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.