‘When somebody slowly ceases to be the person you know, that is really crushing’

Walking through Leeds University’s sprawling city centre campus on a glorious afternoon, it’s hard not to envy the throng of students laughing and joking as they take a break from their studies and bask in the unseasonally warm sunshine.

But while they’re enjoying these precious carefree years, half a century from now they might have cause to be grateful for the work being carried out deep in the bowels of the university’s Garstang building. For it’s here that a small group of dedicated scientists are studying the way Alzheimer’s and dementia develops and how we can most effectively tackle this dreadful disease.

The annual cost of dementia to UK society is around £23bn – a figure that is likely to rise in th e next few years for the simple fact that we are living longer and the longer people live, the more likely they are to develop the illness. Dementia is believed to affect 670,000 people in the UK, including more than 64,000 in Yorkshire, although 400,000 haven’t been diagnosed and don’t know they have the condition.

It’s a huge issue and one that has been back in the headlines this week, with David Cameron announcing that funding for research into dementia is to be more than doubled to £66m by 2015, in a bid to make the UK a world leader in the field.

The Prime Minister’s announcement came as the Alzheimer’s Society launched a new report, Dementia 2012: A National Challenge, which looked at the quality of dementia care across England, Wales and Northern Ireland. It showed that quality of life for people with dementia remains extremely varied, with most people waiting over a year for diagnosis and struggling to access quality care.

Professor Chris Peers, a dementia researcher at Leeds University and co-ordinator for Alzheimer’s Research UK’s Yorkshire Network, says funding for research into dementia has been poor up to now.

“Alzheimer’s research and dementia research in general compared to other major diseases has been grossly underfunded,” he says. “When you look at cancer and stroke and heart disease, the combined national cost of all three of those is less than the cost of dementia, so the Government’s announcement is very welcome. It’s not going to make up the gap entirely but it is a step in the right direction.”

Dr John Boyle, a senior lecturer at the university and part of the Alzheimer’s research team, believes one of the reasons it has been underfunded is down to people’s perceptions.

“As a society we haven’t got a good track record in looking after our elderly, whereas with cancer if you see a child with leukaemia everyone sheds a tear and puts their hand in their pocket.”

Yorkshire is an important research centre linked to the National Alzheimer’s Research UK network, with the team in Leeds primarily conducting lab research looking at molecular and cellular processes in Alzheimer’s disease. Prof Peers and Dr Boyle are part of a core team of five or six people based at the university who liaise with fellow researchers working on various projects both in Yorkshire and across the country.

The university has been involved in dementia research for the past 13 years and the team, whose work is part-funded by Alzheimer’s Research UK and the Research Medical Council, are hopeful that some of the future funding announced this week will come their way, because the more PhD researchers they have the more work they can plough through.

They have already achieved a great deal having studied the affects of low oxygen in the blood stream after it was found that those who suffer strokes are more at risk of developing dementia. They have also looked at the different genetic variations that occur in people that gives them the disease earlier, while last year the team at Leeds helped uncover an enzyme clue to the disease which it is hoped could be used to help clinical trials for new treatments.

There’s a sign on one of the doors which says “this laboratory is defeating dementia” that serves as a pointed reminder of the important work being carried out here. The problem is that research into diseases involving the brain is painstaking work.

“It’s been surprisingly slow because it’s more complex than we originally understood,” says Prof Peers, “therefore there isn’t going to be one single wonder drug that will come along and get rid of all the problems.”

Dr Boyle agrees. “In the end it’s probably going to be something tailored to an individual because it’s such an individual disease. I think that was the problem initially, there was a belief [among scientists] that they could identify certain things happening in all people but this disease doesn’t affect all people in the same way or at the same speed.

“In the past there have been a lot of big clinic trials set up and they haven’t been very successful and that’s largely because we didn’t know enough about the disease, but we are beginning to get to the point where we know enough that we can target certain things better than we have done.”

Given all this how far away are we from if not finding a cure, then at least slowing the progress of dementia?

“There have been a couple of false dawns, but if we are going to make a real dent then we have to detect it early, because by the time you’re seeing signs of the disease even if you manage to slow it down, people aren’t going to get better because they don’t remake the neurons they’ve lost,” says Dr Boyle.

Although this is one of the potentially achievable goals that scientists are working towards in the long term.

“It’s a credible aspiration to replace dead tissue and we’re doing it in part already,” says Prof Peers. “But the major thing to focus on at the moment is early diagnosis because that’s absolutely critical and we’re not good enough at it yet. We need to start trying to nip it in the bud, that’s the ultimate aim.”

But with nearly two million more people aged 65 and over living in the UK compared with 25 years ago the problem is threatening to get worse. “Dementia is growing and with an ageing population it’s going to grow faster and take up more and more NHS funding, so it’s really important that something can be done to slow it down,” says Prof Peers.

“Even if you’re hard nosed and just see this in terms of money, the annual cost of dementia is around £23bn which has gone up enormously in the last five years. If you get Alzheimer’s disease you could have it for 20 years and during that time you become more and more dependent on care. A lot of the real financial cost is borne by families, people give up work and spend their lives looking after older relatives but they can’t turn round and charge that to the government or the council.”

The chances of developing some kind of dementia once you reach a certain age are shockingly high.

“The longer that we live, and we are all living longer, then the chances of us getting it are exponential, so by the time people get to their late 80s the risk is 50-50,” says Prof Peers.

Dementia robs people of their lives and is heart-wrenching for those who have to watch the person they love slowly disappear. “Whereas with some diseases you can see people courageously battling through, people don’t courageously battle through Alzheimer’s, you’ll never have a Jane Tomlinson with Alzheimer’s,” says Dr Boyle. “Somebody dying you can probably deal with, but somebody over a period of time ceasing to be the person you know and who doesn’t even recognise you, that is really crushing.”

It’s a frightening prospect but he says our lifestyle choices can make a difference. “Everything that’s a risk for cardiovascular disease and cancer are also risk factors for Alzheimer’s disease and dementia. So the message is don’t smoke, be careful what you eat, take exercise and keep mentally healthy because these things do make a difference and they do slow the progression.”

There is growing public awareness about dementia thanks to the campaigning of high-profile people like Sir Terry Pratchett, who was diagnosed with a rare form of early-onset Alzheimer’s disease in 2007, and although progress is slow the day when people can face dementia without utter dread is surely getting closer. “I’m optimistic that we’ll be able to make big inroads in the future. Whether or not it’s curable I don’t know, but even offsetting it by five years would make a massive difference,” says Prof Peers.

So in 50 years time when today’s students are pensioners, where might we hope to be? “If we haven’t got an answer then we will have found ways, like stem cell therapy, of making a big difference in the battle against this disease.”

Fight against dementia

Retired architect Fred Mynot from North Yorkshire has taken a positive approach since being diagnosed with Vascular dementia in 2006.

“I decided early on after my diagnosis that I wasn’t going to let the dementia get me down and that the best thing to do was carry on with my life and all the things that I have always enjoyed doing.

“I volunteer at a local museum doing painting, decorating and woodwork and I really think keeping active helps keep you going. My wife Mary and I attend some Alzheimer’s Society activities and not everyone has such a positive approach as I do, so I try to support others I meet at the groups.

“It’s all part of keeping active, carrying on and enjoying life for as long as you can.”