From crisis to challenge: PM to spell out new dementia plan including research boost

This morning’s news bulletins are full of stories trailing the Prime Minister’s speech in London later today, when he is expected to launch a national challenge on dementia – from accelerating research funding and setting up a new academic science centre, to establishing a national screening programme and encouraging people to donate their brains to research.

Just over twenty years have passed since I climbed the steps to the offices of the Alzheimer’s Disease Society (now called the Alzheimer’s Society) then situated above a branch of the Abbey National Building Society on Balham High Street in South London, to begin work as their parliamentary officer. In those days I think the Society spent about £75,000 on research compared to the several million both it and Alzheimer’s Research UK spend today.  How far we have come?

Twenty or so of us were crammed into that office and I seem to remember working off the top of a filing cabinet for much of the next three months before we moved into central London.  Either that, or travelling round the Society’s local branches up and down the country; a network of the impassioned – spouses, sons, daughters and friends, brought together by their common experience of caring for a loved-one.  Yet it was also a community isolated by this shared experience, such was the stigma and lack of attention paid to dementia then.  And this sense of abandonment by society seemed cruelly accentuated by the very policy that was supposed to remedy it – community care; but that’s another story. It is still shocking to me that ‘then’ was 1992 and not 1892.

Over the last two decades, there has been much progress in terms of public awareness, the treatments available to people with dementia, and in terms of the quality of health and social care provided.  But the variables in determining whether, as a carer or as a person with dementia, you receive the right support and help are far too many.  The decisions by commissioners, providers and others that influence them, can feel far too abitrary.  The resulting isolation for loved-ones and their families, all too real.

For too long, dementia has suffered from a lack of attention and forward-planning at the very heart of Government which has been so pivotal to progress in other diseases such as cancer.  Today’s expected announcement by the Prime Minister, David Cameron, is therefore important not only because it comes from the top, but also because it begins to put in place key components of a strategy – from boosting research funding to improving diagnosis – which put dementia on a par with cancer, heart disease and other conditions as a national priority.  I am looking forward to seeing the full plan.

I hope also that the Prime Minister’s anticipated choice of words in describing what needs to happen  – ‘a national challenge’ – will begin to change the lexicon in common use when it comes to dementia; away from the numbing defeatism and ageism of ‘crisis,’ ‘timebomb’ and burden etc towards a more considered terminology which will inspire a shared commitment and endeavour.  We should never under-estimate the power and importance of language in these campaigns.

One final reflection.

It is pure coincidence that last week I had to pen the Foreword of a new book by a colleague.  In it, I mentioned how I witnessed people with dementia – aided by earlier diagnosis and new treatments – begin to have a voice and directly influence their care as well as local and national policy for the first time.  I have no doubt that their advocacy has been instrumental in getting us to this point.

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