The Disconnected Mind Project: will it help push back Alzheimer’s tide?

Holding cups of tea and making polite conversation as they look around for familiar faces, the people gathered in a hall in Edinburgh last week could have been at any old school reunion.

But the 700-strong group of men and women, now all aged 70 or 71, did not attend the same school. But they do have a shared experience from childhood, and it is one that is exciting scientists across the world.

Exactly 60 years ago, then aged 11, they sat down to complete an IQ test, along with 70,805 others – every child in Scotland born in 1936.

Many cannot remember taking it, but researchers believe the results, which had been left untouched for decades, could now help unlock what causes cognitive decline, that can in turn lead to Alzheimer’s disease and some forms of dementia.

The group have all recently retaken the test after being traced by a team of scientists who discovered their original results in a Edinburgh basement. They are now working to compare the results in a bid to further our understanding of how the brain ages.

The original tests, called the Mental Health Survey, were an extraordinarily ambitious project organised by the Scottish Council for Research in Education (SCRE) to assess the mental health of the nation. It is thought to have been the biggest of its kind in the world and the results were compiled in ledgers and published in several languages. But as policy moved on, the survey fell off the radar, apparently forgotten.

Things might have stayed that way, but for two Scottish scientists and a bit of luck. In 1997, Ian Deary, an expert in cognitive ageing at the University of Edinburgh, and Lawrence Whalley, professor of mental health at the University of Aberdeen, found a reference to the survey in an academic journal and discovered to their excitement that not only SCRE but the survey itself still existed, gathering dust in one of the office’s vaults.

Deary was immediately struck by the potential enormity of the finding. “We knew straight away that the data would be uniquely useful,” he says.

Advertisements were placed asking anyone born in 1936 to take part, while the Lothian health board wrote to a selection of the original participants.

Many have now retired, but a few remain in work – one is the actor Richard Wilson, who has helped the project gain publicity by backing it. In all, 1,091 people were eventually traced and agreed to re-sit the test.

The project – called The Disconnected Mind – is being funded by Help the Aged, which needs to raise £13.5m to ensure it can run until 2015. Tests began 18 months ago and have only just been completed. The team – led by Deary – is now compiling findings on the role diet, exercise, lifestyle and genetics have on our mental abilities as we age.

Results are expected to be published by the end of the year. But indications from a preliminary study showed the IQ level of participants who had smoked for the majority of their adult life had dropped by 2% or 3%. Mental ability was also affected by participants’ level of physical exercise, with less activity linked to intellectual decline. Having a more stimulating career is also thought to have had an effect.

With half of the over-85s in the UK suffering from cognitive impairment, and with Alzheimer’s disease, vascular dementia and related disorders the most common reason for people requiring 24-hour care, Deary stresses the importance of providing scientific evidence base for preventive strategies. “This is important. If people don’t retain their capability, they lose their independence,” he says.

The recent meeting of the group was in order to mark the 60th anniversary of their test and took place at Edinburgh’s Assembly Hall. Most participants appeared in good health. But the disparities in the way that we age were clear as some bounded up the steep steps of the imposing building and others leant upon each other or used walking sticks.

Looking around the room, Georgena Campbell, nee Brews, 71, a former personal assistant, spoke for many when she explained that she took part because of a personal interest in her own IQ score and a strong desire to help further our understanding of impairment and dementia.

“Alzheimer’s is a dreadful disease and if I can do anything I can to help stop it then I am there,” she says. “It is amazing to see all these people exactly the same age as I am, and some people seem to have aged very well, some have aged well and some haven’t aged very well at all. I think it is so important to try and understand why that is.”

For her part, Campbell, who scored 58 out of 76 in her 1947 test and 74 out of 76 this time round put her agility down to a healthy diet and keeping her mind active. “I read 200 books a year, write, do the crosswords and only ever make fresh food, nothing pre-prepared.”

As the group ages, the team expect that the real work is only just beginning, and are already preparing new tests to monitor changes to their cognitive functions. They want participants to undergo brain scans so they can explore the way in which the nerves connect the different parts of the brain and facilitate their effective functioning, known as white matter, so called because they appear white on scans.

John Starr, another member of the team and a consultant geriatrician at Edinburgh University, explains: “We are looking at the disconnected mind, so actually having pictures of how they have been disconnected is very important.”

The team want to explore what happens when white matter is impaired in order to explore ways to protect and even possibly halt its deterioration. The participants’ blood pressure will also be taken to examine how different rates affect the brain’s functioning, while digital eye imagery will be used to assess circulation.

With research suggesting that up to 80% of people who are diagnosed with a mental impairment develop dementia within six years, Starr says that even if we delayed the time it takes to develop dementia by five years then we would be halving the number of sufferers in the UK.

Starr says that the study provides the first opportunity to assess lifestyles from childhood to old age, and that it could help inform a strategy on when best to intervene in an individual’s life span to attempt to slow down or halt mental decline.

“The focus has been on people who have already got dementia. But what we need to do is take a more preventive approach. The focus is increasingly looking at prevention rather than cure,” Starr says.

The selected group are all from Lothian and were chosen from the original 70,000 because of their geographical proximity to the scientists’ Edinburgh University base and their good health.

Children from Lothian, the wealthiest region in Scotland, had scored the highest tests in the country.

As the day at Assembly Hall drew to a close, participants showed there was little wrong with their grey matter as many argued that the ill or poor would be less likely to respond.

Deary agreed the sample was selective. But the team says this will work to its benefit in drawing conclusions from the studies, as disease or big varieties in socioeconomic status would prevent the scientists’ ability to accurately compare data.

The success of the study depends on how many of the participants agree to take part further. Many, including Ian Cruickshank, 71, say they plan to continue to help. Echoing the conversations that have filled the halls throughout the day, he says: “I don’t think I appreciated just what a significant thing it was.”

A former director of the Lothian branch of Age Concern, he surely has made one of the biggest trajectories in his IQ over the past 60 years, shooting up 20 points, to score 74 out of 76 in his re-sit. And for anyone enjoying good health, he imparts some simple advice: “It is about not giving up.”

Keep it physical

Evidence shows exercise improves cognitive ability. But Pamela Holmes, manager of Help the Aged’s Healthy Ageing Programme, says authorities need to do more to ensure older people are given access to classes and that the classes are appropriate for their age group. “The services need to be appropriate and run by properly trained instructors who are aware of older people’s specific needs,” she says, adding: “We need to challenge the assumption that mental decline is an inevitable result of ageing.”

Stimulate residents

Keeping older people’s brains active does not need to be expensive, says David Sinclair, Help the Aged’s head of policy. In a new study, older people in care homes and day settings were asked what they used to enjoy when they were younger. “People came out with some very everyday things – one woman said she wanted to go shopping. But it is about being imaginative. A woman in her late nineties said she wanted to ride a horse – maybe that was not practical, but a trip to a local stables might have been.” Care homes should put up pictures about the locality to stimulate residents, he says, adding that more needs to be done to give people access to computer courses.

What’s their secret?

Robert Cowie, 71, a retired social worker from Edinburgh, has not been told his score. “I’ve played five-a-side football for years and still do. I don’t know whether my job has helped or hindered my ageing! But I’ve always tried to do my bit.”

Audrey Turner, 70 a retired theatre sister, scored 82% in 1947 and 91% now. “I like to keep active. I do curling, go sailing and do the crossword. I remember being terrified when I did the [original] test. I’m surprised to see my result this time around.”

William Irvine, 71, still works as a nurse in Edinburgh. He scored 56 out of 76 in 1947 and 72 out of 76 this time. “I have led a quiet lifestyle and don’t socialise too much, but really I have no idea what it is that I have done. I applied for my current job at 68 but was afraid of putting my age, they didn’t mind though.”

Sheena Wood, nee Cook, a former nursery headteacher, was the last to take the test and scored 73 out of 76, compared with her original score of 64. “I go to computer classes and volunteer in a homeless café but am open-minded about what effect lifestyles have. But keeping physically fit has got to help.”

Further information
Help the Aged has information on healthy ageing 

You can also order exercise videos for older people and download a free book and download a guide on healthy eating for older people. A leaflet on the National Coalition on Active Ageing can be downloaded