A small but significant step was taken for people with dementia yesterday.
A 54-page report setting out the “quality standards” they can expect from providers of care was published by the National Institute for Health and Care Excellence (NICE). For the first time, families of people with dementia unhappy about some aspect of care their loved one is receiving will have a document they can use to back their case. At the same time, providers now have a set of standards to help guide them in deciding what their priorities should be in terms of delivering care.
The report may prove most useful for those in the private sector who are paying for care, where it will provide extra leverage in an under-regulated area that can feel like the Wild West. Whilst some of the standards may seem too obvious to need stating – “people with dementia [should be] enabled to maintain relationships” – the Mid-Staffs scandal has shown us how even the most basic aspects of care can be neglected when a system becomes dysfunctional.
The new initiative by NICE, renamed to reflect its extended remit, is thus welcome. But it represents a tiny advance against a formidable foe. There are more than 800,000 people with dementia in the UK, and their numbers are projected to top one million by 2021. A third are living in residential homes, 670,000 people are involved in caring for people with dementia and the cost to the UK was £23bn in 2012. The disease causes amnesia, loss of language, mood changes, apathy, psychosis and aggression. But its worst aspect is the way it strips the dignity and personality from those it strikes – with no prospect of effective treatment let alone cure.
The human and financial costs of dementia are growing rapidly as the population ages, but the prospect of treatments to halt it, or slow its progress, are receding. At least five trials of new drugs have delivered disappointing results in the past five years.These setbacks have damaged confidence among drug makers who are desperate for a success story to make them feel there is something to work towards. Some causes of dementia, such as Alzheimer’s disease, can take 15 years to develop –the result of the build up of sticky protein clumps called amyloid plaques in the brain – and it is feared that by the time symptoms appear it may be too late to reverse it.
In the absence of an effective treatment, we are left with providing care and social support for those affected. In Britain, we are especially poor at caring for people with dementia. Many sufferers end up in hospital because of the lack of support in the community. Some argue, rightly, that putting extra funds into improving care – increasing social work support, expanding day-centre provision – would deliver more benefit for patients than investing in drugs of limited effect.
But we cannot avoid the fact that Alzheimer’s disease, and other forms of dementia, are increasing as the population ages and unless we find some means of curbing its growth it may overwhelm our capacity to care for its victims. We spend 12 times as much on cancer research as on researching dementia, yet dementia costs society twice as much.
Last year, David Cameron declared dementia a “national crisis” and pledged to increase funding for research to reach £66m by 2015. Yesterday Barack Obama announced an initial $100m in 2014 to improve understanding of the human brain, to help solve the puzzle of diseases such as Alzheimer’s. These are welcome gestures – and an indication that priorities are slowly shifting. But much more will be required if we are to tackle the dominant medical threat of our age.