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Whole-centred care for dementia

Health and care need now to be fully integrated, for a number of reasons. There should be a parity of esteem, with mental health conditions such as depression not seen as of inferior importance to physical health conditions such as cancer.

Looking forward to 2015-20, I believe strongly England should head towards a ‘whole’ approach for the person with dementia; call it what you will, but it should be ‘whole-centred care’.

A focus on the person can take on a nuanced twang of individualism, and this lies uneasily with the context of a person within the community (thus far called ‘dementia friendly communities’, but more appropriately called ‘dementia inclusive communities’).

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At the point of diagnosis, one person is not the only person to be given the news. Closest ones are invariably involved. Some friends will drop by the wayside, but over a few years a person living with dementia will reach an equilibrated network of genuine close friends and/or family.

The person living with dementia will need personal relationships to optimise wellbeing. The immediate environment, the social determinants of health, such as housing, transport and education, I feel are vital to the dementia inclusive community.

But where England now needs to be is not simply person-centred – person-centred can too easily become activity-centred or task-centred for a particular person, without duly acknowledging what it is like to be that person (understood, for example, through ‘life story’).

It’s, though, impossible to ignore the detail of Tom Kitwood’s articulation of personhood in the seminal 1997 “Dementia Reconsidered”.

This way forward is not altogether family-centred or relationships-centred either, or environment-centred.

England needs to articulate now ‘whole-centred care‘ for dementia.

And we need to give careful consideration to the parties we’re trying to help.

For example, there’s a case for clinical nursing specialists who can deal with the more subtle medical points which might prevent a person with dementia going into hospital. This point about avoidable admissions, as entering hospital can be a cause of both morbidity and mortality for a person living with dementia.

Effort into the design of the wards, or trained staff, is time well spent for hospital care, given the large numbers of adults in the acute general medical and surgical admissions daily.

But there’s also a case for some people, invariably unpaid family members in a care and/or support rôle, to have support for their resilience in mental health: such caring people invariably find their rôle deeply rewarding, but many find themselves with financial, social and psychological pressures of their own. They therefore need help with coping strategies sometimes, and their quality of life has a direct effect on the quality of life of people living with dementia.

Inability to deal effectively and conservatively with issues such as mobility, falls or incontinence might lead to a person with dementia heading towards a nursing home when he or she had not intended that fork in the decision tree. A clinical nursing specialist is expected to have a beneficial impact here, above that of a ‘dementia advisor’.

Such a rôle might be suitable conceivably for a psychiatric nurse who can cope with work both in hospitals and the community, who is able to take on a proactive case management load. But such nurses themselves have education and training requirements, and need help with making sure that they do not over commit themselves in work.

There is nobody more important in dementia care than the person living with dementia. That’s why it is crucial that all systems for service provision and research programmes are designed in the most part by these stakeholders themselves.

‘Professionals’ should not be abusing the power dynamics by using language, such as ‘challenging behaviour’, ‘wandering’, or chemicals, such as antipsychotics, inappropriately. Use of antipsychotics under the law inappropriately without consent might fulfil the definition of common assault in many jurisdictions.

But physicians and psychiatrists do have a rôle to play, but only if it is a transparent one. There should be no lying about the claims about existing drugs: cholinesterase inhibitors might improve symptoms for some for a limited time window, but are not considered to slow down progression according to the current evidence base.

Medications do have a role. For example, some patients with diffuse lewy Body dementia are best off not being prescribed certain types of medications, and may draw considerable benefit from being treated by others for some particular symptoms. But here medics have to be extremely careful about not pathologising behaviour pejoratively. Easily done.

For a person with dementia with complicated speech understanding and production issues, somebody with speech and language training might be able to advise on how best not to distress a person with a complex language problem – this might include careful repetition of some words (if there is a concomitant short term memory problem), or avoidance of complex sentence structures.

Social care practitioners are also at the heart of dementia care provision. They have an unique dual role in enabling and protecting people’s interests; but you do need to engage with risk to live well, and advice here is crucial. Social care practitioners have an unique combination of relevant skills, such as working with people professionally, understanding of legal issues – possibly with the help of legal professionals – such as equality, fairness and justice, or social science research methods. But I don’t want to leave this area by painting a misleading rosy picture – social care funding has been on its knees, having not been ringfenced since 2010.

At the moment, it’s simply not good enough to have people signposted to various services with services being decimated. While awareness from initiatives such as ‘Dementia Friends’ is undoubtedly to be welcomed, what we actually need is education, and this includes in the workforce itself.

We fundamentally need a rejigging of the health and care services, with prevention of bad health a top priority too. The system needs to be reoriented from fixing illness (but be able to do it when required), and more towards proactive forward-looking care. Many people find themselves totally lost in the system, not knowing what employment or welfare solutions (as well as health and care solutions), are available; a ‘whole person’ approach needs to be a central issue now.

It is now imperative to recognise that people with dementia have rights. This rights-based approach has a legal substrate. With recognition of instruments such as the UN Convention on People with Disabilities, we can force a rethink of what we understand by capacity. While there is a reasonable legal rationale for capacity in protection of parties, too often capacity is weaponised against the person living with dementia. This abuse has got to stop – the assumption in law, though, is that everyone has capacity until proven otherwise.

Whichever way you look at it, to survive, and for services to work well for the benefit of people living with dementia and their closest, there needs to be a flexible and adaptable approach, which places huge public value on stakeholder involvement. This is not simply a dry economic argument, it’s a social imperative for all of society – but better health, provided in a non-fragmented way, can help with the formidable budgetary constraints of the NHS in future.

On that note, it’s now further impossible to ignore that organisations such as the Dementia Alliance International, composed of and representing views of people living with dementia, will now have to be central to all discussions.

 

 

 

 

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Living better with dementia

I had barely known Chris Roberts, new onto the Twitter platform, when he mooted that the title for the book which I had just published didn’t convey the right perspective.

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At first, I wondered who this mysterious ‘Chris Roberts’ was. Chris didn’t seem like a troll to me.

It did however dawn on me, rather belatedly to the book production process, that Chris is absolutely right.

I’ve now met complete strangers all around the world who’ve enjoyed the book. One person even recommended the book to me, to which I replied that I had written it.

“Living well with dementia” sounds very much like somebody external decided what ‘standards’ are for living well (the term is actually the name of the 2009 English dementia strategy).

It has the potential to make people living with dementia feel bad if they have an “off” day (which we are all entitled to have).

At the very worst, it is setting up people to fail, as it is inevitable that there will be aspects of all our lives which are not “well”.

But, having said all that, I feel my first book was entirely justified.

It has even been called a ‘game changer’ by some, but I think I did want to send out a message to my colleagues in the medical profession that focusing on deficits all the time was bound to be demoralising.

It should be much more worthwhile to focus on what people can do.

It still remains one of the few books taking a eagle eye view of dementia, reflecting contemporary research evidence, embracing advocacy, design of homes and built environments, cognitive aspects, and dementia friendly communities.

I remember quite a bit of hostility from the medical profession as to why the book took such a multidisciplinary approach, but my own training has been multidisiplinary, and my personal political philosophy is one of equality and justice.

And this hostility was said with a twang of ‘we know best‘ – which was horrible.

I feel that my first book, published in February 2014, establishes for a wide audience why ‘Living well with dementia’ is more than a mere slogan, in that I hope ‘no decision about us without us’ is more than a chant.

Chris and I, as it happens, are just about to mount Ayers Rock, so to speak.

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I am honoured that Chris, Kate Swaffer and Beth Britton have all written forewords to my follow up book ‘Living better with dementia’, to be published by Jessica Kingsley Publishers on July 21st 2015.

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I think it’s only fair to warn you that it is a very different book to my first one. The full table of contents for ‘Living better with dementia’ is provided here.

I was profoundly influenced by the 24th Alzheimer Europe conference last year – 2014 – which took as its theme, “Dignity and autonomy in dementia”.

I was very much impressed by the listening to individuals living with dementia at that conference, and at the Alzheimer’s Disease International conference in Perth Western Australia where I was indeed on the international advisory board.

Dignity and autonomy are central to ‘rights based approaches’. All of us are entitled to human rights under the auspices of international law.

Across a number of jurisdictions there’s been a fundamental resetting of the compass from ‘friendliness’ to ‘inclusivity’, and inclusivity under human rights and equality law is a pivotal issue.

Furthermore, I feel strongly that any discussion of ‘dementia friendly communities’ must embrace fully the social determinants of health, or inequalities, in thinking about the ‘consumer experience’, such as housing, transport and education. These policy strands must be brought together at this point of time, I feel.

We are undoubtedly in a much better place than simply a few years ago, though there’s much more to be done.

It’s now patently obvious that in England health and social care need to be fully integrated, to further personhood and to avoid people languishing in hospital due to delayed discharge.

There now has to be an open discussion now about people being signposted to appropriate services too (for example speech and language therapy for a person living with a primary progressive aphasia-type dementia).

But it’s simply not good enough to have a lot of signposts with decimated services in reality. I don’t apologise therefore for introducing whole person care and dementia in my book.

I was struck by how other jurisdictions, particularly low and middle income countries, were trying best to help people living with dementia.

Equity in diagnosis and service provision is now a big deal.

Also, the appropriate allocation of resources is fundamental – and particularly so as regards the younger onset dementia population who may wish to find hope through appropriate services as well as through new therapies or ‘Big Data’.

I don’t deny the crucial rôle a dementia advisor can play, but the case now for a national network of clinical nursing specialists I believe.

They are best placed to produce personalised care plans (and we need consistent standards for this across jurisdictions), seeking out health and care problems before they happen.

It’s known that dementia co-exists with many medical morbidities such as frailty. So somebody who can offer continuity of care has much to offer the ‘year of care’ for dementia under the construct of whole person care.

Howeverso defined, there are clearly big issues with not seeing the big picture. Eating well with dementia is as much about the mealtime environment and attention to the senses as it is about the foods themselves. Incontinence is as much about the environment around the person with dementia as it is about a discussion of sanitary pads and embodiment.

The greater attention to dementia has not been without problems. Some people have inadvertently, by accident, introduced stigma by campaigning on dementia.

Language is important, for example in the overzealous use of the word ‘burden’. We are at last making ourselves familiar with the notion that remarkable talents in art and creativity are unleashed in some people as a dementia progresses.

Also, there is something especially remarkable about the perception of music, causing memories to be unlocked. I, for the first time in my book (to my knowledge), provide a cognitive neural architecture of how sporting memories are unlocked by structures in the human brain to retrieve a ‘gist’, and to improve wellbeing.

Whilst I continue to marvel at conferences including panel discussions on the ‘patient perspective’ without a representative living with dementia, “in my bones” I feel things are changing.

There was quite a huge backlash at the 2015 ADI Conference against some ‘person centred care’ not being person focussed at all, like a form of ‘prescription’.

There was a noticeable movement against “BPSD” and “challenging behaviours” as many of us pointed that dosing people up to the eyeballs to shut them up is completely offensive, when there is concomitantly no search for a root cause in a breakdown of communication.

One person’s ‘agitation’ and ‘aggression’ is how many of us behave when we’re simply pissed off.

But the fact that this narrative is changing is a huge cultural change which has been effected globally, and has had repercussions of the volume of antipsychotic prescriptions. I believe strongly further system change is desirable and possible with elected representatives of people living with dementia taking the lead on service provision and research.

My new book “Living better with dementia” is merely a snapshot of where we are in England at this particular time, at a time of great political and social upheaval.

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A single cure is not the only hope for living better with dementia

Many people living with dementia, having been told to expect the worst sometimes from some professionals, find themselves surprised when they’ve found they’ve met some nice people after diagnosis, and learnt new things.

And guess what?

You do not have to be religious to have hopes. Addressing emotional and physical needs are important for meeting hopes. If we talk about ‘burden’ all the time, we see the price and cost of everything and the value of nothing, to lean on a saying from Oscar Wilde. But, seriously, if you have problems with engaging with the notion of ‘hope’, pretend temporarily it’s “quality improvement”.

Hopes have to be meaningful. A hope for a better life cannot mean somebody inflicting on you ‘bingo’ or activities unless you happen to be interested in those activities in that particular time or place.

Hope might be wanting friends and family to be with you following a diagnosis of probable dementia.

Hope might be being inspired by people you respect. Here are Helga Rohra, Chair of the European Persons with Dementia group for @AlzheimerEurope, and Chris Roberts, Board Member of Dementia Alliance International (and Dementia Friends Champion, for example), who both live with dementia and spoke last week at the ADI international conference.

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People’s hopes differ, but finding out what people’s hopes are is important.  To be valued, whether in employment or not, or in a loving relationship, is surely essential.

We recently stayed with Kate Swaffer, Pete and Boris up in Adelaide hills. I commend to you Kate’s recent post on living well with dementia, which concluded as follows:

“Feel free to call yourself or your loved one with dementia a sufferer, privately. It is disrespectful to feel so free to publicly label all of us living with dementia as sufferers. It seems unreasonable to me, that others get upset that some of us feel like we can live well or better, even with dementia. And this does not mean there are not many times where we do suffer, but to always label us all in that way, as if that is the experience of everyone, is unfair and disrespectful. Let those of us wanting to, live with enablement and hope.”

Life is complicated and unpredictable. I’ve long felt that anything can happen at any time.

I have real concerns about clinicians pinning all hope on a “cure”. A cure might bring hope, if properly defined; but we have to be able to say what a cure might look like, for whom. But there is no doubt that a cure perhaps to stop the build up any causative toxic agents in dementia in the brain would be great if appropriately timed, and if safe, and collaboration I feel is a ‘must’ for this hope to have lift off.

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Moving the target from the “cure” to give people hope living with dementia, whichever one of the hundred of dementias that is, is not “giving up”. It is a fundamental reshifting of the narrative from the ‘managed decline’ philosophy of ‘prescribed disengagement‘ (as described by Kate Swaffer) to a genuine attempt to meet people’s beliefs, concerns and expectations.

An expectation might be for an employer to be sympathetic that a person who has just received a diagnosis of dementia is not wildly different to how he or she was just a few days ago.

That is, corporates, resources permitting, should be able to embrace ‘thought diversity’, and find a rôle for an employee which is most suited to someone’s cognitive abilities.

This is the fundamental aim of rehabilitation, and using an understanding of disAbilities to give control to people’s lives.

This is what I encountered many times in the Alzheimer’s Disease International conference last week at Perth, Western Australia, in discussions of “agency”. Mick Carmody is a person living with dementia from Queensland, Western Australia, who I have seen first hand to have benefitting hugely from encouragement from the Dementia Alliance International, a group of people living with dementia.

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With many people with dementia facing an incomplete recollection of events, sometimes relating to himself or herself, facing the future can of course be demanding.

Fear is a historic theme.

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But in the place of fear, some tentative plans can be made.

I spent this morning chatting with Prof Olivier Piquet at NeuRA here in Sydney, Australia.

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Olivier happens to be known well to two colleagues of mine, Prof John Hodges and Prof Facundo Manes who wrote Forewords to my first book, “Living well with dementia”. Olivier explained to me a tranche of his research on the cognitive decisions involved in making plans for the future, whether or not demanding an assessment of risk.

I was familiar with this from another context: a failure to anticipate future outcomes from making dodgy decisions, which is what can happen following problems with the anterior part of the frontal lobe, at the very front of your brain. Of course, living life to the full involves some risk, whether or not you live with dementia.

I live in hope of certain changes to be made in world policy: that is a shift from ‘dementia friendly communities’ to ‘dementia inclusive communities’, for reasons I have recently described. The term ‘friendly’, with good intentions, oversteps the boundary concerning “otherness” for me.

But here Alzheimer Australia and the UK Alzheimer’s Society, for example, have made massive inroads I feel.

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I personally derive hope from the people around me. I have double vision and am physically disabled, and in recovery from alcoholism, but I do not see myself as a ‘sufferer’.

Alice is ‘Still Alice’, and Richard is ‘Still Richard’.

Richard Taylor: I’m Still Richard from Dementia Mentors on Vimeo.

I have just spent two weeks in the company of the most wonderful people I have ever met, in fact.

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Blame Alice: how language wilfully produces power imbalances in dementia

People who’ve received a diagnosis become entwined in power games, often from clinicians, often conferring blame on them.

As public health and discussion of non-communicable diseases produces more detailed effective messaging of risk factors for Alzheimer’s disease and other dementias, we have to be careful. That is, people find themselves ‘to blame’ for developing dementias, for not having eaten the right foods, drunk too much wine, and so on.

The language actually used to describe people living with dementia is not uncommonly completely unacceptable from some (NOT ALL) clinicians and researchers: e.g. “wetter”, “poor feeder”, “screamer”, “vocaliser”, “obstructive”. Alzheimer’s Australia have produced useful language guidelines specifically on this subject.

I know of one situation in a jurisdiction which went as follows.

“The continent” “vocaliser” “screamer” was in a room in residential care. The nurse did not attend to the buzzer. The resident was waiting for the toilet. By the time the nurse came to the “screamer”, the “vocaliser” had become “the incontinent”. As a result of repeated incidents like this, the nursing home received more State subsidy on account of the higher number of “the incontinents”.

Al Power, in his talk for the Alzheimer’s Disease International, remarked that anytime ‘behaviours’ were referred to by clinicians they tended to be used in a negative context.

And there are a number of words specially invented by the medical profession to describe certain behaviours. For example, Witzelsucht (from the German is a set of rare neurological symptoms characterised by a tendency to make puns, or tell inappropriate jokes or pointless stories in socially inappropriate situations.

And such people can be prescribed mood stabilisers, or other non-person-centred therapy.

Excessive crying can happen in some people with dementia, it is said particularly in vascular dementias.

But who is anyone to judge when these behaviours are particularly excessive? It could be that jokes or crying are perceived by that individual living with dementia at that particular place and time to be entirely appropriate.

There are people with vested interests at stake, seeking substantial amounts of money for “challenging behaviours”.  Many people believe that the term “challenging behaviours” is not right, like “problematic behaviours”.

Normally framed as reducing the quality of life of caregivers, challenging behaviour has been linked to behavioural and psychological symptoms of dementia (BPSD). There’s been a lot of money in treating BPSD pharmacologically, but often are actually an understandable consequence of the environment, for example the breakdown of communication of a person living with dementia and surrounding care staff.

If you provoke me, I might get ‘agitated’ or ‘aggressive’, and exhibit ‘challenging behaviours’, but does this mean you should ‘blame me’, and dose me up to the eyeballs with antipsychotic medication?

Rather, such a behaviour may be seen as an active attempt by the person living with dementia to express an unmet need, which could be physiological or psychological. It might be a manifestation of actual distress, or a reaction to the carer, which may lead to a vicious cycle of increasing distress.

However, as Kitwood articulated, ‘personhood’ is the standing or status that is bestowed on one human being by another. It implies recognition, respect and trust. Each person is acknowledged and valued as an individual regardless.

Similarly, if a person with dementia decides to go for a walk, which may well have a clear purpose in his or her mind, it is pejorative to jump to labelling him or her as a ‘wanderer’. I found, when I was reviewing evidence for this for my second book, it was impossible unless I based my literature searches on the words “wanderer” and “wandering” – and so the system validates itself, and the meme “wandering” continues, and no academic or clinician challenges it.

‘Wandering’ is one of those classic words where blame is transferred onto the individual person with dementia – like “getting lost”. The person with dementia there is ‘to blame’, the term is used in a derogatory way, does not concede the person with dementia might have a valid reason to want to leave his or her environment, and defines a person simply by a symptom.

So – the culture of ‘blaming Alice’ continues.

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Pathologising Alice

I’ve now seen the ‘Still Alice’ film twice. Once I viewed it with loads of adverts on a bootleg website, and the other time I saw the film without interruption in the large Riverside Theatre of the Alzheimer’s Disease International conference last week in 2015.

The film ‘speaks to’ a specific gene mutation, pre-senilin 1, familially inherited, affecting a young professional with the dementia of the Alzheimer type in a high income country which is relatively resourced well.

There’s not a single physiotherapist, occupational therapist, dietician, or speech and language therapist. It’s just a single clean-shaven clinical neurologist, in a white coat, who can take time off to attend international conferences.

There’s no scene about Alice being recruited into a research trial. Alice even has a brush with residential care, when she goes to visit a home. Alice never discusses a cure by 2025.

Alice is given a diagnosis of Alzheimer’s disease, not any of the other hundred or so dementias. The author cannot possibly cover all possibilities – but she has touched upon two predominant narratives for dementia, “Alzheimerisation” and “medicalisation” of dementia.

Many people across many jurisdictions find themselves lost in a wilderness following a diagnosis of dementia. And indeed many find themselves subject to a ‘prescribed disengagement’, where they are told to pack up their job while their friends circle contracts.

In England, the direction of travel is towards integrating health and social care, with personalised care plans, pooled budgets, clinical care coordinators. Worldwide, the greater scrutiny being given to dementia has led to a rude awakening of the limitations of the medical model of dementia. The supertanker has, despite of Pharma, or maybe even as an abreaction to Pharma, has instead increasingly embraced a social model of disability, with recognition of the implementation of human rights.

Beth Britton once wrote a blogpost saying ‘Cure and cure – let’s not fight about it”. In main party politics, in many jurisdictions, we have an adversarial system. People play their expected rôles, as per “The Truman Show”. Often hearing the other side’s argument helps you to crystallise your own perspective.

The slogan “care for today, cure for tomorrow” is a serious one for some. Evangelists of the cure narrative claim it might be possible to eradicate Alzheimer’s disease if not the hundred dementias eventually. It is not clear in what form the therapy is going to take, such as arresting all dementias in a pre-clinical stage (highly hypothetical).

It has somewhat become more than a slogan or mantra. It fits very neatly into a neoliberal ideology of a small State. If the Pharma experiment fails in Alzheimer’s disease, you can bet your bottom dollar that the situation will be one of socialising the losses, rather than privatising the profits, pardon the pun.

The character Dr Alice Howland does, however, to all intents and purposes wish to live better with Alzheimer’s disease. She appears in coffee shops, going to her daughter’s play, and playing on apps on her smartphone. This is as much as I can go into without providing massive spoilers, of course.

The husband, of course, is awarded high performance grants for biological research, rather than research into living well or care.

But the film, excellent though it is, doesn’t ‘speak to’ low and income countries, but why should it? But the emerging situation is well on the RADAR, with initiatives such as the 10/66 programme of Alzheimer’s Disease International (ADI).

It is worth, however, being forced to think what particular aspect of dementia the film is ‘raising awareness of’. In the panel discussion, the general consensus was that it raised awareness, and it is tempting to find an excuse to dislike the good intentions of Hollywood possibly out of sheer envy.

And indeed we are coming from a very very very low baseline. I have reservations about the term ‘touched by dementia’, but unless you are ‘touched by dementia’, or happen to be involved with dementia somehow otherewise, it’s possible you can end up knowing very little about it. I have met many people who can’t tell me a thing about dementia.

It is not so much awareness which is needed, but outright education. It’s this education we need to address stigma, discrimination and prejudice.

Every long journey starts with the smallest step, and we are in a better place overall when it comes to putting dementia on the agenda. A minority of campaigners do the ‘cause’ a disservice by spreading misinformation about dementia, but, reservedly, any publicity tends to be welcome publicity if language guidelines are observed.

Alice is ‘Still Alice’. That was, by far, the most important message of all.

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Dementia Inclusive Communities. Are we there yet?

“Today’s local communities are strongest when they enable all, diverse citizens to participate socially, economically and politically. These inclusive communities have better health, improved economic development, stronger political institutions and more effective public services. One in 5 of us is living with a health condition or disability. Economic recovery and social well-being cannot happen without inclusion.”

Hold on a second, this sounds like ‘dementia friendly communities’ doesn’t it?  It’s actually the beginning of the description of ‘inclusive communities‘ on the Disability Rights UK webpage.

 

The most parsimonious explanation for the word ‘friendly’ in “dementia friendly communities” is that dementia friendly communities accommodate the idea of ‘friends’ – people who are sympathetic to what dementia is (or what the dementias are), and have a basic understanding enough to encourage more inclusion.

 

It is, of course, possible to have leaders without followers, as such. In that sense, can you have ‘dementia friendly communities’ without friends? In a way, the discussion is somewhat academic, in that the UK through various converging means has achieved an ‘ambition’ of one million friends by the intended time (March 2015). It, in a sense, depends on whether you define ‘friends’ in UK as people who’ve done the ‘Dementia Friends’ programme in some form; or whether they are sympathetic to the aims of the programme, raising awareness of dementia and turning communication into action, through some other way.

 

Why do we need a million people, or more, to be “friendly”? As Helga Rohra remarks, “why don’t we treat everyone with respect?” Respect, as Kate Swaffer observes, should mean “real respect” about seeing the person living with dementia, not simply the symptoms. But taking it literally – one supposes that “dementia friendly communities” are communities, howeverso defined as a street, an entire village or whole city, which has achieved ‘dementia friendliness’, such as dementia-friendly buses, dementia-friendly buses, or dementia-friendly banks.

 

And, in this transactional society as a whole, “dementia friendly communities” can be postulated to have a number of beneficiaries, the recipients of friendliness, the people being friendly, and possibly the people promoting the idea (including charities). I published my blogpost “It’s time we talked about ‘dementia friendly communities'” in March 2014, and I don’t think my views have fundamentally changed since then. At the time, indeed, I referred to ‘inclusive communities’.

 

The problem is: I can still be friendly to you even if I strongly dislike you. More’s the point, I can be friendly without being inclusive. ‘Inclusive’ better reflects intergenerational aspects of the dialogue about living with dementia, and the issue that people living with dementia have different living well, timely diagnosis and service provision needs. It also reflects that people living with dementia are often living with a plethora of medical issues, e.g. arthritis, which might also limit their involvement with the community e.g. taking a bus.

 

It’s possible to have friendliness even in face of outright division and opposition. And it is possible to take friendliness to an extreme, encouraging a sense of victimhood within a person who happens to have received a diagnosis of dementia.

 

Helga Rohra, a leading campaigner living with lewy Body dementia, in her plenary for the ADI conference last week, remarked to a small ripple of spontaneous applause, “I do not want to be a victim of dementia, but I want to be a victor of dementia.”

 

My thoughts on this converged after the recent Alzheimer’s Disease International (ADI) conference last week, where I asked Chris Roberts’ daughter whether she felt the word describing a community’s attitude towards Chris, should be “friendly”. She paused, and said, “No”. And this matters hugely – as when a person is diagnosed with dementia, invariably the diagnosis affects the friends and that family of that person. That person is at that point at risk of social isolation, which any policy of ‘friendliness’ must mitigate against as one of its key aims.

 

I asked Chris. Chris too said “no”. I then asked Chris what might be a better word, and he suggested “inclusive”. I further asked Kate Swaffer, and she said “accessible”.

 

And “inclusive” and “accessible” are certainly constructs which go together happily, for example in the field of urban design of built environments, or ease of shopping or use of transport. Chris Roberts, Helga Rohra and Kate Swaffer had both referred to their lived experience post diagnosis of dementia last week. They all independently described their wish to be included in every conversation.

 

Dr Jess Baker included the term ‘inclusive dementia-friendly communities’, raising the possibility that dementia friendly communities could theoretically be non-inclusive.

Both inclusivity and accessibility both promote a sense of identity of the person accepted by the immediate world around him or her, and promote autonomy and dignity. People who have received the diagnosis of dementia are still the same persons they were before their diagnoses. ‘Alice’ is ‘Still Alice’ for example. Younger people who’ve received a diagnosis need to be kept fully integrated in society, including employment if so desired, shifting the debate from “cost” and “burden” to “value”; with coherent pathways of care and/or support.

 

Are we in a better place than previous to where we were before the 2012 UK Prime Minister’s Dementia Challenge, as regards the ‘consumer experience’ of those living with dementia? I think the answer is almost certainly yes, though one would have to ask the various consumer groups around the world. We need to keep momentum up, and make sure that we do not retreat from the massive progress which has been made.

 

I feel now there has been a critical momentum building up, and now is the right time to crystallise “dementia friendly communities” as “dementia inclusive communities”.

 

Dementia Alliance International provides “a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life”. Kate Swaffer, Co-Chair of the Dementia Alliance International, a large international group of people living with dementia, working now closely with Alzheimer’s Disease International to give people with dementia an enhanced platform, further emphasised the need for rehabilitation for people living with dementia. Such a perspective necessitates viewing dementia as a ‘disAbility’ (dementia fulfills the definition of disability in international law); the counterfactual therefore needs to be enabling of people with dementia through the dementia inclusive community.

 

The current legal frameworks in England for equality (2010) and human rights (2010), both internationally and nationally, pre-existed the UK Prime Minister’s Dementia Challenge (2012) by only a few years. The ‘genie is out of the bottle’, I feel, making it very difficult to backtrack on this seismic shift in policy. As Glenn Rees, now Chair of the ADI says, policy is strongest which evidence is blended with the actual views and commitment of consumers.

 

Possibly dementia is now reaching a place where sex equality and disability were, but I feel the term ‘dementia friendly community’ is rather anaemic in the absence of a legal underpinning.

 

But how will know whether ‘dementia inclusive communities’ are getting anywhere? We will see more signs of inclusivity and accessibility, say in banks, transport or the built environment. Less easy to define is when societal attitudes have changed. Standards such as the recent British kitemark for dementia friendly communities help to deter people who can say ‘job done’ with a ‘dementia friendly’ sticker.

 

Although a right to offend is legally possible, anti-segregation has been quite possible to legislate upon. Changes in South African law made Apartheid impossible, whatever the current opinions of people living today. At worst, I’ve heard a handful of people living with dementia describing their experience of society’s attitude towards them as ‘social apartheid’, and this separation is easier to maintain with demonising terms in reference to dementia.

 

That’s why we do need media guidelines for the general media, in talking about dementia. That’s why we do need to recognise the diversity of all people living with dementia in public. And we do need to see them included at the very highest levels of policy even, not simply in a tokenistic way.

 

As Kate Swaffer said last week at the ADI Conference, “It’s going to take a lot of courage for us to work together.” Indeed, Kate at the 2015 ADI conference advised a few key steps in establishing dementia inclusive commitments, such as raising education, promoting volunteering, advancement of dementia advisory groups and local dementia action alliances, and meaningful engagement of people living with dementia; and for this all to happen from the very first step.

 

All this, of course, is not to poo-poo the massive achievements that have been achieved so far, not least in the progress of the Dementia Alliance International’, but we are – regrettably – ‘not there yet’.

 

 

 

 

 

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Does combating stigma offend the 'rights based approach' in dementia?

Let’s for the sake of brevity keep the definition of ‘stigma’ short – but of course it has to be attempted in some way.

Stigma, according to the current Oxford English Dictionary is defined as follows firstly.

“A mark of disgrace associated with a particular circumstance, quality, or person:the stigma of mental disorder to be a non-reader carries a social stigma.”

One of the issues about human rights is that you can’t ‘pick and mix’ human rights. You have to take the full package. You can’t buy into some, and not the others. They apply to everyone however.

In vogue at the moment is a ‘rights based approach’, but, since mooting the issue, Daniella Greenwood (who is here at the ADI Conference 2015) voiced some concern it could encourage a checklist approach.

Checklists are essentially useful, I feel, as the information in them, and can provide inappropriate totality.

Like ‘person centred care’ (the phrase that is), the operationalisation and marketing can obfuscate the real sentiment.

For example, prior to the necessary legislation, racial discrimination was lawful in South Africa, so Gandhi was the ‘boat rocker’ to use modern NHS slang.

There was nothing on the checklist about racial discrimination so notionally it was not a legal issue.

Freedom of expression is a human right, article 10 in the English jurisdiction.

It immediately for many conjures up the famous saying,

“I do not agree with what you have to say, but I’ll defend to the death your right to say it.” ― Voltaire

Along with #JeSuisCharlie and other horrific incidents, there has been further scrutiny of the wider operation of this right.

Take for example this, “The Right To Offend? Mehdi Hasan Denies ‘Absolute Right’ To Freedom Of Speech”.

” Speaking opposite Times columnist David Aaronovitch at a HuffPost/Polis debate, on the right to offend, Mr Hasan argued free speech was being “fetishized” and claimed many free-speech campaigners in the west were guilty of “brazen hypocrisy.”

“How can you construct a civilised, cohesive society if we go round encouraging everyone to insult each other willy nilly? Yes we do have a right to offend but it’s not the same as having a duty to be offensive. You have a responsibility not to go out of your way to piss people off. I have the right to fart in a lift, but I don’t do it because it is offensive.

“Some people want the right to be offensive but then get cross when people are offended.” “

There are various ways in which ‘dementia’ has become medicalised, which has supported the power of the medical profession over others in discourses, arguably. In the 1960s, warehousing of people with problems with mental health meant that drugs could be easily delivered. “Living better with dementia” in the community would’ve have been unheard of.

When Robin Williams took his own life, and who had been diagnosed with a dementia, immediately the potential for media explosion was commenced.

This subject combined two taboos – “dementia” and “suicide”.

Take for example this Daily Mail article entitled, “Robin Williams’ suicide was triggered by hallucinations from a devastating form of dementia”.

The article soon reveals,

“Court documents obtained by TMZ reveal that Williams, who was found hanging from a belt at his home in California last August, was suffering from dementia with Lewy bodies.”

Whether someone ‘suffers from dementia’ has been revisited numerous times, and I don’t intend to  cover it here.

But the starting point, I feel, is that the stigma surrounding dementia goes a long way to explaining why people who have received a diagnosis of dementia don’t want to tell people about the diagnosis: sometimes called “coming out” with the diagnosis, to reflect perhaps a secret that could be hidden.

In response to Williams’ death, in the blog “Humanist Voices”, “Mental Illness: Stigma, Silence, Suicide — or Support?” Audrey in September 2014 had the following to say:

“Mental illness need not define a person as it often has in the past, but we have a long way to go to truly help those in need. Over the centuries, we as a society have ostracized, ridiculed, imprisoned, institutionalized, over-drugged, shamed, blamed, stigmatized and forgotten those who struggle with diseases of the mind. Quite unlike the history of physical ailments — which has had a distinctly different and more promising trajectory. Today we like to think we have a more enlightened view of mental illness, but countless people still fear the stigma of “coming out” with their mental health “issues” to peers and colleagues. How many among us try to hide our own struggles or those of our family members?

In the last half century society has moved away from overcrowded and often abusive mental institutions or asylums to a more humane community-based mental health approach. However, neither public funding nor insurance plans have ever provided the necessary support and resources to make such programs very effective. In fact, the lack of adequate community mental health services has given rise to jails and prisons becoming warehouses for the mentally ill in recent years. Even Minnesota faces a shortage of providers and hospital beds for those with serious mental illness as a recent legislative roundtable in west-central Minnesota revealed. And since William’s (sic) death, local media outlets such as Minnesota 2020 and MPR have been shining a light on the growing need for more mental health services across the state.”

So here we have one argument – that stigma is exacerbated by people not wanting to talk about their dementia diagnoses (“under expression”). Or, in the alternative, people feel bombarded with negative memes about dementia, e.g. “suffering”, “horrific”, “tsunami” or “time bomb”, in the general media. In any case, it can easily be argued that freedom of expression is a right that needs defending now as much as ever; it is therefore important to argue, say, freedom of expression “is the cornerstone of democracy, a vital foundation for tolerant societies.”. As this Amnesty International blogpost goes onto say, “According to the Committee to Protect Journalists, 61 journalists were killed last year in direct reprisals for their work. The most dangerous country was, unsurprisingly, Syria. Just over a week into 2015, and the CPJ’s figure is already at five. The most dangerous country? France.”

But is the content of the media something we should take some notice of?

Yes – for a start the ADI Conference has language guidelines.

According to Miriam Bar-on (2000), in the USA, ” based on surveys of what children watch, the average child annually sees about 12 000 violent acts,5 14 000 sexual references and innuendos,6 and 20 000 advertisements.”

Television has the potential to generate both positive and negative effects. It turns out that an individual child’s developmental level is a critical factor in determining whether the medium will have positive or negative effects.  Current literature suggests that perhaps physicians can change and improve children’s television viewing habits, or even excessive television watching contributes to the increased incidence of childhood obesity?

And interpretation of language is not new.

According to the Stanford Encyclopaedia of Philosophy, “Hermeneutics” is defined as follows:-

“The term hermeneutics covers both the first order art and the second order theory of understanding and interpretation of linguistic and non-linguistic expressions. As a theory of interpretation, the hermeneutic tradition stretches all the way back to ancient Greek philosophy. In the course of the Middle Ages and the Renaissance, hermeneutics emerges as a crucial branch of Biblical studies. Later on, it comes to include the study of ancient and classic cultures.”

Kate Swaffer, Co-Chair of the Dementia Alliance International and living with a dementia, argued this recently in Dementia Journal in an outstanding paper.

“It is therefore imperative that we aspire to change views of and about people with dementia, and begin to include them in the research and conversations about them. [Ken] Clasper (2014) writes a blog about living with dementia, and said: ‘…we wish to raise awareness of dementia, is that we all live on hope, that we can in our own little way go a long way to remove the stigma which we hear of every day in dementia’.”

So this is a case of ameliorating under-expresssion of information, consistent with the notion that prejudice and discrimination arise from lack of information and/or ‘lack of changing your mind’ when presented with new information.

And Kate explains, why despite Voltaire, it is in fact a big deal to be offended,

 “Whilst, we may have changed, we are all there. Whilst we may in fact suffer, many of us are not sufferers, and find that term offensive. We no longer refer to people with physical or intellectual disabilities as retarded or as retards, as it is offensive to them, even though technically they [we] are retarded. I place myself in the disabled category, as I have many disabilities caused by the type of dementia I have. Technically, people with dementia are ‘demented’ too; however, most of us find that and other terms offensive, and have a right to stand up and speak out about it.”

I have seen with my own eyes how the medical profession culturally in an institutionalised way harbour anti-dementia memes like “demented” when talking with other doctors. I’ve been on ward rounds where the Consultant has turned to junior medical staff, with the person with advanced dementia waiting to be discharged after an operation, and said, “But don’t worry about him as he’s got dementia”.

We have furthermore to be extremely careful or vigilant that the global policy of “dementia friendly communities” does not promote a sense of ‘otherness’, defeating the prime objective of inclusive.

Swaffer (2014) warns:

“The determination by governments and Alzheimer’s societies and organizations around the world to promote dementia friendly communities and dementia champions still mostly supports the ‘about them, with them’ position, which has the potential to further stigmatize people with dementia. To date, only a few people with dementia have been included in the discussions, planning and decisions about what makes a community or organization dementia friendly.”

But there’s little doubt in my mind that dementia friendly communities is a valuable concept, even if the nosology isn’t quite right?

Danielle White from Alzheimer’s Australia NSW hopes that “understanding of the condition will turn into action”, a similar if not identical to the sentiment behind the UK’s “Dementia Friends” initiative.

She has said: “These figures show why it’s so important for us all to look at how we can create communities where people living with dementia are included, respected, valued, and supported to maintain a good quality of life.”

In a paper entitled, “Dementia Discourse: From Imposed Suffering to Knowing Other-Wise”. Gail J. Mitchell, Sherry L. Dupuis, and Pia C. Kontos, this intriguing diagram pops up on page 12 which I felt was a useful summary infogram about the ecosystem of a stigma.

otherness

Venance Dey has said that, “awareness about the disease was almost non-existent in Ghanaian communities hence the formation of the AG to raise awareness about dementia in local communities that would encourage government to build systems for all those affected to have access to quality care and support they needed.”

But we should care about the age at which stigma memes might get implanted.

Psychologist Dr Jess Baker has for example in Sydney’s west observed a group of Scouts watching DVDs about dementia.  The video forum is part of a UNSW-led project that aims to create a more dementia-friendly society by educating the next generation. Information gleaned from the children will be used to develop an online education program, designed to align with Australia’s education curriculum.

.“We know that children are more responsive than adults to anti-stigma education because their beliefs are not as firmly developed,” according to Dr Jess Baker.

But the impact of mass media and popular culture should not be underestimated. A group of 11–14 year olds interviewed for a British dementia study made repeated references to the “dementors” in the Harry Potter movie series – half-dead creatures that feed on happy thoughts and memories leaving their victims in a mindless state.

According to Wikipedia,

“Rowling, by her own account, created the dementors after a time in which she, in her own words, “was clinically depressed”. Dementors can therefore be viewed as a metaphor for depression.”

First problem – the confusion between depression and dementia. Indeed, some depression might get confused as dementia (or vice versa); but there is a co-morbidity between depression and dementia.

“Despite their attachment to human emotion, dementors seem to have difficulty distinguishing one human from another, as demonstrated by Barty Crouch Jr.’s escape from Azkaban, wherein they could detect no emotional difference between the younger Crouch and his mother.”

Having abnormal emotional responses can be a feature of the frontotemporal dementias. Indeed, Prof John Hodges from NeuRA and Prof Simon Baron-Cohen have both been very interested in how the neural circuitry involved in reading others’ minds might go awry in behavioural variant frontotemporal dementia.

“The dementors are “soulless creatures… among the foulest beings on Earth”: a phantom species who, as their name suggests, gradually deprive human minds of happiness and intelligence. They are the guards of the wizard prison, Azkaban, until after the return of antagonist Lord Voldemort.”

source Melissa (30 July 2007). “J.K. Rowling Web Chat Transcript – The Leaky Cauldron”. The-leaky-cauldron.org.

In popular culture, dementia is often portrayed as robbing people of their happiness.

“The presence of a dementor makes the surrounding atmosphere grow cold and dark, and the effects are cumulative with the number of dementors present. The culmination of their power is the ‘Dementor’s Kiss’, wherein the dementor latches its mouth onto a victim’s lips and consumes its soul or psyche, presumably to leave the victim in a vegetative state.”

And of course there are people like me who feel that your “Self” is not “robbed away from you” during dementia.

And finally,

“Beneath the cloak, dementors are eyeless, and the only feature of note is the perpetually indrawn breath, by which they consume the emotions and good memories of human beings, forcing the victim to relive its worst memories alone.”

Emotional regulation is affected quite late on in Alzheimer’s disease because of the usual time path of the condition, but the analogy of which memories are “robbed first” does not even correspond to actual life – in actual life, in the dementia of the Alzheimer’s type, recent memories go much earlier than later memories (the “so called temporal gradient”), and in fact worst memories might be emotionally charged such that they’re actually very vivid (a similar phenomenon happens with the effect of the stress hormone cortisol on memory formation.)

If we ‘go’ with the “rights based approach”, it’s pretty likely we’ll have to take ‘the full package’, which includes freedom of expression conversing with a person with dementia but also a freedom of expression of a person with dementia. Except…. there’s a catch here. If somebody’s acting badly with a person with dementia, it might be ‘freedom of expression’. If the person with dementia dares to say something back, it ends up being ‘agitation’, ‘aggression’ or ‘challenging behaviour’.

It essentially is a finely balanced deck of cards, where it just takes one thing to make the whole thing come crashing down.

cards

Reading

Bar-on, M.E. (2000) The effects of television on child health: implications and recommendations,  Arch Dis Child 2000;83:289-292 doi:10.1136/adc.83.4.289.

Swaffer, K. (2014) Dementia: Stigma, Language, and Dementia-friendly Dementia 2014 13: 709

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Does a focus on choice not inequality fail people wanting to live better with dementia?

fat pig

Equality means all things being equal. Critics of equality say it’s a race to the bottom, but I feel that anything which exacerbates inequality, such as marketisation of healthcare, will hamper the experience of a person living with dementia – in a market called a ‘consumer’.

But clearly inequality in service provision can clearly hamper choice: so the question comes for ‘consumer experience’, should one be concerned about any infrastructure which promotes inequality as regards living better with dementia? Categorically, the answer is “yes”. The Japanese has been promoting end-of-life care at home or at nursing homes, rather than at hospitals, which is expected to increase patients’ choices of places to get care. In 2006, a special fee schedule for clinics registered for providing planned home care was introduced, which highly values care in communities. One of the major difficulties is that almost all clinics in Japan are single-handed. Group practices and polyclinics are not so popular. Therefore, in order to provide 24 hour home care, clinics have to collaborate with other clinics and hospitals. This process is not so easy, and it is especially difficult to find other clinics providing the same level of home care in geographically small areas. One newspaper reported that around 30% of ‘home care support clinics’ had not provided end-of-life care in the community at all. In addition, inequality in the number of ‘home care support clinics’ among prefectures was reported in the newspaper.

Whilst the narrative appears to be pre-occupied by ‘consumer choice’, it is impossible to get away from inequality, and – with the lower the income – the less convincing the ‘choice’. This is important. If you look at the worldwide picture of dementia, it’s clear that inequality has a massive rôle.

Take for example Prince and colleagues (2012). They reported on a population-based cohort study of all people aged 65 years and older living in urban sites in Cuba, the Dominican Republic, and Venezuela, and rural and urban sites in Peru, Mexico, and China, with ascertainment of incident 10/66 and DSM-IV dementia 3-5 years after cohort inception. They found supportive evidence for the cognitive reserve hypothesis, showing that in middle-income countries as in high-income countries, education, literacy, verbal fluency, and motor sequencing confer substantial protection against the onset of dementia.

I feel that the notion of ‘choice’ has now cumulatively given consumerism a pedestal status in dementia discussions, when often this choice is either weak or absent altogether.  The idea of choice and competition, ideally suited to private sector ‘suppliers’ or ‘providers’, hides behind that the assumption that improved choice drives up quality (and possibly drives down cost). There is actually a weak evidence base for this, instead leading to the finding that few large suppliers tend towards a homogenised product at a higher profit margin. Certainly, the idea that this market competition drives up efficiency is virtually non-existent.  From this weak starting point, I see no reason to triangulate consumerism with care. I think it’s perfectly possible to articulate a narrative based on individuals following a diagnosis of dementia taking control of their lives (i.e. autonomy), and the aim of public policy should be try to address other key aspects which will affect this autonomy, such as other health, education, housing or employment. Unsurprisingly, therefore, I come from a ‘whole person’ aspect. It’s clear from a consistent stream of literature that pre-existing inequalities such as affluence or income or education can affect persons’ access to information.

Whatever one feels about choices ideologically, it is hard to escape quality of choices is in some way related to the quality of information. I feel our aim should be to reduce inequality through lack of information rather than to fixate people’s minds on ‘shopping around’.

Information can undoubtedly be useful. For example, the University of Wollongong has published a freely available booklet “Driving and dementia – a decision aid” (v3 2014). The decision tool is available for download as a hard copy and as an online version (see blogpost here).

“the aim of this booklet is to assist you in deciding when to stop driving after receiving a diagnosis of dementia . It is hoped that early planning for driving retirement from driving will avoid the need to stop suddenly”, Dr John Carmody, A/Prof Victoria Traynor, Prof Don Iverson and Cathie Andrew (OT).

Given that I feel the notion of choice can be bogus, I don’t think the emphasis on consumerism driving care is an appropriate one. This construct relies too heavily on a power imbalance between provider and recipient, and views social services and care as some sort of commodity like milk or sugar. But human relationships are hard to convert into a financial figure, and it is not fitting, I feel, to know the cost of everything and the value of nothing.

I think it is unsurprising that a properly resourced system where people’s relationships are maximised, say through the Senses Framework, will optimise the feeling of wellbeing in a person who has received a diagnosis of dementia, but this should be seen as a success of consumerism – rather, it should be more accurately be viewed as running in parallel with consumerism, if you are driven by the goal of maximising shareholder dividend.

But maximising shareholder dividend is not an ethic – it is a means to some sort of end.

Paul Krugman, for me, dealt with the problems of ‘consumerism’ in an excellent article for the “New York Times”:

“But something else struck me as I looked at Republican arguments against the board, which hinge on the notion that what we really need to do, as the House budget proposal put it, is to “make government health care programs more responsive to consumer choice.”

Here’s my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as “consumers”? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car — and their only complaint is that it isn’t commercial enough.”

Fundamentally, I feel that inequalities, not choice and consumerism, should be a focus of why some people with dementia aren’t living better. It is possible that consumerism improves health inequalities – but it is not at all probable, if we look at the evidence base? The consumerist exponents can pick numerous fruit from the commodification tree. When you focus the mind on spending, it focuses you on rationing – “not having a blank cheque book” at one end, but possibly somebody having insufficient money through a personal budget at another. The transfer of this rationing from the State to the consumer means of course that rationing of good care cannot be blamed on the provider, but the consumer or user of services.

But persons with dementia did not ever wish, I feel, to have the further label of ‘consumer’ on top their label which leads to the ‘prescribed disengagement’ articulated by Kate Swaffer.  And with the illusion of choice, there brings in the option of topping up choice, through an externality such as vouchers.   Relationships between people with dementia themselves are powerful, as you will soon learn from any person living with dementia involved in any peer internet group. While ‘experts’ are expected to share their knowledge, it is not as socially accepted for people without the expert status to lecture others. Social positioning theory looks out how people establish power relationships through speech, and how this can enhance a sense of Self and identity. This is of critical value, for example, in couples living with dementia, and it is that sort of approach which is valid in real life, whether or not anyone is ‘consuming’ services from somewhere.

The danger with treating services as commodities is that you treat the ‘end users’ of such services as commodities too. Ultimately what affects relationships is the quality of communication. The approach of  a clinician, not notorious for emotional intelligence, to assessment and management may not be culturally appropriate or relevant for diverse communities. But when working with such communities it is important to recognise the myriad differing understanding of wellbeing, health, illness, mental health and dementia, knowledge of service availability and pathways to access. These factors will vary widely and affect the way people interpret their situation and react to care and treatment. New initiatives can help a lot, but its value, here too, I feel can better explained by reducing inequality in healthcare rather than improving choice.

It might however be possible to improve a ‘consumer experience’, if you are paying for a care service, by reducing inequality. Elder abuse is any act that harms older people and that is carried out by someone they know and should be able to trust such as family or friends. Such harm can be financial, physical, sexual, emotional or psychological, including mistreatment or neglect. IIn 2009, Fraga and colleagues did a project on abuse of elderly in Europe (ABUEL) was conducted in seven cities (Stuttgart, Germany; Ancona, Italy; Kaunas, Lithuania, Stockholm, Sweden; Porto, Portugal; Granada, Spain; Athens, Greece) comprising 4467 individuals aged 60-84 years.

It had  already been known that there exists is a societal and community level dimension that adds information to individual variability in explaining country differences in elder abuse, highlighting underlying socioeconomic inequalities leading to such behaviour.  A three-year ECCV project has recently aimed to increase awareness of elder abuse in ethnic communities (2012-2015). ECCV has worked in partnership with ethnic and multicultural organisations and Senior Rights Victoria to deliver culturally appropriate messages about elder abuse, its prevention and pathways to support.

There can be a disparity between trainees wanting to work in rural and urban settings, and the solution to this is more to do with decreasing inequality than improving choice, even the upshot might be improved competition and choice in learning opportunities for trainees. The “Interprofessional Learning (IPL) program” at the Day Therapy Unit (DTU) in Geraldton, Australia, has facilitated the development of clinical competencies within a rural context for allied health students since January 2012. This program was developed through the ‘Allied Health Clinical Training Model’ project completed by Western Australia Country Health Service with funding from Health Workforce Australia for 2012-13. Feedback from students on completion of placements has been positive and has indicated an increased willingness to consider rural job opportunities. Additionally, four previous students have been recently employed in Geraldton.

It is difficult to deny the drive behind reducing inequalities, or facilitating personhood. But implanting care transactions by care providers in ‘person centred care’, because of the nature of the commercial market, itself imposes inequalities which can hamper a person living better with dementia. Any discussion of the ‘consumer experience’ must therefore co-exist with a critical look of whether inequalities have been minimised, why and how. And, if not, why not?

Marketing something as ‘person centred care’, where poorly motivated staff are on zero hour contracts with exclusivity clauses, cannot conceivably the all-embracing solution. Furthermore, there is a technical legal point, that as such a person cannot have a legal right to choice through a personal budget. On the other hand, a person can have a legal right to equality in many jurisdictions, where dementia is a protected characteristic under disability, and enshrined legal rights. See what I did there?

 

Reading

Fraga S, Lindert J, Barros H, Torres-González F, Ioannidi-Kapolou E, Melchiorre MG, Stankunas M, Soares JF. (2014) Elder abuse and socioeconomic inequalities: a multilevel study in 7 European countries. Prev Med,  Apr;61:42-7. doi: 10.1016/j.ypmed.2014.01.008. Epub 2014 Jan 15.

Prince M, Acosta D, Ferri CP, Guerra M, Huang Y, Llibre Rodriguez JJ, Salas A, Sosa AL, Williams JD, Dewey ME, Acosta I, Jotheeswaran AT, Liu Z. Dementia incidence and mortality in middle-income countries, and associations with indicators of cognitive reserve: a 10/66 Dementia Research Group population-based cohort study. Lancet. 2012 Jul 7;380(9836):50-8. doi: 10.1016/S0140-6736(12)60399-7. Epub 2012 May 23.

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How will we know when the war against stigma in dementia is won? We won't.

stigma 2

How will we know when the war against stigma in dementia is won?

We won’t.

I once went to see Kay Redfield Jamison talk at the Society for Neurosciences conference in Miami in the late 1990s. She is both a professor of psychiatry and lives with from bipolar disorder.

She has previously gone on record to identify that stigma can prevent help-seeking behaviour, and this finding extrapolates across a number of conditions such as obesity or drug addiction.

“It was difficult to make the decision to be public about having a severe psychiatric illness…. but privacy and reticence can kill. The problem with mental illness is that so many who have it—especially those in a position to change public attitudes, such as doctors, lawyers, politicians, and military officers—are reluctant to risk talking about mental illness, or seeking help for it. They are understandably frightened about professional and personal reprisals.”

This “enacted stigma” is very dangerous.

Recently, at a meeting of the Mental Health Foundation, I was in a small roundtable discussion of ‘the visibility of dementia’.

One of the other delegates, himself in a wheelchair, argued that he was proud to be a wheelchair, but not proud of his dementia.

This observations raises a number of issues. Firstly, individuals react to disabilities in different ways. Secondly, it is not necessarily true that identifying a disability is empowering.

We were discussing this in relation to whether a rights-based approach, based on the legal rights which attach themselves to dementia being a disability, was an empowering phenomenon.

A right against being unfairly treated unlawfully constitutes ‘discrimination’, and use of the term discrimination orients unfair attitudes and actions of the perpetrators and society rather than on faults in the “service user” such a person with a mental health problem.

One of the lingering issues about ‘dementia friendly communities’ is how one recognises a person in the community to be friendly to; or maybe this is genuinely not the point, in that communities should be friendly to people whether they are ‘secret shoppers’ or not.

Prof John Ashton in discussing the recent devolution of health and care services in Manchester alluded to a whole ecosystem of services needing to be devolved including financial services. In the context of ‘integrated health’, it is now known that wellbeing is critically dependent on environment such as housing or transport.

Erving Goffman in his seminal book on ‘Stigma’ (1963) calls stigma ‘a trait which is deeply discrediting’.

He refers to the visibility of stigma:

“Some signs carrying social information, being present, first of all, for other reasons, have only an overlay of informational function. There are stigma symbols that provide examples : the wrist markings which disclose that an individual has attempted suicide; the arm pock marks of drug addicts; the handcuffed wrists of convicts in transit;or black eyes when worn in public by females”

A person experiencing a delayed discharge (perjoratively called a ‘bed blocker’) living with dementia may not visibly be living with dementia. There will not a label on his or her forehead saying ‘I live with dementia’ (but there have been initiatives where patients with dementia are identified in hospital to aim to improve their patient experience and outcomes).

Likewise, a person with the HIV positive serological status may not visibly have visible stigmata of disease.

And yet these are the people singled out by Katie Hopkins (dementia) and Nigel Farage (HIV).

But Hopkins language has maximum impact:

It, arguably, plays on a ‘perceived dangerousness’ of that person to society, in the same way that Farage’s allusion is to a person with HIV unfairly using up scarce resources.

This ‘perceived dangerousness’ phenomenon is common in stigma situations. Take for example people’s reactions to someone shuffling along the street – who then gets attached to the label “the stereotypical ‘chronic psychiatric patient’”. Even though the crowd do not know the specific label, the patient is avoided and socially rejected.

It is worth examining in ourselves what degree of offense we all tolerate. It is not uncommon for me to attend lectures from Professors specialising in stigma who use words like ‘dementia sufferers’ referring to people who are actually living well with dementia.

David Steele raises some perceptive issues here in a previous article in the Guardian:

“Even children’s television seems to have gotten in on the act. One study in the British Journal of Psychiatry found that out of a sample of one week of children’s television, 59 out of 128 programmes contained one or more references to mental illness. Terms like “crazy”, “mad” and “losing your mind” were commonly used to denote losing control. Six characters were identified as being consistently portrayed as mentally ill. These characters were almost totally devoid of positive characteristics. I’m not sure if one of these was SpongeBob Squarepants. Why would a porifera even need trousers? Some sort of body dysmorphia ?

The sign “You don’t have to be crazy to work here but it helps” has become so common that it’s a cliché. People describing themselves as “a bit mad” usually mean that they’ve worn a sparkly hat at some point. Terms like mentalist, psycho, bonkers, insane and barking are thrown around like loose pennies in a conversational washing machine. Look at Terry, the mentalist. He’s bonkers. He’s so drunk he’s gone outside to punch the thunder for annoying the moon. Mad!”

Two years ago, Thorpe Park was accused of ‘stigmatising mental illness’ for naming a Halloween attraction “The Asylum”. Mental health advocates warned that having actors chasing people around ‘The Asylum’ pretending to be patients reinforces stigma around mental illness, and yet a Thorpe Park spokeswoman said that the attraction is not meant to be offensive nor ‘a realistic portrayal’ of mental ill health.

In 2012, the Alzheimer’s Disease International ran a campaign on tackling the perceived stigma of people with dementia, citing that a societal shift was needed to change opinions, such that people with dementia felt included.

They warned that,

“Stigma could be a major barrier to finding solutions for the problems related to Alzheimer’s disease and other dementias, including low rates of diagnosis and service utilisation. Therefore, it is essential to take action to dispel lingering myths about dementia to reduce stigma.”

But they recommended that,

“Give people with dementia a voice and let them speak about their experiences in public. They have proved to be powerful spokespeople for Alzheimer associations.”

I don’t think that people living with dementia should say nothing on the one hand, but on the other hand I don’t feel we need to fuel this with yet further publicity (like this blogpost).

But I feel people who perpetuate stigma over health, including dementia, are dangerous people.

And when will we know the ‘war against stigma’ is won (as dementia likes its battle analogies?)

A world without Katie Hopkins or Nigel Farage?

No idea.

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Why I love my own research into living better with dementia

 

It more than nauseates me when I see undisclosed conflicts of interest. It makes me violently pissed off.

I don’t like it when Big Charity does not disclose that a document promoting early diagnosis of dementia, without calling for better resources for workforce training or post-diagnostic support, was sponsored by a drug company.

Conflicts of interest are not necessarily materially significant, but it is for members of the general public to judge. The Declaration of Helsinki makes it patently clear that negative results should be published as well as positive results.

There’s a fundamental problem with the case for screening for Alzheimer’s disease. Even if there were an inexpensive reliable test which is sensitive to early deficits in cognition in people with early Alzheimer’s disease, and that test is not sensitive to other medical conditions such as pure unipolar depression, the case for screening cannot stand.

This is due to two reasons. The track record of Big Pharma in finding a cure for Alzheimer’s Disease in the last two decades at least has been abysmal, whether you’re talking about symptomatic treatment or slowing of progression for a meaningful number for a meaningful time period.

Secondly, and equally significantly I feel, is that we simply don’t have money going into what living better with dementia might look like – where for example are trials into looking at GPS tracking systems for people with dementia, or for music improving quality of life?

I am in fact in the 1%, but not in the traditional general election sense. I am the “other” that does medical research.

Project update slides for PPI Working Group

I am regulated on the medical register, but do not get paid in any form for the research. And yet I have presented on my own at Alzheimer’s Europe and I am about to present at the Alzheimer’s Disease International conference in Perth later this month.

But there’s point in rubbishing what I do.

I have published one book ‘Living well with dementia’ last year, starvation in the midst of plenty bookwise, meaning that there are few evidence-based books on wellbeing in a climate where there’s no shortage of funds for research apparently.

I am about to publish another. Even  though I get no support in doing so, I actively promote research into dementia.

That was a half-truth, in fact.

I once got a free T shirt, and I actively promote research into dementia.

JDR-2

There are people in this country whose energy I could never match – such as Chris Roberts, Tommy Dunne, Agnes Houston, Tommy Whitelaw.

There are people abroad who are utterly amazing. I won’t embarrass them by naming them.

And frankly I couldn’t give a damn about people with long titles and important positions who proclaim themselves as ‘experts’ into dementia, whose self-righteousness I can spot a mile off.

It is not hyperbolic to say that this self-congratulation is to some extent justified by me having a huge return on investment – that is, my return on investment is astronomical given that I do not receive any grants.

Many people with dementia, and people closest to them, care about my research, and I care about that.

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