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.