Language and dementia. Why are we making such poor progress?

Andy Tysoe tweeted this only this morning.

The sheer number of the ‘breakthroughs’ in dementia treatments has been breathtaking in the last few years, particularly since 2012. This of course is a highly manipulative agenda. The aim of this propaganda is to convince you that progress is being made in dementia research, and that you should continue to fund it. The truth is – the vast majority of the breakthroughs are useless.

Nevertheless, we are where we are. Social care funding has not been ringfenced in England since 2010. You are not going to get any stories about this on a frequent basis. English dementia policy needs an infrastructure for coherent integrated person-centred care, with a trained workforce, and care pathways. One large charity pumping out ‘Friends’ is not enough. The same charity has decided to campaign on #FixDementiaCare with cheap tacky photoshoots from MPs, having been ineffective on the issue in the last few years. One should legitimately be asking for stronger clinical leadership this being the case. The English dementia strategy expired five years after 2009 – it is now 2016.

Language sets the political agenda everywhere.

Even words such as ‘engagement’ and ‘involvement’ compound the impression of ‘does he take sugar?’ All too often people with dementia have been speaking in public on the subject of being engaged in events on dementia, rather than real issues in dementia policy – such as the need for funding in social care. Organisers of events invite people with dementia at the last minute, with this act of tokenism being highly insulting in effect. Working groups if the participation at worst is illusory might add a further layer of marketing, and often appear like a nice little earner, potentially, for the bureaucrats organising them. But the real effect is far more damaging – this friendliness has been profoundly disempowering, and highly obstructive. Often the purported ‘co-production’ and the ‘patient voice’ are not genuine at all – the relationship defined by Nesta in 2009 is defined by three simple words “equal and reciprocal”, often forgotten, and becomes a trite trivial piece of marketing, sadly, instead.

Compare this to a whole book on the subject written by Kate Swaffer, “What the hell has happened to my brain?”.

I have been dumbfounded and truly enormously saddened by those who claim to be gurus in engagement and involvement being so silent on Kate’s book. But this for me speaks volumes.


Kate, not only living with dementia, is about to embark on a Ph.D. Whilst medics go all Captain Cavemen mode about the number of diagnoses (of whatever quality) they’re making, Kate is demonstrating what should be happening. That people living with dementia should be given every single resource to help them live ‘beyond the diagnosis’ as Kate calls it, I feel strongly, is an essential imperative in both domestic and international policy in dementia. This change to a rights-based approach, viewing dementia as a disability, has totally changed the mood music.

Here’s the original paper we did with others on language and dementia some time ago; it was in fact my second ever poster at an international conference on dementia (though I have done considerably more now.)

Working groups must be a source of collective action not funding dependency

The Scottish Working Group for people with dementia and the European Working Group for people with dementia have been hugely successful, however you choose to measure success. They have witnessed remarkable individual advocates for dementia in people living with dementia, for example Agnes Houston from Scotland and Helga Rohra from Germany.

It is essential that policy in dementia is driven organically by people living with dementia and those closest with them, rather than people who are perceived somehow to have a sense of entitlement in a body corporate sense. That is not to say that the influence of the body corporate is a bad one: it is an important mechanism for financial sustainability and confidence for the future.

It would however be churlish to deny that bodies corporate can become focused on their brand. The brand identity is a major source of social and financial capital, known as brand value, and leverages the competitive advantage of the body corporate. Clearly bodies which have higher revenues are able to allocate resources into branding, often including sophisticated marketing and legal protection, in a way that smaller minions can’t manage.

With well known brands comes responsibility. The voluntary sector is extremely important in providing capacity for the service provision in dementia in England and Wales, but it is too easy for entities in the non-statutory sector to abuse a dominant position.

Working groups with sufficient momentum can have a beneficial impact on policy, and very often co-production is necessary to give policy legitimacy and authority. There is no doubt at all that dementia advisers and dementia support workers have a critical rôle to play in service provision, although we do need to build on the current published validations of these roles. There is very little commentary on the efficacy of these roles in the peer-reviewed academic literature, which must cause grave concern. On the other hand, the literature on the value of clinical nursing specialists is quite formidable. And yet corporate power and their ambassadors can sway the debate in a direction not in the best interests of persons with dementia.

But working groups if too large can deter against diversity. They are especially dangerous if their primary purpose, especially if argued through the prism of the business sense, is primarily to promote corporate brands, encouraging a sense of funding dependency. This can filter down to a dependency on an individual level where advocates in dementia ‘get gigs’ through their membership of an advocacy organisation.

An unintended consequence also is if national working groups containing ‘revolving door’ members of people who get themselves onto the same committees with relative ease, facilitated with funding bodies who are happy to feather their own nests, at the expense of other ‘entrants’. If the pool for these people is limited, then international initiatives can suffer. This, in my view, would be hugely damaging with important international policy streams, such as in dementia inclusive communities or the UN Convention on Rights for People with Disability.

I, overall, feel the ‘call to action’, while overused, is a good way for people not just to complain, but to ‘do something’ about the situation. Complaining and not offering an alternative can be a particular approach of people from a certain political inclination. And not all funding is bad: funding does not necessarily set up an evil axis of influence, and it is important for clear boundaries to be maintained even in strategic alliances to avoid inadvertent exploitation from either party.

I also do believe that the whole is greater than the sum of the individual parts. One of the weakest parts of the empowerment approach has been a lack of sustainability, at worst encouraging a culture of dependency. It would be a disaster, in my view, if this leaked into the formation of national working groups in dementia.