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It is not uncommon for ‘special event days’ on dementia to feature one or two people living with dementia. Sometimes there are logistic difficulties in providing fair representation of people living with dementia at international conferences, even.
People living well with dementia who instead attend these events witness these events stuffed full of ‘experts’ or directors providing their missives. They often complain that the minimal representation which is actually provided is tokenistic.
Deep down, there is a concern that people living with dementia are merely superficially involved as bit part actors in the weaponisation of a Pharma-led “war against dementia”. There are very few ‘good news stories’ about people successfully living well with dementia, say still in employment or contributing value in some important way.
But how big institutions act can be rather different in behaviour than that on the ground.
James Kouzes and Barry Posner indicated in “The Leadership Challenge” that there are several decision-making myths:
1. The chief executive decides.
2. Decisions are made in the room.
3. Decisions are largely intellectual exercises.
4. Managers analyse and then decide.
5. Managers decide and then act.
Both domestic and international policy for living well with dementia, rather, has converged on the notion that persons living with dementia should be included at an early stage in key features of service provision and research into dementia.
For this strategy to bear fruit in England in 2015-20, it is not adequate to have minimal involvement with people with dementia, while the script is in effect written by large charities and corporates.
There has been recent interest in “thought diversity“, often called “cognitive diversity”, in giving full attention to the plurality of different opinions about issues. It is thought that this is not simply an alternative to an anti-discrimination policy, but is fundamental to all features of fairness, equality, justice and integrity.
I feel thought diversity from people living well with dementia is essential to mitigate against the risk of undue influence on policy from ‘experts’, some of whom have not even met a person living with dementia. Conversely, when people living with dementia get together to discuss issues important to them, such as through the virtual cafés of the Dementia Alliance International (a global umbrella organisation for people living with dementia), the power of decisions collectively made can be much more convincing. This is akin to the well rehearsed phenomenon of “crowdsourcing” or “friend sourcing”.
My disappointment with the policy strand of ‘dementia friendly communities’ in any jurisdiction is that it does not really appear to have captured the public’s imagination for social change, in the same way that Marshall Ganz describes for the Obama Campaign.
I think vital to making this a box office issue is to emphasise that dementia is not a fringe policy issue. There are possibly about close to 900,000 people living with dementia in the UK as we speak.
Torie Osborn in the National Civic Review provided an elegant way of moving forward:
“A new era of cross-cutting change making has arrived. It favors linking communities and sectors together into public and political will for solutions on big, thorny issues affecting everyone—issues that America has not tackled head on for a long time, if ever, such as rising inequality in the global economy and climate change.”
But this has necessarily reframed the diversity narrative – perhaps, as discussed by Osborn, more to “Yes we can!”
Here the “Yes we can!” is being shouted from the rooftops by people living with dementia themselves.
Also, I feel the insights from people living with dementia are essential in formulating the policy of how a community might be improved to improve the wellbeing, say perhaps in housing design. Such decisions are likely to be of a much higher standard in quality, in keeping with previous research, for example, from the the Intelligence Advanced Research Projects Activity (“IARPA”).
This is not simply about hoping for the best, in getting a range of opinions, hoping that some opinions will gain legs. It is known that the first person to speak in a meeting often influences all subsequent opinions. The same effect could occur, for example, if a CEO of a regulator or a dementia charity talks at the top of a billing of a special event or world conference, with people living with dementia stuffed later down the programme (or even last).
Or if there is a room of ten people, and one with a disparate view, the nature of joint decision making will mean that the nine will tend to make the tenth person conform to a group view. This phenomenon is well known from the studies of decision making in legal juries.
Exactly the same issues crop up again in the development of “dementia friendly communities” policy. While there are huge problems with this policy, possibly inadvertently causing division rather than true integrity and inclusion, it is possible the best we have currently both domestically and internationally. Change is often much easier from within, as Maya Angelou amongst others famously said.
NHS Improving Quality (“NHSIQ”), NHS Confederation and NHS Horizons have now a great opportunity in building on this work of “thought diversity”, building on the momentum which is thought to have begun in late 2010. Deloitte were noteworthy first movers in this field with their report, “Diversity’s new frontier” published by the Deloitte University Press.
An introduction to thought diversity on the NHSIQ website is here.
It is perhaps helpful to look at this widely shared webinar on ‘thought diversity’ which indicates the direction of travel of this in encouraging creativity and innovation in health policy.
I am struck by the true nature of the ‘rebel’. Carmen Medina (@milouness) worked for the US Central Intelligence Agency (“CIA”) for over thirty years. There she will have been exposed to how decisions are made often on an urgent basis.
There, I am sure she will have been exposed to the ‘confirmation bias’. This is a thinking shortcut (or cognitive heuristic), where you tend to arrive at decisions which best corroborate your assumptions, rather than seeking out alternative hypotheses.
Whilst one interpretation of people living with dementia being happier shoppers in the high street comprises the ‘dementia friendly community’, other versions of it emphasise that it is not friendliness as such which is critical. Such ‘friendliness’ can inadvertently become patronising, but true equality and upholding of human rights hold the key to the autonomy and dignity of people living well with dementia.
Without a real mission for implementing ‘thought diversity’, there is a real danger that captains of industry will in effect construct policy on dementia friendly communities, without any real genuine consultation, and ‘use’ their one or two representatives with dementia on key boards to confirm their bias.
And the situation is, unbelievably, worse than that. There is currently no person living well with dementia who is a regular invited member of the World Dementia Council. Once the (?first) UK general election is over on May 7th 2015, I am hoping the head of the Civil Service will give a direction to the Prime Minister to facilitate this urgently needed appointment.
I am of course hoping that my thoughts in this blogpost are not brushed under the carpet by people working for Simon Stevens, current CEO of NHS England, when he comes to review the progress of dementia policy in keeping with the ‘Five Year Forward View’, which he has indeed contributed to.
There are indeed specific ways cited within the report from Deloitte how ‘thought diversity’ can be harnessed. In their application for the improvement of dementia friendly communities, one obvious step is to seek out whole teams of people living well with dementia who are able to meet and come to opinions on crucial subjects.
People with dementia can lead on such teams, and the conflicts to be mitigated against here are within people living with dementia, who may have opposing views about what a dementia friendly community is, and the contrast in aims of dementia friendly communities between people living with dementia and people not living with dementia. But, if it works well, thought diversity can provide the sharing of knowledge, expertise, problem-solving approaches, which is thought to be aim of English policy in the next few years in dementia.
As Margaret Heffernan is reported to have said,
“Diversity, in this context, isn’t a form of political correctness, but an insurance policy against internally generated blindness that leaves institutions exposed and out of touch” ;
as Deloitte put it, institutions are prone to appearing out of touch, including senior policy wonks comprising some form of ‘ideological echo chamber’.
This is perhaps epitomised as, “a revolution from the heart” (Martin Luther King).
True equality for people living with dementia is identifiable.
Ultimately, the hope is that the policy of ‘dementia friendly communities’ is resilient enough to withstand shocks, such as high street stores going into insolvency. I strongly feel that thought diversity is a necessary management step in giving people living well with dementia a fair hearing so that they can lead.
Strange through it may seem, I have been most influenced in my philosophy of living better with dementia by the late Prof Ronald Dworkin who died in 2013 at the age of 81 (obituary here).
One recent campaign has the tagline ‘Right to know’ from the UK Alzheimer’s Society – about the right for you to know if you have dementia as a diagnosis, a right to treatment, and right to plan for the future.
I feel that people newly diagnosed with dementia have other rights too. I would say that, wouldn’t I. Above all, I feel that people who have received a diagnosis of dementia have a right to live well. This is truly a legal right, as this is not negotiable under the Universal Declaration of Human Rights. Recent case law, in the judgment from Lady Hale in R v Cheshire West and Chester Council (et al), re-emphasises that human rights are inalienable. And given that dementia is a disability under law, the right of that person with dementia is a right to dignity, reinforced by our universal human rights.
Focusing on a right to treatment further consolidates the biomedical model which I think is utterly unjustified. We have just seen the peak of one of the most successful campaigns ever mounted by Pharma and large charities for dementia to raise funds for pharmaceutical approaches to dementia. But at the expense of offering jam tomorrow there was very little on offer for people currently living well with dementia. The answer given to Helga Rohra by the World Dementia Envoy gave little in the way of concrete help for people currently trying to live well with dementia. And the ignorance of this is not benign – for the millions of dollars or pounds sterling spent on molecular biology and orphan drugs for dementia to meet the deadline of 2020, this amount of money is being taken out of the pot for developing the evidence base for and for strategies for living better with dementia in a non-pharmacological way.
Just a minute. Look at the evidence. The medications known as cholinesterase inhibitors are generally thought not to slow down the progression of Alzheimer’s disease in humans, even if they have a short valuable time window of use for symptomatic treatment In the UK, and across the world, there has been a drive for reducing the number of inappropriate prescriptions of antipsychotics for people living with dementia; there is now a growing consensus that where symptoms exist they often are due to a fundamental failure in communication with that person living with dementia, and often other therapeutic routes are much more suitable (such as psychological therapies).
The great FR Leavis, intensely under promoted at Cambridge, reminded us that criticism had to be free and flexible: and hence the famous description of the ideal critical debate as an ongoing process with no final answer: “This is so, isn’t it?” “Yes, but …”
Criticism of the English dementia policy may seem like criticism of senior clinicians, senior personnel in charities or senior politicians, but Leavis gives us a powerful reminder to stand up for what it is right. Surely, people living well with dementia have a right to comprehensive high quality dementia care and support? The evidence in support of multidisciplinary teams, including social work practitioners, speech therapists, doctors, cognitive neuropsychologists, occupational therapists, speech and language therapists, working to produce pro-active plans is now overwhelming. There is now increasing evidence that specialist nursing could prevent many acute admissions to secondary care.
As the late Ronald Dworkin asked us to consider, we might think about what makes an “interpretation” true. As Dworkin notes, psychoanalysts interpret dreams, and lawyers interpret contracts. I would go as far as to say clinicians, of various backgrounds, interpret whether a person presenting with a particular cluster of mainly psychological symptoms is presenting with a dementia. I don’t think the diagnosis of dementia is necessarily easy to make. Given that you’re giving a diagnosis of dementia not just to a person with possible dementia but also to his friends and family it is essential to get right; not to misdiagnose depression as dementia for example. My gut instinct is that doctors of all variety do their utmost to get this diagnosis correct. I think there is also a degree of interpretation in how much a person will successfully adapt to their diagnosis in taking an attitude of ‘living well’, or how they will put their faith in pharmacological treatments. The drugs do work for some people for part of the time after diagnosis, so their importance must not be diminished either. I think there is also a degree of interpretation of how disruptive a diagnosis of dementia might be for that person and his or her community.
Dworkin also notes you would be prone to sack a Judge who said, “I am not sure if this person is guilty or not guilty. I think he’s guilty, but you could probably find great many judges who finds the person not guilty.” It is possible that in the more complicated cases a Doctor might find a person living with dementia, another one not living with dementia. Dementia is presented as a definite diagnosis, a binary decision; but this would be to ignore that even the diagnostic criteria, such as the critical importance of memory (or not), has changed with time. Likewise, there has been a growing conflation of whether you fail a series of tests is the same thing as having a diagnostic label; see for example how some people recorded as having ‘delirium’ in the medical notes have in fact, strictly speaking, failed a specific set of screening tools.
But we can say that there are non-medical routes which are not an idle exercise but are of a person flowing from the diagnosis of probable dementia. This is there is much which can do to enhance the living environment of a person, whether a hospital ward, home or town. Or somebody can be directed towards advocates who can help persons with dementia communicate decisions. Or a person can be directed to inexpensive assistive technologies or lifestyle adjustments that can allow a person to live with dementia just like any other disability. This is framing long term care as living with a condition, rather than the single hit treatment.
Dignity, independence and a vast array of other values will, I feel, are a very necessary outcome of this more helpful approach to dementia. The person who has received a diagnosis of dementia is as much of a need of an acknowledgement of uncertainty as a water-tight explanation. The person who has received a diagnosis of dementia needs to be partnership with the people who wish to share that diagnosis with him or her.
I feel it is now time to unmask the medical professional who may simply be not be able to cope with this cultural shift. The medical profession does not know all the answers, nor indeed do all the people who’ve signed up to the Pharma script.
People who want to live better with dementia can be secure in the knowledge that that is their human right. They have a right to this solution, wherever it comes from.
Is there truth in interpretation? Prof Ronald Dworkin
There have been numerous examples of refusal of handshakes over the years. In 2012, Luis Suarez refused a Patrice Evra handshake. On the other hand, a handshake can be extremely symbolic. In 2013, it was reported that there had been a brief, but important handshake, between Obama and Castro.
Indeed, using the “Handshake” app, sales reps can take orders on the company’s tablet application while in a store or at trade shows, with the latest data on inventory and previous sales histories at their fingertips. It is now reported that app developer Handshake has raised $8 million in new funding to grow its business selling a mobile wholesale sales ordering and fulfillment application.
There has been much media coverage about a leaked memorandum from the UK Labour Party about ‘changing the subject’ when immigration comes up on the doorstep in campaigning. But, it turns out on closer inspection, such a tactic is advised if a potential voter shows unwillingness to discuss the topic of immigration in a constructive way.
The handshake is the symbol of bilateral goodwill. In other words, for a handshake to work, it cannot be refused by one party. The concept of ‘dementia friendly communities’ critically depends on rational members of the public wanting to show goodwill to people living with dementia. There may be all sorts of reasons why a member of the public might be unwilling to have that conversation. Possibly, a person might demonstrate prejudice towards, and discrimination, against a person living with dementia out of sheer ignorance; or because of powerful preconceptions from media imagery.
It is inevitable that combating such imagery is only possible if the media play out their side of their bargain. In other words, they avoid words such as ‘battle’, ‘fight’, ‘war’, or ‘robbed of his mind’. But this is not always the case. It is possible that if you know absolutely nothing about what dementia is you might have formed very crystallised opinions. Such views are ‘bigoted’ in the sense that it will be difficult for any amount of campaigning to change one’s perception of dementia.
It is now possible that creativity could be one of the best tools in shifting cultural prejudices. The latest ‘illridewithyou’ trend is a testament to that. Many Australians are still showing their support for Muslims using the hashtag #illridewithyou.
The trend started even as the siege in Sydney was ongoing on Monday. But, perhaps inevitably, a backlash has hit Twitter: #iwontridewithyou has been tweeted more than 3,000 times. On a train, one passenger reportedly spotted a Muslim woman removing her hijab, ostensibly out of fear of being targeted. The passenger told her to put it back on and offered to walk with her in solidarity. And so began #IllRideWithYou. The hashtag went viral and is currently still trending worldwide, days after the end of the hostage crisis.
It is very hard to think you can half believe in ‘dementia friendliness’, however defined, in that you can’t be ‘half pregnant’. One would think you might either sign up to the notion of wanting to learn more about the dementias, inclusivity, or accessibility, in other words making a community welcoming to a person living with dementia – or not. But the unpalatable truth is, possibly, that we all have different degrees to which we should want to prioritise this. I have often heard at meetings ‘what makes people living with dementia so special?, albeit asked politely; a person who asks this might be a commissioner in mental health services who is genuinely asking what makes a person living with dementia a higher commissioning priority than, say, a person with first episode psychosis?
These are difficult questions. The current ‘Dementia Friends’ initiative, implemented by the Alzheimer’s Society, with Public Health England in support, officially runs next year too in 2015. But at the end of this time, whatever the exact number of new ‘Dementia Friends’, serious questions will need to be asked about the wellbeing for a person newly diagnosed with dementia is any better. The annual funding of social care is reported to have dropped in recent years, from official figures, with social care not having been ring fenced since 2010.
There has never been a campaign for dementia friendliness to match the vigour of ‘illridewithyou’. Admittedly, there are key differences between stigma and prejudice against a person living with dementia, and, say, that towards a Muslim lady wearing a burkha. But this relates to another aspect of the ‘dementia friendly communities’ policy strand I have been concerned about for a very long time. Proponents of ‘dementia friendly communities’ have often argued that you might be able to spot someone with dementia in a shopping queue by virtue of the fact he or she is having trouble with monetary change. But this is a difficult path to tread down.
Somebody having difficulty with change could be exhibiting such behaviour as he or she is thinking about his partner having just died. The screening test is not particularly sensitive or selective. More basically, many dementias are ‘invisible’ to the outward observer. It might not be obvious to a stranger that someone is living with a dementia, or he or she never talks about the night terrors, the changes in semantic language, or the change in complex visual perception.
More fundamentally, we might get to the end of 2015, and we find that nothing has particularly changed in public attitudes. People living well with dementia might not find that members of society want to ‘ride with them’, but I feel the ‘Dementia Friends’ initiative has been influential in changing around a culture of indifference. Lazy commissioners will have to find another initiative to hand their anti-stigma credentials upon. My gut instinct that we will get to know whether as a society we know whether it’s possible to ‘half believe’ in dementia friendliness by the actual behaviour of us as a society. This will be very difficult to ascertain, but we will need to look into this. One thing’s for sure, it won’t be easily determined by the abundance of stickers in shop windows promoting ‘awareness’.
Let me introduce to you to “Dementia Friends” (details here).
The aim is for you to learn some fundamental information about what dementia is, so you understand it better than you would’ve done otherwise.
Dementia is caused by diseases of the brain; it can affect any thinking depending on what part of the brain is affected.
It’s not a normal part of ageing; it’s important to live well with dementia.
There’s much more to a person that the dementia.
I’d like to say something which may surprise you, depending on how well you know me.
I don’t really like the term ‘dementia friendly communities’. I totally ‘get’ it is well meant, embracing the concept that people living with dementia can go out in their communities at large, talk to people, go shopping, and lead a happy life.
But there are problems with the concept. I think it ignores the fact there are so many different causes of dementia, each with different ways in which they affect a person’s life. These dementias can progress at different speeds too.
I’m also worried about inadvertently creating division. There are enough divisions in society, e.g. rich vs poor, disabled vs non disabled, sick v well, for example.
I worry about the issue that to be dementia friendly you can immediately recognise disability. I’ve always had to bite my touch when people claim you can easily spot dementia in the community, so much so young schoolchildren can spot dementia even when experienced GPs cannot.
Dementia, like all other disabilities, can be invisible.
The term ‘dementia friendly community’ poses the same issues in principle as ‘gay friendly community’, therefore, one could argue.
Nonetheless, I feel the starting point policy-wise is that there is a huge amount of public ignorance about the dementias. The media have been notorious at misrepresenting dementia; even the term ‘epidemic’ is problematic, whatever the exact truth about numbers and definition, given that there are some people who believe that the dementias are essentially contagious.
I regularly ask London cab drivers if they’ve heard of dementia. Invariably, after saying ‘yes’, those cab drivers then can’t tell me much about dementia. These are generally well informed individuals, however. They readily admit they wish they knew more.
For me, it’s easy to underestimate what people know about dementia. I did a medical junior job at the National Hospital for Neurology and Neurosurgery in it. I also did my Ph.D. in it.
But I am in no way an expert.
One of my best friends, Chris Roberts, living with a mixed dementia of Alzheimer’s disease and vascular dementia, is a Dementia Friends Champion. He says, if he is an expert, he is an expert in his own dementia at this particular time.
Chris is on the left of the picture above; Jayne on the right. The “thing” in the middle, by the way, is a “selfie stick”, currently all the rage in England.
Thanks to the audio visual unit at BPP Law School for their helping me for my Dementia Friends sessions.
Here’s a short excerpt of the Dementia Friends information session we gave on 4 December 2014, together with Jayne Goodrick.
Our details are here.
It shouldn’t be the case that people who’ve been given a diagnosis of dementia feel somewhat frightened to tell their friends or family. We know loneliness is a big problem for many who’ve received a diagnosis of dementia in England.
I love doing ‘Dementia Friends’.
We never ‘force’ our Dementia Friends infocards and badges onto people!
I came to the programme with the same cynicism as many, wondering what was ‘in it’ for the charity involved in implementing it. I am genuinely worried about lack of diversity in the dementia charity sector, and potential abuse by one or two key providers of ‘dementia services’.
I also came to the programme with concerns about whether the messages or activities of Dementia Friends would be accurate.
I am generally very happy with the messages which Dementia Friends gives out, and the feedback has been overall very positive. No initiative is perfect by any means, and I think ‘Dementia Friends’ is as good a national programme, for what it does, as it could be. It was a major proposal from the 2009 English dementia strategy, entitled ‘Living well with dementia’.
The anonymous feedback we received from our December session was very positive.
The questions I regularly receive at my sessions are much harder than the ones I receive at international conferences on dementia. Such questions have included, “How can we promote the dignity of a person living with dementia?”
I think though, overall, the “Dementia Friends” initiative has succeeded.
Detailed analysis will see whether it has indeed been successful in turning ‘understanding’ into ‘action’. But I think there are currently about 600000 Dementia Friends at the time of writing is a major triumph.
Please book yourself into a Dementia Friends information session to decide for yourself. My next session is at BPP Law School in Holborn, London, on January 15th 2015. Details are here.
The importance of the ‘lived experience’ at the Alzheimer’s Disease International conference in 2015
This year, the Alzheimer’s Disease International under Marc Wortmann has done outstanding work.
It is known for its huge impact in allowing nation states to flourish with dementia strategies
Its output is phenomenal (see for example this latest paper). I have no doubt whatsoever ADI will continue to flourish under Glenn Rees, the incoming Chair (currently Chair Elect).
I’m still very excited about the 30th International Conference of Alzheimer’s Disease International “Care, Cure and the Dementia Experience – A Global Challenge” 15-18 April, Perth, Australia, next year.
People who are very close to me will be there.
It is, also, a lovely city.
The conference website is here.
It was always emphasised that this conference would showcase the lived experiences of people with dementia. People living with dementia and caregivers were indeed encouraged to attend.
This is a part of the list of posters to be presented on Thursday 16 April 2014.
The two submitted by Chris Roberts and Truthful Kindness are shaded in a dark red.
The titles most clearly say ‘lived experience’ in the titles.
They were submitted as oral presentations, as the two people involved did not want them as poster presentations.
Indeed they did not opt for the ‘poster/oral’ option specifically for that reason.
Communication with the world about my life’s experience with dementia after diagnosis
Arts and Engagement
Living well with dementia: a lived experience
Arts and Engagement
Truthful Kindness’ affiliation is Dementia Alliance International, Iowa; it was never submitted as United Kingdom. The irony about Truthful’s intended oral presentation is that she wished to explain how people with dementia can use all sorts of media to express themselves artistically and creatively. Arts and creativity is a huge policy plank in living well with dementia internationally.
It would have been clear to any diligent reviewer of these abstracts, from their submitted biographies, that both Chris and Truthful were genuinely living well with dementia.
Here’s Chris even holding the flyer of the Dementia Alliance International group, at Glasgow earlier this year in the Alzheimer’s Europe conference on dignity and autonomy in dementia.
Chris is currently a Board member of the Dementia Alliance International.
I understand, from having spoken to one of the juniors at the Alzheimer’s Disease International, that there may even be a chance for poster presenters to give short oral presentations of their work. But I think this possibly may be worse.
It has been explained to me that the environment for the poster sessions is very off putting. It is a crowded room, with not much space for the poster itself. It is a very noisy environment, which is very distracting. In other words, this can be an environment which is potentially disadvantageous to people with early dementia who wish to present.
I am, of course, pleased that the keynote speakers for this conference include two friends of mine, and whom I admire massively, and who are living well with dementia, Kate Swaffer and Helga Rohra.
As is known, I consider Kate to be exceptional in every way.
These are two symposia from the scientific programme in which they might have appeared: “younger onset dementia” and “engaging people living with dementia”. From eyeballing the titles of these talks, I don’t see many speakers talking about their own personal lived experiences.
The only parts of the conference yet to be revealed are the ‘workshops’.
The details of the workshops are given as follows:
Day 2 Dementia Friendly Communities
Day 2 “How to” topic to be confirmed
Day 3 Clinical trials
Day 3 “How to” topic to be confirmed
Day 3 Arts and dementia
Day 4 World Alzheimer’s month
Day 4 “How to” topic to be confirmed
I am extremely honoured to be on the international advisory board for the 2015 conference. I should therefore not want to criticise the organising committees in any way for their hard work.
But I cannot be a silent bystander to this either. The whole point about viewing dementia as a cognitive or behavioural disability secondary to a brain disease is that it then comes under international and domestic laws (for example, for UN Convention for people with disabilities and the Equality Act).
Ignoring two people’s wishes to have an oral presentation, as they cannot do poster presentations, is not making reasonable adjustments for their disability, one could easily argue.
I understand that the number of people with dementia fluctuates year on year, so it can be difficult to predict the number of people with dementia who wish to present. But, even with the limited number of places for the two symposia I have cited above, there doesn’t appear to me a big representation of people living well with dementia amongst the speakers, but I could be wrong. This also seems to be the case for other symposia, notably the one on “dementia friendly communities”?
I think the Alzheimer’s Disease International conference 2015 will turn out to be a brilliant opportunity for us to meet up; and we will also get a chance to discuss ‘cure’, ‘care’ and ‘living well’.
But Richard Taylor, living himself with a dementia, is right in his presentation from last year – where is the representation of evidence of psychosocial techniques?
I’d like to ask where is the evidence looking at ‘living well’, such as GPS trackers, design of wards, design of houses, the wider built environment, incontinence, eating well, assistive technology, ambient assisted living, advocacy, and so on?
On that note, I do strongly applaud the work of ‘Dementia Alliance International‘, which is truly representing the community of people living with dementia.
We hear words such as ‘challenge’ being used all the time in relation to dementia.
Hopefully the organisers will rise to the ‘challenge’ of living up to the reasonable expectations of those people with lived experiences wanting to take part fully in the ADI conference 2015 in a format they feel most comfortable with (and which makes reasonable adjustments if required).
There has been some startling consensus over the national political settlement, including as it applies to English dementia policy.
There has generally been cross-party agreement about personal budgets, even though the ‘direction of travel’ from the UK Labour Party is to favour a ‘rights based approach’ to advance choice and control rather than merely though a financial budget.
There are good reasons not to put many eggs into the personal budget basket for dementia; these include how the range of ‘products and services’ for dementia can be in places rather underdeveloped, and the formidable potential safeguarding issues for certain vulnerable individuals living with dementia.
Another consensus is to be found in wellbeing, or living well.
I was struck by a recent recommendation from the first ever report by the All Party Parliamentary Group on Wellbeing Economics, entitled “Wellbeing in four policy areas” (published September 2014):
“Health and Wellbeing Boards should bring together public health professionals, Clinical Commissioning Groups, GPs, and other stakeholders to develop strategies for ‘whole person care’ which effectively integrate mental and physical health.”
Unknown to me, they had been doing great work even prior to the last UK election. Their ultimate aim, unsurprisingly, is to make wellbeing into a pervasive policy strand that straddles across all areas of life.
This ‘wellbeing prism‘ has impacted on various areas of policy, I suspect, in the past, like ‘The Big Society’. I have always felt that the ‘dementia friendly communities’ policy in England, heralded in the Prime Minister Dementia Challenge, although clearly having some roots in the Japanese ‘caravans’ ‘befriending’, fits well into the ‘Big Society’ ethos.
One of the problems with both ‘dementia friendly communities’ and the ‘Big Society’ has been whether the civic sense of solidarity might diminish statutory obligations.
I have witnessed the problems with this, first hand, in writing my book ‘Living better with dementia: champions for enhanced communities’ which I hope to publish next year. The same tensions exist in statutory obligations in the form of equality and human rights law, and statutory entities, and non-statutory community-driven ones there too.
As the O’Donnell Report puts it, wellbeing:
‘leads us to place greater weight on the human factors that explain the big differences in wellbeing, but that tend to be pushed to the margins in traditional policy making’.
There has been some focus on how we need an ‘alternative measure to GDP’. Cynics unsurprisingly argued that such a measure might inevitably gather political momentum given the problems we have had with economic growth in the last few years.
But the general arguments from the APPG on wellbeing economics make an enormous amount of sense to me. Julian Huppert is the current MP for Cambridge, and I dedicated my current book to his mother Prof Felicia Huppert, Professor of Wellbeing at Cambridge. Julian is, to my knowledge, on the APPG on wellbeing economics.
The next parliament, I hope, will see a continuation of a focus on wellbeing in policy. As pointed out in their first report, there is considerable overlap with the wellbeing field and that of the ‘social determinants of health’.
In my next book, I continue with analysing this overlap, using housing as an example. Housing is clearly an area which impacts upon the quality of life of people living well with dementia, not just from architectural perspectives of design, but also how spaces are organised to facilitate personal interaction.
Similarly, planning in the built environment is important, with considerations of inclusivity and accessibility.
These are all ‘desirable’ (or even ‘essential’?) attributes of the ‘dementia friendly communities’.
Unpaid caregivers and paid carers, like professionals, are vital in the social capital of these communities too.
It is said elsewhere that while there has been a strong focus on GDP-style economics the lack of focus on wellbeing means that we do not touch upon many policy areas, such as strife caused by marital breakdown.
I feel that this touches upon another tension of dementia policy, this time at a global level.
We know, for example, loneliness is an important source of emotional morbidity for people who have received a probable diagnosis of dementia all around the world.
Also, jurisdictions have been encouraging the aspiration of people living with dementia to live independently; in other words, not institutionalised in some form, as long as possible. This, I think, is intuitively right, so long as it is not perceived as a ‘failure’ if somebody does need the support and care provided from an institution.
There are some people who believe that the ‘successful ageing’ and ‘ageing in place’ movements have overplayed their hand; with cynics pointing out they fit nicely into the ‘small state’ narrative, a rather individualistic narrative, which takes little account of our cohesion as a society.
But this I genuinely think would be to analyse the issue too much but with one important proviso.
That proviso is that I don’t think you can value people simply in terms of their economic productivity.
I refer to this ‘equality of wellbeing’ even in my Introduction to my new book. Such equality of wellbeing throws a different light on equality driven by a purely economic sense.
In summary, in reference to the first ever report from the APPG in wellbeing economics, as the next Government and the Civil Service turn their minds into thinking about wellbeing and health policy, it will be forefront in their minds that we are about to embark on a huge behavioural change bringing together the NHS and social care.
This transformative change to ‘whole person care’ will bring great opportunities, I feel, as well as formidable challenges, not least funding considerations at a local and national level.
But I feel like the current Government, and like future ones hopefully, that a focus on wellbeing is desirable. O’Donnell is reported to have said, “If you can measure it, cherish it!”
Ideally, it would be nice to have some form of metric to see whether wellbeing interventions have any effect. I am mindful of the excellent work by Prof Sube Banerjee and colleagues on DemQoL, but others exist. And of course we should not want to end up where we started: in a target driven culture which hits targets but misses the point (as famously phrased by Sir David Nicholson).
There might be desirable effects of such metrics, though. They could be formally put into grants for research for living well with dementia; to see whether some activities are more beneficial in care homes, where there is a high proportion of people living with dementia often, than others.
The Baroness Sally Greengross asked me to put in a chapter on arts, music and creativity in my current book; so I did.
But, as the new APPG report on dementia this year rightly discusses, such a metric could be used to incentivise the use of the arts and creativity to improve the quality of life of individuals in society. And I have no doubt whatsoever that arts and creativity are a linchpin of dementia friendly communities too.
The APPG in dementia earlier this year, under Sally’s leadership, urged the importance of high quality commissioning in post-diagnostic support for dementia.
If we have more a ‘joined up’ approach to commissioning and policy, in parallel with the breaking down of silos needed for ‘whole person care’, I think England can consolidate its formidable lead in the ‘dementia friendly communities’ policy in the world.
Other jurisdictions might even follow suit.
Gus O’Donnell (Chair) – and Angus Deaton, Martine Durand, David Halpern and Lord Richard Layard(2014). Wellbeing and Policy. London: Legatum Institute. Accessible at: http://www.li.com/docs/default-source/commission-on-wellbeing-and-policy/commission-on-wellbeing-and-policy-report—march-2014-pdf.pdf?sfvrsn=2
Wellbeing in four policy areas: ￼Report by the All-Party Parliamentary Group on Wellbeing Economics (September 2014). Accessible at: http://b.3cdn.net/nefoundation/ccdf9782b6d8700f7c_lcm6i2ed7.pdf
All-Party Parliamentary Group on Dementia assesses progress of the National Dementia Strategy for England
2014 report: The National Dementia Strategy: Change, progress and priorities
Accessible at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1447
In a way, the second ever English dementia policy poses more of an acid test than the first one. The reason for this is because we already have a set of yardsticks by which the first five years can be assessed, with a view to projecting forewards.
I don’t doubt the enthusiasm with which we have tried to close the ‘diagnosis gap’ in England. The heart of this is the high quality diagnosis, as stipulated in the original policy co-authored by Prof Sube Banerjee at Brighton and Sussex Medical School. What we have tended towards, rather, is a culture of high volume mediocre quality. And people readily admit they would rather wait that little bit longer to get the correct diagnosis.
I do not subscribe to the idea that anyone can easily make a diagnosis of dementia. When a diagnosis of dementia is finally given, it’s given not just to the person with dementia, but to his or her friends, or her family. As Kate Swaffer says, she is not a person with dementia primarily; she is a person with friends, family and feelings.
This approach prioritising the person has to be right from the word go. We are all persons, but we become patients when we become ill enough to present to the health and care services or not. We become paying consumers when we part with money. We are consumers if we spend any resources from the pot of money paid into from national insurance.
And so on. This analysis of money is a sideshow only as far as to how to service is delivered is actually matters. If you have services in dementia and support commissioned in a highly piecemeal manner, at worst from clinical commissioning groups who don’t know what wellbeing is, nor what they’re looking for, it can be a mess.
The hunt is definitely on for effective commissioning as well as any commissioning at all. The next Government will have to provide much better clarity on this, and some objective guidelines on how, say, the delivery of wellbeing might be ensured on an ongoing basis, not just at the start and finish of a commissioning contract.
But it is the fragmented approach from different providers which is a threat. Low pay of carers, not meeting the national minimum wage, or zero hour contracts, is a problem, and the reason specifically why private providers can be an issue here is that large corporates with scrupulous employment practices can hide behind a veil of being unperturbed from freedom of information legislation.
It is very easy to argue that entire health policy, and even dementia policy, is not political. I don’t believe this is justifiable for a minute. How we prioritise care at all is a reflection of our collective solidarity as a society, and our success in ‘pooling risk’. If I know for example I have a high genetic risk of developing a dementia from my genetic make up, my insurance premiums is likely to go through the roof unless there is tight anti-genetic discrimination law in place in England (which there isn’t).
Having a piecemeal system promotes lack of continuity of care. I think this is fatal for any new English dementia strategy. I think this piecemeal system, whether an artefact of private markets or not, or political ideology, can adversely affect people living with dementia and carers in a number of different ways.
First of all, the caregiver relationship, whether paid or unpaid as carer, fundamentally depends on that caregiver knowing the person with dementia. The happiest relatives I have ever spoken to are the ones who report that they haven’t had a regular changing of the guard as regard carers. This is important for building meaningful relationships with time, as people with Alzheimer’s disease for much of their time, even if they have weak memories for events have strong enduring memories for emotions. Besides, change here can be very distressing, and mental distress can impact on lack of physical wellbeing (although ill being is not necessarily the same as lack of wellbeing).
Secondly, continuity of care by a physician or an appropriate specialist in clinical psychology acts as a safeguard to check the actual diagnosis is right. Some initial cognitive impairments do not progress – they remain mild. A ‘wrong diagnosis’ of dementia does not necessarily mean someone has goofed up as such – it could mean that something that was predicted to progress didn’t. The drive to diagnosing dementia, particularly with financial incentives, could mean we accidentally mislabel mild cognitive impairment as dementia, and this is clearly a tragedy for all involved.
Therefore, a diagnosis disclosure can never be a single hit and run event. There needs to be follow up from the system, whether it’s by the same GP, a hospital physician or psychiatrist, a different member of the memory clinic possibly somewhere totally different; a second ‘set of eyes’ to see whether the initial diagnosis is correct. Granted I agree that knowing what the diagnosis is can be the key to opening services, being armed with information and hence empowered, and all the usual arguments, but the diagnosis must be correct. There is no alternative on this.
Say, for example, you are in fact depressed, not living with dementia, and a clinician in a hurry informs you you are living with dementia. You have presented in response to the question, “Do you have problems with your memory?”. Such a misdiagnosis is likely to make you even more depressed; and not receiving effective treatment for depression, whether as a psychological therapy or medication, or otherwise.
Thirdly, somebody who knows a person well will be able to spot when a person with dementia changes in any way. This could be a ‘difference’, such as the development of a sweet tooth, a ‘deterioriation’ such as in memory, or even an ‘enhancement’ as in acquisition of a love of music, or artistic and creative talents. You can only ascertain this with time. This is where the idea of the review has to change fundamentally.
I don’t feel this review should take place in the hands of medics who repeat scans and tests, ask a few random questions, and document the decline (as dementia is progressive if it is not ‘reversible’ such as vitamin deficiency). Implementation of a ‘year of care’ for dementia, or a national network of clinical specialist nurses, will be able to manage a caseload of individuals living well in a pro-active fashion, each with an individualised care plan; where the goal is to live well, not to firefight in a crisis.
Fourthly, the fundamental crunch time for a person living with dementia is an inability to retain information for a decision, an inability to make that decision, and an inability to communicate that decision. The starting point is that we can make decisions or have ‘capacity’. This capacity can come or go; and it’s dangerous if we get into the mindset that capacity is all or nothing, but that is the legal shortcut we have in place.
But this capacity needs review on a regular basis, as it fundamentally changes our view as to whether a person can consent or not. People living with diffuse lewy body dementia, for example, can notice themselves one day they’re performing quite well, other days not so well. If we don’t get into the good practice of reviewing capacity and consent on a regular basis, through continuity of care, we will easily arrive at a situation where people are languishing inappropriately on medications. It’s generally felt that, while appropriate for some, antipsychotics prescribing is too high, often inappropriately; some side effects such as drooling of the mouth can be very distressing. It’s currently, rightly, a plank of policy to address the inappropriate prescription of antipsychotics particularly in care homes.
In summary, the ideal would be somebody to accompany a person from the point of diagnosis to the time of end of life; not chopping and changing. I was told by a senior specialist nurse at the National Hospital for Neurology and Neurosurgery, Katy Judd, that one of the most disturbing phenomena for persons with dementia and families is when their ‘contacts’ have ‘moved on’ on such a frequent basis. There clearly needs to be proper signposting with the system, known as care coordinators, but we need to avoid the situation where there is an abundance of signposts and a dearth of frontline care.
But I feel fundamentally continuity of care and support is critical. Having the same mutual followers on a social network on Twitter has the potential to improve wellbeing, and having somebody there by you that you trust is likely to have the same effect. People living with dementia who are stimulated psychologically by positive experiences are likely to find their experience fundamentally of a different nature to those who don’t.
For these reasons I feel that, whatever tactics are used, and whichever government is in office and/or power in England, for the next few years, an overall strategy of prioritising the continuity of care is pivotal.
Writing my book ‘Living better with dementia: champions for enhanced dementia friendly communities’ has been a real eye opener for me.
I think it’s terribly easy to carp from the sidelines about the ‘dementia friendly communities’ policy as implemented in England, but England is in fact helping to lead the way with this policy. ‘Dementia friendly communities’ is a policy which has a strong global backing, with links to the World Health Organisation’s “Age friendly cities”.
The WHO “Age Friendly Cities” recognised that there are basic design features of an urban city, wherever in the world, which might make living in it much easier; such as ‘inclusive design’ which is accessible to people.
Dementia is not just about ageing, so it is a challenge to think about what a dementia friendly ‘community’ might be. It’s important for this to be a ‘community’ not just a city, as it is recognised that around the world there are remote or rural areas where people who’ve been diagnosed need to feel welcomed.
When I went up to the Alzheimer’s Europe conference in Glasgow earlier this year, I had the good luck to meet Ann Pascoe in the hôtel where we weree having her fringe events. She has been doing groundbreaking work on rural dementia friendly communities in Scotland. I subsequently met one of team doing great work on dementia friendly rural communities in Wiltshire at the Dementia Action Alliance meeting the other day.
I met Toby Williamson from the Mental Health Foundation too at Glasgow, as well as Grainne McKettrick who first started her work on equality and equity at the Alzheimer’s Society in Scotland. I am delighted that Grainne has allowed me to quote from her speech in my one of my book chapters for the book I am submitting.
That chapter is on reconciling a rights-based approach promoting dignity and autonomy, with other mechanisms to promote ‘choice’, in a more consumerist way, through ‘personal budgets’ or ‘self directed support’.
Grainne remarked in her email to me yesterday how she had been really impressed with how fast the policy stream for this has taken pace in the last few years.
I think this is indeed worth noting for England. In the last fee years, we have seen a number of aspects suddenly converge at once, which have made a really big impact: these include the recognition of the UK government of the UN Convention on rights for disabled citizens (a few years ago), the Equality Act (2010), “dementia friendly communities” and the Prime Minister’s Dementia Challenge.
A welcome move will be there will be some sort of ‘standard setting’ for dementia friendly communities. It is far too easy for some communities to claim that they are ‘dementia friendly communities’, for their own promotion, rather than meeting an accepted reasonable level of requirements.
I think it’s great that people living with dementia can expect now a better level of service in the high street, say from a high street bank. But it’s important that this policy doesn’t raise inappropriate expectations.
But it is also true that this policy should raise expectations on employers dealing with people of a certain age, say in their early 50s, who might be developing a dementia in the younger age group, such as diffuse levy Body disease, vascular dementia or Alzheimer’s disease.
It’s a legal obligation for employers to make ‘reasonable adjustments’ against anyone with a ‘protected characteristic'; and dementia is one such characteristic, coming under the disability umbrella.
So why are there not many test cases for unfair dismissal for people who are sacked ultimately because of developing dementia? I have given this some considerable thought in the last few months since meeting Toby Williamson, and I reckon the answer is predominantly two fold.
Firstly, I don’t think it’s thought to be certain that the problems faced by an employee is due to a dementia at the time of ‘sacking’ with an element of mutual collusion that neither party is hoping for the likelihood of such a diagnosis. There are also intrinsic problems in England in areas of the country for achieving the diagnosis in a prompt manner. Prof Sube Banerjee warned recently how policy should not promote ‘high quantity, low quality’ of dementia diagnoses, on the other hand.
Secondly, I don’t think people are also aware of their legal rights under discrimination law, and, even so, don’t wish to take their employer to court for fear of losing any retirement packages or loss of goodwill, or inherent problems in access to justice. In England, under the current government, the legal aid budget has been slashed due to the Legal Aid and Sentencing and Punishment of Offenders Act (2012).
And another reason is that whilst we may have been promoting dementia friendly communities encouraging companies to cater for their customers living with dementia we haven’t been so keen to push ‘dementia friendliness’, a responsibility (rather obligation) of the employer.
There is, though, encouraging progress being made in other jurisdictions. I think we could no worse than to take a leaf out of the consumer action group of the Alzheimer’s Australia set up in England in pursuing this policy further.