Alzheimer's Society: Strategy is a landmark

The government's consultation into its first-ever dementia care strategy has been given a warm welcome from charities and campaigners.

Neil Hunt, chief executive of the Alzheimer's Society, explains why action is needed and what can be done to improve care.

"The strategy really is a landmark. This is a huge, huge set of commitments here. There may be refinements but we've got the basics for something that will transform the lives of thousands of people.

"It really will drag the issue out of the dark ages where it's been inexplicably, in our view, for far too long. One of the key challenges under the awareness banner that we have to face is that actually a diagnosis of dementia - still imprecise, still, I'm afraid, we don't have all the science to tell us exactly what these illnesses are, and there are a whole range of illnesses that create dementia - for far too many people is received almost as a death sentence.

"It's a tragic waste, a disastrous waste for people. I've spoken to people who've taken the news as 'life over'. And yet you meet people at [healthcare centres] where it is absolutely clear people can achieve an awful lot following a diagnosis.

"It is an absurdity that in this day and age people are going through so much distress, so much fear. Of course it's about the worst kind of news people can get but it's complicated by our failure to provide people with information, practical help and help that is really planned around the very, very complex nature of dementia.

"The tragic thing is actually getting this right for people is not that difficult. If we give people confidence that there are things to be done and help to make the changes that are inevitable to make then we actually start to humanise this.

"I'm delighted to hear [health minister] Ivan Lewis say it is crucial to put health and social care systems together again because people need both. In terms of quality we have far too many examples where people are just not looked after properly.

"The choice of a care home is so fraught with difficulties. We can provide information and we can help people think through what does this mean. Sadly, in our experience, too many people in the care system don't recognise dementia and don't really recognise what they can do to make things easier.

"We are absolutely delighted to see that there is going to be some progress in the research challenge. It's very strange to see how little investment as a nation we make into understanding this, and not just the essential brain biology questions which are of course are dying for breakthrough - we must have knowledge. We may be a decade or two away from cures, but if we could find ways of delaying the onset of the worst symptoms, say for five years, that would take so many people out of the care system and take so much pressure off.

"So there are real gains to be made from understanding biology better. But research is bigger than that; there is the whole communication challenge that we have and I think we owe it to people to understand how we can help them with best practice issues.

"We know many examples of people who make things better, we know there are good services, we know there are good arrangements in place in some localities. Our challenge is to make sure that the best of what there is is available to everybody and to make sure that we never again have to listen to sad tragic stories of people who carry on for years and years without knowing what's going on and without getting any help."