At last month’s launch of the first national dementia strategy, care services minister Ivan Lewis talked of his determination to bring the disease “out of the shadows”. It marked a recognition on the government’s part that the range and quality of dementia services and the priority afforded them by decision-makers needed to improve. But, days after the strategy was announced, the High Court upheld a decision taken by the National Institute for Clinical Excellence (Nice) in 2005 to withhold drug treatments from people in the early stages of Alzheimer’s disease, one of the most severe forms of dementia.
Campaigners say the ruling will force 100,000 people diagnosed with dementia each year to wait until their condition deteriorates before they can have the drugs, which cost just £2.50 a day and dull the symptoms of the condition.
So the “step change” envisaged by the dementia strategy sits uncomfortably with the Nice policy, but it’s likely both have been influenced by the same thing: the forecast explosion in the number of people living with dementia over the next 15 years.
Lewis said: “The scale of our ambition must now meet the scale of the challenge as demographic realities mean dementia will affect an increasing number of families.”
As if to prove his point, a week after the Nice ruling, the UK Inquiry into Mental Health and Well-Being in Later Life published its second and final report. According to its research, these demographic realities will see the number of sufferers rise to nearly one million by 2021.
These projections are based on the expected rise in the number of over 65s – as prevalence increases rapidly with age. Rates double every five years from age 30 to the point where one in five people will have it by the time they are 80 or older.
The economic consequences of this are huge: in the UK, dementia costs the health and social care economy £4bn a year – that’s more than cancer, heart disease and stroke combined – and accommodation costs equal £7bn. Friends and family provide unpaid care worth £6bn.
Andy Chidgey, head of policy and campaigns at the Alzheimer’s Society, says the Nice decision was driven by financial issues. “Nice uses a model to look at whether treatments are clinically and cost effective,” he says. “They decided the treatment benefits were not equal to the cost. However, we don’t think it’s acceptable to consider benefits to the person without giving consideration to the benefits to the family.”
People can live with dementia for 10 to 15 years before they die so anything that can alleviate symptoms can dictate whether someone can live independently. And Chidgey warns the demographic projections omit the impact that lifestyle issues such as obesity and increased alcohol consumption could have – both significant risk factors in developing dementia in older age.
“We don’t know what influence [they] will have but our gut instinct is that it’s going to make it worse,” he adds.
Another factor likely to increase the number of people with dementia is the emphasis the national strategy will place on improving diagnosis as early identification is one of its three priorities. Currently less than half of older people with dementia ever receive a diagnosis, the UK inquiry reveals.
Chidgey says: “Because there’s mass under-diagnosis there is a big pool of people that could benefit [from the strategy] and more will get access to treatment.”
The inquiry places much of the blame for under-diagnosis on inadequate skills of health and care workers. Surveys of GPs and nursing staff found most needed more training in diagnosing and managing dementia.
However, it also talks of a perception among professionals that dementia is untreatable: “It is commonly assumed that having mental health problems is a ‘normal’ and inevitable part of what it means to be old. The extension of this logic is that there is no use in trying to do anything about it.”
Rachel McMahon, a member of the British Medical Association’s GP community care committee, says GPs welcome the inquiry’s emphasis on raising public awareness of the condition but question the assumption that early diagnosis is always beneficial.
She adds: “This may be true for some but, equally, this is a life-altering diagnosis for which there is often little treatment available. Some would find it deeply distressing to know they have dementia, and may have a negative perception of their future.”
Chidgey says the High Court’s backing of the Nice ruling is likely to discourage GPs from diagnosing because they won’t be able to prescribe drug treatments. “We need to ensure people are clear there are lots of things that can be done without drugs.”
As it happens, McMahon is sceptical of the effectiveness of the drugs – “they are expensive for the benefit you get and don’t slow the disease’s progress” – and other clinicians agree the legal case has placed too much emphasis on medication treatments.
Tom Dening, consultant in old age psychiatry and medical director of Cambridgeshire and Peterborough Mental Health Partnership NHS Trust, says Nice used a flawed model to assess the effectiveness of the drugs but believes the case “drew more attention to the drugs than they merited. It has made people look again at what else they are offering [sufferers]”.
High quality treatments
As well as the national strategy re-emphasising the need for high-quality treatments, the government has also invested in social enterprise pathfinders to develop creative and economically viable services such as dementia-friendly housing designs. But Rani Svanberg, chief executive of Dementia Care, says these moves have failed to tackle the day-to-day difficulties.
She says: “I was disappointed with the Nice ruling but the social, leisure and learning opportunities people with dementia need are often non-drug therapies such as fitness, gardening, painting and theatre. These should be part of everyday living if wanted. While drugs are necessary, we must move away from medicalising people.”
Svanberg says this is highlighted by the lack of support services available to help maintain the independence of people with dementia. One-third of sufferers live in care homes where up to 80% of residents have the condition.
“This situation has not changed that much over the past 20 years,” Svanberg says. “Because of this, people with dementia are seen as a burden and residential care as a better alternative. For some this is ok, but the majority want to stay at home.”
Chidgey agrees. “A lot of money isn’t being spent in the right way. We’re seeing people going into long-term care too early or admitted to hospital when a bit more support in the community could have prevented it.” Although he says substantial investment will be needed to meet the rise in sufferers, using existing resources more efficiently would improve care in the short term.
Svanberg says this will need to happen if the government’s aspirations for the strategy – due for publication next summer – are to be met. “Quality care with trained and experienced staff costs money, but councils can’t even afford £11 an hour.”
Dening says for the strategy to work it must encourage commissioners to look beyond “balancing their books and hitting elective surgery targets”.
“We’re awash with reports,” he says. “What’s needed is a diversion of resources. Unless something is done this opportunity will trickle through the sand.”
➔ UK Inquiry into Mental Health and Well-Being in Later Life from www.ageconcern.org.uk
Alzheimer’s society campaign
The Alzheimer’s Society is running a campaign to increase awareness and educate the public about ways to reduce the risk of developing dementia in later life. It emphasises the importance of simple lifestyle changes and has produced information sheets, including top tips for a healthy lifestyle.
➔ More information from www.alzheimers.org.uk/Mind_your_head/index.htm
This article appeared in the 20 September issue under the headline “Dementia timebomb”