Entangled in data…turn the telescope around

I’m trying to untangle some data about dementia.

Alzheimer’s Society claim on their website that ‘1 in 3 people born today will be diagnosed with dementia in their lifetime’.

And ‘1.6 million people in the UK are expected to be living with dementia in 2040’.

What will the UK population be in 2040? Around 70 million apparently. So that is 2% living with dementia.

Currently there are reckoned to be 900,000 people living with dementia in the UK, of whom about 60% have been diagnosed, (ie 540,000). So that gives an incidence rate currently in the UK population of 66 million, or 1.3%, with or without diagnosis.

Not a third. Not 33.3%.

Most people are diagnosed with dementia after age 65. Data shows that in 2018 3.3% of people with dementia were under 65. That means around 80,000 people developed the symptoms of dementia before 65.

The number of births in the UK in 2022 was a little over 600,000 in 2022.

Now, those 600,000 babies born this year will be 65 in 2089. And 75 in 2099. They may have life expectancy of around 75, though who knows what health and the environment will be like then? The human race might be living on the moon.

The implication of the Alzheimers Society statement about 1 in 3 being diagnosed sometime makes the reader think, oh my God! A third of the population will be living with dementia!

Nope. NO, No, No.

At any one moment, most of the population will be well below the age when dementia symptoms might emerge. Yes the incidence rate will be higher if we have a larger older population, as brains deteriorate as they age. But it means that perhaps one in three people aged say 80 might have dementia. And at least half the population will be dead by age 80.

Another statistical curiosity is about the number of people diagnosed with dementia who have Alzheimer’s disease.

The generally quoted number is in the 60% of diagnoses area.

But I found out recently (and fairly reliably) that currently only 30% of people being diagnosed with dementia are told they have Alzheimer’s disease.

Odd. Is something amiss with the figures? Have guidelines about diagnosis changed? Or is it a data blip? If you know any reasons please do let me know.

One conclusion I can come to is that other types of dementia result in much quicker death, ie shorter time to death, so we end up with a higher proportion of people in the population living with Alzheimers than with vascular dementia, Lewy Body, FTD, PCA, etc.

This tells me that Alzheimers disease is more likely to be caused by environmental and lifestyle factors than by organic disease. It also tells me that you can slow down Alzheimers disease development or symptoms by keeping healthy, active and socially engaged. (That might be a bit of a long stretch objectively!)

In 2018 12% of death certificates included dementia as one of the causes of death. But even that statistic may not be reliable. Most people die over 70 with multiple morbidities, ie several diseases. Dementia might be one of them, but not necessarily the direct cause of death. It may be included on the death certificate because a doctor is aware that the person had dementia, especially if there is no one single obvious event, like a heart attack.

I’d prefer to say that 12% of deaths have dementia included as part of the concoction that causes their death.

Let’s not adopt a scare tactic. If you are born today (and clever you can read this already) your chances of developing dementia are not one in three. You will far more likely die of something else before you get dementia symptoms.

The point, I think, about awareness of dementia risks is to alert people to live in ways that reduce those risks.

We should not live scared that life will be shit and short because we are almost bound to develop dementia, and that we will be that image of late stage dementia you so often see in media, and that rightly you fear becoming.

We are more likely NOT to develop dementia during our lives.

But that message does not play out well in awareness (and fund) raising.

What you may not know is that data shows that dementia is more prevalent in areas of high deprivation than in well off areas.

Risks of developing dementia are reckoned to be affected by diet, education, smoking, alcohol, pollution, obesity, diabetes, lack of exercise, and long term stress. These are all more prevalent in areas of high deprivation than in better off areas.

A new report by The Kings Fund finds significantly higher levels of lill health in the most deprived areas of the UK. They looked at data about recorded and self reported illness in 20 categories, including dementia, COPD, diabetes, heart disease, chronic pain, stress.

https://www.health.org.uk/sites/default/files/upload/publications/2024/Health inequalities in 2040.pdf

Their conclusion (though do please read the executive summary of the report) is basically that if we, the country, do not address and reduce the inequalities in society, we will have appallingly increased levels of ill health by 2040 which we as a country will not be able to manage.

And the corollary of that is that our economy will suffer too, because there will be increasing numbers of working age people unable to work, and increasing demand for health care.

(Ring a bell? It’s happening now!)

So…instead of looking to spend many billions on somewhat dubious drugs which have limited positive effect AFTER dementia has developed, government and individuals should be addressing the causes of this ill health mushroom cloud. Poverty. Inequality.

And, to misquote, what’s good for the brain is good for the heart!

We are completely missing the point, and it’s staring us in the face if we look, that our growing ill health is largely due to the state of our society. And taking a laissez fair approach, rewarding the well off, ignoring those most in need, will get us nowhere other than in decline.

Dementia is of course awful. But so are a heart attack, a stroke, diabetes, chronic pain.

We fear dementia because we have no cure.

So turn the telescope around…look at and do something about the causes of ill health and inequality, and prevent a lot of this burden of disease.

We do not need to spend fortunes on cures and care when we know that poor, inequitable public health is the cause.

It may be inconvenient. It may be politically unrewarding. But if you start being public and honest about our disintegrating society and health, people might just get the message that addressing inequality and pollution and smoking and diet is what matters.

We need to take responsibility if we can. But we also need to understand that those most in need need help to help themselves.

Alzheimer’s Society, please stop frightening everyone about dementia. Start campaigning for action to address the causes of dementia.