I remain very grateful.

Meet the author

At “The Alzheimer’s Show”, I met within the space of ten minutes a lady newly diagnosed with vascular dementia who did not intend to tell anyone of her diagnosis, and one person married to someone with probable dementia of the Alzheimer type who did not even tell his friends for three years.

It’s a rather badly articulated slogan but the saying ‘no decision made about me without me’ I think is particularly important for dementia.

These are two real (without warning) discussion points from the floor.

“Are people with dementia actually involved with any of the sessions?”

Yes: in fact my pal Chris Roberts (@mason4233) in Wales delivers his Dementia Friends sessions word-perfect for 45 minutes, without telling his audience that he himself lives well with dementia until the very end. Chris tells me this dispels, visibly, preconceived prejudices from his audience members. Chris blogs regularly on his blog, and has written for the ‘Dementia Friends’ blog.

“Why should people with dementia be given special elevated status compared to any other medical condition?”

It’s a difficult one. Some people believe that with dementias people will easily ‘snap out of it’ ‘if they pull themselves together’. This is completely at odds with one of the learning points that dementia is chronic and progressive. And of course people in the real world – viz CCG commissioners – have to decide how much they wish to prioritise dementia ahead of, instead of, etc. other medical conditions such as schizophrenia. But people living with dementia can present with known problems such as forgetting their pin number, and therefore it’s not actually a case about giving people with dementia an ‘elevated status’, but getting them up as individuals to be expected from anyone. Although it’s motherhood and apple pie, it’s very difficult to find, whatever the motive, the intention of dementia friendly high street banking fundamentally objectionable.

Dementia Friends Champions become rehearsed in the programme at one-day sessions across England. What happens is that you watch videos on their website, sign up for a day (where you get to take part in a Dementia Friends session) and then attend the session somewhere close to where you live habitually.

The sessions are run all over England at regular frequency. You sign up for a session, then you get an email quickly afterwards. You go to the meeting.

My meeting started on time. I am physically disabled, so I was grateful for easy access to the venue in Voluntary Action Camden (I could use the lift).

One of the things some of us mean-minded people pick holes in is whether the venue itself might be dementia-friendly. TICK.

I thought so.

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The group dynamics worked really well.

My group consisted of interesting people, all ‘realistic’ in their expectations of shifting the Titanic of messaging of negative memes in the media. Many of my group were particularly interested in social equity, fairness and justice, reading between the lines.

I particularly enjoyed speaking with one delegate who is a NHS consultant in psychiatry. We went through pleasant niceties of what he was examined on in his professional membership exams (in his case the difference between schizophrenia and drug-induced psychosis). But he was great to chat to during the day.

I bored him to death with my example of persons with dementia putting numerous teaspoons of sugar in their cups of tea, on rare occasions, due to ‘utilisation behaviour’, a particular predilection for sweet foods since the onset of dementia, or cognitive estimates problem, a very niche area of cognitive neuropsychology for both of us. But this was simply in an activity on making tea where such private chit-chat was irrelevant; the actual session as delivered, on how to make a cup of tea, was far superior than the two hour version I did in a workshop for my MBA in that well known method known to managers: “process mapping“.

The whole day was presented by Hannah Piekarski (@HannahPiekarski), Regional Volunteering Support Officer for the London and South East region for “Dementia Friends.

I’ve sat through more presentations than you’ve had hot dinners, but the standard of the presentation was excellent. Although the presenter clearly had a corpus of statements to make, the presentation was not contrived at all, and the audience had plenty of opportunity to ask questions at points during the day. The presenter evidently knew what she was doing, and was a very good representative of the Dementia Friends programme. She gave her own ‘Dementia Friends’ session which the group of about twenty found faultless.

Hannah even ran a session after the lunch break on what makes a BAD presentation.

Here are my scrappy notes which I took – and please don’t take this to be representative of the actual discussion of what makes a bad presentation which we had in our group.

PRESENTATION

I SO wish some of my lecturers (including Readers and Professors) had been to Hannah’s session on generic skills in presentations. Whatever you do after ‘Dementia Friends Champions’ day, there’s no doubt that such a session is really useful across various sectors including law and medicine.

You don’t really have to take notes as it’s all fundamentally in their well laid out handbook.

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The day was run with the purpose of not giving you tedious crap on how to run a session. But it was furnished with many useful pointers. For example, I learnt of possible venues such as a local library, church halls, and community centres.

Actually, I have in mind to ask Shahban Aziz, CEO of BPP Students, Prof Peter Crisp (Professor of Law at BPP Law School) and Prof Carl Lygo (also Professor of Law at BPP Law School) whether I might run dementia friend sessions at this law school which I attended for my pre-solicitor training. I’ve always had a bit of a discomfort that lawyers are not really given any introduction to dealing with people with dementia, other than professional regulatory considerations or in direct dealings with the law such as mental capacity? I think it’d be great if law students had a basic working knowledge of what dementias are.

It was nice for me to get out of my flat, and meet a range of people. These people ranged from other people in the third sector, for example the Dementia Action Alliance. They bothered to provide free coffee all day, and a free lunch.

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And when I tweeted that on my @legalaware Twitter account from my mobile phone in the lunch break (you’re told to turn your mobiles off for the day), I received this smartarse (#lol) remark from one of my 12000 followers immediately.

coeliac

You’re given a guidebook. You’re not coerced in any way into becoming a Dementia Friend or Dementia Friend Champion. You’re told specifically having done Dementia Friends you can do whatever point of action you wish, even if that includes supporting another charity other than the Alzheimer’s Society.

You are told that the point of the current dementia strategy in England in no way is intended to be political.  In support of that claim is that the current strategy has overwhelming cross-party support.

The sessions include information about dementia and how it affects people, as well as the practical things that can be done to help people with dementia live well in their community.

I was given resources to answer people’s questions about dementia and suggest sources of further information and support.

After completing the course Dementia Friends Champions can access resources and tools to help set up and run sessions for people who sign up as Dementia Friends.

These resources include exercises, quiz sheets, bingo sheets, book club ideas and reading suggestions. You’re made very familiar with the content of ‘Dementia Friends’ as they helpfully provide ALL the material on the website when you sign up. They don’t hold any of it back. The point is you go away and run the whole session as ‘Dementia Friends’. Having seen how the 45 minutes works, I have no burning desire to change any of it.

Having said that, there are one or two things I would do differently, hypothetically. The format makes it very clear the presenter is not an expert in dementia or counsellor. I think this actually helps in that an expert possibly could write an hour long essay on each of the five statements for finals, and get truly bogged down in “paralysis by analysis”.

One of the possible features of the ‘Dementia Friends’ session is comparing dementia to a bookcase. This is a well described metaphor, first proposed by Gemma Jones. I have indeed used it to propose a scheme of explaining ‘sporting memories’, an initiative which recently won the Alzheimer’s Society Dementia Friendly Communities national initiatives awards.

Here’s my pal Tony Jameson-Allen picking up his gong.

Tony

There’s a bit in the explanation of the bookcase analogy that gets quite technical in fact.

With the presenter of the session having said that he or she is not an expert in dementia or counsellor, it seems counter-intuitive to me that there is an explanation of the organisation of memory using two highly technical locations in the brain, the hippocampus and amygdala. But things like that are not a ‘deal maker’ or ‘deal breaker’ for me. There’s an excellent video of a presentation of the bookcase analogy by Natalie Rodriguez floating around, in fact, but we were all encouraged to be explain the analogy ‘live’ in our sessions, ‘rather than playing the DVD’.

I have absolutely no problem with the material being pre-scripted. I used to supervise neuroscience and experimental psychology for various colleges at Cambridge between 1997 and 2000 inclusive, and, whilst the guidance for teaching that was not as intense, it’s fair for me to mention that supervisors knew exactly what they had to cover for their students to achieve at least an upper second in finals.

Dementia Friends Champions, like me, are then be encouraged to run Dementia Friends sessions at lunch clubs, educational institutions and other community groups, but it could also include ideas such as arranging a meeting to talk with a small group of friends.

I intend to run five sessions to achieve about 100 further dementia friends. I conceptually find targets anywhere quite odious, and see exactly where this ambition has come from (Japan). On the other hand, nobody is a clairvoyant. The fact the number exists at all (aiming for March 2015) is a testament that this programme is being taken seriously. Had the number been set at 400, then we would all have said ‘job done’ some time ago.

I am actually, rather, amazed that somebody somewhere has signed off for a national programme to invite ordinary members of the public to attend free of charge a day on delivering the Dementia Friends programme, with nice company, and of course that free coffee and lunch.

I am also amazed that the actual substrate of the information sessions for ‘Dementia Friends’ is being offered to the member of the public free of charge, and it effectively has been paid for by Government.

The operational delivery of ‘Dementia Friends Champions’ day was totally faultless from start to finish. Even though I have nothing to do with their output, the Alzheimer’s Society here in England have done a brilliant job with it.

And finally I’ve tended to query whether it can be a genuine ‘social movement’ which so much resource allocation.

But people are genuinely interested in the programme, as these tweets to me demonstrate, I feel:

Tweet 1

Tweet 2

Look.

In a different jurisdiction – Australia – a close friend of mine, Kate Swaffer (@KateSwaffer), blogs daily on her busy life living with dementia, which includes being an advocate, travelling, cuisine (Kate is very experienced in sophisticated cooking), a background in healthcare, a student at the University of Wollongong, and what’s it like to live with dementia after being given the diagnosis. Her blog is here.

Chris, Norrms and Kate are all quite different – like the rest of the population – getting on with their lives. And as the very famous adage goes, once you’ve met one person living with dementia, you’ve done exactly done. You’ve met only one person with dementia.

And there’s clearly a huge amount to be done. Also at the Alzheimer Show one carer reported a person with dementia being ‘lost to the system’, completely unknown to anyone for care for three years.

I had a huge volume of concerns about this initiative, and I’m no pushover as far as being ‘in with the in-gang’ is concerned. But I strongly recommend you park your misgivings and go there wanting to be a part of a “change”.

I went on the day after the passing away of the incredible Dr Maya Angelou.

As she said, “If you don’t like something, change it. If you can’t change it, change your attitude.”

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Living well with corporate capture. What is the future of the Prime Minister's Dementia Challenge?

“Citizens have become consumers with status proportional to purchasing power, and former public spaces have been enclosed and transformed into private malls for shopping as recreation or “therapy.” Step by step, private companies, dedicated to enriching their owners, take over the core functions of the state. This process, which has profound implications for health policy, is promoted by politicians proclaiming an “ideology” of shrinking the state to the absolute minimum. These politicians envisage replacing almost all public service provision through outsourcing and other forms of privatisation such as “right to provide” management buyouts. This ambition extends far beyond health and social care, reaching even to policing and the armed forces.”

And so write Jennifer Mindell, Lucy Reynolds and Martin McKee recently about ‘corporate capture’ in the British Medical Journal.

Alistair Burns, England’s clinical lead on dementia, recently concluded a presentation on the clinical network for London with the following slide:

Reminyl Speaker Training Showfile

Alistair clearly does not mean ‘Dementia is everyone’s business’ in the “corporate capture” sense. Instead, he is presumably drawing attention to initiatives such as Brighton and Sussex Medical School’s initiative to promote dementia awareness at all levels of an organisation (and society).

 

Microsoft PowerPoint - H1 Dementia Care Event

 

The comparison with diabetes is for me interesting in that I think of living well with diabetes, post diagnosis, as conceptually similar to living well with dementia, in the sense that living well with a long term condition is a way of life. And with good control, it’s possible for some people to avoid hospital, becoming patients, when care in the community would be preferred for a number of clinical reasons. Where I feel the comparison falls flat is that I do not think that it is possible to measure outcomes for living well with dementia easily. Sure, I have writen on metrics used to measure living well with dementia, drawing on the work of Sube Banerjee, Alistair’s predecessor. It might be possible to correlate good control with a blood test value such as the HBA1c, and it steers the reward mechanism of the NHS for rewarding clinicians for failure of management (e.g. laser treatment in the eye, foot amputation, renal dialysis), but the comparison needs some clinical expertise to be pulled off properly. The issue of breaking down ‘barriers’ between primary and secondary care is an urgent issue, and ‘whole person care’ or ‘integrated care’ may or may not help to facilitate that. But a future government must not get too enmeshed in sloganising if it means forgetting basic requirements of foot soldiers on the ground, such as specialist dementia nurses including Dementia UK’s ‘Admiral nurses’.

But the question of who gives the correct diagnosis of dementia, or even verifies it, won’t go away.

Having done Dementia Friends myself, a Public Health England the Alzheimer’s Society joint initiative, I feel the initiative is extremely well executed from an operational level. I think it’s pushing it for a member of the public to think that an old and doddering lady crossing the lady might have dementia and requires help, as medicalising ageing into dementia is a dangerous route to take. The £2.4 million programme is funded by the Social Fund and the Department of Health. Public Health England are planning to undertake an evaluation of the Dementia Friends Campaign launched on 7 May 2014, which will include tracking data and prevention message testing.

There are a number of important clinical points here. There are crucial questions as to whether persons themselves with a possible diagnosis, friends and/or families themselves want a diagnosis of dementia. A diagnosis of dementia in anyone’s book is a life-changing event. The concerns of the medical profession have been effectively rehearsed.  Notwithstanding, the ambition that, by 2015, two thirds of the estimated number of people with dementia should have a diagnosis, with appropriate post diagnostic support has been agreed with NHS England.  To support GPs and other primary care staff, a Dementia Roadmap web-based tool has been commissioned by the Department of Health from the Royal College of General Practitioners. The roadmap has now been officially launched, and will provide a framework that local areas can use to provide local information about dementia from health, social care and the third sector to assist primary care staff to more effectively support patients, families and carers from the time of diagnosis and beyond. Feedback from relevant stakeholders will be most interesting.

People with dementia need to be followed up across a period of time for a diagnosis of dementia to be reliably made, and ‘in the right hands’, i.e. of a specialist dementia service. Whilst NHS England are working with those areas with the longest waits, with the aim of ensuring that anyone with suspected dementia will not have an excessive wait for a timely assessment, there has to be monitoring of who does that timely assessment and whether it produces an accurate result. At an extreme example, clinical diagnoses of rarer dementias, particularly younger onset, can only be done effectively by senior physicians with reference to two clinical histories, two clinical examinations, neuroimaging (e.g. CT, MRI, or even fMRI or SPECT), lumbar puncture/cerebrospinal fluid (if not contraindicated), cognitive psychology, EEG, or even – extremely rarely – a brain biopsy. But this would be to propose an Aunt Sally argument – many possible cases of dementia can be tackled by primary care with appropriate testing perhaps in the future, and certainly adequate resources will need to be put into primary care for training of the workforce. Or else, it is literally a ‘something for nothing’ approach.  Some people have ‘mild cognitive impairment’ instead, and will never progress to dementia.There are 149,186 dementia friends currently. This number is rapidly increasing. The goal is one million.Furthermore, there are many people given a diagnosis of dementia while alive who never have it post mortem. And the diagnosis can only be definitively made post mortem. Seth Love’s brilliant research (and he is an ‘Ambassador’ to the Alzheimer’s BRACE charity) is a testament to this. Anyway, NHS England and the Department of Health are working with the Royal College of Psychiatrists to encourage more Memory Services to become accredited.

And when is screening not officially screening? This continues to require definition in England’s policy. The original Wilson and Jungner (1968) principles have appear to have become muffled in translation. The CQUIN has led to over 4,000 referrals a month, but this will only contribute to improving diagnosis rates for dementia if this is not producing a tidal wave of false positives. For quarter 3 2013/14, 83% of admitted patients were initially assessed for potential dementia. Of those assessed and found as potentially having dementia, 89% were further assessed. And of those diagnosed as potentially having dementia, 86% were referred on to specialist services. But we do need the final figure. This policy plank for me will also go back to the issue of whether policy is putting sufficient resources into the diagnostic process and beyond. Stories of people being landed with a diagnosis out of nowhere and given not much further information than an information pack are all too common. A well designed system would have counselling before the diagnosis, during the diagnosis, and after the diagnosis.

Ideally, an appointed advisor would then see to continuity of care, allowing persons with dementia to be able to feel confident about telling their diagnosis to friends and/or family. The advisor would ideally then give impartial advice on social determinants of health, such as housing or education. Policy may be slowly moving in this direction. In April 2014 NHS England published a new Dementia Directed Enhanced Service (DES) for take up by GPs to reward practices for facilitating timely diagnosis and support for people with dementia. Patients who have a diagnosis of dementia will be offered an extended appointment to develop a care plan. The care planning discussion will focus on their physical and mental health and social needs, which will include referral and signposting to local support services. From 10 signatories in March 2012, to date, there are now 173 organisations representing nearly 3,000 care services committed to delivering high quality, personalised care to people with dementia and their carers.

But all this requires money and skill. There is no quick fix.

The areas of action for the Prime Minister’s Dementia Challenge are: dementia friendly communities, health and care and improving research.

In November 2012, The Secretary of State for Health announced a £50 million dementia-friendly environments capital investment fund to support the NHS and social care to create dementia-friendly environments. The term ‘dementia friendly communities’ is intrinsically difficult, for reasons I have previously tried to introduce. A concern must be the ideology behind the introduction of this policy in this jurisdiction. The emphasis has been very much on making businesses ‘business friendly’, which is of a plausible raison d’être in itself.  This, arguably, is reflected in the list of chief stakeholders of the dementia friendly communities champion group.

Dementia friendly communities board

It happens to fit very nicely with the Big Society and the ‘Nudge’ narrative of the current government. But it sits uneasy with the idea that it is in fact a manifestation of a small state which bears little responsibility apart from overseeing at an arm’s length a free market. The critical test is whether this policy plank might have improved NHS care. 42 NHS and 74 Social Care National pilot schemes were approved in June 2013 as national pilots. Most of the projects have now been completed, and they will be evaluated by a team of researchers at Loughborough University over the coming months. The evaluation will provide knowledge and evidence about those aspects of the physical care environment which can be used to provide improved care provision for people with dementia, their families and carers. But the policy has had some very exciting successes: for example the ‘Sporting Memories Network’, an approach based on the neural re-activation of sporting autobiographical memories, recently scooped top prize for national initiative in the Alzheimer’s Society Dementia Friendly Communities Awards 2014.

And meanwhile, the care system in England is on its knees. Stories of drastic underfunding of the care system are extremely common now. An army of millions of unpaid family carers are left propping up a system which barely works. There appears to be little interest in guiding these people, with psychological, financial and/or legal burdens of their own, to reassure them that all their hard work is delivering an extraordinary level of person-centred care.

But this for me was an inevitable consequence of ‘corporate capture’. The G8 World Dementia Council does not have any representatives of people with dementia or carers.

That is why ‘Living well with dementia’ is an important research strand, and hopefully one which Prof Martin Rossor and colleagues  at NIHR for dementia research will give due attention to in due course. But all too readily research into innovations, ambient assisted living, design of the ward, dementia friendly communities, assistive technology, and advocacy play second fiddle to the endless song of Big Pharma, touting how a ‘cure’ for dementia is just around the corner. Yet again.

So what’s the solution?

The answer lies, I feel, in particularly what happens in the next year and beyond.

The Prime Minister’s challenge on dementia was developed as a successor to the National Dementia Strategy, with the challenge of delivering major improvements in dementia care, support and research. It runs until March 2015. Preparatory work to produce a successor to the Challenge from the Department of Health (of England) is now underway in order that all the stakeholders can fully understand progress so far and identify those areas where more needs to be done. The Department of Health have therefore commissioned an independent assessment of progress on dementia since 2009.

There are a number of other important pieces of work that are underway, which will provide information and evidence about progress and gaps. For example, according to the Department of Health, the All Party Parliamentary Group on Dementia chaired by The Baroness Sally Greengross OBE are producing a report focused on the National Dementia Strategy, and the Alzheimer’s Society has commissioned Deloitte to assess progress and in the autumn will be publishing new prevalence data. Indeed the corporate entity known as Deloitte Access Australia (a different set of management consultants in the private sector) produced in September 2011 a report on prevalence of dementia estimates in Australia. Deloitte themselves have an impressive, varied output regarding dementia. But of course they are not interested in dementia solely. “Deloitte” is the brand under which tens of thousands of dedicated professionals in independent firms throughout the world collaborate to provide audit, consulting, financial advisory, risk management, tax, and related services to select clients.

But also it appears that the Alzheimer’s Society, working with NHS England, has commissioned the London School of Economics to undertake a review into the accuracy of dementia prevalence data. The updated data is expected to be published in Autumn 2014. Apparently, once all this work has been concluded a decision will be made on the focus and aims of the successor to the PM’s challenge.

The current Coalition government has been much criticised in parts of the non-mainstream media for the representation of corporate private interests in the Health and Social Care Act (2012).

I believe people who are interested in dementia, including persons with dementia, caseworkers and academics, should make their opinions known to the APPG in a structured articulate way in time. I think not much will be achieved through the pages of the medical newspapers. And only time will tell whether the new dementia strategy will emerge in time before the next general election in England, to be held on May 7th 2015. However, even the most ardent critics will ultimately. The present Government should be congratulated for having made such a massive effort in educating the country about dementia, which is a necessary first step towards overcoming stigma and discrimination. The Alzheimer’s Society has impressively delivered its part of it, it appears, but future policy will benefit from much more ‘aggressive inclusion’ of other larger stakeholders (e.g. the Joseph Rowntree Foundation, Dementia UK) and smaller stakeholders.

And special thanks to Alistair Burns, England’s clinical lead for dementia, a Chair at Manchester, and much more.

It could be a case of: all change please. But a huge amount has been done.

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Living well with dementia: Happy by Pharrell Williams

My close friend and colleague, Kate Swaffer, wrote an article this morning in Australia on being diagnosed with dementia vs ‘suffering’.

I strongly recommend it to you here.

This was an exchange of ours this morning on Facebook.

This topic has always caused heated exchanges for all of us.

I hope you can bear with us, as none of us mean any offence in this.

I think part of the issue is that, further to ‘once you’ve met one person with dementia, you’ve met one person with dementia’, our different views of that person with dementia can vary quite widely too.

Our discussions of ‘Living well with dementia‘ continue..

 

Comments

“Happy”

[Verse 1:]
It might seem crazy what I’m about to say
Sunshine she’s here, you can take a break
I’m a hot air balloon that could go to space
With the air, like I don’t care baby by the way[Chorus:]
Because I’m happy
Clap along if you feel like a room without a roof
Because I’m happy
Clap along if you feel like happiness is the truth
Because I’m happy
Clap along if you know what happiness is to you
Because I’m happy
Clap along if you feel like that’s what you wanna do[Verse 2:]
Here come bad news talking this and that, yeah,
Well, give me all you got, and don’t hold it back, yeah,
Well, I should probably warn you I’ll be just fine, yeah,
No offense to you, don’t waste your time
Here’s why

[Chorus]

Hey, come on

[Bridge:]
(happy)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said (let me tell you now)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said

[Chorus 2x]

Hey, come on

(happy)
Bring me down… can’t nothing…
Bring me down… my level’s too high…
Bring me down… can’t nothing…
Bring me down, I said (let me tell you now)

[Chorus 2x]

Come on

Norman (@norrms)

Kate (@KateSwaffer)

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The Purple Angels' Dementia Awareness Day, founded by Norman McNamara, on September 20th 2014!

I’m looking forward to the Purple Angels’ Dementia Awareness Day to be held on September 20th 2014.

This year’s chosen charity is “YoungDementia UK“, and here is the link to the “Just giving” page which has been set up.

Dementia is considered ‘young onset’ when it affects people under 65 years of age. It is also referred to as ‘early onset’ or ‘working age’ dementia.

However this is a somewhat arbitary age distinction which is becoming less relevant as increasingly services are realigned to focus on the person and the impact of the condition, not the age.

Dementia is a degeneration of the brain that causes a progressive decline in people’s ability to think, reason, communicate and remember.

Their personality, behaviour and mood can also be affected. Everyone’s experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.

Dementias that affect younger people can be rare and difficult to recognise.

People can also be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.

They are of considerable interest to me, as my own Doctor of Philosophy was passed by the University of Cambridge in January 2001, on “Specific cognitive deficits in the frontal lobe dementias”.

Norman
Norman

Norman McNamara from Devon was diagnosed with dementia six years ago when he was just 50.

Although his father and grandmother had suffered from the condition, Mr McNamara did not expect it to be part of his future.

He said: It was never really in the back of my mind that I might get it.

“I think it came to a head when I set the kitchen on fire three times.”

After his diagnosis, McNamara, from Torquay, began blogging online about his experiences and during a phone call with a friend he had the idea of organising the first Dementia Awareness Day.

The event was marked all across the world for the first time on 17 September 2011.

Norman McNamara writes, regarding this year,

“We want this year to be the best ever, and you don’t have to wait until the 20th Sept 2014 to do some fundraising! It doesn’t matter if it’s today, tomorrow, the 20th Sept or even New Year’s Eve!’

“All that matters is that you hold a small event, be it a coffee morning, a football card, car boot, a bingo game, a concert or even a SKY DIVE!”

“It really doesn’t matter, just please be assured that every penny you raise and donate to this link will go straight to YoungDementia UK and be spent on those who need it most, those with Dementia!”

“So please, let me know what you are organising this year so we can advertise it, the more people know about it the more we will raise.”

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Dementia awareness is not just for one week. It's for life.

This is Chris Roberts, a ‘Dementia Friend’, sporting his latest T-shirt.

mason4233

Chris lives well with dementia.

The message is though extremely compelling.

There are very few people I’ve ever met who ‘understand’ dementia. University Chairs are often very sharp political operators, whose brown nosing and networking skills are second to none. Of course not all Professors are like that.

There are also many academic authors who know how to play the system. They on the way up will write with someone well known so that they get published. This is a different version of when you tag somebody well known in your tweet in the hope that your shill can gain some momentum.

We have got to get out of the language of ‘opportunity seeking’ for dementia. You cannot measure success in dementia awareness by the number of new website domains with the bit ‘dementiaawareness’ in it.

As such you can’t sell ‘awareness’. You might be able to sell knowledge, but much of this knowledge, albeit unreviewed, is available on the world wide web. But that’s not to say there is a problem here. Most people’s basic knowledge of the dementias is poor, perpetuated by many people who should know better equating dementia with mild memory problems.

And promoting dementia awareness is not exactly equivalent to promoting a charity. To say that I have been disgusted with the naked unpleasant rivalry by some against others is an understatement. I know of one prominent person who has literally been pimping ideas and palming them off as his own. This has got to stop.

Cures for dementia sell copy – like Nigel Farage.

We’ve got a long way to go – whether the name itself ‘Dementia’ is appropriate, whether the word ‘carers’ or ‘support’ are appropriate, whether personal budgets would work, whether whole person care will work, whether it is possible to do case finding for dementia, whether there might be a promising medical treatment for dementia, and so on.

If you’re interested in being part of a network that doesn’t want anything, but wishes to spread goodwill and knowledge about dementia, please feel free to join our Facebook group.

But just because dementia awareness week ends today doesn’t mean we should park the idea til next year. Like living with any long term condition, it should be a way of life. Understanding it is part of our basic humanity, and our ability to be aware of dementia individually is a potent endophenotype of our make up as a caring society.

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"Stop using stigma to raise money for us", says a leading advocate living well with dementia

Let me introduce you to Dr Richard Taylor, a member of the Dementia Alliance International living well with dementia, in case you’ve never heard of Richard.

“We shouldn’t be put on ice”, remarks Taylor.

“Or when we shouldn’t be put in a freezer, when we our caregivers go on holiday. We too should take a vacation from our caregivers.. enjoy the company of other people with dementia and enjoy their company.”

Dr Taylor had explained how there is a feeling of camaraderie when people living with dementia meet in the room. This is somewhat different from an approach of people without dementia being ‘friendly’ to people with dementia, assuming of course that you can identify reliably who the people with dementia are.

We are now more than half way though ‘Dementia Awareness Week’, from May 18 – 24 2014. Stigma, why society treats people with dementia as somehow ‘inferior’ and not worth mixing with, was a core part of Dr Taylor’s speech recently at the Alzheimer’s Disease International conference held this year in Puerto Rico.

He has ‘been going around for the last ten years, … talking to people living with dementia, and listening to them.”

That’s a common ‘complaint’ of people living with dementia: other people hear them, but they don’t listen.

“Stigma defines who we are.. not confined to the misinformed media, or the ‘dementia bigots’. Stigma is within all of us. When I heard my diagnosis, I cried for weeks… I’d never heard of dementia or Alzheimer’s disease, but it was the stigma inside me.”

Commenting a new vogue in dementia care, which indeed I have written about in my first book on living well with dementia, Taylor remarks: “We’ve now shifted to ‘person-centred care’. I think that’s a good idea. I always ask the caregiver who that person was centred was on previously. But I do that because I know I can a bit of a smart-arse”

“The stigma is in the very minds of people who treat us.”

“But you actually believe we are fading away… and we are not all there… it is not to our benefit.”

“The use of stigmas to raise awareness must stop right now.”

” Very little attention is paid to humanity of people living with dementia.. The use of stigma to raise awareness and political support must stop. We must stop commercials with old people.. which end with an appeal for funds. That reinforces the stigma. That comes out of focus groups with a bunch of people they want to focus on.”

“What would make you give money to our organisation? An older person or a younger person… We had a contest in the United States of who should represent “dementia”. The lady who won was 87-year old man staring into the abyss with a caregiver with a hand on her shoulder…”

wrinkly hands

“Telling everybody with dementia that they’re going to die is a half-truth. The other half without dementia are going to die too. Making it sounds as if people are going to die tomorrow scares the life out of people… scares the money out of people.”

But it seems even the facts about dying appear to have got mixed up in this jurisdiction. Take for example one representation of the Alzheimer’s Society successful Dementia Awareness Week ‘1 in 3 campaign’.

This was a tweet.

1 in 3

But the rub is 1 in 3 over 65 don’t develop dementia.

Approximately 1 in 20 over 65 have dementia.

It’s thought that by the age of 80 about one in six are affected, and one in three people in the UK will have dementia by the time they die.

There was a bit of a flurry of interest in this last year.

Neither “Dementia Friends” nor “Dementia Awareness Week” can be accused, by any stretch of the imagination, of ‘capitalising on people’s fears”.

And the discomfort by some felt by speaking with some sectors of the population is a theme worthy of debate by the main charities.

Take this for example contemporaneous campaign by Scope.

scope

But back to Richard Taylor.

“How are you going to spend the rest of your lives? Worrying about how you’re going to die, or dying how you’re going to live?”

“I believe there is an ulterior motive.. to appeal to our fear of dying.”

“Stop using the fear of us dying to motivate people to donate to your organisations. It makes us mad and complicates our lives more than it needs to be.”

“The corruption of words to describe people who live with dementia and who live with us must stop.”

Dr Richard Taylor argues that the charities which have worked out how best to use manipulative language are the dementia charities.

“The very people who should be stopping corruption in language are the very ones involved in… “We’re going to cure dementia” What does that mean? Or will it be a vaccine where none of you get it and we all die, and so there’s no dementia any more?”

Taylor then argues you will not find ‘psychosocial research’, on how to improve the life of people with dementia.

Consistent with Taylor’s claim, this recent report on a ‘new strategy for dementia research’ does not mention even any research into living well with dementia.

“We are heading for more cures.. we’ve set the date for it wthout defining it. If we’re going to cure it by 2025, what will I see in 2018 to know we’re on track? .. It’s corrupt language.. None of the politicians will be around.. But people with dementia will be around to be disappointed.”

Taylor notes that every article rounds off with: “And now with further investigation, there’s a hope this might do this and this might do that.”

Except the politicians and charities have learnt how to play the system. These days, in the mission of raising awareness’, a Public Health and Alzheimer’s Society project, many articles focus on ‘Dementia Friends’, and people can decide at some later date whether they want to support the Alzheimer’s Society.

Articles such as this, or this, or this, or this, or this, or this, or this, or this, or this, or this, or this, or this, for example.

They could as a long shot decide to support Alzheimer’s BRACE, or Dementia UK. Dementia UK have been trying desperately hard to raise awareness of their specialist nursing scheme, called “Admiral Nurses“.

It all begs the question is the focus of the current Government to promote dementia, or to promote the Alzheimer’s Society?

Take this tweeting missive from Jeremy Hunt, the current Secretary of State for Health in the UK:

Hunt

According to Taylor, “We need to start helping for the present.”

He is certainly not alone in his views. Here’s Janet Pitts, Co-Chair of the Dementia Alliance International, who has been diagnosed with frontotemporal dementia. Janet is also keen on ‘person centred services’, ‘is very proud of the work [we] have been doing since [our] inception in June 2013’, and is an advocate.

“I am an example of where life is taken away, but where life is given back… [I want us to] live well with dementia, advocate for people with dementia, reduce stigma in dementia.”

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Empowering the person living with dementia personally, with more than the diagnosis

The 2009 English dementia strategy, co-authored by Sube Banerjee, now Professor of dementia at Brighton and Sussex Medical School, and Jenny Owen, then head of social care in Essex, went a long way to providing a road map for a strategy.

This laid down useful foundations, many strands of which were to be embellished tactically under this Government through “The Prime Minister’s Dementia Challenge”. In some ways, its major limitations were unintended consequences not fully known at the time.

The English dementia strategy is intended to last for five years, and, as the 2009-14 ‘five years’ come to an end, now is THE right time to think about what should be in the next one. Irrespective of who comes to deliver this particular one, progress has been made with the current one. I believe that across a number of different strands the focus on policy should delivering care, cure or support, according to what is right for that particular person in his social environment  at that particular time.

The problems facing the English dementia strategy now are annoyingly similar to the ones which Banerjee and Owen faced in 2008. Whilst they do not have ‘political masters as such’, they can be said to have had some political success. But that should never have been the landmarks by which the All Party Parliamentary Committee, chaired by Baroness Sally Greengross, were to ‘judge’ this strategy document.

The national dementia strategy back in 2009 had three perfectly laudable aims.

The first is to change professional and societal views about dementia.

There was a perception that some Doctors would sit on a possible diagnosis for years, before nailing their colours to their diagnostic mast. So this need for professionals to be confident about their diagnosis got misinterpreted by non-clinical managers as certain doctors, particularly in primary care, being obstructive in making a diagnosis.

At the time, it was perceived that there also had to be an overhaul in the way doctors think about the disease – a quarter believe that dementia patients are a drain on resources with little positive outcome, according to a National Audit Office (NAO) in July 2007. But this has only been exacerbated, and some would say worsened, by language which maintains “the costs of dementia” and “burden”, rather than the value which people with dementia can bring to society.

Associated with this has undoubtedly been the promotion of the message that ‘nothing can be done about dementia’. Indeed, the G8 dementia summit, collectively representing the views of multi-national pharmaceutical companies and their capture within finance, government and research, spoke little of care, and focused on methods such as data sharing across jurisdictions. It’s likely corporate investors will see returns on their investment in personalised medicine and Big Data, but it is essential for the morale of persons with dementia that they are not simply presented as ‘subjects’ in drug trials (and misuse of goodwill in the general public too). Unfortunately, if elements of Pharma overplay their hand, they can ultimately become losers, an issue very well known to them.

High quality research is not simply about excellent research into novel applications of drugs for depression, diabetes or hypertension, or the plethora of molecular tools which have a long history of side effects and lack of selectivity, but should also be about high quality research into living well with dementia. This is going to be all the more essential as the NHS makes a painful transition from a national illness service back to a national health service, where wellbeing as well as prevention of illness and emergency are nobel public health aims.

This summit was presented with an ultimate aim of producing a ‘cure’ for dementia by 2025, or ‘disease modifying therapies’, with no discussion of how ethical it would be – or not be – for the medical profession to put into slow motion a progressive condition; if it happened that the condition were still  inevitable. The overwhelming impression of many is that the summit itself was distinctly underwhelming in what it offered in terms of grassroots help ‘on the gound’.

The G8 dementia summit did nothing to consider the efficacy of innovations for living well with dementia, for example assistive technology, ambient assisted living, design of the home, design of the ward, design of the built environment or dementia friendly communities. It did nonetheless commit to wanting to know about it at some later date.

It did nothing to consider the intricacies of the fundamentals of ‘capacity’ albeit in a cross-jurisdictional way, and how this might impact on advocacy services. All these issues, especially the last one, are essential for improving the quality of life of people currently living with dementia.

A focus on the future, for example genetic analysis informing upon potential lifestyle changes one might have to prevent getting dementia at all, can be dispiriting for those currently living with dementia, who must not be led to feel ignored amongst a sea of savage cuts in social care. The realistic question for the next government, after May 7th 2015, of whatever flavour, is to how to catalyse change towards an integrated or ‘whole person’ ethos; ‘social prescribing‘, for example, might be a way for genuine innovations to improve wellbeing for people with dementia, such as ‘sporting memories‘, to gain necessary traction.

Empowering the person living with dementia with more than the diagnosis is fundamental. It is now appreciated that living well with dementia requires time to take care over appreciating the beliefs, concerns and expectations of the person in relation to his or her own environment. This interplay between personhood and environment for living well with dementia has its firm foundations in the work of the late great Tom Kitwood, and has been assumed by the most unlikely of bedfellows in the form of ‘person centred care’ even by multinationals.

Rather late in the day, and this seemed to be a mutual collusion between corporate-acting charities and the media, as well as Pharma, was a volte face on misleading communications about the efficacy of medications used to treat dementia. NICE, although potentially themselves a target of ‘regulatory capture’, were unequivocal about their conclusions; that a class of drugs used to treat ideally early attentional and mnemonic problems in early dementia of the Alzheimer type, had a short-lived effect on symptoms. of a matter of a few months, and did nothing to slow progression of disease. Policy is obligated though to accommodate that army of people who have noticed substantial symptomatic benefits for that short period of time with such medications such as aricept (one of the medications known as cholinesterase inhibitors)? Notwithstanding that, I dare say a medication ‘to stop dementia in its tracks’, as has been achieved for some cancers and HIV/AIDS, would be ‘motivating’, though I think the parallels medically between the dementias, HIV/AIDS and cancer have been overegged by non-clinicians.

And this was after spending many years researching these medications. The opportunity cost of the NHS pursuing the medical model is not inconsiderable if one is indeed wishing to ‘count the cost’ of dementia, compared to what could have been achieved through simple promotion of living well methods.

Large charities across a number of jurisdictions have clearly been culprits, and are likely to be hoisted by their ptard, as organisations as the Dementia Alliance International, a group of leading people living with dementia, successfully reset  the agenda in favour of their interests at the Puerto Rico Alzheimer’s Disease International Conference this year.

The second problem that still needs addressing is diagnosing the conditions which commonly come under “the dementia umbrella”.

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And clearly, the millions spent on Dementia Friends, a Department of Health initiative delivered by the Alzheimer’s Society, provides a basic core of information about dementia. It has a target of one million ‘dementia friends’, which looks unachievable by 2015 now. This figure was based on Japan, where the social care set-up is indeed much more impressive anyway, and which has a much lager population.

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The messages of this campaign are pretty rudimentary, one quite ambiguous. The campaign suffers from training up potentially a lot of people with exactly the same information, delivered by people with no academic or practitioner qualifications in dementia necessarily. This means that such ‘dementia friend champions’ are not best placed to discuss at all the difference between the various medical presentations of dementia in real life, nor any of the possible management steps. Egon Ronay it is not, it is the Big Mac of dementia for the masses. But some would say it is better than nothing.

But has training up so many dementia friends actually done a jot about making the general public into activists for dementia, like being a bit more patient with someone with dementia in a supermarket queue? Dementia Friends clearly cannot address how a member of the general public might ‘recognise’ a person with dementia in the community, let alone be friendly to them, just by mere superficial observation of their behaviour. It is actually impossible to do so – laying to the bed the completely misleading notion that schoolchildren have been able to recognise the hallmarks of dementia in their elders, which have been missed by their local GPs.

This first issue about shifting attitudes in perception and identity of dementia is very much linked to the issue of diagnostic rates. A public accounts committee report in January 2008 had revealed that two-thirds of people with dementia never receive a specialist diagnosis. Only 31% of GPs surveyed by the NAO agreed that they had received sufficient training to help them diagnose and manage dementia, and doctors have less confidence about diagnosing the disease in 2007 than they had in 2004.

Have things fundamentally changed in this time? One suspects fundamentally not, as there has always been a reluctance to do anything more than a broad brush public health approach to the issue of diagnosis.

Goodhart’s law is named after the banker who originated it, Charles Goodhart. Its most popular formulation is: “When a measure becomes a target, it ceases to be a good measure.” The original formulation by Goodhart, a former advisor to the Bank of England and Emeritus Professor at the London School of Economics, is this: “As soon as the government attempts to regulate any particular set of financial assets, these become unreliable as indicators of economic trends.”

And now it turns out that recoding strategies are being developed in primary care so as possibly to inflate the diagnostic rates artifactually. But while the situation arises that people in the general public may delay seeing their GP, and thereafter by mutual agreement the GP and NHS patient decide not to go on further ‘tests’, primary care can quite easily sit on many people receiving a diagnosis. The evidence base for mechanisms such as ‘the dementia prevalence calculator’ has been embarrassingly thin.

For example, Gill Phillips gives a fairly typical description of someone ‘worried well’ over functional problems at a petrol pump very recently, but the acid test for English policy is whether a person such as Phillips would feel inclined at all to see a Doctor over her ‘complaints’? The danger with equating memory problems with dementia, for example, means that normal ageing, while associated with dementia, can all too easily become medicalised.

And while there are possibly substantial disadvantages in receiving a diagnosis, both personally (e.g. with friends), professionally (e.g. employment), or both (e.g. driving licence), one should consider the limitations of national policy in turning around deep-seated prejudice, stigma and discrimination. And the solution to loneliness, undoubtedly a profound problem, is not necessarily becoming a ‘Dementia Friend’ if this means in reality getting the badge but never befriending a person with dementia? A ‘point of action’ like donating to a large corporate charity may be low hanging fruit for members of the public and large charities, but I feel English policy should be ambitious enough to consider shifting deep-rooted problems.

Such problems would undoubtedly be mitigated against if  any Government simply came clean about what has been the increase in resource allocation, if any, for specialist diagnostic and post-diagnostic support services following this drive for improved dementia diagnosis rates. Lack of counselling around the period of diagnosis, with some people being reported as just being recipients of an ‘information pack’, is clearly not on, as a diagnosis of dementia, especially (some would say) if incorrect, is a ‘life changing event’.

Too often people with dementia, and close friends or family, describe only coming into contact with medical and care services at the beginning and end of their experience of a dementia timeline. Different symptoms, and different medications to avoid, are to be expected depending on which of the hundred causes of dementia a person has; for example Terry Pratchett and Norman McNamara have two very different types of dementia, posterior cortical atrophy and diffuse Lewy Body disease respectively. There is going to be no ‘quick fix’ for the lack of specialist support, though there is undoubtedly a rôle for ‘drop in‘ centres to provide a non-threatening environment for the discussion of dementia, encouraging community networks.

Ultimately, the diagnosis of dementia should be right for the person, at the correct time for him or her. This is the philosophy behind ‘timely’ rather than ‘early’ diagnosis, a battle which certain policy-makers appear to have won at last. Empowering the person living with dementia with that diagnosis can only be done on that personal level, with proper time and patience; ensuring sustainable dignity and respect for that person with a possible life-changing diagnosis of dementia.

The third priority of the strategy inevitably will be to improve the quality of care and support for people once they have been diagnosed.

At one end, it would be enormously helpful if the clinical regulators could hone on their minimum standard of care and those people responsible for care, including management. This is likely to be done in a number of ways, for example through wilful neglect, or the proposed anticipated proposals from the English Law Commission on the regulation of healthcare professionals anticipated to be implemented – if at all – in the next Government.

At the other end, there has been a powerful realisation that the entire system would collapse if you simply factored out the millions of unpaid family caregivers. They often, despite working extremely hard, report being nervous about whether their care is as good as it should be, and often do not consider themselves ‘carers’ at all.

There have clearly been issues which have been kicked into the long grass, such as tentative plans for a National Care Service while such vigorous energy was put into the Prime Minister’s Dementia Challenge. “Dementia friendly communities”, while an effective marketing mantra, clearly needs considerably more clarification in detail by policy makers, or else it is at real danger of being tokenistic patronisingly further stereotypes. Nobody for example would dare to suggest a policy framework called “Black friendly communities”. Whilst there are thousands of specialist Macmillan nurses for cancer, there’s about a hundred specialist Admiral nurses for dementia.

We clearly need more specialist nurses, even there is some sort of debate lurking as to whether Admiral nurses are ‘the best business model’. However, the naysayers need to tackle head on how very many people, such as those attending the Alzheimer’s Show this weekend in Olympia, describe a system ‘on its knees’, with no real proper coordination or guidance for people with dementia, their closest friends and families, to navigate around the maze of the housing, education, financial/benefits, legal, NHS and social care systems.

A rôle for ‘care coordinators‘ – sometime soon – will have to be revisited one suspects. But it is clearly impossible to have this debate without a commitment from government to put resources into a adequate and safe care, but while concerns about ‘efficiency savings’ and staffing exist, as well as existing employment practices such as zero-hour contracts and paid carers being paid below the minimum wage, how society values carers will continue to be an issue.

At the end of the day, care is profoundly personal, and repeatedly good care is reported by people who have witnessed continuity of care (away from the philosophy of the delivery of care in 15-minute “bite size chunks”). Unfortunately, the narrative in the NHS latterly has become one of business continuity, rather than clinical professional continuity, but this should ideally be factored into the new renewed strategy as well. I feel that this renewed strategy will have to accommodate actual findings from the literature taken as a whole, which is progressing at a formidable rate.

In a paper from February 2014, the authors review the the safety of  the use of antipsychotics in elderly patients affected with dementia, restricting their analysis mainly to the last ten years. They concluded, “Use of antipsychotics in dementia needs a careful case-by-case assessment, together with the possible drug-drug, drug-disease, and drug-food interactions.” But interestingly they also say, “Treatment of behavioral disorders in dementia should initially consider no pharmacological means. Should this (sic) kind of approach be unsuccessful, medical doctors have to start drug treatment. Notwithstanding controversial data, antipsychotics are probably the best option for short-term treatment (6-12 weeks) of severe, persistent, and resistant aggression.” There are very clearly regulatory concerns of the safety of some antipsychotics, and yet the consensus appears to be they – whilst carrying substantial risk in some of very severe adverse effects – may also be of some benefit in some. It will be essential for the new National Dementia Strategy keeps up the only rapidly changing literature in this area, as do the clinical regulators.

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Finally, in summary, I believe that there is enormous potential for England, and its workforce, to lead the way in dementia, in a way of interest to the rest of the world. I do think it needs to take account of the successes and problems with the five year strategy just coming to an end, with a three-pronged attack particularly on perception and identity, diagnosis and care. But, unsurprisingly, I believe that there are still a few gear-changes to be made culturally in the NHS, however it becomes delivered in the near future. There needs to be a clear idea of the needs of all stakeholders, of which the needs of persons with dementia, and those closest to them, must come top. There needs to be clear mechanisms for disseminating good practice, and leading on evidence-based developments in dementia wherever they come from in the world. And dementia policy should not be  divorced from substantial developments from other areas of NHS England’s strategic mission: particularly in long-term conditions, and end-of-life care. This, again, would be the NHS delivering the right level of help for all those touched by dementia, from the point of diagnosis and well beyond.

Despite the sheer enormity of the task, I am actually quietly confident.

 

 

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