Japanese lessons on dementia care
Dr Mayumi Hayashi is a Leverhulme early career fellow in the Institute of Gerontology at King’s College London. She discusses the Japanese approach towards dementia care and suggests lessons for the UK.
Last year, the British coalition government emphasised the need to improve dementia care, with David Cameron launching his "challenge on dementia", which identified three major goals: better health and care, fostering "dementia-friendly" communities, and improved research. Initial successes included a substantial increase in primary care trust funding for dementia care, but subsequent cuts in government spending resulted in reduced funding for the condition. Discussions in Whitehall about finding new, yet cost-effective, initiatives have been informed by Japan's experience. There, politicians and policy makers have focused on educating the public (even the term "dementia" was outlawed) by recruiting and mobilising volunteer dementia "supporters", and implementing a new national compulsory long-term care insurance system, offering enhanced services for people with dementia.
In Japan, within seven years of its inception in 2005, nearly 4 million people had already completed training as volunteer supporters for the country's dementia-affected population. The aim is to have 6 million supporters by 2017.
The long-term care insurance system introduced in 2000 attempted to cater for as many people with dementia as possible, with the aim of meeting their social as much as their medical needs. Ring-fenced additional funding for the new system – from taxation and insurance contributions – was intended to guarantee improved, and theoretically fairer, access to care for eligible dementia patients, who pay a flat-rate 10% user fee. So-called group homes, seen as promoting active living in a supported environment – similar to an extended family – are common. Pivotal to this system is the "care navigator", who is responsible for co-ordinating integrated health and social care, and for ensuring access to round-the-clock home care, nursing visits, day centres, group homes, respite care and rehabilitation. Reinforcing the entire system is a well-developed network of day centres (the world's best per capita provision), including dedicated facilities for dementia care.
Both Labour and the coalition government have attempted to borrow aspects of Japan's approach. The search for a cheap means of buttressing dementia care has arguably been the greatest attraction of Mr Cameron's "befriending" scheme – clearly modelled on the Japanese dementia supporters. Unveiled last February, the scheme aims to recruit 1 million volunteer "dementia friends" by 2015. Himself an early volunteer, Mr Cameron sees the initiative as being at the heart of "dementia-friendly communities", one of the three pillars of his dementia challenge.
But professionals question how relevant volunteer "friends" are to British needs. Many prefer the existing system of Admiral nurses (analogous to Macmillan nurses specialising in cancer care), who give specialist care to dementia sufferers and back-up to their carers. Highly trained, and so relatively expensive, these nurses are employed by the NHS, but their numbers have been affected by public spending cuts.
Assumptions that Japan can provide a model for Britain in managing the dementia timebomb may be misplaced. Crucially, Japan has not evolved a robust system of evaluating the quality of care. In contrast, Britain's approach has emphasised rigorous inspection. Organisations such as Dementia UK and the Carers Trust repeatedly stress the need for adequate support for dementia carers in order to guarantee a good quality of life for patients. Significantly, Japan has not yet produced any comparable networks of support for carers.
On the other hand, the Japanese voter typically expresses mature views on how care should be funded. The assumption is that high-quality services must be paid for. The high degree of consensus on this question is reflected in widespread support for the mandatory insurance system. But in Britain, successive governments have avoided increases in direct taxation to fund the social elements that form such an important part of care for dementia sufferers. Equally, it is taken as read in Japan that the entire system of accessible care should be properly funded and the cost shared between government (through taxation) and society at large (through insurance contributions). It is a lesson that Britain might usefully consider.
An earlier version of this article appeared in The Guardian, 12 June 2013