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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Join the debate

Back at the start of 2013 I published a blog detailing My Dementia Wish List for the year. Ten months later seems an appropriate time to revisit some of these goals and, looking forward to the G8 Dementia Summit in London in December, explore some of the key issues in the world of dementia right now.

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CARE


How do we improve care for people with dementia?

By providing care that is person-centred, dignified, respectful, understanding  and compassionate. By offering people with dementia the chance to achieve, promoting their independence, ensuring that we always involve the person and seeing their abilities before their disabilities.

How do we support family carers more?

Listen to carers and find out what they need as individuals. Don’t employ a one-size-fits-all model. Ensure all support is family and relationship centred, and recognise family carers as a vital part of the 'CareForce'.

Do we need more specialised training?

It is vital that we offer high-quality, specialised dementia training to both professionals and family carers alike to engender a new breed of 'CareForce'. With the right training we can empower the people on the frontline of care - in homes, care homes and hospitals - with the skills and understanding that they need to support people with dementia.

Is early diagnosis the key for families facing dementia?

Timely diagnosis (diagnosis that is at the right time for the individual and their family), with good support mechanisms in place to ensure that the person with dementia and their family can ‘Live well with dementia’ is the ideal.

How do we ensure people ‘Live well with dementia’?

By putting the person with dementia and their family at the heart of joined up health and social care. Supporting, caring, loving and living with dementia as a team effort within a dementia friendly community.

How can we learn from best practice in the UK and worldwide?

Research good practice, collate that and share it. Be bold enough to highlight what we do well, and equally speak up when care is not what it should be.

How do we improve end-of-life care for people with dementia?

By looking at what individuals want. Encouraging as much forward planning as possible, and having the care and support in place to ensure that those wishes are met with the utmost dignity and respect.


COMMUNITY AND SOCIETY


How do we make our communities more dementia friendly?

By investing in educational, awareness raising initiatives amongst all age groups, crucially promoting the point that dementia friendly communities are good for everyone. We must build on Dementia Friends and some of the great local projects that are proving very successful and share their best practice. It is also vital to ensure that commitments to being dementia friendly are met by every locality to avoid a postcode lottery.

Can stigma be defeated?

I believe it can. So many other highly stigmatised diseases and conditions have managed to emerge from the shadows. Dementia can be the next one.

How to we increase awareness?

Talk about dementia. Listen to personal experiences. Provide platforms to share. Be open and honest. If everyone touched by dementia made a commitment to speak about it to someone with no knowledge, awareness would transformed.


RESEARCH


How do we improve treatments?

Through increased research, more documented evidence of what is working in practice and the sharing of good practice, innovation and intelligence. Ultimately, however, a good treatment for any individual is about finding what actually works for them, not what is supposed to work for them.

What options are there aside from drugs?

Examples of therapeutic non-drug treatments that have been shown to alleviate dementia symptoms include music, art, dance, reminiscence, aromatherapy, massage, exercise, yoga, light therapy, cooking, gardening, sensory therapy, sculpture, animal therapy, poetry etc. The list is endless, but it’s about finding what is right for each individual.

How do we prevent dementia?

With over 100 different forms of dementia, not enough is yet known about each form and how to prevent it. On a general level, following all the well-known advice about healthy diet and lifestyle, regular exercise, and ensuring that you have enough sleep can only be a positive step in trying to prevent a host of illnesses and diseases, including dementia.

Will we ever have a cure for dementia?

Science is advancing. One day maybe we will!


THE FUTURE


Can we cope with the predicted levels of dementia in the future?

Many of our health and social care systems are already overstretched. Far more capacity needs to be built into these systems in order to fully support people with dementia now and in the future. We will also need to look towards innovation and flexible care models to ensure that we can meet demand for services and expectations of what services should be providing.

Is technology the answer to improving care?

Technology is an increasingly important factor, and for people with young-onset dementia it has a particular interest as individuals in this age bracket are often leading very technology-rich lives at the point that they are diagnosed. Technology undoubtedly has its place, but it must never be seen as a replacement for human contact and interaction.

What can the G8 Dementia Summit produce?

Hopefully a really positive consensus on the way forward for research and care for people with dementia worldwide. It will provide an unprecedented platform on which to discuss the major issues facing professionals and families, and provide a much need focus on a disease that poses one of the greatest challenges to relationships, medicine and care that the world has ever seen.

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This is, of course, just a snapshot of the current picture. Join the debate by adding your comments below.

Until next time...

You can follow me on Twitter: @bethyb1886

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The ageing mind

Given that dementia is one of the diseases that people fear the most, there is a very strange acceptance that we will all have ‘memory problems’ as we get older. Indeed the government’s National Clinical Director for Dementia, Alistair Burns, recently said in a meeting with myself and other colleagues that "by the time he got memory problems" he hoped that all the work he has done to revolutionise dementia care in the UK would have come to fruition.

Personally, I have always found it curious that memory problems are so associated with old age. Many people of my generation and much younger struggle to remember all kinds of day-to-day things, with such lapses sometimes impacting very negatively on their work or relationships. For some people that forgetfulness is as a result of enjoying a little too much alcohol, often with the intention of ‘drinking to forget’. In those circumstances forgetfulness is somehow celebrated by the young, yet in our older generations it is considered a weakness by society.

So are we perpetuating a myth by bracketing a decline in memory with growing older? Obviously as we get older all our organs, including our brains, can begin to show the effects of having worked so hard for all those previous years. Lapses, small failings and those ‘what did I come into this room for’ moments affect everyone at some time in their lives, but memory problems alone do not necessarily mean that someone has dementia or will go on to develop it.

Associating memory problems with older age also has much darker connotations. Memory problems in all their forms, from the mildest to the most serious, can often lead to the assumption that the person is stupid. It is a myth that haunts dementia to this day, and one that is wholly inaccurate. Moreover, if you take that one step further and assume that all older people have memory problems, it is no wonder that much of our society believes that our older generation have less worth than their younger counterparts.

As in so many matters, whilst the young can ‘get away with it’, our older people are usually judged the most harshly. Moreover, once those widespread assumptions are made about the abilities of our older people to be able to engage their brains, they then find themselves largely excluded from decisions that affect them, particularly but certainly not exclusively, in health and social care.

Take for example the current controversies around dementia ‘screening’ (something that I will be blogging about in the near future). Has anyone asked the population over 75 what they think about these proposals? Probably not, and if they have, I very much doubt anyone listened to the response. Yet with an ageing population, the ‘grey vote’ as it is so patronisingly described will have an ever increasing say in the futures of our politicians. Perhaps it is time for policy makers to offer a little more respect, and authority, to their elders and betters.

So how do our older generation fight back against the assumptions being made about their memory? All the best advice I’ve ever heard about keeping your brain in tip-top shape largely revolves around the standard recommendations for a healthy diet, plenty of exercise, reducing stress and getting enough sleep, but what really stands out for me is the part about socialising.

A roaring social life, even better than you had in your teens and twenties, is the sort of prescription I think most people would like from their doctor. No longer is ageing all about growing old gracefully – it’s about getting out and singing, dancing, acting, volunteering, campaigning, getting involved in community projects, and putting the world to rights with friends in coffee shops and mates down the pub.

The benefits of socialising shouldn’t just be confined to those trying to prevent memory problems however. If anything social interaction becomes even MORE vital for those people who already have memory problems that form part of living with dementia. Yet this can be the one time in someone’s life when they are least likely to have opportunities to socialise or be accepted by their community if they try to.

How ironic that the isolation many older people feel, whether they already have issues with their memory or not, is effectively increasing the numbers of people with memory problems and the severity of their symptoms. Moreover, the widespread assumptions being made about older people developing memory problems has the potential to turn into the sort of self-fulfilling prophesy that marginalises our older generation even more. We should be supporting our older citizens to lead full and active lives within their communities and, most importantly of all, make the best of every asset that they have, including their memory.

Until next time...

You can follow me on Twitter: @bethyb1886

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Five-a-day to keep dementia away?

Fish pie - Brain food?

One of the things I am most frequently asked is how do you prevent getting dementia? People who have seen how this disease eventually ravages a person would do anything to avoid getting it, and those who have no first-hand experience, but then hear about my father’s physical and mental decline, are generally keen to avoid developing dementia.

Sadly there is no magic solution to prevent getting this disease. The healthiest and most physically and mentally active can still develop some form of dementia during their lives. My father is a prime example of this: he was a very active, hard-working man with a healthy outdoor lifestyle, who very rarely smoked his pipe and only occasionally enjoyed alcohol. Prior to developing dementia he was not over-weight, and had a healthy diet with lots of fruit and vegetables.

The tipping point, in my father’s case, was retirement. His previously busy life as a farmer suddenly stopped; the adjustment coincided with him losing interest in some of his hobbies and his life became more sedentary. The huge mental upheaval of no longer being a working man took its toll, and where his life had previously been about the dawn-till-dusk responsibilities and expectations of tending his animals, he was suddenly as free as a bird. Sadly, however, he never found his wings within this new existence.

Very gradually the type of vascular dementia known as multi-infarct dementia (which is caused by a series of small strokes), set in. These strokes were so tiny that for a long time dad never reported any change in how he felt, even though the strokes had begun to wreak havoc in his brain, and by the time symptoms of what we now know was dad’s dementia were very obvious, damage had occurred, and would continue to for many years before he finally had a diagnosis.

Other relatives in dad’s care home also reported that their loved ones had led healthy and active lives prior to developing dementia, so is there any answer to the question of how to avoid the big D?

Given my interest and research into this subject over many years, and the expert advice, studies and tips I see on a daily basis as part of my job, I would love to report that there is a fail-safe way to avoid developing dementia. To date this has not been found though, and however well people can live with this disease, and I truly believe they can with personalised, therapeutic care in community settings that value, support and embrace them as a person, there will obviously never be a substitute for prevention.

I am not medically trained, but I absorb all the information available and one of the most powerful messages is the one reminding us that what is good for the heart is also good for the brain. I am a great believer in fresh, wholesome food, rich in fruit and vegetables, low in dairy and with meat and fish in moderation. In short, the key to our food and drink intake seems to be about maintaining a good 20% acid/80% alkaline balance.

I avoid processed, ready prepared, or take away meals, always cook from raw ingredients (including staple items like bread), and never touch anything with additives in it. I would rather have a teaspoon of raw cane sugar than anything with so much as a particle of artificial sweetener in it. In fact, in all three of my father’s care homes, where they offered residents squash (laden with artificial sweeteners) throughout the day, we banned them from feeding this to my father and brought him in pure fruit smoothies instead. We firmly believe that the nutrition within those drinks (especially considering that he could eat very few fruits raw due to his swallowing problems), helped his body to recover from the dozens of chest and bladder infections that he endured during the last few years of his life, proving what I wrote about here, that good nutrition is vital to not only preventing dementia but helping those already living with it to have a better quality of life.

I exercise as much as I can (I could always do better), am a big believer in natural (non-chemical) skincare, get as much rest and relaxation as my schedule will allow, and try to keep a healthy work/life balance. If giving the brain a good workout is as beneficial as we are lead to believe, then mine certainly gets a daily dose of that due to my job, and I have no desire to retire, which in the case of my generation is probably just as well! I have never smoked, rarely drink, never touch Coca Cola or the like, and confess to being addicted to water. Wherever possible I also source alternatives to pharmaceutical preparations, something I think most pharmaceutical companies would prefer isn’t encouraged. The only thing I do struggle to influence is the pollution in the atmosphere, which I would be the first to admit is very bad for you.

When my father was initially diagnosed with dementia, we sought the advice of one of the leading old-age psychiatrists treating him to find out her view on what could be done to prevent dementia. She recommended a ginkgo biloba supplement, while other advice I have read more recently suggests supplementing with B vitamins can help to keep the brain healthy. There are literally hundreds of studies out there suggesting positive associations between good brain health and different supplements or foods. What to believe is always the main problem, but my feeling on all things is generally that moderation is the key.

Granted we all have our own choices to make, our own lives to lead and face the consequences of our actions as a result. Whether mine or my family’s choices will make it any less likely that we will develop dementia only time will tell, but I firmly believe that anything that keeps you healthier generally is at least a step in the right direction.

Until next time...

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