Why have people living well with dementia become “the squeezed middle”?

There’s been a huge amount of discussion as to who the real victims of the great international economic crash, caused by investment bankers, are.

One term which has been used has been “the squeezed middle“.

Irrespective of who exactly constitutes “the middle”, there is some general disquiet that the word “squeezed” perhaps is not necessary the most appropriate adjective. “Squeezed”, as others have suggested, moots ‘a mild discomfort’ rather than something which should cause much concern.

Likewise, both domestic and international policy in the dementias, I feel, suffer from this “squeezed middle” phenomenon. Here, the people with dementia themselves, and friends and family, become squeezed.

Paid carers often have an unpleasant settlement, in having to deliver care in fifteen minute slots, little job security sold in the name of ‘flexibility’ through zero hour contracts, no reimbursed expenses for travelling time, and sometimes breach of the national minimum wage.

Since the launch of G7dementia and the Prime Minister Dementia Challenge, arguably a form of ‘glocal’ marketing, there has been much interest as to who has been calling the shots.

We cannot go on like this.

When people speak of ‘not losing the momentum’ from the Prime Minister’s Dementia Challenge, there is often completely inadequate analysis to accompany.

We do not know as yet how much ‘communication’ has turned into ‘action’ with Dementia Friends, though achieving 900 000 “Dementia Friends” has arguably been an achievement. As a “Dementia Friend Champion”, I feel honoured to have been part of this social movement.

But policy runs the risk of overplaying its hand in discussion of prevention and risk factors. It’s thought that non-modifiable risk factors comprise quite a significant proportion of people with dementia.

At the other end of policy, we have the unseemly spectacle of ‘thought leaders’, some of which with unclear conflicts of interest, suggesting reduction of antipsychotic prescriptions in dementia, when they were the very ‘experts’ who were promoting the antipsychotics in the first place.

The idea that people with dementia, once they have received a robust diagnosis, can live well jars with a reality where people with dementia are left languishing without any involvement from health or care services in England.

When I first mooted the idea of ‘living well with dementia’, it was accompanied by quite significant apathy from clinical professionals.

The full details of my first book, “Living well with dementia: the importance of the person and the environment”, are here.

I have mostly seen discussion of ‘living well with dementia’ reduced to sloganeering and trite soundbites, when a change in culture was necessary.

This nearly excited coincided with ‘change agents’, ‘boat rocking’ and so on, accompanied by a “feel the lurrrrve” style of social media campaigning, which excluded the very people who needed to be involved.

A glowing example of failure of inclusion has been the tardiness with which a person living with dementia was opted onto the World Dementia Council; and even there, in the end, the person was not elected, and parachuted in through what appears to have been decision-by-CEO-emails.

So, in between the drive to prevention and risk factors, which no doubt includes health clubs in the private sector, looking forward in a view of five years or so, and a drive to keep drugs in the spotlight in later stages, there are the “squeezed middle”.

In reviewing the effects of the Prime Minister’s Dementia Challenge, it would be great also to look at parts of policy which really have not worked well, like the slashing of legal aid and problems in equity for advocacy.

The talk of improving the wellbeing of caregivers continues, but talk is cheap. You have to put your money where your mouth is.

Why is it claimed that 9 out of 10 care homes fail patients living with dementia, even after the Prime Minister’s Dementia Challenge?

I’d be the first to be delighted if there were a cure discovered for any of the hundred or so dementias. But we need a bit of the sunshine disinfectant Jeremy Hunt is so keen to share.

It has recently been reported that:

“Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, it said.”

The whole world waits with baited breath as to what the forthcoming ADI and WHO meetings in Geneva will present.

But I suggest you don’t get your hopes up with the convincing rhetoric.

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