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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.