Healthy living
Mind matters
The dementia time bomb
As a nation, we are failing to care properly for the victims of this dreaded disease and spending on research is woefully inadequate, reports Vivienne Parry
We fear it more than any other disease. We say things like “if I ever get like that, shoot me”. And we mean it. We don’t know how to cope with those who have it, especially when we no longer recognise them as the people we once knew.
Caring for loved ones affected by it is exhausting, highly stressful and largely unappreciated. It is incurable and progressive and affects some 700,000 people a year. Yet we all – society, government, medicine – would rather not acknowledge dementia in older people. We simply choose to ignore it.
The evidence that we do so is overwhelming. The Government has no strategic plan for dementia, despite it costing the UK £17 billion a year. We expect families to look after sufferers for as long as possible, yet offer them no guaranteed support or respite care.
Even so, the cost of care for those with dementia still exceeds that of cancer, heart disease and stroke combined. And dementia research is ridiculously underfunded, attracting a mere £11 a patient per year compared with £289 for cancer. Why should this be so?
Clive Ballard is the research director of the Alzheimer’s Society and Professor of Age Related Disorders at King’s College Hospital. He is blunt. “It’s a combination of ageism, a very negative attitude, and nihilism – quite simply, a feeling that nothing can be done.”
Alzheimer’s was first identified a century ago and is the commonest of the dementias in older people. Others include vascular dementia and so-called Lewy Body dementia; symptoms of all three are broadly similar. It changes the chemistry and the structure of the brain, causing brain cells to die.
Memory problems are the most striking early symptom and more than half of those diagnosed with these will develop dementia within five years.
As it progresses, people lose their ability not just to remember, but to think, speak and make decisions. Their behaviour changes; sadness, anger or agitation are common.
As more parts of the brain are affected, activities such as dressing, personal care and eating become increasingly difficult. The average time that someone lives after diagnosis is eight years but 15 is possible.
The Alzheimer’s Society recently commissioned a study, Dementia UK, which was published earlier this year. It makes shocking reading. It estimates that about 683,000 people in the UK have dementia.
Age is the single greatest risk factor, and with an ageing population, incidence is likely to rise to 940,000 by 2021 and 1.7 million by 2051. The sheer scale of future need may be one reason why government can’t grapple with it. The disease is too complex, too overwhelming.
The report also identified a widespread failure to support sufferers and their families. Social service provision varies widely. Just 3.9% of those with dementia are offered home care services in England, for instance, compared with 6.9% in Scotland.
The burden often falls on spouses, usually elderly themselves, or else on the children of the sufferer, and it cannot be underestimated. Carole Woodvine is the daughter of a sufferer. As she says starkly, “I’ve seen too many people crushed by the disease.”
People with Alzheimer’s do best in familiar surroundings, and their families are often heroic in their attempts to continue to care for them at home. Carole not only gave up her job as a surveyor to look after her mother; she organised an astonishing 24-hour care rota, which involved nine people, including her husband, and lasted four years.
The demands of looking after someone 24/7 are incredibly stressful. Marianne Talbot, whose weekly blog about caring for her mother appears on the Saga website, remains heartwarmingly upbeat but even she concedes that the strain sometimes just has to come out. “The books tell you not to get angry with a demented person. But they don’t tell you how not to get angry. Nor do they mention the relief that shouting brings.”
If in residential care or hospital, people with dementia deserve specialist care from highly trained professionals. But this very challenging and responsible role is too often filled by a transient workforce of largely untrained people on the lowest of wages. And once people have dementia, their other health needs may be ignored. For example, the undertreatment of diabetes is scandalous.
The Admiral nurses scheme pioneered by For Dementia offers support – as Macmillan nurses do for cancer – but there are still only 48 across the country.
Lack of resources is a major problem, but it is made worse by the perception of the disease. “There is a huge amount of fear and ignorance,” says Barbara Stephens of For Dementia, a charity which promotes best practice for professionals, carers and sufferers. “People struggle for years not knowing how to find support.”
Diana Melly is the wife of jazz singer George, who is 80 and suffers from vascular dementia (though he still performs). She is unstinting in her praise of the Admiral nurses. “Some days it’s awful and I feel I’ve been horrible to him. On days like that the nurse is very comforting. They understand what it’s like to live with someone with dementia.”
If care and resource is a subject for gloom, there is better news on the research front. It went through a disappointing period, when progress was very slow, partly because of extreme underfunding. However, pieces of the jigsaw have suddenly come together to yield the bigger picture so long sought.
“Its time has come,” says Rebecca Wood of the Alzheimer’s Research Trust. There is now a real impetus and enthusiasm among researchers.
Although doctors can be about 80% accurate in diagnosing Alzheimer’s from clinical symptoms, only examination of brain tissue can confirm it. The disease is characterised by aggregations of one misfolded type of protein, called amyloid plaques, and by tangles of another.
Whether the plaques are a cause or a consequence of the disease has been hotly debated, with most scientists now favouring cause. Certainly the misfolded protein appears in the brain before symptoms occur. And this is an area of both problem and opportunity.
In some ways, the search for a cure for Alzheimer’s is where HIV was a decade ago. When there were no treatments for HIV, people preferred not to know if they had it. Nihilism and Alzheimer’s are bedfellows at present, because the only drug treatments available are ones that temporarily modify symptoms, not halt its progression.
If there’s nothing that can be done, people don’t want to know at 50 that they will get the disease at 80. But if knowing can make a difference, an altered mindset takes over: public pressure and awareness build up and people give readily to aid research.
The search is therefore on for an advance marker for Alzheimer’s. It might be in the blood – and there is excitement as to whether the accelerating weight loss seen before symptoms might point to a marker – or by using new imaging technologies such as the latest PET/CT scanners to look at the brain. Without such markers, drug developers are working blind, condemned to assessing the effectiveness of a new compound only after symptoms have appeared – whereas the drug might have its greatest preventative effect if administered before that happens.
On a parallel track, understanding of the process that leads to plaque development at a molecular level has prompted a rash of new drugs, some now at late-stage trials. But frustratingly, lack of funding slows progress. “Discovery to prescription takes on average five years in cancer drugs, but it is 20 years for dementia,” says Prof Ballard.
The discoveries on which Aricept is based were made in the Eighties. And there is of course enormous disquiet that those few drugs that are available, like Aricept, have not been approved for use by NICE for early onset, when it is most effective.
On the far horizon is research involving stem cells which could perhaps repair damage. Closer is a vaccine, not given to prevent Alzheimer’s, but to treat it by stimulating the immune system to attack plaques.
The first study in 2002 was stopped early because of safety fears, but two long-term follow-up studies suggested many patients benefited and a new vaccine study has been launched in the USA.
It may eventually be a question of risk; if there is an 80% chance of developing a disease, a 10% risk of severe side effects may be one that patients are prepared to embrace.
A cure is decades away but delay is now the key word. Delaying onset by just five years would transform patients’ quality of life and dementia care. Rebecca Wood is hugely excited by the recognition that exercise, diet and other social factors such as education have the potential to delay onset of Alzheimer’s. “Large-scale epidemiological studies are now urgently needed,” she says.
She also points out that knowledge of what might be done in middle age to delay disease would have the same impact that recognition of cholesterol levels has had on heart disease. There is evidence that controlling blood pressure and cholesterol could not only help the heart but also reduce the risk of dementia, as could exercise and diet. Staying mentally active and socially engaged may also be protective.
There is particular interest in the idea of “neuronal reserve”, which builds on observations that those with higher education or special skills, such as being bilingual, get dementia but have symptoms delayed – in the case of bilingualism by four years.
The late Bernard Levin developed Alzheimer’s. “My theory is that his great intelligence allowed him to bluff, to hide his memory loss at first,” says his partner Liz Anderson. “When he could no longer do that his decline seemed to be more rapid.”
Keeping the brain active with mental puzzles may yet prove a worthwhile preventative technique. Many assume that because Alzheimer’s is seen mainly in older people, it is an inevitable part of ageing. This is not true. Alzheimer’s is a specific disease and that’s good news, not bad.
We can’t stop the march of time and we may not be able to cure it, but there is very strong evidence to suggest that we can delay it. And therein lies hope and a challenge. But unless Alzheimer’s research is properly funded, to the level of cancer, that hope has little chance of being realised.
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