The number of people suffering from dementia in the UK - now 700,000 - will rise by a million to 1.7m by 2050, creating a crisis in medical and social care. A groundbreaking study, 'Dementia UK', to be published this week, will reveal the impact of the disease on the ageing population. It also reveals that carers of those with dementia save the state £6bn a year.
According to estimates, within two decades there will be a million dementia sufferers. Demand for services will escalate because of increasing public awareness. Professor Martin Prince of the Institute of Psychiatry, one of the lead researchers on the study, said that fewer than one in four of those with dementia are accurately diagnosed. The report warns that, as the proportion of older people in the population increases and family members are less able or willing to provide care, there will be an explosion of demand, placing 'an intolerable strain' on services.
'This is the most significant work to date on the rising costs and prevalence of dementia,' said Neil Hunt, chief executive of the Alzheimer's Society. 'The report highlights the fact that families and individuals are bearing the biggest burden - a burden this study makes visible on a scale never before acknowledged. As the number of people with devastating conditions increases, everyone in the UK is bound to be impacted - and that has to have policy implications for government that it ignores at its peril.'
The study, commissioned by the Alzheimer's Society and conducted by the London School of Economics and the Institute of Psychiatry, King's College, will be launched on Tuesday in London at a national conference called 'The Rising Cost of Dementia in the UK - Are We Prepared?' For the first time the report records regional variations in rates of dementia - actually very small - and the potential future financial cost on social care and the NHS.
Dementia, a disease of the elderly, describes the symptoms that occur when the brain is affected by specific conditions including Alzheimer's and vascular disease. Symptoms include loss of memory, delusion, speech difficulties and profound changes in behaviour. Pharmaceutical companies are now researching a vaccine to prevent dementia and drugs to slow its progress, but researchers say that, while the potential is exciting, results may be decades away.
This year, for the first time, there will be more pensioners than children in the UK. By 2017 there will be almost two million more people aged 65 to 84 in the population and another half a million over 85. Dementia affects one in five people over 80 years of age and one in 20 aged over 65. The Alzheimer's Society is expected to argue that what is needed is a national dementia plan, similar to the NHS plans that already exist to deal with cancer, strokes and heart disease. Such a plan would elevate dementia from a low to a high national health priority, establish long-term investment in research and treatment, improve the quality of life of those with dementia and their carers and, crucially, promote early diagnosis.
'It's extraordinary that we don't already have a dementia plan,' said Prince. 'Dementia, unlike heart disease and some cancers, doesn't shorten life. People with dementia may suffer years with the disability and that also exacts a profound physical and psychological cost from their carers, who at present desperately lack support services. If you look at priorities within the NHS, dementia receives very little investment. Yet while figures for cancer, heart disease and strokes are stabilising, the rates of dementia are substantially on the increase.'
The National Institute for Health and Clinical Excellence (Nice) has advised that drug treatments should not be given to patients in the early and late stages of Alzheimer's - a decision the Alzheimer's Society is due to challenge in court. The Dementia UK report is expected to argue that early diagnosis and drug treatment plus strong support for carers prolong quality of life and postpone the possible use of costly residential care. 'The report asks some really serious questions of government,' Hunt said.
Prince said that delayed parenthood, the necessity of couples to work to maintain higher mortgages, a higher divorce rate and the rise in single households all point to the likelihood of a much reduced number of carers in future.
'We face a care gap,' he warned. 'We have to de-stigmatise dementia, encourage early diagnosis and construct care packages in the community that work for those in the advanced stages of dementia. We have to push hard now to ensure effective intervention in the future.'
Cost of coping
George Russell, 73, and his wife Enid, 72, have been married for more than 50 years. For the past 11 years George has been Enid's carer. It costs £39 for Enid to attend a day centre for a few hours three times a week - more hours aren't available - and £20 for a woman to bath Enid twice a week.
'I don't think it's right. Enid worked all her life and has never been ill, so why should she pay now that she is sick?' George said.
'Before Christmas, I got a bit down and depressed. We don't have a lot of conversation. Enid doesn't understand much and I do everything for her and daren't let her out of my sight. Respite care was suggested, but I saw Enid fill up with tears. She's so grateful for everything that's done. She says: "If you think that's best." But she's happy here in her own little world. It's been her home for 30 years. I couldn't do it to her [put her in care]. It would crucify me.
'We've one daughter, but she works full time. I know she's there if I need her, but I can't bring myself to ask. Enid's a little bit incontinent and unsteady on her feet. She wakes up at night like a little child. We had lots of retirement plans, but they've gone by the board.
'Enid recognises me, but at our golden wedding she didn't know her own brother. She still looks the same; she's still beautiful, but behind the smile there's emptiness. It's a cruel disease. It's mourning when the one you love is still alive. That's why they call it "the long goodbye".
