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Diablog Number 6: The societal treatment of people with dementia, the “bigger picture”, and research

Posted in DiaBlog with Larry

The societal treatment of people with dementia, the “bigger picture”, and research

Elizabeth Peel in conversation with Larry Gardiner

In the last of a series of six blog posts I talk with Larry Gardiner. Larry describes himself as a Change Agent, Co-producer, Citizen Advocate, Gentle Irritant. I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, and meaningful interaction; and, finally, the “bigger picture” and how people with dementia are represented and treated in society.

Liz: What do you think about the way that people with dementia are represented and treated in society?

Larry: Well, I’ll have a little rant about the popularist redtop press and some of the other newspapers that should know better, for demonising people who can’t do things for themselves anymore. Or can’t do as many things for themselves as they used to be able to do, and labelling all of us as scroungers, cheats, liars, philanderers. Because we’re not and people with dementia generally are not.

Most people with young onset dementia, they struggle valiantly for as long as they possibly can. In fact, I’d say that most people at any age do. To misrepresent what the problems of the country are and hang that burden around our necks when we’re already carrying a number of other things on our plates anyway, that’s unforgivable. There’s no integrity in it. It’s informed by an ideology rather than an understanding of the facts.

I think instructing the Department of Work and Pensions, to get 20 per cent of their caseload off benefits; there is no integrity in that. I think it’s a shame. So, part of my rant is that I think it is unforgivable. We are an exceedingly prosperous country, to do that to people whose brains are impaired because brains cells are being killed, and more brain cells are being killed is unforgivable.

We ought to aspire to more solidarity because a third of the population of this country over the age of 65 will be affected by dementia symptoms. Whether they are diagnosed or go undiagnosed, and there is solid evidence for that, absolutely rock solid. The World Health Organisation analysis shows that there’s an ageing demographic and we’re sitting on a tsunami wave of need that is going to hit the health and social care system, for which we are completely unprepared. Demonising the people who’ve got dodgy brains isn’t going to get us out of the fact that you’ve still got to do something with them, or let them die on the streets.

We have this sort of poverty of aspiration. The Government in its funding regime has introduced a market into health and social care. Not just this Government, the previous Government did and the one before that did, but progressively they’ve said we will have an arrangement of purchasers and providers. Introducing a market destroys something that is of real value and puts something in its place that doesn’t add value at all. It destroys generosity, altruism, erm, I think it destroys philanthropy, I think it destroys random acts of kindness, and it puts in its place, transactions. So I don’t think it’s helpful for our society. It exacerbates a trait that we have always had in the United Kingdom that was unfortunate anyway. We are a very short termist society. We have short-term politics as driven by a four or five-year cycle of elections. You get no consistency or coherence, and politicians and policy makers work to short term horizons, never plan for the long term.

Liz: And how do you see this impacting on people with dementia?

Larry: People who need institutional care in care homes and are admitted to a care home facility, are increasingly finding themselves in bigger ones. Because local authorities that fund the majority of social care delivered through care homes are cutting the amount of money per head, per capita that they will give to a care home provider, which is a business. So the business says, I need economies of scale. I’m not getting enough to support Mrs Blogs in my care home because the local authority only give me two thirds of what’s needed, I need to find some savings from somewhere, I will just make my care home bigger. Now they’re building care homes for 700 people, 1000 people at a time. They’re basically warehouses where individuals are relatively humanly stored until their toes turn up. They don’t get any stimulation; they don’t get any real close attention.

Liz: What do you think are the key areas for research in dementia? What are the pressing issues that need to be tackled through research?

Larry: On the medical side of things, we’re at the stage where things like breast cancer was 25-30 years ago. There are no cures and there are no medical therapies that work reliably. But, I hope that medical research will yield something. I don’t think that needs to be the focus or priority right now.

I think potentially a “big society” could have been a really good idea but it’s discredited because everybody knows that it’s actually about replacing people who get paid jobs with volunteers who get nothing, so it’s discredited and it, um, it could have been an idea that transformed the lives of millions. Because it was driven by an ideology to reduce the cost base and taxpayer burden, um it’s never going to work. I think dementia friends and dementia champions is really just another step along the same road.

I think the research needs to go into the things that will possibly improve quality of life, the things that will possibly increase meaningful activity for people with dementia. I think that research needs to go into the effects of caring for loved ones with dementia on family member carers, and how to create circles of support in communities.