Deeper and deeper

The English language doesn’t have a single word for ‘not being ignored but being putting at the heart of the discussion’. A useful word as any is involvement, and a dictionary defines involvement as: to engage, to connect, to participate and to influence. But there is a sense this is even an injustice to how people living beyond a diagnosis (Kate Swaffer’s term) feature: I ‘involve’ my postman when I receive post from him in the morning.

There’s only been one English dementia five-year strategy document thus far. The National Dementia Strategy (2009) entitled ‘Living well with dementia’ states that the person with dementia (and their carer) should be placed centre stage in terms of saying what was important in their lives and what a good life with dementia looks like. This feeling of ‘no decision about us without us’ has been pervaded all the (almost annual) national policies subsequently, and still it’s commonplace for people living with dementia to become a bolt-on at the end in conferences long after the original programme was designed. Wendy has described this recently.

I continue to have grave reservations about the label ‘dementia’, but understand how it exists to make the discussion manageable. I don’t think it’s possible really convincingly to live today without dementia, and with dementia tomorrow, only because you slip one point in a test which means you now fulfil medical criteria for dementia. Talk to anyone who has been richoted through the medical labels of ‘minimal cognitive impairment’ and ‘dementia’ how distressing this can be. Ken C offers one such perspective. There’s even a paper due for press in the US in the journal ‘Neurology’ explaining the heterogeneity in cognition may go far beyond ‘normal’, ‘minimal cognitive impairment’ and ‘dementia’. It’s here.

The Dementia Engagement and Empowerment Programme (DEEP) is a growing user movement across the UK. It connects involvement/influencing groups of people with dementia – groups where people with dementia are working together to raise awareness about dementia. An aim is to influence policy-makers and decision-makers, to influence local dementia practice and strategy, and to challenge the existing narrative about what it is like to live with dementia.

Big is not necessarily best of course. One ‘plus point’ of DEEP might be its sheer size, but this potentially produces two problems. Firstly, there’s a problem that the bigger the group the higher the chance of conflict within the group (but not necessarily so). Secondly, there might be a perception that being a member of ‘DEEP’ might be THE game changer; for example, some ‘activists’ would have been equally successful in the work in the absence of DEEP. But the “organise to action” aspect of DEEP is thoroughly commendable:

“You can start to think that you are the only ones doing it – DEEP helps you to see you are not alone.”
Member of a DEEP group

The report “Developing a national user movement with dementia – learning from the dementia engagement and empowerment group (DEEP)” was published earlier this year.

There’s an interview involving Tony Benn where he moots that the word ‘activist’ is used in the English as a term of abuse; for example a vicar is a ‘religious activist’, an author is a ‘literary activist’.

As for any group of people, there’s the danger of course that those who shout loudest call all the shots, get all the gigs, and so forth, and may not be ‘representative’. I myself have previously found myself tying myself in knots in thinking about how diverse the diversity is; for example, in a book recently, an author apologised for not having a narrative from a person who is L B G or T. But surely it would be a sad state if any group had to be completely representative? It is in any case numerically impossible for there to be robust representation of all 47 million people living with dementia.

The JRF report comments:

“There is a need for mechanisms that support people with dementia to carry on contributing as their needs change, and to ensure that a range of people with dementia, including those with more advanced dementia, can have their voices heard.”

it happens that many ‘activists’ living with dementia started their work in campaigning as people with young onset dementia (below the age of 65). And this is of course a phenomenon which DEEP has to grapple with: whether it is in fact articulating a new model army of ‘super people’ with dementia; in other words, are the people living in residential homes with very low MMSE scores conveniently airbrushed from the canvas?

The answer is of course for DEEP to seek out actively people living with dementia from other places. The label is convenient in terms of thinking about commissioning, but the irony is that many people with dementia and carers do not wish to view themselves through a ‘dementia only’ prism. To do so, in any case, would be to defy somewhat the odds (as comorbidity in dementia is very common). There’s a growing energy in the feeling that all services should be fit for all – inclusive for all, accessible to all, irrespective of age, irrespective of label.

So how does DEEP become a ‘sustainable’ outfit?

Here, “sustainability” could be defined as a same network of groups looking at different problems all the time, perhaps with one issue building on the next, or a constantly evolving group of people looking even at the same problems?

There is a very helpful paragraph in the DEEP report:

“Looking to the future: the business case for involvement groups needs to be developed. There is a mass of anecdotal evidence from within the DEEP network that staying connected, and having a role and a sense of purpose has long-term health and wellbeing outcomes for people with dementia. The British Psychological Society has listed involvement groups for people with dementia as an evidence based psychosocial intervention ( Involvement groups are not costly and yet, for many, their status and long-term preservation is insecure.”

But nobody should realistically be asked to predict the future. This is equally so for DEEP as it is for academic research, where researchers often have no idea where the field will be in two years time even. A worthy question, however, is what makes DEEP particularly significant at this moment in time? The answer could lie in something as simple as the fact that a lot of attention has been given to dementia following the Prime Minister Dementia Challenge; and that the moral integrity of anything to do with dementia does mean having people with dementia at the heart of the agenda. This is of fundamental importance, say, if you’re trying to encourage people to enrol into basic research which ultimately might furnish the world with a cure for 2025? Besides, one is left a bit unclear whether the activism is for today, with social care funding being on its knees in England, or for some time in the future? People with dementia often report living very much in the present, and not putting off for tomorrow what can be done today. The danger with involvement is that it becomes a cinderella ‘tea and crumpets’ exercise rather than an immediate reaction to gross injustices in research and service provision, with the activists not wishing to offend anyone merely out of political etiquette.

And the inner workings of DEEP have been much rehearsed by other groups.

Take for example this paragraph,

“Organisations are beginning to access the DEEP network to find out the views of people with dementia. There is a danger that they ‘use’ the network to further their own goals, without reflecting on adapting their own processes, or thinking about engagement beyond consultation. DEEP guidance notes make recommendations about ways of engaging with groups of people with dementia. However, DEEP does not provide a monitoring role on local engagement, even though it works hard to ensure national influencing opportunities are well planned and executed.”


So what happens if a person with dementia wants to launch a worldwide campaign ‘Dementia Aid’ thus promoting the victimhood of people also beyond a diagnosis of dementia are actively campaigning against? That’s democracy – but not if the person is unilaterally doing on it ‘on behalf of others’ with no real mandate.

So is DEEP merely bailing out what should have been common-practice elsewhere in the NHS and other statutory services? Well if it is – and many people have evidently drawn therapeutic benefit of sharing their stories with others listening, irrespective of your own operational definition of outcome – it’s sure better than a single leaflet from a well known charity near you?


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