A blog you really should read

We held a public meeting in Frome last night to help foment discussion about dementia care and research. We have a similar meeting arranged for this evening in Salisbury.

It really was great to see so many people there. We were hastily raiding the chair store five minutes before the start, because it was obvious that we had underestimated the turnout. A couple of BRACE-supported scientists gave excellent presentations and there was a presentation about care home design from the CEO of Gracewell Healthcare.

The other contributor was Beth Britton, a blogger from Oxfordshire, who will be with us again in Salisbury. We have been in contact with Beth for months and it was a pleasure to meet her at last. I think everyone at the meeting admired her bravery in standing up to talk about the still recent loss of her father to vascular dementia and the 19 years that she and her family spent caring for him as the illness took its inexorable toll.

Beth’s passion for the cause is beyond doubt. She is well placed to articulate the way many families feel, including anger at the poor standards of care to which patients are so often subjected. The response she received from members of the audience showed that her words had resonated with others facing similar challenges.

Beth writes a great campaigning blog called D4Dementia and I recommend it to anyone who feels strongly about dementia.

Surrounded by boxes

The state of my office at the moment reflects how much is going on at BRACE. It gives a hint at the many ways people can help us in the fight against dementia.

I have boxes of items to be taken to the meetings we are holding in Frome and Salisbury next week, and a third for an all-day event next Friday where we are the supported charity.

There are then more boxes, this time containing our 2013 calendar, one of which I have to take to St Mary Redcliffe Church in the morning.

Clogging up a bit more of the room is some computer hardware that we were kindly donated by Bristol University. We’ve started to replace our ageing computers and the university has helped us with the first two. We are on the lookout for more.

Just before I typed this, I posted a link on our website telling people how they could help us by sending mobile phones or printer cartridges for recycling.

Then a colleague came in with a query about the registration deadline for the Bristol Half Marathon on Sunday fortnight. (It’s still worth contacting us over the next 48 hours if you want to run – we have a couple of Gold Bond places left.)

There’s a lot more than this going on, of course, but the last few minutes and the temporary congestion in my office just shows how easily you can help us. Come to a meeting, ask your employer to support us at an event, buy a calendar, run for sponsorship or just donate your old mobile. For even more ways, have a look at our website. If you want to help, we can make it possible.

Are we nearly there yet?

It’s funny what makes connections sometimes.

As I was driving home yesterday, I had to stop in a narrow road while a harassed mother shepherded her very young children into the front and back seats of her car. She came over and apologised but I told her not to worry – I’m a parent too.

For some reason I then remembered driving to France for our holiday nine years ago. We had travelled a whole four miles when a three year old voice piped up from the back seat, “Are we nearly there yet?”

Which in turn made me think of dementia research (“Eh?” I hear you say). Most of us are in the position of small kids in the back seat, knowing that we started moving what seems an age ago, but we don’t know how close we are to arriving.

The difference between this journey and our drive to France is that we knew how many miles we had to go and, traffic jams and ferry cancellations aside, had a pretty good idea how long it would take.

No one can tell us how long this journey will take, but the scientists – the navigators – are giving us some clues. Research hasn’t been driving in circles for decades; it really has started to get somewhere. We know far more about the causes and are developing new ways to diagnose dementia earlier. There are some limited treatments available now that weren’t available when BRACE was founded.

And when a respected scientist goes on public record to say that he believes we will have treatments that will slow or even stop Alzheimer’s in ten years or so, I take him seriously.

Those who started this journey had less reason than we have today for confidence that we will reach our destination. Because they took the risk of failure, we now have far more reason to be hopeful, even if precise details of arrival time and exact location remain elusive. Whether or not we are nearly there, we’re on our way.

It’s all happening… next month

September is World Alzheimer’s Month. This peaks on 21 September in the form of World Alzheimer’s Day. And, as if we won’t have had enough by then, BRACE will be 25 years old three days later, the anniversary of the charity’s registration back in 1987.

BRACE is having a celebration on the eve of its own silver anniversary, with a sparkling reception and musical entertainment at the Tobacco Factory in Bristol.

However, our priority is to get over the message that the fight against dementia is one that can and must be won. The two key events in this effort are “Question Time” style discussions to be held in Frome (19 September) and then Salisbury (20 September).

We shall be supported in this by three researchers whose work we help to fund, Dr Andrea Tales, Dr Rob Williams and Dr Myra Conway. We are also indebted to Beth Britton, whose passionate blog on the subject of dementia makes for compelling reading. The panel is completed by Gracewell Homes, who can speak with experience about providing care for people with dementia.

If you happen to live near Frome or Salisbury and are interested in coming along, please send me an email.

Give us your memories!

We have a special memories page on our website. It’s still quite new and, because we haven’t done much to publicise it yet, little used.

Its purpose is to invite people to record the memory they would least like to lose to dementia. All contributions are recorded anonymously, using just the contributor’s initials. All contributions are moderated to make sure they don’t include anything they shouldn’t, so they will remain free of spam, for example. They are short – maximum 200 characters.

We hope to build up some activity on this page as we approach World Alzheimer’s Month, an event which happily coincides with BRACE’s silver anniversary.

Why not contribute a memory of your own? You will be helping remind others what we are fighting for. Thank you.

I've a feeling we're not in Kansas any more

You might well be nonplussed by the familiar quotation from The Wizard of Oz. After all, BRACE is a regional charity in the English West Country and has never operated in Kansas.

Imagine my surprise, therefore, when I found that the automatic Google Maps link for our annual Autumn Fair was directing supporters to a field north west of Coffeyville, Kansas. How it managed to interpret “Newman Hall, Westbury-on-Trym” as meaning a rural corner of the American Midwest, I have no idea. The problem has been fixed, though it was always unlikely that anyone was going to turn up on a Kansas farm looking for our fair.

It made me reflect again on what being a local or regional charity actually means. Many charities that describe themselves in such terms spend money on local community projects and are in every sense local. BRACE is firmly regional in that it spends all its research funds within the Universities of Bristol, Bath, Cardiff and the West of England. In so doing, it has maximised its influence and helped to build up an internationally respected network of research scientists fighting dementia.

However, when it comes to raising funds, we increasingly attract support from much further afield. There’s even someone running for us in an Australian marathon this month. That’s the beauty of the Internet.

As for our “area of benefit”, it really couldn’t be more global. The people of Coffeyville will one day benefit as much as the people of Westbury-on-Trym from the work that BRACE-funded scientists are doing. We just can’t provide a cake stall and raffle for them in October, which is why it’s as well that Google Maps doesn’t have us in Kansas any more.

Phil's feat of endurance

I’ve written before about the remarkable things that some people do to raise money for us. Take Phil Semple, for example.

We could scarcely believe it when we heard how far Phil had run – 120km! That’s 75 miles, and all in twenty four hours.

Phil works for IOP Publishing, who have adopted BRACE as their charity of the year and are setting the pace when it comes to fundraising. He entered the Endure 24 race last weekend and dedicated his fundraising to BRACE.

Phil said of the run, “In my mind the Endure 24 race would be relatively straightforward, run a 5 mile lap, rest a few hours, run again, rest etc. In reality it was quite brutal, the rests weren’t as long as I’d hoped for, the course was very tough woodland trail, and my legs keep stiffening up after each lap.

“The race itself consisted of 10km laps (6.25 miles) through an undulating mixture of grass and woodland terrain, unlike the usual flat and smooth road surfaces that I am used to. The first lap was over quickly and as usual I was caught by the false sense of thinking that I was going to feel this fresh all night. Having completed a second lap I quickly realised that after 12.5 miles, my joints were showing the first signs of fatigue and that I was going to have to plan some kind of alternating walking/running strategy. Leading up to the end of my 8^th lap and 50^th mile at around midnight my blood sugar had gone down rapidly (as had the temperature) which triggered the usual dizziness and shaking so I was lucky to find someone with some spare energy gels which enabled me to finish the lap and get some much needed rest and food.”

Despite soreness, aches, cramp and blisters, Phil kept going. Falling over roots did not help, but he was able to take some refreshments during his short breaks. He even borrowed a walking stick to help him through the final few miles and an emotional crossing of the finishing line.

Well done, Phil. A remarkable achievement. I feel I ought to add a warning about not trying this at home, because not everyone’s body could stand the strain. If 75 mile runs aren’t for you, there are plenty of less arduous things that you could do to help us fight dementia.