DEMENTED ABOUT DEMENTIA?
2019 - UK
It is a very long time since Britons’ upper lips were stiff. In another lifetime, we were likely to ‘Keep Calm and Carry on’ – or be advised to do so. These days, we run helter-skelter from one scare to another as though the very sky were about to fall on our heads. From Sars to Bird Flu and, recently, from bed-blocking to ticks, we love to panic while congratulating ourselves on our stoical good sense.
Dementia is a very serious condition affecting the lives of some 47 million worldwide. But currently, dementia is seen as top of our list of global health threats - threats that this country feels more than pretty much anywhere else. World Health Organisation figures reveal that the UK has the highest rate of deaths from dementia in the world at 16.1 per cent of over 70s. Or at least, that is what doctors put on death certificates in more than 70,000 cases in 2015. Of course, what is put on a death certificate can be quite random. It is not unheard of for someone in the UK to die from multiple organ failure but the death certificate to record pneumonia as the cause. And it does not follow that other countries are hiding their deaths from dementia. What UK doctors are putting on death certificates, however, suggests strongly that Britain has become more focused on dementia. Can it really be that Singapore has a zero rate of dementia deaths, when the UK’s older population is in free fall from the consequences of dementia? Or is something else at play?
Such statistics plus a recent avalanche of information, claims, research and personal stories, it could be argued that we appear to be in full panic mode about dementia. It does affect many people but it seems of late that everyone, from famous oldies to young people have got dementia. And, thrown into this seething mixture of information and disinformation, is the suggestion that sufferers have only themselves to blame – for being overweight or not learning languages or not doing the crossword or playing the piano. But, not to worry, experts say, after they have driven you to a frenzy of concern, life is not over when you get the inevitable diagnosis of dementia.
Every case is a tragedy for the sufferer and their family. But it is wrong to imply that we are in the middle of a dementia 'plague' or 'epidemic'. Just because my father contracted the condition does not mean that everyone else is going to get it. He never drank or smoked, he spoke five languages, walked everywhere and played tennis into his 70s, but poor Dad got dementia. He was very very old. It is easy, amid all the brouhaha, to forget that the key driver behind dementia is age..
For the best of reasons, attempts to highlight very real issues can get out of hand, lead to complacency and even have negative effects of creating panic or fear. One minute, you could be trying to draw attention to a problem, the next you are a victim of your own success and a panic has started – perhaps you are even panicking along with the best of them in your attempt to emphasise how important it all is. Or perhaps people will even get bored of being worked up when little seems to be happening.
Of course, dementia is a pernicious and miserable condition – and it is on the increase - along with life expectancy. So it is important to raise funds, to combat the condition and find treatments. But, it can be argued, some of the tactics and rhetoric around dementia in recent years have served to create fear, misinformation and potentially even increased the stigma around the condition.
Dementia is most definitely not like HIV, although, again, some have drawn comparisons. The stigma around dementia is significant enough, without likening the condition to HIV, which as anyone over 40 will remember, caused mass hysteria some 30-40 years’ ago. Sufferers were shunned and practically forced to carry bells, so great was the fear. Even today, HIV carries stigma. So likening dementia to HIV is hardly sensible.
With all the wild stories, claims and fear of late, you may imagine that everyone over 70 has got dementia and more and more young people are succumbing to the condition as it wends an aggressive way through the world. You may also now think that people with dementia have brought it on themselves and are fat, lazy and stupid – thanks to expert warnings about ‘lifestyle’ being a significant factor in dementia. Leading researchers point out that there are some factors, such as diabetes which may have an impact. But as the charity Dementia UK points out on its website: 'Dementia is a global concern but is predominantly seen in wealthier countries, where people are likely to live into very old age.'
There will be more sufferers in 20 years’ time. But this is not mainly because of hamburgers, TV dinners and growing waistlines. The biggest single driver behind dementia is age. There will be more older people. They will not all get dementia, indeed most of them will not get dementia and researchers are trying to identify the reasons why some do. So we should not invest in research, but it is a long way from calling dementia an epidemic.
Thirty years’ ago, few people lived into their late 80s and 90s, now increasing numbers live beyond 85 – the key age group for dementia. The Queen has had to stop personally signing Telegrams because so many people now reach 100. The Office for National Statistics reports that over the last 30 years, the number of centenarians has more than quadrupled from the 1984 estimate of 3,250. In the last decade their numbers have gone up by 6,030, a 72 per cent increase.
Our current very old people, those who were born between the wars, have not generally led sedentary lives, gorging themselves on fast food and never walking anywhere. This is the generation which worked hard, walked everywhere and ate home-grown, plain food – meat and two veg. Yet they have a higher incidence of dementia than their parents’ generation. Why? Could it be that they have reached much older ages? And there are expected to be many more people with dementia in 20 or 30 years because the huge ‘baby boom’ generation is going through the system. They have drunk and smoked and eaten rich food, fast food and any other food they could get hold of. They have never had it so good, so may not even make old age or live long enough to contract dementia.
The United Nations World Population Ageing report 2015 states: ‘The world’s population is ageing: virtually every country in the world is experiencing growth in the number and proportion of older persons in their population. Population ageing - the increasing share of older persons in the population - is poised to become one of the most significant social transformations of the twenty-first century.’
The share of the older population aged over 80 has gone from nine per cent in 1980 to 14 per cent in 2015. Between 2030 and 2050 – as the baby boomers go through – that proportion is set to hit 20 per cent of the older population. By 2050, these oldest old are expected to account for 30 per cent of older persons in North America and 29 per cent in Europe. Over 80s will represent 4.5 per cent of the total world population by 2050, compared with 1.7 per cent today.
Interestingly, given the fact that other countries such as Japan record much lower rates of death from dementia, there is another study which show that some of these countries also have much lower rates of social isolation. In a 2012 report, the think tank the International Longevity Centre, compared the social models of ten countries, looking in particular at multi-generational living. The ILC found, around two per cent of older white British citizens live with a grandchild, compared to 11 per cent of their non-white counterparts. Meanwhile, close on 40 per cent of Japanese households had an elderly member and more than 90 per cent of Singaporean households are multi-generational. Death rates from dementia for these two countries are 2.8 per cent and less than one per cent respectively. It was clear, countries with the lowest incidence of dementia deaths, reported the highest rates of multi-generational living. Perhaps there should be more research into this phenomenon rather than panicky claims of epidemics.
Not everyone is panicking, of course. Professor Alistair Burns, the UK's very own Dementia Tsar has not been available for interview. But, in a less-than-hysterical comment in 2013 he wrote: ‘In 1991, there were an estimated 664,000 people with dementia. Increasing that in-line with the increase in the older population suggested that in 2011 the figure would rise to around 884,000. But the current figures actually suggest the number is 670,000 – 214,000 fewer than expected….
‘Second, although the overall prevalence of dementia may well have decreased, the variability seen between regions in the UK is unaffected by the absolute numbers.
‘Third, the results do suggest that the numbers of people with dementia can be influenced and raises the real possibility of the reality of prevention. Changes in the habits and the illness profile of the population could have either an upward or downward effect on the numbers of people with dementia. For example, better survival after a stroke may increase the number of people at risk of dementia but primary prevention (that is, reducing the numbers of people having strokes) may reduce the number. Similarly, better management of diabetes could lead to reduced vascular dementia. Improved educational levels may also protect against the development of dementia.’
Meanwhile, last year Cambridge research found: ‘This smaller than expected increase equates to a 20% drop in the overall dementia incidence rate from 1991 to 2015 – meaning the likelihood of developing dementia for over-65s today is lower than it was for the previous generation. Further analysis showed that most of the decline was a result of a drop in dementia incidence in men, particularly in the over-80s. In women, the drop in incidence rates was less stark, with only a small drop for most age groups and a slight increase for the 80-84 age group.’
Hilary Evans, Chief Executive of Alzheimer’s Research UK, the UK’s leading dementia research charity, warned that it was still necessary to pursue research in the area. But she said of last year’s findings: ‘This is welcome news, but with hundreds of thousands still affected by dementia and no treatments to slow the diseases that cause it, we cannot be complacent. A growing body of evidence is now telling us that dementia risk across the population can change over time: an important reminder that dementia is not inevitable and can be fought.’
"There will be more sufferers in 20 years’ time. But this is not mainly because of hamburgers, TV dinners and growing waistlines. The biggest single driver behind dementia is age."