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Shining a light on dementia will give you an altogether different prismatic view of it

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Reading Catherine J Kudlick’s account of her own disability, a visual condition called nystagmus reminded me of how my own late father has been passed up for an opportunity on account of him being “colour-blind”.

Visual disabilities are interesting, but these disabilities occupy an unique position at the cusp between physical and mental health; in fact any physical pathology in the visual pathway from retina to cerebral cortex in the brain can lead to an alteration in visual perception.

Visual disabilities are therefore interesting as they represent the entire spectrum from the medical model to the social model of disability. Cataracts, or opacities of the lens in the eyes, are entirely peripheral. Monet’s change in colour styles can be attributed arguably to his development of cataracts. Cataracts can be ‘fixed’ medically as a day case surgery with laser treatment.

Compare this on the other hand to a dementia which affects the higher order visual processing in the brain. This could happen, for example, in any dementia such as Alzheimer’s disease, and gets called ‘posterior cortical atrophy’. And yet people who experience of this often spend years getting a diagnosis, on the account of being dragged from pillar to post through unproductive ‘eye checks’.

One then wonders if living with a long term condition qualifies you to be in a permanent state of being a ‘patient’. I live with double vision all the time, a sequela of the meningitis I experienced ten years ago almost to the month.

The literal meaning of the word ‘patient’ is “sufferer”. I no longer ‘suffer’ from having two superimposed images in my mind’s eye all the time, as my mind has come to adapt to them. In that sense, I am a ‘patient no more’.

Another literal meaning of the word ‘patient’ is someone who ‘experiences’ a phenomenon. This experience could have negative or positive qualae.

Someone’s experience of dementia might be as a direct result of being frustrated at continually forgetting, often in public, embarrassment-causing situations. Or it could be as a result of the socio-economic environments, due to inadequacies in the health and social care system or personal austerity inflicted by welfare benefits cuts.

I feel increasingly that your experience of a long term condition matches how vulnerable you feel to the external environment. If you’re not vulnerable, you are in a state of being resilient against shocks. In this sense, dementia or delirium parallels physical frailty, in that you can either experience or suffer as a ‘patient’.

But that is not the whole story.

The significance of being a ‘patient’ alters the perception of other people about your identity. You can of course deliberately wish to picture yourself in a state of disempowerment, deserving of sympathy. And that is your choice.

You could suddenly wake up one morning, and think that you’re deserving of campaigning or aid like ‘Band Aid’ was meant to ‘cure’ poverty.

It is possible that one individual could decide that she wants people to be friendly not to her but to her dementia, being ‘dementia friendly’. It could be that a completely different person might find the label of ‘friendly’ awkward, patronising and inappropriate at best.

Proponents of ‘dementia friendliness’ tend, in my experience, to argue that the reality is that one is coming from a very low baseline. That is, the vast majority of people in the general public either do not know or care what dementia is, and therefore are unable to see even at a basic level what sort of environment might be enabling or inclusive to such people.

They also tend to argue that the forced nature of ‘dementia friendliness’ is exactly the sort of shock-tactic that it builds up the necessary momentum to build up culture change.

But I disagree.

I feel it is important not to confuse highly effective marketing or branding with a genuine sea-change in attitudes and swings away from prejudice. Why is it that it is still commonplace to find quite a positive article written about dementia but still littered with the phrase ‘dementia sufferer’?

Tonight, Prof Tom Shakespeare will consider dementia as a rights issue.

Shakespeare, a legendary lecturer who indeed lectured me in Cambridge back in 1994, begins his BBC Radio 4 Point of View programme this evening (8.50 pm Friday 31 March 2017), by saying,

“But if dementia is a disability, why do we not think of dementia as a disability rights issue?  In the last few decades, we have seen wheelchair users, and blind people and Deaf people and people with learning difficulties and all sorts of other impairment groups unite and demand a better deal from a government, and more acceptance from society.  Disability is seen, not just as a health condition, but as a matter of equal opportunities and inclusion.  But when it comes to dementia, we are still thinking in terms of disease and tragedy and passivity.”

Shakespeare then takes the discussion onto a terrain which I wish I had confronted more adequately years ago. That is, whether the term ‘dementia friendly’ itself needs to be challenged on the grounds of being utterly inappropriate.

Shakespeare continues,

“We would need to reform our language, too.  Even a phrase like ‘dementia friendly’, while apparently positive, could be considered patronizing and inappropriate.  The implication is that the solution to the problem is for people without dementia to be kind and considerate and welcoming of people with dementia.  But if part of the problem is socially-imposed barriers, devaluing and even human rights violations, then the term ‘friendly’ might be judged an inappropriate response which we would not use for other minorities.    Why don’t we talk about rights?  We don’t want ‘dementia friendly’ communities, we want ‘dementia enabling communities’; we don’t just need ‘dementia friends’, we need ‘dementia allies’.”

One of the most salient ratios of recent cases handed down by the more senior law courts in England and Wales has been to reaffirm that is impossible to discriminate between people on the basis of capacity when it comes to deprivation of liberty, and this has a resounding basis in the European Convention of Human Rights and the United Nations Convention on Rights of People with Disability.

This is not a question of having a ‘right’ which enables you to sue somebody, but an appreciation that the existence of dementia rights should be embodied to protect and enable people with dementia – the raison d’être of social care.

A diagnosis of dementia, I feel, should not be the beginning of a lingering ‘social death’.

Shakespeare concludes this evening,

“People with dementia may be different from us, in many ways, but they are still human beings…. People with dementia may be different from us, in many ways, but they are still human beings.”

Amen to that!

 

“Dementia Rights” is presented by Prof Tom Shakespeare on BBC Radio 4 this evening (Fri 31 March 2017) at 8.50 pm (see here).

 

 

@dr_shibley

 

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