Care of the elderly: Britain counts the cost of rise in dementia

Britain's health and social care systems are likely to be driven into meltdown by the spiralling cost of dementia, a major health report will warn this week. Experts fear that unless action is taken now to develop more effective treatments, some public services will face collapse.

The costs of looking after a growing number of dementia victims will more than double from £14bn to £35bn in England by 2026, the report from the influential King's Fund will say. The number of people with dementia will increase by 61 per cent to 937,636, imposing a major burden on social services and families.

Simon Lovestone, professor of old age psychiatry at the Institute of Psychiatry and director of the Biomedical Research Centre for Mental Health, said: "Unless we do something about it, half of all people over 80 will develop Alzheimer's. The implications for the NHS and social care will be so profound it would mean a complete rethink of public provision. It is only 30 years until the baby-boom generation reaches 80: we do not have long."

The number affected by dementia in the UK is estimated to exceed 1.1 million by 2026: one in three people over 65 will end their lives with the condition. The annual cost to the UK is estimated to rise from £17bn to £40bn with more than 70 per cent of the burden falling to families and social services.

Researchers point out the stark implications of failing to act now, and experts warn of future economic instability unless the costs are curbed by better treatments and services.

Professor Lovestone said: "Relative to other diseases, the amount of resources dedicated to dementia has been appallingly small. It is a very difficult disease to research, but the scientific community is now in a position to do much more so we need the resources to put this into action.

"I am optimistic about the potential for a range of new treatments, but this is an almighty problem for which we need to do long, complicated studies which are eye-wateringly expensive. If we don't do this, I don't know what plan B is because the impact of dementia on our economy will be frightening."

Dementia is characterised by declining memory, speech and decision-making. Symptoms are caused by irreversible changes to the brain which lead to disability and dependence. It can affect people of any age but it is most common among elderly people. Several diseases are connected with dementia, but Alzheimer's is the most common.

There is no cure or treatment for the underlying diseases but several drugs can slow the brain's degeneration and alleviate symptoms. The National Institute for Clinical Excellence (Nice), the organisation that decides which drugs offer value for money to the NHS, last year controversially withdrew these drugs from patients with early-stage Alzheimer's.

The King's Fund findings come as experts prepare the UK's first dementia strategy which will call on the Government to commit more resources and to co-ordinate a comprehensive research programme.

Jenny Owen, co-lead of the National Dementia Strategy, said: "The aim is to invest more money up front, get people diagnosed earlier and focus on proven interventions. It will look at ways to reduce stigma, introduce minimum skill standards for care staff, and ways to help sufferers and relatives find their way through the quagmire of services. We've had report after report and it's now time to prioritise dementia. It is extremely debilitating and is set to affect a lot of people."

Alistair Burns, professor of old age psychiatry at Manchester University, said he wass astounded by Nice's decision to ration dementia drugs that cost £2.50 per day. He said: "I have to tell newly diagnosed patients to go away, get worse and come back in 18 months, which many would say is scandalous. We want to try to keep people as independent as possible but we turn people away from safe and effective drugs that may well help them to stay independent for longer because of costs. This feels awful and makes no sense."

According to campaigners, dementia has failed to attract scientific attention or public sympathy, which means government funding for research has lagged behind other major diseases. In 2005/06, theDepartment of Health devoted £25m to dementia research – just over 2 per cent of its total research spend and a third of the money allocated to heart disease.

The Alzheimer's Society says the UK invests less in dementia research than international counterparts. It is hoped the King's Fund findings and the National Dementia Strategy, expected in this autumn, will lead to wider recognition of the scale of the problem.

Neil Hunt, chief executive of the Alzheimer's Society, said: "The dementia strategy offers a great opportunity to make a profound difference which we can make only if we respond with a huge amount of resources and commitment. We are all living longer, but one of the unexpected and terrible consequences of this is the rise in dementia. This has to be a national, European and world priority. It is the single biggest unaddressed health issue we face."

There is reason for hope. The first human trial for a drug that alters the protein which causes Alzheimer's begins in July. France's President Nicolas Sarkozy last week announced backing for a European dementia convention during his EU presidency in September.

But dementia costs Britain more than heart disease, cancer and stroke combined; next week's report will say these costs will rise even if new treatments are developed.

Mr Hunt said: "The bottom line is we don't have enough money in the system for dementia, so it is crucial there are earmarked funds in the next comprehensive spending review. The nation and the Exchequer have to take the scale of this problem seriously."

'I'm happy I can still enjoy my family'

Keith Turner, 70, a retired chiropodist, lives with his wife Lilian in Hastings. He was prescribed medication but it was then withdrawn. "In 2002 I started mislaying my keys, forgetting what I'd seen on TV, felt anxious and confused. Very quickly my wife was looking after me 24/7 as I started wandering and wasn't safe alone. More than a year later, I was diagnosed with Alzheimer's and my psychiatrist prescribed Aricept. In a matter of weeks I was reading, watching TV and going to the supermarket on my own without needing a list.

"The drug costs £2.50 a day but Nice [National Institute for Clinical Excellence] says it is not cost-effective for people like me. But everyone should be given the opportunity to try to get their lives back. Letting people get worse before they get help is against basic human rights. I am so happy I can still enjoy my family but I know this is no cure."

'You have to fight for basic things'

Denise Lynton, 61, from Maidstone, Kent, has been caring for her husband Stan, 65, for 13 years. He was diagnosed with Alzheimer's just after taking early retirement. Despite medication and being physically healthy he can no longer talk, walk, wash or feed himself. "Looking after him is my job; it is a 24-hour-a-day job which saves the Government lots of money," Denise says.

"I do have help from the NHS and social services. Carers get Stan up in the morning, again at lunch and in the evening at weekends. During the week my sons and various friends help me to get him ready for bed or sit with him if I want to go out.

"It is tiring but I'm absolutely committed to looking after him. It really bothers me that you have to fight for basic things like incontinence pads and lifting equipment. Everyone should get support to stay at home as long as possible."