Playing the numbers game

I write this blog on the cusp of September which is the 4^th World Alzheimer’s Month, a yearly international campaign to raise awareness and challenge stigma. Two announcements in August, both around prevalence, have kept dementia in the news. In case you missed them, here are the links: The Lancet and Alzheimer’s Disease International.

I’ve written before about my scepticism of dementia statistics. I am particularly wary of prevalence data and the dreaded ‘predicted’ numbers of people expected to develop dementia. I don’t feel the methodology behind many of these figures is anywhere near as robust as it should be, and whilst numbers make great headlines, I don’t feel they serve wider society well. In fact I’ve often wondered why we see so many statistics on the numbers of people predicted to develop dementia and yet so few figures for the numbers of services available, or the availability and uptake of different methods for living well with dementia.

Last time prevalence figures were revised downwards, I heard many whisperings of discontent from those who either work within or on the periphery of English dementia policy. It’s astonishing to consider that some people might not welcome such data, however questionable the methodology behind it is, but then dementia has been on an almost unstoppable bandwagon of negativity and doom and gloom headlines ever since the PM’s Dementia Challenge ignited unprecedented interest in the ‘D’ word.

The prospect that less people than previously thought may now go on to develop dementia in the UK is something to be applauded in my view, although I’m not convinced it has anything to do with lifestyle modifications being made by the population. I suspect these new predictions are just attempting to correct previously dubious data. I’d love to think that the population are taking precautions to improve their health by following preventative advice relating to diet, exercise and lifestyle, but I personally don’t feel those messages are anywhere near as embedded as they should, or need, to be.

Meanwhile of course, the Alzheimer’s Disease International (ADI) report paints a picture of increasing rates of dementia worldwide, and highlights how low and middle income countries in particular are likely to be affected by growing rates of dementia development in the years ahead. Without the health and care infrastructure we enjoy in the UK (however fragmented it is), not to mention lower levels of education and awareness, these predictions from ADI seem eminently sensible, albeit offering a huge challenge to the global community to try and offer people at risk of developing dementia, or already living with dementia, in these countries a chance to live a better life than they might otherwise have access to.

So how do we unpick all of this and become more informed citizens? A good place to start is by ignoring headlines that predict doom one day and a cure the next, and that play the numbers game by quoting figures that may appear very authoritative but in essence are based on what mostly amounts to some very complex analytical guesswork. In the same way that the rhetoric of loss associated with dementia and so avidly repeated in the media does nothing to help families navigate their way with dementia in positive and practical ways. The recent 'Dementiaville' programme was a classic example – if they told us once that the families featured were losing their loved ones to dementia they told us a hundred times.

Looking back, I suspect part of the reason why I was able to enjoy time with my dad in his latter years with dementia, and look back so fondly on much of what we did together is precisely because I didn’t inwardly digest statistics and negative portrayals of dementia. In saying that, I don’t for one moment underestimate the impact dementia has, it changed my father’s life and the lives of those around him in immeasurable ways, but it didn’t consume me. Living and loving and taking each day as it came was my coping strategy, not that I realised it at the time.

Whatever the rate of dementia prevalence is in the years ahead, it won’t change the fundamentals of living with dementia, and if cuts in social care services and our over-stretched NHS are anything to go by, whether the predictions of dementia prevalence are high or low doesn’t stop people being denied the care and support that they need. 

If anything we should to be less hung up on numbers and more focused on people. We also need to spend a lot more time and resources on those positive public health messages that are designed to keep people healthier for longer, and an awful lot more energy publicising and replicating some of the really great care and support mechanisms for dementia that a few people have access to but that many others do not.

Until next time...

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Can we reduce the risk?

September is World Alzheimer’s Month (#WAM2014), an international campaign to raise awareness and challenge stigma that is led by Alzheimer’s Disease International. For 2014, the focus is on ways to reduce the risk of developing dementia with brain friendly lifestyles.

Reduction and prevention of dementia are two very interesting topics. Ever since I began this blog and my wider work, I’ve met people from all walks of life who’ve heard my dad’s story and then asked me what they can do to ensure that they don’t develop a type of dementia.  Based on that, you’d assume that it would be something I’d have written about extensively, but reduction and prevention of dementia don’t seem to make for very popular copy.

In 2012 I wrote ‘Five-a-day to keep dementia away?’ and aside from touching on prevention and reduction in relation to other areas of dementia policy and care, that is the sum total of my writing on these topics to date. It seems that when I’m actively involved in face-to-face discussions, people are genuinely interested in any tips I might have that could help them avoid developing dementia, but there isn’t much appetite for reading about it, despite the fact that dementia is said to be the most feared disease for the over 50’s.

The people who are most actively interested in preventative advice are usually those who’ve been so deeply personally affected by a particular disease that they would do anything to avoid either developing it themselves or seeing other family members living with it. That is certainly true for us as a family. 

My childhood was full of general messages about healthy lifestyles, all of which have stood me in very good stead as an adult. Those messages weren’t linked to avoiding dementia, it was just good advice. Only in the aftermath of my dad’s diagnosis did my mum ask one of his consultants what measures she could take to try and avoid developing dementia. The advice, for what it’s worth, was to take Gingko Biloba.

Gingko, like everything from coconut oil to vitamin D, has been linked to reduction and prevention of dementia. I don’t want to get into the science behind the various claims and counterclaims – I would argue that anything healthy at moderate levels is the common sense approach, but I am not medically or scientifically qualified to take that theory any further.

Ultimately, of course, we are all responsible for ourselves. Prevention of any disease comes with it elements of sacrifice. No one has ever said that eating rubbish, drinking to excess, smoking 50-a-day and never taking exercise is good for you. Some people may be able to go through life like that and live to a ripe age without a complaint in the world, but most of us can’t, and who wants to take the risk that they are in the majority? Sadly far too many people it seems.

Moderation is necessary in all things related to lifestyle, along with education, common sense, an immunity to persuasive advertising campaigns and a basic sense of responsibility to yourself and your loved ones. From the perspective of a healthy lifestyle, this translates in very general terms to:  

• Eating a little of what you fancy does you good, but a lot is likely to give you problems. If it comes out of a packet rather than out of a field, be particularly suspicious.
• Most people can enjoy an occasional social drink without any problems, but anything beyond that will probably be killing off too many brain cells. In other words, a glass may be ok, but a bottle isn’t.
• If you were meant to smoke, you would have been given a chimney in your head (a gem from my parents that was regularly mentioned around the meal table during my childhood – to this day I have never even tried a cigarette).
• Humans were designed to exercise, and as much as some of us may dislike it (myself included!) we are sadly going to have to accept that fact and find something active to do that makes exercise as enjoyable as possible (and let’s face it there are LOADS of options, disliking the gym isn’t an excuse.)

Ultimately healthy genes and a good standard of living where you are knowledgeable, in decent housing, not living in food poverty and have access to outside spaces for recreation are also necessary, it’s just that they are rarely talked about because they touch on big social issues that aren’t entirely comfortable for policy makers. 

 

On a personal level, the most precious skill my parents (mostly my mum) ever taught me was the ability to cook (the joy of cooking with my dad’s home-grown fruits and vegetables was a particular highlight). Making healthy, nutritious meals is the sort of daily life skill that many adults who live off of processed and packaged food would benefit from, and I count myself exceptionally fortunate that I love cooking. That early education from my mum and dad is the essence of good parenting. I was very lucky – others sadly aren’t.

 

I predict that during this year’s World Alzheimer's Month we will see a lot of coverage given to the idea that ‘What’s good for your heart is good for your head’. A great slogan that is yet to really seep into the public consciousness, but maybe September 2014 is the month when some real traction will be given to the vitally important and still greatly neglected reduction and prevention agenda.

World Alzheimer's Month 2014 - Graphic from Alzheimer's Disease International



I love this graphic from Alzheimer’s Disease International for #WAM2014 with five great tips that we can all try to achieve:

• Look after your heart
• Be physically active
• Follow a healthy diet
• Challenge your brain
• Enjoy social activity

For my part, I’m going to start my latest exercise regime – trying to meet the NHS target of 150 minutes of moderate-intensity exercise a week with additional muscle strengthening exercise. I’ve failed with so many exercise regimes, but with renewed enthusiasm I will try to get fitter and reduce my own risk of dementia and other health problems.

 

Carpe diem – Seize the day!

 

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