27/02/2015 13:17 GMT | Updated 27/04/2015 06:59 BST

A Vision for the Next Five Years of English Dementia Policy

Given that government documents claiming to be guidance, strategy or policy generally attract harsh scrutiny, publishing a 'Vision' document is always going to hit controversial territory, especially with a general election and spending review looming.

Despite this, the UK government recently released their 'Dementia Vision' document entitled 'The Prime Minister's Challenge on Dementia 2020'. Dementia has been a focal point for the current administration in a way that it has never been for previous governments. Granted, the first English Dementia Strategy was produced by the last Labour government in 2009, but the drive behind much of what has happened since has come from the Coalition, and particularly the current Prime Minister who put his name to the first ever 'Prime Minister's Challenge on Dementia' in 2012.

The 'Vision 2020' document isn't, as far as I'm aware, intended to be a new strategy or indeed become policy. It is a document designed to keep dementia on the agenda across all the major political parties, bridging the gap between the end of the 2009 Strategy and the 2012 PM Challenge and the start of something new under the next administration.


You may wonder, though, why this is so important? The statistics estimate that, in England alone, 676,000 people are currently living with dementia and around 540,000 people are caring for a loved one with dementia. As the population ages, and given that much more research and education is needed around prevention, these figures are predicted to rise considerably. With few treatments and no cure, dementia remains a terminal prognosis for anyone who develops it.

I've always felt that previous strands of dementia policy have neglected the point about supporting the person, their carer(s) and family after diagnosis, preferring to focus solely on increasing the numbers of people being diagnosed. The latter, of course, is a laudable aim - my own father went ten years without a diagnosis - but diagnosis must go hand-in-hand with appropriate, ongoing support for everyone affected by that diagnosis otherwise you simply plunge people into a black hole.

With that in mind, I was keen to be part of the Department of Health's Post-Diagnosis Support Working Group, and I'm pleased to see the 'Vision 2020' document giving more weight to on-going post-diagnostic support. I'm also pleased to see that the involvement of people with dementia and their carer(s) and families is advocated throughout the document. In the past there has been far too much emphasis on telling people with dementia what to do and doing things for them, rather than acknowledging their abilities and the huge contribution they can make, not just to their own care but, if they want to, to strategy and policy.

Inevitably though, there are downsides to 'Vision 2020'. A quick search of the document reveals that variations of the word 'Health' get 109 mentions, while 'Social Care' gets only 34. I'm not suggesting that the NHS doesn't have a role to play, clearly it does, but people who are living with dementia and their carer(s) and family generally find the majority of the on-going practical help and support they need is from social care and third sector organisations - that was certainly the case for us as a family.

The major exception to that rule is the role of Admiral Nurses, who are specialist Dementia nurses providing invaluable support to families. Sadly Admiral Nurses only get one mention and the charity who provide them, Dementia UK, aren't mentioned at all. Likewise Age UK, who provide Dementia Advisors in some areas of the UK, are airbrushed out.

For any future strategy, I would implore that there is clear recognition of the contribution of the many different partners who make up the dementia support network, including exploration of some of the brilliant work being done by specialist Community Interest Companies and organisations who support people who are particularly marginalised - for example younger people who are living with dementia and people from ethnic minorities.

Uniting everyone behind any new strategy that may emerge after the next election is going to be key. No one organisation can claim to represent the views of everyone, nor have the capability to fulfil every need in the vast landscape of prevention, care, support and research. Inclusivity is vital if the finest examples of best practice in all of these areas is to be identified and replicated.

Of course no government document will ever please everyone, but after the intensive focus on dementia in recent years there was a fear that it could drop off the political radar and that the already scant resources would dry up even more. At least this 'Vision' document suggests that the focus on dementia might be here to stay.