Your best bet if you have dementia? Be a medical guinea pig
As ‘Babs’ reveals her diagnosis, how Alzheimer’s trials could help you stay a step ahead of the disease
THE shock news that showbiz legend Dame Barbara Windsor has Alzheimer’s was met with a tidal wave of support from her millions of fans around the world.
The star of Carry On films and EastEnders, 80, was diagnosed four years ago but her husband, Scott Mitchell, decided to speak out now as her symptoms – problems with her memory and changes in her behaviour – were becoming more pronounced.
In an emotional interview with The Sun newspaper, he said: ‘I’m doing this because I want us to be able to go out and, if something isn’t quite right, it will be OK because people will now know that she has Alzheimer’s and will accept it.’
Of course, Babs – as she’s better known – is far from alone: about 850,000 Britons have dementia, with 200,000 new cases each year. One in three people born today are expected to develop the condition that gradually robs sufferers of their mental abilities.
And, while there is no cure for dementia, there is hope.
Today, UK experts are spearheading a huge and concerted medical effort to better treat dementia in all its forms – and the message from doctors is that, by getting involved, patients will have the best possible chance of staying well for longer.
John O’Brien, Professor of Old Age Psychiatry at the University of Cambridge and chair of the Alzheimer’s Research UK clinical trials advisory board, said: ‘There are more than 150 trials into dementia ongoing in Britain today and there are huge benefits to the patients of taking part in them, being among the first in the world to have access to new treatments.’
For anyone who thinks being a medical guinea pig sounds risky, he added: ‘Trials are properly regulated to minimise risk and people are closely monitored. Safety of medication is already established in studies that involve actual patients.’
Clive Ballard, Professor of Agerelated Diseases at the University of Exeter, agrees: ‘Patients who are enrolled in a clinical trial are likely to have a better outcome, because they are closely monitored.’
There’s much more information on trials at the website www. alzheimersresearchuk.org.
For those interested in taking part in a trial, the NHS National Institute for Health Research has launched Join Dementia Research, a resource that allows would-be volunteers to put themselves forward.
With their help, here we outline some of the most promising NHSbacked dementia trials currently recruiting and explain how you or a loved one might benefit…
THE DIABETES PILL OFFERING HOPE WHAT
Those with type 2 diabetes are much more l i kely t o develop Alzheimer’s disease and some studies have shown that the diabetes drug liraglutide, designed to help control blood sugar levels, actually improves Alzheimer’s symptoms.
WHO IS IT FOR?
The ELAD (Evaluating Liraglutide in Alzheimer’s Disease) trial is now recruiting patients with early-stage Alzheimer’s at 24 UK sites.
HOW IT CAN HELP
Insulin, a hormone that is primarily involved in controlling blood sugar levels, is also responsible for helping nerve cells work. ‘In Alzheimer’s, nerve cells appear to stop responding to insulin,’ says Paul Edison, senior clinical lecturer and consultant at Imperial College London. ‘We know that liraglutide is safe and available for treatment for diabetes, so if it can be shown to be effective for dementia patients, it could be available very quickly. ’ Email memory@imperial.ac.uk
A DRUG TO SLOW MEMORY LOSS WHAT
The worldwide CREAD study is evaluating the medication crenezumab, which may slow memory decline. This drug targets the abnormal protein that develops in the brains of people with Alzheimer’s disease, leading to the death of brain cells and causing symptoms such as memory loss, mood changes, and communication and reasoning problems.
WHO IS IT FOR?
Patients aged 50 to 85 with early Alzheimer’s or memory or thinking problems that may be early symptoms of Alzheimer’s disease.
HOW IT CAN HELP
‘We are working with people who are in the very early stages of Alzheimer’s disease and hoping to slow the progression of the disease,’ says Professor Iracema Leroi, professor of psychiatry at the University of Manchester. ‘We hope to slow the deterioration of cognitive ability and daily functioning resulting from the progression of Alzheimer’s disease. If effective, this treatment will make a significant difference to the lives of people living with this condition, and their loved ones.’ creadstudy.com
EXERCISE COULD BE BEST MEDICINE WHAT
The TACIT trial aims to improve the health and wellbeing of people with dementia using the ancient form of exercise known as t’ai chi.
WHO IS IT FOR?
The trial is recruiting 150 people with dementia together with their informal carer, in the Southampton and Dorset areas.
HOW IT CAN HELP
‘People with dementia are often excluded from trials, including t’ai chi trials,’ says Dr Samuel Nyman, NIHR career development fellow at Bournemouth University, ‘yet there is good evidence that t’ai chi is beneficial for health conditions including stroke and arthritis.
‘ T’ai chi can improve people’s alertness and attention, and make them less frustrated as well as helping with balance and reducing the fear of falls. It’s also good to have something a patient and carer can do together.’ research.bournemouth.ac.uk/ project/the-tacit-trial/
SUPPORT TO STAY SOCIAL AND ACTIVE WHAT
The PRIDE study – Promoting Independence in Dementia – is looking for ways to help people maintain their independence in the early stage of dementia, encouraging them to stay socially, physically and mentally active.
WHO IS IT FOR?
People with early stage dementia at memory clinics across the UK.
HOW IT CAN HELP
‘People with early stage dementia often give up their favourite activities as the activities become more difficult and they lose confidence,’ says Professor Martin Orrell, professor of ageing and mental health at the University of Nottingham.
‘ We have developed a manual to help people remain physically and mentally active and independent. It’s essentially a way of helping them get that confidence back, and making the most of what they can do.’ joindementiaresearch.nihr.ac.uk
COMMON DRUGS EASING AGITATION WHAT
The SYMBAD trial for managing agitation in dementia is comparing two commonly used medicines – the antidepressant mirtazapine, and carbamazepine which controls seizures – with a placebo to see if they treat agitation in dementia.
WHO IS IT FOR?
People over 18 with a diagnosis of probable Alzheimer’s and agitation, at nine UK centres.
WHAT HOW I T CAN HELP
‘Agitation and aggression in dementia significantly affect quality of life, and may mean an admission to a care home or general hospital,’ says Sube Banerjee, professor of dementia at Brighton and Sussex Medical School. ‘ Antipsychotics are commonly prescribed, yet work in only 20 per cent of people and carry significant risks. There is anecdotal evidence that mirtazapine and carbamazepine can help, without the risks of antipsychotics.’ joindementiaresearch.nihr. ac.uk
A GENTLE WAY TO BLOCK STRESS WHAT
Trials of a new drug, Xanamem, which was discovered at the University of Edinburgh and is designed to block excess production of cortisol – the stress hormone – in areas of the brain most affected by Alzheimer’s disease.
WHO IS IT FOR?
The worldwide XanADu trial is taking people over 50 with memory deterioration at seven UK sites.
HOW I T CAN HELP
‘The mechanism of this is much gentler than some other drugs, and so could be given perhaps ten to 20 years earlier to prevent problems instead of treating damage once it has already occurred,’ says Dr Stuart Ratcliffe, chief scientific officer at St Pancras Clinical Research. joindementiaresearch.nihr.ac.uk
... AND ONE WE ALL CAN TAKE PART IN
The PROTECT study will gather dat a a nd s upport i nnovat i ve research to improve our understanding of the ageing brain and why people develop dementia.
WHO IS IT FOR?
The study is recruiting at least 25,000 people aged 50 and over who do not have dementia – they will complete assessments annually online over the next ten years.
HOW IT CAN HELP
‘The PROTECT study will give us a great deal more information about how certain factors affect our risk of dementia,’ says Clive Ballard, of the University of Exeter.
‘ We have developed resources such as the REACT memory and reasoning programme. We have also established a number of flags which help us identify when people are developing mild cognitive impairment which can lead to dementia and can, when appropriate, advise them to see their GP.’ protectstudy.org.uk