Wednesday, 28 March 2012

Dementia: Measuring Up

Dementia is in the news this week, with the Prime Minister’s challenge issued on Monday. It includes some sound principles and interesting ideas, but also has echoes of political headline-grabbing - the kind of initiative that may be old news by the time this blog appears two days later.

The old maxim “What gets measured gets done” must apply here. The difference between real change and empty rhetoric is whether, say five years hence, we will be able to look back and say yes, things really have got better. So what measures of success does the challenge include to demonstrate this?

Well, the Dept of Health paper mentions a lot of input measures: funding for research, care and other initiatives. But these just count money spent, not whether it does any good. Plenty of actions in there too, and some output measures such as the levels of diagnosis and the number of PCTs offering specialist memory clinics. But again, how much actual difference will this make to people's lives?

Only at Annex 2 do we find any real outcome measures, in the form of eight statements that express the aspirations of people with dementia. Fine as far as it goes; these are real outcomes that if achieved will mean real improvement.

But I see two problems: firstly these outcomes focus just on the person themselves. Very important of course, but surely 550,000 carers deserve a mention too – how will their quality of life (not just their ability to care) improve? It’s also disingenuous to imply that long-term cost savings aren't part of the agenda as well, through more research and better community support. What return on initial investment is expected here?

My second concern is that we may have a measure without a metric. If these aspiration statements are the outcomes, how well are they achieved now and how will we measure progress? The Alzheimer's Society conducted an excellent survey earlier this year, but their questions don't directly match the Prime Minister's challenge and it's not clear if/when the survey will be repeated. The National Dementia Alliance also describes seven outcomes in its 'Call to Action', but again these don't quite match the Prime Minister's challenge.

So frankly I’m not convinced. I’d like to think (as a carer) that things will change but unless we can establish and track some consistent outcome measures then I fear that history will repeat itself. In a few years time another strategy/initiative/challenge will come along to grab the headlines (or votes, depending on timing), and we’ll be in a very similar place again.

I really hope I'm proved wrong.

Check my web site at for more information and ideas.


  1. I really think that every care home should have some kind of 'citizen board' too. A group who can work with owners and staff to ensure and improve standards of dementia care in the home.
    At the moment it is difficult to 'get involved' beyond paying the bills...

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