Dementia – Our Society’s Forgotten Victims

Unlike those with physical disabilities, people who suffer from Alzheimer’s and similar diseases struggle to get help from the state. The number of people suffering from Alzheimer’s disease and other forms of dementia is soaring. And, says the Alzheimer’s Society, the cost of care is already more than £17bn.

The total number of sufferers in Britain is now nudging 700,000 – and is set to rise, according to a report from the society published last week.

In the report, researchers from King’s College London and the London School of Economics warn that, with the first of the baby boomers nearing 60, there could be a rise of 40 per cent in the number of sufferers to 940, 000 by 2025. By 2051 the number of sufferers in Britain could soar to 1.7m. Dementia is already costing the country £539 a second, says Nick Hunt, the Alzheimer’s Society’s chief executive. “Millions of people will be affected by the devastating consequences of dementia unless we act now.”

Professor Martin Knapp of the LSE, one of the researchers behind the report, adds: “Dementia is one of the main causes of disability in later life – ahead of cancer, cardiovascular disease and stroke – yet funding for dementia research is significantly lower than for these other conditions.” Knapp reckons delaying the onset of the condition for just five years would halve the number of related deaths, saving nearly 30,000 lives a year.

The World Health Organisation has calculated that dementia is responsible for 11.2 per cent of disability among the over-60s. This compares with 9.5 per cent for strokes, 5 per cent for cardiovascular disease and 2.4 per cent for all forms of cancer.

However, the Alzheimer’s Society says that when it looked at papers on the causes of disability among the elderly, cancer was the top subject, with 23.5 per cent of studies carried out. Cardiovascular disease accounted for 17.6 per cent of papers, stroke 3.1 per cent and dementia just 1.4 per cent.

The charity is calling on the Government to do more to address the problem, saying in the report: “The UK’s current health and social care system is characterised by a widespread failure to support people with dementia and their families. This failure to develop services is perplexing given that dementia is a significant driver of demand for health and social care.”

But sorting out dementia won’t win votes, not least because there are no short-term solutions. Dementia isn’t sexy, and it’s not pretty. But because sufferers tend to be hidden from view, tucked out of sight in care homes, it has been largely possible for all those not directly affected to ignore it – including the Government.

One of the main problems is getting the state to view the mental health needs of elderly people with dementia in the same way it views physical disabilities. “Our experience shows that people with mental health needs are treated differently,” says the Alzheimer’s Society in a guide for people seeking full NHS funding. “This may be due to the fact that nursing for people who have mental health needs is often considered to be merely supervisory in nature and is called ‘personal care’. Physical health interventions are more easily labelled ‘healthcare’.”

And, says the report: “In practice, eligibility criteria can often discriminate against people with mental health conditions and we consider that this needs to be addressed urgently.”

Elderly people whose problems are demonstrably due to a progressive illness, rather than simply to the general frailties of old age, are supposed to qualify for full NHS funding, irrespective of their means.

But, while their condition has medical origins in the same way as those with heart problems or cancer, dementia sufferers and their carers have historically found it very difficult to convince the authorities that their care should be funded by the NHS, whose contributions are not means-tested, rather than the social services arm of their local authority, which won’t contribute a penny for people whose assets are worth more than a certain total – £20,500 in England.

This has led to thousands of elderly dementia sufferers being forced to sell their homes to pay for care that should have been provided free.

A government report into ways of regularising the system, prompted in part by findings by the health ombudsman a few years ago that highlighted flaws in the existing system, is due in the next few months.

But the underlying problems for dementia sufferers or their carers will remain until some way of establishing new criteria for mental health is found – and the signs don’t look good.