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Hope, not certainty

The trouble with positive news about dementia research is that it tends to be over-egged by the media or just misunderstood by some of the readers and listeners. Perfectly understandable when we all want good news.

The announcement last month of genuinely exciting progress achieved by researchers in Leicester is a case in point. In ten years’ time we might regard it as the moment dementia’s defences were breached, a discovery that led to greater things and then more great things. For the time being, however, it offers hope rather than certainty.

The BBC was careful in its tone, but I am sure there will have been less restrained reporting elsewhere.

There was plenty of scope for misinterpretation. The day after this news broke, I overheard a visitor in our office say, “So they’ve found a cure for Alzheimer’s, then.”

“No, they haven’t,” I quickly called out from the next room, resisting the temptation to add an expletive in front of “haven’t”. I then hurried out to explain to the visitor what had really happened.

We can’t afford to let it be thought that this is a time to sit back and relax. The BBC’s headline might have contained the words “breakthrough” and “turning point”, only the latter in inverted commas, but we’re a long way from home.

One certain outcome of the announcement is that there will be new research proposals, seeking to build on what happened in Leicester. We would welcome them, provided we have the funds to support them. That, in turn, depends on supporters keeping up the good work and raising the money we need to fund new research.

In other words, it really could be a breakthrough if we keep up or step up the fundraising needed to build on it, but it won’t be if we start to ease off, thinking it takes us further than it really does.

I hope it motivates current and potential supporters to help us secure the funds we need for the next and critical phase of dementia research. 

Wider and deeper - After the Debate

The BRACE Dementia Debate took place at UWE last Thursday and seems to have been judged a great success by everyone who attended. I’d just like to say a bit more now about the purpose of the evening, and where we hope it will lead.

The format was familiar to anyone who listens to Any Questions? or watches Question Time, both flagship BBC programmes and both chaired by one of the Dimbleby brothers. We were honoured to have Jonathan Dimbleby with us as chairman for our debate, and he ran things masterfully. As I said to him afterwards, I was finally able to relax at 7pm, after months of planning, when I knew everything was safely in his hands.

We also had a very strong panel, representing as wide a range as possible of the challenges which dementia poses. The audience, too, contained scientists, doctors, social services managers and many others with specialist knowledge, including people who have had the painful experience of dementia in the family. The combination of perspectives in the room led to some interesting redirections of the debate, such as the need for better integration of health and social services, or some unexpected replies to the request that each one of the panellists suggest one thing we can do to fight dementia.

That’s the reason behind the word “wider” in my title. I thought of going with “wider still and wider” but, quite apart from the unfortunate imperialist connotations, it falls short of our ambitions.

We wanted to get beyond the usual constraints of conversations about dementia, which tend to follow a particular route, e.g. from the cruelty of the disease to whether we are getting closer to effective treatments. Bringing together such a range of expertise, guided by a top quality chairman, made us hopeful that we could really start to delve into various aspects of the subject in a very public forum. The feedback suggests it worked.

But don’t take my word for it. You can watch and listen for yourself here - http://embed.bambuser.com/channel/Brace. Start about 8 minutes in, or you might worry that your PC has lost the means to emit sound!

We’d love to have your comments, too. You could always use this blog as a place to leave them.

Finally, this is not the end of the process. We started a year ago by taking what I nicknamed “the BRACE road show” to Frome and Salisbury, where we engaged members of the public in discussion with scientists and others. Earlier this year, we held an evening of short films about dementia at the University of Bristol, followed by a remarkably successful discussion about the different approaches science and art can take to dementia. Thursday’s debate was the most ambitious of these occasions to date, and we plan to build on this initiative.

By pooling our ideas and experiences, we might just be able to change the ways in which we look at dementia and the ways in which we respond to it.

Raising awareness

As I start to write this, I'm sitting behind the BRACE table at a business exhibition at Bristol City's stadium. The fact that I'm writing my blog instead of coping with enquirers crowding three deep round our table will tell you that it's a bit quiet at the moment. However, the conversations we had earlier have already made this exercise worthwhile.

This is all part of "raising awareness". Awareness of dementia and the potential of scientific research, awareness of BRACE and its part in this work. It's an essential activity for a fundraising charity. The simple and often urgent thought process in fundraising is a straight line from a problem to a potential solution... and therefore the need for money or gifts in kind.

Next week we are attempting something more ambitious. We have organised a major debate about dementia, hosted by the University of the West of England and chaired by Jonathan Dimbleby. We have a heavyweight panel, with great knowledge of science, medicine, public policy, care management and the experience of supporting a loved one with dementia. There will be scientists, clinicians and many others with valuable expertise in the audience.

What we are hoping to achieve is a discussion both wider and deeper than is normally possible at gatherings concerned with dementia. It is unusual to find such a diverse range of skills and perspectives in such a public setting.

Public? Ah, that reminds me. As well as the 250 people in the room, we shall be sharing the debate with you and anyone else who wants to watch online. The webcast will be made available through our Facebook page and you can join in on Twitter.

Date: Thursday 3rd October  Time: 7pm (19:00 BST)

Publishing time again

Where will you find a world class violinist, a former band member with Lennon and McCartney, one of the UK's best known broadcasters and news of a potential Alzheimer's treatment? In the BRACE Newsletter, of course!

We publish our Newsletter just twice a year, and I always look forward to the week when that happens. The spring issue comes out in the first week of April and the autumn issue in the first week of September.

It takes a lot of work to get to this point, of course, and I am hugely grateful to volunteer editor Emma Stevenson and designer Lesley Hill from MammalCreate for all their hard work and skill. The material they work with is provided by the BRACE staff team, the scientists and many of the supporters we thank in the pages of the Newsletter itself.

Getting the balance of the Newsletter right is not a simple task. To cut a very long story ridiculously short, we have a mixture of scientific research stories to inform readers about some of the progress being made, and fundraising stories to inspire others while thanking people who have done particularly remarkable things or raised a lot of money.

You can read it online or email us if you want a paper copy posted. We also have a new Research Update, focusing this year on clinical research and can send a copy by post or email.

Helping one another

I’m indebted this week to another blogger, Hilary Douglas-Smith. Hilary’s blog is radically different in purpose from mine, because it supports young mums in the Bishopston area of Bristol. This might not seem the most obvious association for a dementia charity, but please read on!

BRACE works all the time with community groups and local businesses. It helps us get our message out and about – face to face, on paper or online. When I met Hilary to discuss ways we could help one another in and around her part of Bristol, I discovered that she had worked for the Alzheimer’s Society and knows a lot about supporting people with dementia and their families. She wrote out some useful advice for anyone thinking of setting up a support group for carers. It’s a bit long to paste straight into my blog but, if you’d like a copy, just email me and I’ll send it to you. 

We are a dementia research charity, of course, and people looking for advice on care and support will generally turn to the Alzheimer’s Society. However, we have a useful page of wide ranging links on this site, and we know that this helped people urgently seeking help and advice about coping with dementia in the family. While our charitable aims are very clearly defined, we’re happy also to be a hub for people looking for information about other aspects of the struggle with dementia.

So thank you, Hilary, for helping us to help others.

Definitely not boring!

I blogged a few weeks ago about one of our most resilient supports, Jo Earlam, who is herself a blogger. She writes about her remarkable effort to complete 50 marathons by the time she reaches 50 in 2015. Her running is her fundraising, which is where BRACE comes in, but the running and blog are both about so much more.

It seems that Jo’s blog has attracted what she calls her “first heckler”. The heckler wrote, “Better to let the whole world think you are boring, than to write a blog and prove them 100% right.”

Okay, it was pointlessly unkind and, as far as I am concerned, complete rubbish. However, it did give me pause to think about what is interesting in fundraising and the related news which charities publish.

The blunt fact is that most fundraising events are not interesting to read about. You wouldn’t want to read a blow by blow account of a volunteers’ coffee morning unless, of course, it all went horribly wrong in hilarious fashion, as if scripted by Alan Ayckbourn. You might be impressed by someone’s efforts in an urban marathon, but you wouldn’t read several hundred words about paving stones, pedestrians and pigeons.

What makes their efforts interesting is that they are part of a bigger story, perhaps several bigger stories. People who raise funds for BRACE usually do so because their lives have been cruelly touched by dementia and they want to fight back. It’s their stories, not the making of cakes or the abseiling down the office block, which people want to read about. When they team up with BRACE, their stories intersect with a broader human story about what dementia does to ordinary lives and how we are trying to lift its curse.

We put Jo on the front of our Newsletter after her first marathon for BRACE, not because she had raised money for us, but because she had a story to tell. The how became the why and the who, and every volunteer, fundraiser and donor would have recognised something of themselves in what she wrote.

People who send us their stories and photos after their fundraising is completed give us help above and beyond the money they add to our research fund. They help other people understand why they do what they do and why it is that beating dementia matters to ordinary people everywhere. They give us colour and humanity, and we relate so much better to these warm qualities than to scientific words signifying proteins and processes in the brain.

More generally, what makes human beings interesting and remarkable is their ability to take the ordinary and do something extraordinary with it. Our volunteers take cake making and long distance running and turn them into research funds. They often take personal grief and turn it into hope for others. I think of it as a sort of alchemy, and it’s definitely not boring. 

Echoes of dementia

For me, like many people, a holiday is an opportunity to enjoy some reading without all the usual distractions and disruptions. For our family holiday this year, just finished, I had been saving the latest novel by one of my favourite authors, Khaled Hosseini. This was the recently published And the Mountains Echoed. Hosseini’s previous works are The Kite Runner and A Thousand Splendid Suns.

It shouldn’t surprise me that a holiday and a darn good novel is no refuge from the subject of dementia. This book has a rich cast of characters and it will not ruin anyone else’s experience of the story if I mention here that one of them develops dementia. The novel takes in three continents and a period of more than 60 years, so I’m not giving much away. The book is about much wider issues in relationships, and I am not pretending that dementia is a major theme, but its impact on one person and the immediate family is important in drawing together the threads of the story.

This is yet more evidence of dementia growing in our collective awareness, in literature, drama and other cultural forms. What is more interesting, though, is the way a writer treats the subject. Khaled Hosseini does so with sensitivity and subtlety, his knowledge of the subject perhaps reflecting his medical training. The impact of the dementia in this story has as much poignancy as in any other writing I know of, perhaps more because of its context in the longer story, but I believe Hosseini’s approach belongs to a newer trend in the way we write and talk about dementia.

It seems to me that the conventional approach to dementia, once it became possible to write about it explicitly at all, has been to emphasise the hopelessness of the condition. People with dementia are generally portrayed as confused, at risk to themselves and living in a world of deepening darkness. Some more recent writing, including this novel, seems to moderate that picture with a sense that the gloom is neither total nor immediate. In Hosseini’s depiction of the condition, the sufferer continues to have a close relationship with a daughter and a neighbour and some enjoyment of simple pastimes such as television. When a care home finally has to be considered, it turns out not to be the stereotypical home full of “old women, with ruined faces and whiskers on their chins, dribbling, chattering to themselves, glued to television screens”. There is in a nod – brief, but of great significance to the story – to the practical benefits of diagnosis, the knowledge that “I must wade into the waters, where I will soon drown”.

It’s not cheerful, not the stuff of “feel good” fiction. However, it recognises the difference between utter darkness and gathering twilight.  Awareness of dementia includes understanding that it is not a single, predictable experience and that life does not end at the moment of diagnosis.  As with other forms of suffering in this novel and Hosseini’s other novels, redemption lies beyond the pain and not in its undoing.

Perhaps I am being unfair to older literature or perhaps I am just smitten with Khaled Hosseini’s work. And perhaps you have an alternative view which you would like to outline in the comments box below.

A little extra help

When people volunteer to help a charity, they might imagine themselves standing behind a sales table, doing something mad for sponsorship or stuffing newsletters into envelopes.

A lot of volunteering for BRACE is done, not in the BRACE office or at the charity’s own events, but within groups to which the volunteer already belongs. This could mean a business, school, college or church, for example, which has made BRACE its supported charity.

In the past week, we have gained greatly from little bits of extra help from two people who belong to groups which have supported BRACE in the last year, and I would like to thank them.

First, there was Ali, who works for IOP Publishing, big supporters of BRACE in 2012. She offered to carry on volunteering for us, and spent a day in the office this month. Out of this came a conversation about the fact that it was so difficult for people to sign up to follow my blog. Well, I like to think that’s the only reason I don’t have more followers.

Ali found that I was missing a simple trick, in that BlogSpot provides a gadget or widget or something which creates a much simpler sign up option. Anyway, with Ali’s help, I installed it and then changed the layout of the blog so readers could actually see the sign-up box without having to prod the margins of the screen with the cursor.

Then there was another problem which has dogged us for even longer. We set up our Facebook page in 2009 and it has never been visible to searches within Facebook or Google searches on, say, brace + facebook. You had to know the URL to find it or navigate there from our website.

This has baffled us. Over time we have asked an SEO expert and various social media clever clogs to help us, all to no avail. Until yesterday, that is, when the new president of the Medical Science Society at UWE, a student society supporting BRACE for the third year running, came in to introduce herself. I don’t know how it came up in conversation, but Sofi said she thought she might know what to do. A few minutes later – bingo!

Thank you Sofi, thank you Ali. These look like small contributions to our work, but they could be very big. Who knows how much of a difference they could make to our visibility and, as a result, the resources we could bring in future to dementia research?

Just a small reminder that you don’t need a fat bank account, hours and hours of spare time or a doctorate in biochemistry to make a worthwhile contribution to fighting dementia.

Jo just doesn’t stop

I like writing about our more remarkable supporters, and Jo Earlam is certainly in that category.

Jo ran the London Marathon for us last year but it wasn’t her first marathon and she didn’t exactly stop at the finishing line. She has set out to run 50 marathons before she reaches the age of 50 in 2015, which is a pretty tall order. From recent correspondence, I know that she has been running in Devon and Barcelona among other places this year.

Not the finishing line yet!



The image that springs to mind is Forrest Gump running unstoppably across the USA and back again. There are lots of obvious differences, of course, not least that Jo has a serious purpose in raising funds for dementia research, taking her painful experience of having two loved ones with dementia and converting it into a very positive contribution.

The reason that I am writing about Jo again this week is that she is now at the half way stage in her marathon of marathons. She has also started a new blog in which she bravely writes about living with OCD as well as the herculean task she has set herself. Jo, a journalist by trade, writes well and I would encourage you to read her blog. Keep up with her if you can!

What the scientists say about us

Trying to communicate what we do and the difference we make isn’t always easy. The message can often be a complicated one and the beneficial results of research are eked out over many years. However much the headline writers like to shout “Coffee could cure Alzheimer’s” and other improbable things, good science has to be painstaking and moves at an almost geological pace.

It’s therefore a great week when I can quote two top dementia research scientists who have worked with BRACE for years and who have put their finger on how we make a crucial difference. I would argue that we have a special and possibly unique role in engaging the public as well, but this about BRACE’s impact on research.

On Monday, Professor Seth Love of the University of Bristol compared BRACE to Heineken or, rather, its famous marketing line. Seth told a group of volunteers that BRACE reaches the parts that other charities don’t. This was not a criticism of other charities, which make a huge contribution (much bigger than ours in absolute financial terms), but pinpointed the way in which we help start research initiatives which might not otherwise see the light of day. There is ample evidence that these prove worthwhile and can lead to greater things later, once the principle has been tested.

Members of the Dementia Research Group

I was then more than a little chuffed when a copy of a local magazine (“Downend & Mangotsfield Matters”) landed on my desk, with an article about Dr Patrick Kehoe across its centre pages. Pat, who was feted as a local resident, is a colleague of Seth Love and part of the Bristol Dementia Research Group. The article focused a lot on a major clinical drug trial that is about to start (one of the greater things resulting from BRACE-funded research that I mentioned just now). However, Pat also talked about the role that this charity has played in making this and other research possible.

He said, “There is no way I’d have gathered sufficient evidence to justify the running of this trial without that initial funding from BRACE. This small, local charity has paved the way for world class study and I really want the public to know the difference they make when they put their odd £1 or £2 into a collecting tin, or support fundraising activities in the name of this amazing charity and others.”

We couldn’t really want a better endorsement than this and our supporters couldn’t want a clearer confirmation that they have made a difference already.

Walking and dementia

The advice generally given by doctors and researchers is that what is good for your heart is also good for your brain. This encompasses physical exercise, including a bit of walking.

In fact, this NHS web page specifically states that you can reduce your risk of dementia by 30% through an appropriate exercise regimen. 

It makes sense to me – improving circulation and strengthening the cardiovascular system must help maintain a good supply of oxygen to the brain. We’re talking brisk walking here, not ambling past a few shop windows or shuffling forward in a queue. 

So it’s always good to report a fundraising activity which happens also to be good for the longer term health prospects of those taking part. There’s a message in it as well as extra funds for research. Some of the exercise-based fundraising is physically very challenging – running a marathon, for example – but it doesn’t have to be.

By coincidence, I have found myself today reporting on two walking activities, one recent and one imminent, which belong towards opposite ends of the scale.

If you want something at the more challenging end, how about a medieval pilgrimage? Three supporters from Northern Ireland have followed in the footsteps of medieval Christians by walking about 800 miles from France, through the Pyrenees to Santiago de Compostela. 

What their final fundraising total is, we don’t yet know, but they have sent us some great photos and some snippets of their story. 

An 800 mile trek might not be everyone’s idea of a good time (actually, I’d love to do this one day if I ever have the time). However, at the other end of the scale, the Rotary Club of Nailsea & Backwell in North Somerset are offering a day of walks for charity on 23^rd June. The walks range from a 5 kilometre “stroll” to a more challenging 20km route, all through attractive countryside. Those who want to make it a bit more challenging can decide to run instead of walk.

If you live in North Somerset or not far away, why not book a place via the Rotary Club website? You could nominate BRACE as your charity and raise funds for research while doing your own cardiovascular system and brain a bit of good.

The fact is, walking might be good for the walker’s brain, but right now it is proving helpful to the brains of everyone who will one day benefit from research funded by sponsored walking.

More aware of dementia?

Sunday sees the start of Dementia Awareness Week, which is run every year by the Alzheimer’s Society.

It’s an opportunity for all of us to get people talking about dementia, but what is to be gained by making people more aware of dementia? Surely we all know that it exists and that it is a terrible condition?

Perhaps what really counts now is the quality of the awareness rather than just being aware that dementia is a problem. Just as we have moved on from thinking that dementia is part of being old to understanding that it’s a condition caused by a range of diseases of the brain, we need to get beyond the stigma and stereotype that still dog people living with dementia.

If your image of someone with dementia is that of an isolated, bewildered person utterly dependent on others at all times, think again. Most people with dementia can enjoy a reasonable quality of life if they are given appropriate care. Realising that makes it more likely that they will be given that care rather than shut away and neglected.

If you think that medical science can do nothing, you might be surprised to discover the advances that have been made and those which might well lie just ahead of us. Conversely, if you saw a newspaper headline claiming that coffee or Sudoku could prevent dementia, it was hype. The progress of scientific research is slow and painstaking and cannot currently justify the dramatic breakthroughs beloved of headline writers. However, research is slowly changing the way we see dementia and offers real hope of a very different outlook for people who develop the condition in years to come.

So let’s use Dementia Awareness Week to be better informed, not more scared simply because the reality of dementia has seeped into our consciousness. Awareness as the opposite of denial is a gloomy prospect, but awareness as deeper understanding is a different matter altogether.

Committed people

The London Marathon took place last month and we received great photos and an upbeat story from one of our runners, Heidi Simms, last Friday. Heidi happens also to be our most successful fundraiser at this event this year, though there is time for others to close the gap as their fundraising continues.

We really value the huge effort that people put into raising funds through sponsored events. It involves a big physical effort, of course – the training and then the event itself – but it also requires work of a different sort to gather sponsorship. The biggest BRACE fundraiser at last year’s London Marathon, Nina Barrett, gathered a team of friends around her and was very creative with her fundraising, passing an astonishing £6,300.

It’s not just the London Marathon, of course, and it’s not just running. Supporters have cycled, swum, abseiled, parachuted, tackled an assault course, climbed mountains and bounced on a bouncy castle to raise funds. There are more sedentary ways of holding a sponsored event if you feel both motivated and exhausted after reading this list.

The benefit to BRACE is often in the message this sends out as much as in the variable totals raised. I get to meet or correspond with people who are passionate about fighting dementia, usually because a loved has the condition or died with dementia not long ago. Those who help us most – whether in terms of fundraising or the stories they tell – are those for whom the cause is a passion and the activity a means to an end.

One of the most remarkable is Jo Earlam who, like Heidi, comes from Devon. She is committed to running 50 marathons before she reaches 50 and has used much of this prolonged exertion to help BRACE in a variety of ways. Dementia has touched her life with pain and this is her defiant response.

So, we are looking for more defiant people to do things for us. People who can raise money, but also people who are happy to send us great photos and moving stories that can become part of the bigger story we are telling. It doesn’t require athleticism or even much physical effort and it should be enjoyable to those who take part. What would you like to do to help us fight dementia?

There is some helpful advice on our sponsored events page.

Knowing

I was asked to give a short interview to BBC Radio Bristol this afternoon. The subject was the rights and wrongs of early screening for dementia, and it picked up on a controversy already current in the media.

This is about whether GPs should screen all their older patients for dementia, even if they visit their doctor to talk about chest pains or arthritis. There are strong arguments for and against early screening, and the anti position has been fiercely argued by Dr Chris Fox from the University of East Anglia, as these articles in The Independent and Daily Mail show. Dr Fox is speaking at a conference in Bristol this evening.

The obvious point to make against early testing is that most of us don’t want to know about things which are certain or highly probable and about which we can do nothing. We live with the certainty of death, but not knowing when or how it will find us is helpful. We are conditioned to live with a mixture of fear and hope, as our forebears have throughout human history.

It is also true that what can be done in response to a diagnosis of dementia is very limited. But that is not the same as saying “nothing can be done”. There are treatments which can slow the onset of some dementias for some patients. Current and impending drug trials may dramatically improve the position over the next few years. It is also important to remember that early knowledge of a developing problem can help someone prepare in various ways – plan their care, put their affairs in order, grant power of attorney.

There is always the danger of a false positive, a wrong diagnosis which creates unnecessary alarm or gloom. This is statistically more likely the earlier the diagnosis is made. However, the patient should be involved in deciding whether that risk is worth taking, and ensuring that there is adequate access to dementia specialists is also important. This last point is not disrespectful of GPs, but they are generalists by definition, and it is normal for a GP to refer to other specialist clinicians.

Behind the fear of what early screening may do to a patient’s state of mind is the stigma and stereotype of dementia. The reality is that, terrible though dementia is, there are large numbers of people living with it and managing at least a reasonable quality of life. Some are astonishingly positive and creative, like the artist I wrote about in one of my blogs last month. Studies suggest that dementia sufferers with a diagnosis tend to have a better quality of life than people who have dementia but no diagnosis. It would be reasonable to assume that they are also less at risk in many respects, because more will generally be done to help them.

On balance, there is much to be gained from early screening, but the patient’s wishes need to be respected. Early screening should not be compulsory but, equally, patients should be able to opt in if they wish.

Stories make it real

Our spring newsletter has just been published and is available from this link.

We are particularly pleased with this issue, which has great content and is as attractively designed as always. My compliments to Emma the Editor and Lesley the Designer.

One of the things I like best about it is that we have three stories from people who have been raising funds for us, largely in their own words. They represent a wide range of age and experience, too.

There’s Sylvia, who lost her husband to Lewy body dementia and fought back against the illness with a series of fundraising initiatives. Then there are brothers Richard and Michael, who are running for BRACE in the London Marathon this month. They are doing it for their Nan. Finally, there is 11 year old Rose, who touched our hearts when she sent us the money she had raised in memory of her Granddad, a WWII veteran.

The science is intellectually challenging and can be very dry. The fundraising can be colourful and great fun. It’s when we have these personal stories, connecting personal tragedy with the huge efforts of our supporters, that the reality of the whole things shines through.

People like Sylvia, Richard, Michael and Rose are why we do what we do, and they become how we do what we do. The rest is down to the scientists whose work they help us fund.

An Easter tradition

Not what you might think. This has no deep religious significance and isn’t even an ancient folk custom. I’m talking about chocolate crème eggs with knitted covers in the shape of chicks.

I kid you not. Someone many years ago came up with the idea of woollen warmers for chocolate eggs and started selling them for BRACE. They don’t actually warm the eggs, which is just as well, but they are a seasonal chick-shaped covering rather like what people used to put on boiled eggs. Volunteers knit the chicks, which are then introduced to the eggs (and no, I don’t know which came first). They are then put on sale at various outlets and – incredibly – we raise as much as £2,000 from them each spring.

There’s a serious point here. A chocolate egg with a bit of knitting sells for a modest price. Each one is the work of a volunteer who gives time to do things on a very small scale. And at the end of it we have a worthwhile sum for research. Lots of individual effort by people who are doing what they enjoy doing and what they can do, resulting in enough income to buy an item of lab equipment or to pay 5-10% of the cost of a pilot project.

The serious point is that no one is too small to make a difference in the long struggle to beat dementia. If you can only give five minutes or £1, your gift will be added to those of thousands of other people and will count.

Of course, if you can give lots of time as a volunteer or write out a big cheque, we’d love to hear from you too!

Alzheimer's as a gift

An hour of short films about dementia might not sound like a great evening out, but about 250 people thought otherwise. They packed into the Great Hall at the University of Bristol last night to watch seven films collected by local filmmaker James Murray-White. We then had a half hour panel discussion which could easily have gone on for much longer had time allowed.

The films were powerful and sometimes startling. The one that stayed with me most was a rough cut of a film called Thinking Outside the Box by Christeen Winford. Christeen had come all the way from Edinburgh for our films evening, which gave me a rare opportunity to compliment a director about her work. She had also provided a powerful drama called Darkness in the Afternoon, but Thinking Outside the Box was quite different.

In this film, an artist called Edward McLaughlin talks about the art he produced before he developed dementia and what he is producing now. The contrast is striking. He regards his earlier work as “engineering drawings”, though I saw plenty of life in the eyes of his subjects. Since his diagnosis, his art has become bolder and more abstract, filled with powerful colours and startling images. It seems that dementia has changed his perceptions of the world.

Edward is quoted as saying, “The thing I like about Alzheimer’s – and I do say like – is that if you have it, it’s normal to think outside the box. You can look at it as a gift or a curse. I choose to see it as a gift.”

Moving images

Next Wednesday evening is film evening. With the generous hospitality of the University of Bristol, BRACE has organised a series of short films about dementia, lasting about 50 minutes in total and followed by half an hour or so of discussion.

The discussion will centre on a panel consisting of two scientists, a doctor and two filmmakers. With an audience expected to approach 300 in number, there is potential for a lively debate about the issues raised in the films.

This is the brainchild of a local filmmaker, James Murray-White, who has himself made a short film about his experience of being close to someone with dementia. James has put a lot of work into creating this event and identifying films, and I would like to thank him for all that he has done.

We hope that the event will bring together the thoughts of people who approach dementia from entirely different perspectives. Scientists and clinicians are trying to cure or contain dementia in various ways, whereas filmmakers – like other artists – represent the human need to find meaning in pain and emptiness.

Putting them together in this very public way will be an interesting experiment and I look forward to seeing what comes out of it!

The University has very kindly given us a great venue in its most prestigious building and is also supporting us on the evening itself. There is still time to book online and entry is free. If you happen to be in Bristol on 20^th March, why not reserve a seat and join us?

We make a difference

We make a difference, we really do. It’s just that it’s so hard to give a simple answer to the question “what has BRACE achieved?”

This is because we fund research that generally takes years to produce clear results. It builds on earlier research and spawns further research. Everything we support is part of a network of scientific enquiry which bestrides seas and continents and draws on donations from other funding bodies, including governments. It’s therefore very difficult for us to say simply “we did this” without over-simplifying or failing to acknowledge the contributions of numerous others. Yet our supporters naturally want to know that their efforts through us are having an impact.

We know that we are making a difference, but how do we pinpoint examples in a way that makes sense without long screeds about context?

It was therefore great news this week when a major drug trial was announced. It involves the Universities of Bristol, Belfast and Cambridge and will be hosted by North Bristol NHS Trust. It also builds on work that BRACE has been doing for years.

As always, our contribution is part of a wide network, with research supported by other charities and public funds playing a vital part. However, our involvement is quite easy to describe. We have supported research projects at the University of Bristol since at least 2004 that have helped pave the way for this trial. We currently fund the research in The BRACE Centre, itself a BRACE initiative, which will be one of the key locations involved in the trial.

You can read on our website what the drug trial is all about. What matters most is that it has clear potential to bring about clinical benefit for future patients. That’s why BRACE exists and it’s one of those moments when anyone who does anything for us can see that they really are making a difference.

Humbug!

Oh no, surely we’re not talking about Christmas in February! Well, we are, but please read on before you close this page in disgust.

I’m one of those people who like to defer having anything to do with Christmas until December. The endless marketing makes a mess of autumn (and advent, if Christmas has religious significance for you) and drives most of us up the wall. Many of us would cheerfully ban tinsel and 1970s Christmas pop from shopping centres until much closer to the festive season.

So I feel a bit of a hypocrite uploading Christmas card designs to our website when there are still ten months to go.

The reality for a charity – like many shops – is that we have to plan far in advance. Christmas card sales start with our September newsletter and various autumn events, where people expect to be able to buy what they need for Christmas. We therefore have to take delivery of our cards in the summer, and this demands a planning process much earlier in the year.

Anyway, enough of the excuses – this is where you come in. Please. We are asking supporters to help us choose our card designs this year from a shortlist of twenty. If you could go to our online poll and vote for three cards, it would really help us identify what is likely to be popular and sell well. The name of the game, after all, is raising as much as we can for research.

It’s all in a good cause, and such an easy way to do a little something to fight dementia right now.

If it helps, you can mutter “bah, humbug!” as you vote.

A good example

People sometimes ask me what "adopting a charity" or having a charity of the year actually means. I usually start my reply by explaining that there isn’t a one size fits all approach to this. To continue the sartorial image, the arrangement should be tailored to fit the supporting organisation.

What I mean by this is that the fundraising activity should fit with the work of the organisation and not get in the way. The aim is to support the work of the charity, but it should always be a good experience for the charity’s partner as well. It might surprise some that organisations which support a charity in this way generally benefit from the arrangement, both in terms of reputation and staff morale/relationships.

Last year, we had an excellent partnership with IOP Publishing, who took us on as their charity of the year and raised well over £6,000, exceeding even their own ambitions. They were great for us to work with because they clearly enjoyed what they were doing for us and took a real sense of achievement from it.

IOP Publishing’s PR Officer, Alison Hadley, and I produced a short case study, setting out what they did and how we both benefitted. You can read here how both BRACE and IOP Publishing saw the arrangement and how it helped us both.

I hope this will inspire a few others!

A small sign of growing awareness

Watching ITV’s drama Lewis last night, I was surprised when discussion of dementia research cropped up.

This was part 1 of an episode called Intelligent Design. One of the fictional Oxford academics in the story was a scientist who was introduced as having contributed to dementia research. Inspector Lewis asked her about her work on Alzheimer’s, whereupon she widened the definition to include other dementias and started to explain the amyloid hypothesis. Of course, that didn’t last very long – the viewers were signed up for a police drama and didn’t want a long explanation of the chemistry of the brain and different theories about the causes of dementia. It was, however, a strangely heartening moment, another small sign that discussion of dementia is becoming mainstream. It doesn’t matter if most of us don’t know what the amyloid hypothesis is, the important thing is that we can talk about dementia.

By coincidence, the programme’s star, Kevin Whately, is an ambassador of the Alzheimer’s Society.

Losers are also winners

The news that the price of a Lotto ticket is to increase to £2 is followed by the news that the percentage going to good causes will be lower. It drops from 33% to 31%.

We have to assume that the main motive for most people buying a ticket is the hope that they will win zillions and live on a yacht. However, a lot of people will be miffed to think that less of their losings will go to help a charity or community project somewhere.

With this in mind, I thought I’d tell you about the BRACE lottery. We have a 500 Club, regulated by the licensing authority local to our head office, which happens to be South Gloucestershire Council. It costs just £1 a week to take part and the winner gets 25% of the takings.

I think this compares rather well with Lotto and other commercial lotteries. It costs less to enter and 75% of income ends up in funds for dementia research. The other 25% goes to the winner, who is someone who has chosen to support our charity in this way.

We currently have about 240 participants, so we are roughly half way to the maximum allowed within the rules. The winner in any week therefore receives a cheque for about £60. This is a tad lower than the telephone number sums you might dream about when you buy a Lotto ticket, but it won’t ruin your life if you win. You also have a much higher chance of winning than the millions to one odds that face Lotto customers.

Of course, if you join the 500 Club, you marginally increase the odds against any one person winning and you add 25 pence to the jackpot each week.

Above all, whatever the outcome, you will know that your main motive is to help beat dementia and that 75 pence of your pound has gone straight into that fight. Even when you don’t win, you win.

Interested? All you need do is visit our 500 Club page, download the form, complete it and send it to us.

Who won the lottery? Who tipped the fight against dementia?

It might be you.

Old age, but not as we know it

It was good to read about the dementia debate in Parliament last week, called by the former Health Minister Paul Burstow MP.

Although there will be differences of emphasis and sometimes policy between the parties, I take heart from the evidence that all three main parties recognise that “doing something about dementia” is a priority. Dementia is past being the darkness that dare not speak its name, and past being the clichéd elephant in the room. It is now being talked about in many forums, including Parliament, and there are people like Mr Burstow who are prepared to make others return to the subject time and again.

The debate was closely followed by the Government’s announcement this week of reforms to the state pension. Their close proximity was coincidental, but they have a common cause. Because we are generally living longer, old age needs to be reinterpreted and planned in a new way.

When 65 was first set as the retirement date for men (60 for women), the numbers of people living deep into retirement would have been relatively low. Changes to pensions policy have been inevitable for some time because we now expect to live to 80 or more, and that is expected to increase.

This is the same increase in life expectancy that means that there are far more people in the age groups that are at high risk of dementia. There are therefore far more people with dementia.

Just as we can’t expect pensions provision from another era to work in the 21^st century, neither can we expect the NHS, social services and everyone else to cope with the rising number of dementia patients on the basis of out of date thinking and statistics. For example, with more dementia sufferers overall, there are inevitably greater numbers of them in our hospitals, admitted for reasons other than dementia.

While dementia has always caused suffering to individual patients and those close to them, rising numbers make it a problem that society is struggling to manage. It seems callous to reduce suffering to numbers, but these numbers matter. One new case every seven seconds is a lot of people, as is 36 million current cases worldwide. £23 billion cost to the UK every year is a huge blow to our public services.

We should not hesitate to provide the best possible care for everyone with dementia, treating them as every bit as important as other patients and dependent people. However, part of the purpose of dementia research is to reduce the numbers, with and without currency signs, so that fewer individuals suffer and our public services can cope more easily.

This is a changing world and woe betide us if we don’t prepare for it, even at this late stage.

Alzheimer's is like England

People often ask us “what’s the difference between Alzheimer’s and dementia?” I’ve started telling them that Alzheimer’s is rather like England.

England isn’t the United Kingdom. It happens to be a little more than half the UK’s land area and has easily the majority of the population. However, it isn’t the UK and it isn’t even the whole of the island of Great Britain, just most of both. It is strange then that England and the UK are sometimes referred to as if they were synonymous, to the justifiable irritation of the Welsh, Scots and Northern Irish.

The same thing has happened to Alzheimer’s disease (AD for short) and dementia. AD probably accounts for about 60% of cases of dementia, though the picture is blurred a little by mixed dementia and difficulty in achieving an exact diagnosis. It is most cases, but not all cases, of dementia. At some point, don’t ask me when, people started to refer to dementia as Alzheimer’s, as if there were no other kind. This can sometimes be annoying or even distressing to people whose lives have been torn apart by vascular dementia, Lewy body dementia or dementia with another cause.

A charity like BRACE can’t turn an international tide, so we have gone with the flow. When BRACE was named in 1987, the acronym took in the letter A for “Alzheimer’s”, not D for “dementia”. When we revised our strapline in 2009, we made a conscious decision to keep the reference to Alzheimer’s because the term seems to be more widely understood than dementia. The two big national dementia charities in the UK both have the word “Alzheimer’s” in their name and the same pattern seems to be followed in many other parts of the world.

No charity involved in this work can risk not being noticed by using a different language. If we are going to be effective in increasing understanding of dementia, however, we need to make people aware that the causes of dementia are legion and that not every type manifests the same symptoms.

As I am always at pains to point out, BRACE is constituted to fund research into any kind of dementia and currently supports research into four types. These four types or causes of dementia probably account for about 90% of all dementia.

New Year and resolution

Another New Year and millions of people are making resolutions. Of course, the start of a new year is simply a date change, a reminder that the earth has completed another orbit of the sun. In our case, it also happens to be the end of our accounting period, so we draw a line under our figures, compare them with previous solar orbits and ask ourselves whether we are improving.

As 2012 was in many ways a very successful year, it would be tempting to rest on our laurels (not that resting on laurels sounds especially comfortable). Given the scale of the task ahead of us, though, what a mistake that would be.

Dementia is a huge and growing problem – I can use the phrase “global crisis” without being alarmist. Despite the very welcome extra funds scraped from a diminished public purse by HM Government, research in the UK and abroad depends heavily on charities. To be blunt, there aren’t many charities – in the UK, at least – which exist for this purpose. We’re not the biggest by any means, but we play a vital role that bigger research charities and, for that matter, governments cannot.

All of which is not reiterated to make you glum, but to make a point about the sort of resolution we need at the start of another year. Not a short term promise to cut calories or behave better but the “condition or quality of being resolute; firmness or determination”. When 2014 arrives, we shall look back at 2013 and say we need to do more again… and again and again.

Beating dementia isn’t going to be a quick overnight victory as someone somewhere rushes into the street from the bath (or, more probably, lab) screaming “eureka”. Neither is it going to be done on the cheap or entirely because of one charity grant or one government announcement. Being resolved to carry on the fight, year on year, is what matters. Those who come after us will thank us, just as we thank those who started and kept going when there was little obvious cause for hope, and who advanced medical knowledge to where we are today.

So, BRACE’s New Year resolution? Yes, we have lots of it!