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The World Dementia Council will be much stronger from democratic representation from leaders living with dementia

Shibley Rahman 3 Comments

There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself.  You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.

“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.

Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.

I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.

Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.

I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.

I am not accusing the World Dementia Council of abusing their power. Far from it, they have hardly begun to meet yet. And I have high hopes they will help to nurture an innovation culture, which has already started in Europe through various funded initiatives such as the EU Ambient Assisted Living Joint Programmes (“ALLADIN”).

I had the pleasure of working with Prof Roger Orpwood in developing my chapters on innovation in my book “Living well with dementia”. Roger is in fact one of the easiest people I’ve ever worked with. Roger has had a long and distinguished career in medical engineering at the University of Bath, and even appeared before the Baroness Sally Greengross in a House of Lords Select Committee on the subject in 2004. Baroness Greengross is leading the All Party Parliamentary Group on dementia, and is involved with the development of the English dementia strategy to commence next year hopefully.

Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.

My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.

Kate Swaffer is a friend of mine and colleague. Kate, also an individual living with dementia, is in fact one of the “keynote speakers” at the Alzheimer’s Disease International conference next year in Perth. I am actually on the ‘international advisory board’ for that conference, and I am hoping to trawl through research submissions from next month for the conference.

I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.

I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.

I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.

I am a person, not a diagnosis: deconstructing Kate Swaffer’s poem on dementia

Shibley Rahman 2 Comments

I have always understood “living with dementia” to mean that that person carries on with life, knowing that there is an underlying medical phenomenon somewhere. To me, it’s exactly the same as living in recovery from alcohol dependence. If I were to have another alcoholic drink, I wouldn’t be able to stop drinking. It’s a pathological reaction. I view it in the same way that some people have an allergy to peanuts. I don’t actively think about not drinking all day – it’s just something that’s part of my life.

It did genuinely come as a surprise to me, however, that some individuals view ‘living with dementia’, as living with somebody close to them with a dementia. I respect this viewpoint, and it is clear that no offence is intended there as well.

Kirsty

I don’t know what a person living with dementia (in my sense of the phrase) “feels like”, in the same way philosophically I cannot know what he or she perceives as the colour red. But an attempt to understand what one of the dementias might be like for that person I believe is pivotal for care, consistent with Tom Kitwood’s seminal work on personhood. In this framework, your prime concern is the person (rather than patient) with one of many types of dementia. A person will be a ‘product’ of experiences unique to him or her, and his or her own physical health, and not just a sum of his or her chemical receptors in the brain.

For medical professionals, a diagnosis can operate at a number of levels. One is individual, pertaining to someone’s identity or concept of being ‘sick’. One can be institutional (in relation of that individual to clinicians, politicians or social movements). We have seen this year how some politicians have been clamouring for a slice of the dementia diagnosis action. One can be societal, which depends entirely on how diagnosis frames that particular entity. For example, society might view that a delayed diagnosis for a dementia, where there is no obvious reason for this delay, is simply unacceptable.

There are in theory four possible options. With a diagnosis, a person may find himself or herself with a ‘disease’ or ‘illness’that potentially could be cured or treated, ‘healthy’ or no illness (but subject to future monitoring), ‘at risk’ of developing a future disease, or an illness with no disease (something wrong but not fitting conventional protocols of medicine.)

But as Blaxter warned back in 1978, “The activity known as ‘diagnosis’s is central to the practice of medicine but is studied less than its importance warrants.”

A diagnosis is by no means a trivial issue. It has become powerful because of the close proximity in academic and practitioner circles between legal, insurance and medical jurisdictions.

A diagnosis can have important consequences. Those consequences might be “administrative”, allowing somebody to access resources in health care; it can “legitimise” sickness (or the rather perjorative notion of “deviance”); or can encourage research into the existing evidence base.

A person as a result of a diagnosis may adopt “a sick role”, after Talcott Parsons’ seminal work in 1951. This construct of ‘sanctioned deviance’ is not without its critics,  who argue that this encourages a culture of blaming ‘the sick’.

For the purposes of the medical profession, a diagnosis can be seen as a diagnosis of a cure or treatment. Indeed, for many, the identification of a cure or treatment would contribute to diminishing the stigma associated with, or discrimination to the detriment of, a person with a diagnosis. These days, particularly for dementia perhaps, given arguably the lack of a robust cure or disease-modifying treatments for the most common form of dementia known as Alzheimer’s disease, having a diagnosis might be seen as enabling rather than labelling (after Marian Naidoo.)

Kate Swaffer, who has herself written candidly about her personal experiences of dementia, concludes her recent poem, “If they are not diagnosed with dementia…They cannot be living with it.”

In explanation, Kate Swaffer further writes:

“Some people have agreed vehemently with my opinion about the use (or mis-use) of the term ‘Living with dementia’ and others have disagreed just as strongly, while others have sought to question further, to look at themselves differently, or to question me. I too have sought to look at this topic through others’ eyes, to see it differently and from as many sides of the same coin as humanly possible.”

There is indeed more to this than immediately meets the eye. Take autism, for example.

Contrary to popular assumption, people diagnosed with so-called “mild forms of autism” often don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a recent study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according that study.

There’s been a growing realisation that diagnostic criteria are not “gospel“, and a number of medical phenomena have seen a number of patient groups query this; these include myalgic encephalitis, B12 deficiency and Lyme Disease.

In the case of autism, such difficulties might be mitigated against by merging of pervasive developmental disorder into the autism spectrum. And a similar phenomenon is taking place for the reclassification of the dementias as “neurocognitive disorders” (of major and minor types.)

It can’t easily be denied though that some individuals find a diagnosis helpful in that such a diagnosis might help to make sense of the past, present, and future (see for example “midlifeguy”‘s experience here).

Kelly Boylin writes that:

“”Time to change Wales” are doing amazing things and I am proud to say that I wear their end stigma badge everyday and am frequently asked about it. I am so passionate about stamping out stigma and discrimination against mental health that some days it’s literally all I can think about. I guess that’s why I set up my campaign Kim’s Voice, in memory of my late sister who committed suicide in 2009.”

Persons who have been given medical diagnoses have tended to find support from others who share similar experiences and there are instances of specific-issue health movements shaping medical practice and government policy. And it’s inevitably going to be the case that some diagnoses are contested, challenged and/or politicised. Indeed, diagnostic categories can, and often are, resisted or disputed.

Whether you happen to agree with Kate Swaffer, ironically, is personal to you, but it’s hard to deny that that poem throws up some important questions about identity and the way others perceive you.