living with dementia

There are many burning issues in English dementia policy. One is mitigating against a high number of low quality and unreliable diagnoses of dementia due to poorly trained staff and inadequate resources in the system overall. Another is the poor coordination of care following diagnosis, due to the haphazard partial and inadequate roll out of anything appearing like integrated or whole person care.

The implementation of dementia friendly checkouts is yet another example of English policy having taken route which appears to have as its objective enhancing the brand profile of contributors from the voluntary sector, rather than genuinely enhancing the quality of life of people with dementia or carers. These are checkouts with huge banners with the word ‘dementia’, and literature from a particular source explaining about dementia.

How this situation has arisen is easy to explain relatively, however. In the name of ‘dementia awareness’, people have clearly abused the well meaning intention of ‘Dementia Friends’. Public education of dementia was desperately needed in the UK, is a global aspiration, and was indeed signposted in the 2009 English dementia policy document.

The 2009 English dementia policy document, the only five year strategy to date from the Department of Health, was published by the Department of Health. It was called ‘Living well with dementia’. There have been piecemeal policy documents annually, but it is recognised that the follow up to this five year strategy has not been published yet.

Unlike in cancer, there is no worked up care pathway. Cancer Research UK has made great strides in producing such a document for cancer. Cancer, like dementia, is an important long term condition where timely diagnosis, and encouraging people live to better is a priority. Cancer benefits from some effective medical and surgical treatments which not only have an effect on symptoms but on disease progression.

Justice delayed is justice denied. In cancer, it is well known that the provision of clinical specialist nurses have vastly improved the wellbeing of patients particularly in end of life care, such as from Marie Cure or Macmillan. There is no such provision of such nurses in dementia. Currently Admiral nurses, provided by Dementia UK, are finding it tough to get commissioned despite widespread demand. The lack of promotion of them in recent policy documents is not justified given the huge literature for them proving beneficial outcomes. They should be in the second English dementia strategy which has been delayed without any explanation. Justice delayed is justice denied.

The UK instead is focusing on ‘dementia friends’. How the number of Dementia Friends suddenly shot up from 700,000 to 1 million is a bit of a mystery, save for the fact that this increase in numbers happened to coincide with an online registration exercise. The danger of course was that people were using ‘Dementia Friends’ as a tickbox exercise merely.

Another indication that a tickbox mentality was being applied to ‘Dementia Friends’ was the large numbers of people, including commissioners notably, who kept on referring to the provision of information sessions as ‘training’. It is categorically stated in all official communications from the Alzheimer’s Society that it is not training. The policy reason for this is that nobody responsible wants to promote inadequate training for dementia care settings, where great strides have instead been made for example in the development of the ‘care certificate’.

The ‘Dementia Friendly’ checkout is striking in the context of the worldwide aims of dementia friendly communities. Supportive communities, howeverso defined, are meant to be inclusive and accessible to all. They are meant to be non stigmatising.

One of the aims of ‘Dementia Friends’ is indeed to see beyond the diagnosis. People are therefore not labelled by their diagnosis. It would be hard to conceive of a supermarket queue for ‘Learning difficulties’, ‘Depression’ or ‘First episode psychosis’.

When Mick Carmody or Kate Swaffer, both leading members of Dementia Alliance International (the only peer group of people living with dementia internationally and peak body), get told, “But you don’t look as if you’re living with dementia”, they have been known to respond, “That’s very interesting – but do tell me, what does a person living with dementia look like?”

It is actually very rare for someone with dementia to be living only with dementia. Co-morbidity is common. If you had dementia and depression, which queue would you join? The dementia friendly queue or the depression friendly queue?

When I was at the Alzheimer’s Disease International conference in Australia earlier this year, one of the speakers asked all people with dementia to stand up. Citizenship for people with human rights is a major drive for policy worldwide, and a principle aim of advocacy based on human rights is to protect people with dementia and carers against degrading treatment. This has been enshrined legally in some form or other since Roman times.

Asking people with dementia to stand up in a theatre is making a spectacle of people’s living in an undignified manner. Kate Swaffer, Co-Chair of Dementia Alliance International, even mentioned in her plenary speech how offensive it was.

It is highly unlikely that people living with dementia want to ‘out’ their diagnosis in a shopping queue, when many will be wanting to go about the life as normally as possible. Could you imagine the tannoy announcement, “Will all people with Alzheimer’s disease go to checkout number 9 please?”

As it happens, the vast majority of people living with dementia do not want to join that queue and hate the idea.

Dementia represents about 128 different conditions, depending on how you count them, ranging from Alzheimer’s disease at one end (very common) to anti-potassium antibodies paraneoplastic dementia (relatively rare). As dementia, a progressive condition affecting the brain, can in theory affect any of the thinking functions of the brain, in theory it is possible that any of the cognitive functions ranging from attention to higher order visual processing can be affected. So that is what could be in theory expected in a ‘dementia friendly checkout’.

It is hard to say why dementia friendly checkouts have been greeted with such enthusiasm. Certainly any reasonable leaders in the NHS should not associate themselves with such an unintelligent offensive policy. English dementia policy and their leaders should not be for the promotion of themselves at the expense of the wellbeing of people living with dementia or carers.