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Why I feel angry, not grateful, after Cameron's dementia summit Why I feel angry, not grateful, after Cameron's dementia summit
(35 minutes later)
This week's G8 dementia summit has put the disease into the headlines. Health ministers from the world's leading nations committed to developing a cure by 2025. So why am I left feeling so underwhelmed?This week's G8 dementia summit has put the disease into the headlines. Health ministers from the world's leading nations committed to developing a cure by 2025. So why am I left feeling so underwhelmed?
The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.
Another thing I found troubling was the incoherence. On the one hand, we are told that it should be a major part of governments' dementia policy to reduce the fear and stigma surrounding the condition, to "normalise" it and integrate it into medical and social care, rather than hiving it off to some separate (and under-funded) part of the system or leaving it entirely to families to cope with and fund care packages.Another thing I found troubling was the incoherence. On the one hand, we are told that it should be a major part of governments' dementia policy to reduce the fear and stigma surrounding the condition, to "normalise" it and integrate it into medical and social care, rather than hiving it off to some separate (and under-funded) part of the system or leaving it entirely to families to cope with and fund care packages.
But on the other, we have this terrorising language combined with the assertion that dementia is not a normal part of ageing. I think one can make coherent sense of all this, if one tries, but at the level of speech-making aimed at public understanding, it is a mess.But on the other, we have this terrorising language combined with the assertion that dementia is not a normal part of ageing. I think one can make coherent sense of all this, if one tries, but at the level of speech-making aimed at public understanding, it is a mess.
Analogies are now being drawn with HIV and cancer. This operates on two levels. First, it stresses the scale of the problem and the differences in public perception. Second, it suggests that the strategies for tackling HIV and cancer will work for dementia. But when the governments of the rich world decided at the G8 summit in 2005 to "do something" about HIV, they could do so because there was, by then, already effective treatment for managing the disease; the problem was delivery and cost. There is no effective treatment for dementia.Analogies are now being drawn with HIV and cancer. This operates on two levels. First, it stresses the scale of the problem and the differences in public perception. Second, it suggests that the strategies for tackling HIV and cancer will work for dementia. But when the governments of the rich world decided at the G8 summit in 2005 to "do something" about HIV, they could do so because there was, by then, already effective treatment for managing the disease; the problem was delivery and cost. There is no effective treatment for dementia.
Our current leaders borrow the rhetoric of Richard Nixon's "war on cancer" or the currently fashionable language of "grand challenges"; setting arbitrary deadlines for "breakthroughs" in treatment. It's good to have goals. But the public is given no sense of whether they are achievable or make scientific sense. A cure by 2025? It would take that long to bring a new drug to market – if they had a good candidate, and they don't.Our current leaders borrow the rhetoric of Richard Nixon's "war on cancer" or the currently fashionable language of "grand challenges"; setting arbitrary deadlines for "breakthroughs" in treatment. It's good to have goals. But the public is given no sense of whether they are achievable or make scientific sense. A cure by 2025? It would take that long to bring a new drug to market – if they had a good candidate, and they don't.
Another big announcement was about early diagnosis, including the use of brain scans. Again, you are given no idea of whether early diagnosis is actually that useful, or whether brain scans are the best way to do it. It sounds good though. Until you remember that for most people in the UK, at least, a diagnosis is the beginning and the end of the care they get from society and the NHS. Most people get no support at all.Another big announcement was about early diagnosis, including the use of brain scans. Again, you are given no idea of whether early diagnosis is actually that useful, or whether brain scans are the best way to do it. It sounds good though. Until you remember that for most people in the UK, at least, a diagnosis is the beginning and the end of the care they get from society and the NHS. Most people get no support at all.
My stepmother was discharged from old age psychiatry at her second appointment because there was "nothing they could do"; she's had no support at all from local social services; and her GP can lend a sympathetic ear to us, but that's all. We're left to our own devices. And we struggle on as best we can. My stepmother was discharged from old age psychiatry at her second appointment because there was "nothing they could do"; she's had no support at all from local social services; and her GP can lend a sympathetic ear to us, but that's all. We're left to our own devices, and we struggle on as best we can.
Spending relatively small sums on big society-type initiatives is all well and good but it won't help the fragmented and incoherent health services deal with dementia better. Indeed, it may fragment efforts further.Spending relatively small sums on big society-type initiatives is all well and good but it won't help the fragmented and incoherent health services deal with dementia better. Indeed, it may fragment efforts further.
Then there's what they don't say. For all the talk of international co-operation and research, we hear little about the specific role of governments which in some cases is making things worse. Dementia is still seen as a personal problem, framed as one in which your personal fate is fixed by whether or not you are treated well by individual carers. It is seen as one where, if you took the right preventive measures and – maybe, one day – the right medicine, you would be OK. But this conveniently leaves out the way in which benefits, social care services and financial support to carers are being cut. Then there's what they don't say. For all the talk of international co-operation and research, we hear little about the specific role of governments which in some cases is making things worse. Dementia is still seen as a personal problem, framed as one in which your fate is fixed by whether or not you are treated well by individual carers. It is seen as one where, if you took the right preventive measures and – maybe, one day – the right medicine, you would be OK. But this conveniently leaves out the way in which benefits, social care services and financial support to carers are being cut.
It is nice to hear that governments want to take dementia seriously. But until they acknowledge how their policies are actually making the lives of families with dementia worse, all this is fine talk and not much else. The language of "war" in health and medical research is over-used. And if you declare war on dementia, while waging war on people with dementia, then do not be surprised if we are angry, not grateful. It is nice to hear that governments want to take dementia seriously. But until they acknowledge how their policies are actually making the lives of families with dementia worse, all this is fine talk and not much else. The language of "war" in health and medical research is over-used. And if you declare war on dementia, while waging war on people affected by dementia, then do not be surprised if we are angry, not grateful.
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