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.)

2 Responses

  1. Teepa Snow February 15, 2016 / 1:54 am

    Agreed – too little, too slow, too focused on fighting the condition rather than appreciating what is still possible, doable, and vital for all involved. This is surely one of the major civil rights issues of the 21 century. Recognizing the potential, retained abilities, and functional capacity at specific moments in time, with the “just right” support, opportunities, and environment can provide what is needed to continue to promoting living life fully with dementia on board. But it can’t just be about early stages, when people who are living with the condition can still actively and should actively speak for themselves. In my opinion, it needs to address what is still possible until the end life when living with this condition. The challenge is that the ability to speak, process, and communicate in commonly accepted forms is not frequently possible at that point. It most certainly doesn’t mean that someone in that state is not present and doesn’t have an opinion, it does however, create difficulties in interpretation, participation, and interactions with those who are uneducated ill-informed, or self-focused. Much as those with intellectual and developmental challenges were once excluded from decision making and self-determination, those living with dementia are still being lumped together and labelled by our society and legal system into grossly inadequate and unfair categories. Additionally those who would provide the support, opportunities, and environments DO NEED special awareness, knowledge, skills, and competence to provide what works well. It is more than just being friendly, although that is an essential component. The lack of governmental guidance and public mandates to recognize the need for and require the development of training for skilled providers, family supporters, living set-ups, care supporters, public services, medical, legal, and social services, and effective transportation options is astounding.
    I just received my copy of Kate’s book. I am reading thru it at the moment. Her ability to speak about her personal experience and relate it to common poor practices and myths is powerful and effective.
    It is going to take a committed world community to create the change being sought. In my limited way, I am trying to do my piece, by helping those who provide “care” and “services and programs”. The point is to get them to reconsider what they think they know about people living with dementia and how to help. The goal is for them to use new knowledge and skill that empower both parties, create connections that work, and provides opportunities and environments that make use of what is possible in that moment, knowing it can change in the next, but being more comfortable with the ability to be able continue to shift as life happens. The question is: Can we get the policy makers and leaders on board with this way of going forward, or will it continue to be about the cure, the loss, the expense, and the fight only?

  2. @davidondementia February 15, 2016 / 9:30 am

    Dementia Friends ought to be small piece of the jigsaw but gets landed with being expected to be the whole jigsaw. The failure to appreciate that improving social care funding for dementia support is far more urgent and potentially will have more impact on those living with dementia now and for the foreseeable future is one of the more breathtakingly stupid things happening with my tax money at the moment.

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