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Dementia and 'the numbers game'

In some ways, reporting on the dementia prevalence statistics – that is, how many people are thought to be living with one of the 130 or so dementias at this time – is like reporting on the official unemployment statistics. An eager audience can quickly observe whether the overall statistics appear to be going up or down, and why.

The usual shrill of ‘every unemployed person is a statistic that represents a personal tragedy’ has its parallel with the diagnosis of dementia. The diagnosis of dementia is a significant life event not only for the person considered after all the investigations and medical history to thought to have a dementia; but also a huge event for those closest to him or her.

Policy by spreadsheet inevitably is an inadequate affair. Public health doctors are continually reminded to treat the person, not the data point. Nonetheless, the recent review of the epidemiological evidence and implications for public health policy from Prof Carol Brayne and many colleagues elsewhere was, I feel, very helpful.

The overall position is this: dementia has numerous causes, and may not be totally preventable for the most part. People disagree on the whole on the contribution of non modifiable risk factors to your chance of being diagnosed with dementia.

Parking this aside, the possibility that low education and low social class might be contributory factors to dementia are potentially interesting. This inevitably produces the ‘what about?’ arguments – in this case, what about the famous and celebrated novelist Iris Murdoch who was very educated and still developed dementia?

That there are features in your environment which not only might be said to be preventative for dementia but also relevant to the quality of life for a person with dementia is important. The co-morbidity of certain medical conditions, such as high blood pressure or high cholesterol, is relevant; so is requesting a lifelong smoker to give up smoking.

Their overall conclusion is ‘the number of people with dementia in some western European countries is stabilising, despite population ageing.’ But I suspect that it will be rather difficult for this simple message to combat the ‘dementia time bomb’ moral panic headlines. Sensational dementia reporting, even if inaccurate or bordering on fraudulent, sells copy.

If the overall numbers of dementia are going down, that might mean it’s harder to raise funds for dementia. But I think this is wholly to do with how charities big and small wish to pitch their ‘retail offer’ to potential supporters – the charity might wish to put all their eggs in the cure basket, or might wish to be actively supporting those people aspiring to live better with dementia.

Focusing on the numbers game might mean hitting the target but missing the point. I suspect a massive danger of focusing on the ‘numbers game’ is that we’re far too uncritical in considering the ‘numbers of what?’  We know that mild cognitive impairment represents a condition, not all people living with it go on to develop dementia; but how we classify the two matters.

Also, I really don’t feel we have nearly enough clarity about the numbers of people living with young onset dementia, in other words dementia before the age of 65. There are far too many swathes of policy which can be overtly ageist in approach, and I don’t want epidemiology to be one of them. We need to know about the impact (and value) of people with younger onset dementia, around the world.

People living with young onset dementia often have employment and financial considerations, young families and other social networks which are thrown into disarray with the diagnosis of dementia. Presenting a message that the overall numbers of dementia appear to be ‘stabilising’ doesn’t do much for them; and may be actively misleading, particularly if it happens to be the case that, even accounting for total population, the numbers of people with young onset dementia appear to be increasing.

On the other hand, the ‘numbers game’ does provide us with a useful metric to think about the effect of public health interventions, but then again this is in the suite of another possible instruments, such as ICHOM or ‘the cognitive footprint’.

This is definitely what might call ‘work in progress’.

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