New research and a very long swim

The two most recent news stories posted on our website show something of the variety of our work, what we (and others) do to raise and money and what we spend it on.

On the one hand, there is the announcement of a £178,000 grant to Dr Vasanta Subramanian at the University of Bath. This is actually the fourth grant we have awarded to Bath this year, supporting varied and vital research.

Vasanta’s research uses the latest knowledge in stem cell research to replicate brain cells and track the effect on them of fronto-temporal dementia. These are adult stem cells, developed from skin samples.

The project also represents an extension of BRACE-funded research into a different form of dementia. Other research already funded by the charity focuses on Alzheimer’s disease, Lewy body dementia and vascular dementia.

This follows the previous day’s news story about Bryony Wood. Her great grandmother has dementia, so the cause is very personal to Bryony and her family. She is a pupil at Bradley Stoke Community School and decided to help the school’s fundraising for BRACE by swimming three miles.

That’s a very long swim, especially for those of us who feel a sense of achievement if we make it to the other end of the pool. Bryony managed no fewer than 216 lengths, despite being disrupted by some other swimmers.

I applaud Bryony for her commitment and sheer endeavour. She can be sure her part in the fight against dementia will count, because it’s the swimming, the running, the cake-making, tin-shaking and all the other fundraising that makes the work of people like Vasanta possible.

What's in a name?

People often ask me what BRACE stands for. The answer always involves a brief history lesson and a realisation of just how far we have come in the last quarter of a century.

When the charity was founded 25 years ago, the founders decided to call it Bristol Research into Alzheimer’s and Care of the Elderly. This would have been a bit of a mouthful, so they wisely decided that it would be simpler to say “BRACE” for short.

A lot of charities and other organisations have acronyms and they have their uses. They also have their drawbacks, and growing out of them is one such example.

That’s a positive, of course. In the time we’ve been operating, we have come a long way and can no longer be defined just by our roots.

Bristol – yes, that’s where it all started, but we are now a regional charity. Our HQ is in South Gloucestershire and we are working with supporters around the West Country, from Devon to Wiltshire. We are also gathering supporters from elsewhere in the UK, from Liverpool to Brighton. We even had a sponsored runner in Australia this year, albeit one who hails originally from this region.

After all, the cause we are part of is global.

Research – no argument here. We only fund research. “Alzheimer’s”, however, has to be treated as synonymous with dementia, which is becoming the norm nowadays. Other dementia charities also tend to say “Alzheimer’s” when they actually deal with other forms of dementia as well. We currently support research into Lewy body dementia, vascular dementia and fronto-temporal dementia as well as Alzheimer’s disease.

The “Care of the Elderly” bit is mystifying unless you know the history. BRACE was originally formed to fund research in the Department of the Care of the Elderly at Bristol University. That department disappeared several years ago, but Bristol University has a formidable dementia research programme and is still the single biggest recipient of BRACE support.

However, the last five years have seen a significant expansion of research into the Universities of Bath, Cardiff and the West of England (UWE). The charity’s policy is to fund research only in the West Country and Cardiff, which is what gives BRACE its distinctive regional identity and has enabled it to help build up a strong research network in this area.

So there you have it, the full story behind our evolving name. BRACE, the dementia research charity – simple. Now go and tell your friends all about us!

Next year the past

Like many charities, we sell a range of goods to help raise funds. Perhaps the most appropriate for a dementia charity is our “More Memories of Bristol” calendar 2013.

The title reflects the fact that we had a Memories of Bristol calendar in 2011, using thirteen previously unpublished photos of Bristol from about 1950 onwards. They were all the work of local photographer Geoff Packer, whose family kindly made them available to BRACE to help raise funds. We are very grateful to the Packer family for giving us the opportunity to use a further thirteen photos from Geoff’s collection for a 2013 calendar.

I think this calendar has a better selection of photos than the 2011 version. Most of the pictures date from the 1950s, but it’s a bit of a shock for me to realise that I’m old enough to identify with at least one picture of Bristol’s past. It is dated 1973, and I remember running across that zebra crossing after school to catch the number 87 or 88 at that bus stop. Some of the photos include strange details, such as cars parked in places where they would now cause a major incident, or buildings now hidden behind later construction which were then in plain view.

It’s a little gem for anyone who has any memories of the city from the 1950s or the early 1970s.

Redcliff Hill 1956 (October's photo)

The reason it seems appropriate is that dementia is very much about memory. Not just about memory, of course, but the loss of it is perhaps the cruellest part of the disease. The world we see in the photos is the world that older Bristolians with dementia once knew, remembered long and then started to lose piece by piece. In cases where the patient is struggling to make new memories rather than remember the distant past, this might be the city they still see in their mind’s eye. Whatever the reality in any individual case, the symbolism is poignant.

We couldn’t risk having unsold stock at the end of 2012, because few things date faster than a calendar after 31^st December. We therefore only printed 600. They are selling rapidly, but there are still some left. If you are interested, more information is available on our website shop page.

A glimpse of what we do

This was the week BRACE finally arrived on YouTube. We uploaded some films taken by volunteer filmmaker James Murray-White at the public meeting we held in Frome last month.

A meeting is not the most visual of activities, but James did a great job filming the event and then editing the films and slotting in slides from the presentations. We had well over 70 people in the room, and they heard some very interesting speakers. All the details are here, including a link to the films.

This highlights one of BRACE’s great strengths. One of the things that make us different – compared to national charities – is that, while you won’t find us on BBC breakfast television, you might well find us in your local community building. In this case we were in Rook Lane Arts Centre in Frome. The following evening we held a very similar meeting in The Guildhall, Salisbury. We send speakers, including me, to schools, Rotary Clubs, the WI, church groups and others who invite us.

This makes us stand out as a charity which can engage the public in a very different way. Staff, Trustees and volunteers from BRACE attend dozens of meetings of this sort every year and arrange gatherings like the one in Frome. And as the films show, we are quite often able to bring the public into contact with the researchers themselves.

YouTube makes globally available what was truly local. You might say that the same is true of everything we do – global benefit from all the hard work done in a rather more limited geographical area.

Make us your charity

One of the forms of help we most need is “adoption” as charity of the year or a special event.

The group adopting us might be a business, school, college, faith group, social club, sports club or whatever, but the essential facts are the same. The group raises money by doing things that it enjoys doing and gives it to BRACE. We gain extra funds to put towards research and the overheads are negligible. The people who do the fundraising have a good time and know that they have made a difference to a cause they care about. For a business and for most other groups, the benefits of being seen to help others are considerable.



Fishponds surgery staff, who have raised £'00s this year



We’ve seen a big increase this year in the number of groups raising funds for us in this way. Our Silver Service campaign has been especially effective, with IOP Publishing and East Clevedon Churches topping the list of fundraisers so far.



We are looking for new supporters for 2013. Good news came yesterday from a golf club which has made us its charity. Could your place of work, study, leisure or worship support BRACE for a while and help us beat dementia?

At least we're talking about it

Today’s Daily Mail contains the rather depressing news that a third of us are still scared of talking to someone with dementia. The article then takes a more positive turn by including some basic advice about how we should to talk to people with the condition.

On the face of it, it might appear that we haven’t moved very far in our attitude. However, this is clearly not the case. Dementia has been moving into the light, slowly and painfully, for a very long time. It’s no longer a case that “granddad’s gone a bit funny” – no, granddad has dementia. There’s a much greater level of awareness that dementia is a disease, not something as inevitable in old age as wrinkles.

That doesn’t make life any easier for people who are neglected or isolated right now because they have dementia, however. Tackling this problem isn’t one for the scientists that BRACE supports. The problem lies not in the pathology of dementia but within us. How do we overcome our fear?

We first need to recognise that we are afraid. Dementia is reportedly the medical condition that frightens most people. Perhaps this is because it’s currently incurable. Perhaps it’s because it attacks what it means to be human – identity, relationship, a sense of having and being part of a story. Dementia appears to us to be a long and increasingly dark tunnel that leads inexorably to death. We fear to approach it.

And yet, as the Daily Mail article reminds us, sufferers can have a reasonable quality of life. It’s up to the rest of us to understand that and make sure that we are part of the good things in their world, not contributors to a growing isolation.

At least we are talking about dementia as never before. Giving it a name – or a range of names – has helped enormously to make that possible. There is an ancient belief - found, for example, in the Bible – that naming something gives us power over it. This is true of things that we fear, and scientists like Alois Alzheimer have helped us all.

The more we learn and the more we talk about dementia, the better we shall be able to deal with it.

Thirteen times thirteen

Sunday was Half Marathon day in Bristol. Twelve people ran for BRACE and we then discovered that another runner had run to raise money for us but didn’t tell us until afterwards! A welcome surprise on a Monday morning.

The thirteen each ran about 13 miles (a half marathon is 13.1094 miles, I am reliably informed) and that’s a fair distance to run if you’re not used to this sort of thing. Many of the people who undertake this sort of thing for us are attempting a long distance run for the first time, and there were certainly first timers among this year’s runners.

We are supported by a real mix of people, too. A wide range of ages, both genders, all sorts of jobs and none.

We heartily thank all of them for their exertions and their fundraising efforts. Thanks also to Demi, Louise and Reuben for sending us photos and stories.

Demi is a researcher funded by BRACE, working on the role of dopamine in memory. Originally from Canada, she now finds herself pounding the streets of Bristol with her friend Ruth to raise money for new research.

Louise, a café manager, also ran with a friend – Abi – and they raised money to be split between three charities, including BRACE. Their total looks set to pass £2,000. What a great effort.

Reuben was really enthusiastic afterwards. He emailed to say, “I feel great. The run was fantastic! Loads of people lined the streets and cheered. I saw quite a few BRACE runners! It was a fantastic experience so many people running for all kinds of reasons.”

A few words in a blog are scant thanks for all the work these and other runners put in. I hope their real thanks is the knowledge that they have made a difference in the long, slow slog that is the fight against dementia.

If you want to sponsor any of the runners retrospectively and can't find their fundraising page, you can donate via the BRACE website and leave a note of the runner's name.