Dementa: what they don’t tell you…

Independent on Sunday, 23 August 2015

… is to eat healthily, exercise, and stay mentally active – it’s not a cure but it can make a significant difference

Good news about dementia is in short supply. There is no cure as yet, and so many new cases have been predicted that it’s been described as an epidemic. I’ve seen its devastating effects on my mother, who suffered from dementia for the last three-and-a-half years of her life, and another relative has recently been diagnosed with a mild form of the condition. So has one of my closest friends.

All of these women are a generation older than me. Last week’s rare piece of positive news, which shows that the number of people now living with dementia is levelling off in Western Europe, comes too late for them. The other headline finding of the latest study – that a healthier lifestyle in middle age appears to have protective effects – doesn’t have obvious relevance to people who have already been diagnosed with the condition.

The study shows that the expected increase in the number of dementia cases since the 1990s hasn’t materialised, casting doubt on the validity of the “epidemic” label. A review of five large epidemiological studies suggests that figures from the 1980s which have been used to predict an upward trend are out of date. In four European countries there was no increase in prevalence and the UK actually showed a drop; there were 22 per cent fewer people aged over 65 with dementia in 2011 than had been predicted in 1990.

The experts think this may be because middle-aged people have adopted healthier lifestyles, reducing known risks such as having high blood pressure and high cholesterol. “This evidence suggests that attention to optimum health early in life might benefit cognitive health late in life,” the report observes drily. For my generation – the baby boomers – that has meant giving up smoking or avoiding it altogether, taking up running or going to gyms, and eating healthier food. We are very different from our parents’ generation, who missed all the modern messages about what constitutes a healthy lifestyle.

My mother grew up at a time when no one talked about the importance of physical exercise and a healthy diet. She smoked when she was younger, I don’t think she went to an exercise class in her life and she didn’t do much walking either. Like many women of her generation, she lived to a ripe old age but suffered from failing health for years before she died. I worried about her sedentary lifestyle but she lived at the other end of the country and it wasn’t a priority for the health professionals she consulted.

This isn’t an unusual situation but it has dreadful consequences. There were more than 800,000 people with dementia in the UK in 2013 and the impact of the diagnosis on their lives, not to mention the emotional strain on families and friends, is enormous. My mother died last year after a harrowing period in which she suffered delusions and auditory hallucinations; she accused friends of stealing from her and was convinced she could hear men trying to break into her first-floor flat in the middle of the night. Eventually she was unable to look after herself and had to move into a care home.

Dealing with such problems is a huge challenge for the statutory services, which have been criticised for the way they respond. Two years ago, the Care Quality Commission said bluntly that the health and social care system was struggling to care properly for people with dementia.

Here’s an example: even before the latest research confirmed the benefit of exercise and a healthy diet for the middle-aged, evidence existed that changes in lifestyle are beneficial for people who already have dementia. The Alzheimer’s Society is unequivocal on this point, insisting that “leading a physically active lifestyle can have a significant impact on the well-being of people with dementia”. But none of the elderly people with dementia that I’ve known have been encouraged to take more exercise – now I think about it, that applies to virtually all the elderly people I know.

Care homes organise visits from hairdressers, chiropodists and singers but I’ve never encountered one which has exercise equipment or promotes the benefits of regular physical activity. Whether they live in residential care or at home, my relatives’ immediate needs have been met but they’ve been left sitting in chairs most of the day.

When my relative was told she had dementia earlier this year, I hoped things might have improved since my mother’s diagnosis in 2011. This elderly lady has bouts of confusion and forgetfulness, but she’s quite capable of walking if she has someone with her; when I stayed with her last month, I took her to the cinema and we even went on a boat trip around the Farne Islands. But she hasn’t been offered any advice about how she might stimulate her brain, and no one has offered to help her increase the minimal amount of exercise she gets.

Obviously we can’t avoid every case of dementia, especially as more people live beyond the age of 85; around 40 per cent of that age group is estimated to be affected. But with evidence mounting that lifestyle changes in middle age can reduce the risks, it makes no sense that only 5 per cent of research funding is spent on prevention.

At the same time, I’m sure we could make life more comfortable for elderly people who have already received this terrifying diagnosis. It’s too easy for GPs to write a prescription for anti-depressants when what these vulnerable individuals need is emotional support, mental stimulation and gentle physical exercise.

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