A good year

2012 might not be over yet but I can already say with certainty that it has been a good year for BRACE.

With the charity sector shivering in the cold winds that are blowing through the world’s economy, most charities are pleased not to be among those that have to report falling income and cutbacks. BRACE has managed an increase in both donations and income from fundraising activities.

This has come at a time when the demand for research funding seems to be increasing. It’s encouraging that the field of dementia research is more crowded than it once was and that new proposals are coming forward all the time. However, this is only a good thing if new ideas can be matched with new funding. During 2012, our Trustees have committed almost £800,000 more to research initiatives. There is no doubt that we shall be asked for a lot more in 2013 and beyond as the search for dementia treatment becomes ever more urgent.

This is not easily achieved in an economic downturn, and we are working harder, longer and more imaginatively to carve out these successes. We are indebted, as always, to the various volunteers and sponsored runners or riders who do so much, but we are increasingly helped by businesses and community groups who raise funds for us.



Fundraising for BRACE. Fishponds GPs raised £'00s and gave us our favourite photo of 2012

The single best way you could help us in 2013 or beyond would be to ask your employer, school, faith group, club etc. to think about BRACE as its next adopted charity.

Oh, and while I think of it, we’re on the ballot for a donation from a company in London. If you read this before New Year, there should still be time to vote for us. All you need to do is go to the web page and click next to our name. Thank you!

By any other name

I am a follower of Beth Britton’s excellent blog, D4Dementia and was struck by the issues she raised in her post of 21 November.

This concerned moves by the American Psychiatric Association to rename dementia “major or minor neurocognitive disorder”, or NCD for short. I won’t repeat great chunks of Beth’s eloquent article, which you can still read in full by clicking on the link above (but please come back here when you’ve finished!).

Things are sometimes renamed as a way of sanitising their reputation, such as when Windscale became Sellafield. No one was fooled; it was still a nuclear power plant with the dubious distinction of the worst nuclear accident on record until Three Mile Island happened.

However, no one is trying to “sell” dementia or convince us that it’s not dangerous. The motive appears to be sensitivity about stigmatising sufferers. If so, it’s a worthy motive, but one that might be unhelpful outside specialist academic and clinical circles.

It’s worth reminding ourselves what “stigma” actually means. It comes from a Greek word to do with marking or branding, and stigmatising usually means marking someone for disgrace or disapproval. That is clearly not something we want to happen to people with dementia, though we recognise that it always has.

In Catholic spirituality, however, having the stigmata – the wounds of the crucified Jesus – is a mark of honour and often sainthood.

In other words, it is up to us how we look at someone who is marked. If someone carries the mark of dementia, what emotions and actions does it prompt in us? Fear, denial and a tendency to shun and put out of sight? Or, as Beth says, could it prompt “care, compassion, kindness, understanding, fairness and opportunity”?

Calling dementia NCD won’t take away its cruelty. The word “dementia”, which comes from a Latin root and has to do with losing one’s mind, reflects the pain of the experience of dementia. Changing to the rather more aloof NCD won’t make the experience any less cruel for either the patient or those close to them.

There’s another issue. Organisations like the one I manage have been trying to raise awareness of dementia for decades. I worry that a change of name will mean a lot of work and missed opportunity as we try to make people aware that NCD is the same as dementia and that Alzheimer’s is still the main cause.

Which brings me to my final point. There has been an entirely unplanned drift towards treating dementia and Alzheimer’s as synonymous. They are not, of course. Dementia describes a group of symptoms that can be caused by one or more of a range of diseases, more often than not Alzheimer’s disease. This common usage has been picked up by many organisations, including the biggest dementia charities in the UK and, of course, BRACE. This is because we have to communicate with people by using the words that they use.

You will see BRACE collectors wearing sashes with the word “Alzheimer’s” in large red letters. People give to our collections because they identify with this. Some, who have had experience of a different cause of dementia in someone close to them will come over and ask “do you do research into vascular dementia?” (or another form), to which we can reply “yes”. Our strapline says “funding research into Alzheimer’s”, but we also fund current research into vascular dementia, fronto-temporal dementia and dementia with Lewy bodies. This could be extended into other causes of dementia.

Don’t expect to see our collectors wearing sashes with “NCD” emblazoned on them. We don’t plan to baffle the public.

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?