NHS introduces clearer thinking on dementia

Cross-party support for England’s national dementia strategy is leading to more research, training and ‘dementia cafes’ for patients and carers

A change of government typically creates uncertainty about which of the previous administration’s initiatives will be ditched. Fortunately for Labour’s 2009 national dementia strategy, it won cross-party support and is still seen as a description of the way to improve the quality of life for the 750,000 people in the UK with dementia, and their carers.

“Having a national strategy has helped to bring people together, recognising that dementia is one of the biggest challenges that we face,” says Andrew Chidgey, the head of policy and public affairs at the Alzheimer’s Society.

“I think the biggest change from before the strategy is the increase in public and political interest. Dementia is now much more important on the public policy agenda and something that is being taken far more seriously.”

For the first time at the last general election, the manifestos of the three main parties included commitments on dementia. Labour pledged better access to psychological therapy, counselling and memory clinics; the Liberal Democrats said they wanted to help the NHS produce savings and use some of this for dementia; and the Conservatives promised to boost research.

The 2011-12 NHS Operating Framework had dementia as one of only two new priority areas, the other being the health of war veterans. NHS organisations are now required to make progress on the national dementia strategy, and primary care trusts to publish local plans for dementia services. “So I think that was a fairly clear signal from the government they were prioritising this work,” Chidgey says.

In line with the pre-election pledge, in June the Department of Health (DH) promised £20m over five years to four new National Institute for Health Research (NHIR) biomedical research units. It has committed the Medical Research Council to increase funding for neurodegeneration research by 10%, to £150m over the next four years. The number of dementia research experts will be increased through new academic clinical fellowships. More patients and carers will be involved in research through the NIHR’s dementia and neurodegenerative diseases research network.

At a local level, councils and NHS organisations are beginning to commission dementia advisers, who make contact with patients and their carers after diagnoses and remain in touch as long as needed, helping to access information and advice. “We have probably got 70 to 80 dementia advisers in place and those are being evaluated,” Chidgey says.

About two-thirds of people with dementia live in the community, and peer support networks are also becoming more common. These include ‘dementia cafes’, a concept pioneered in the Netherlands to provide informal settings where people with dementia and carers can come together and talk to each other about the issues they face. (See case study on a dementia cafe in Romford.)

Low priority services

In terms of services, Chidgey describes the UK as “at the start of quite a long journey” and that a lot of people are not getting access to the good quality services and support. National Audit Office reports give some indication of the ground to be covered.

Its 2007 report on dementia concluded that the condition was a low priority for health and social care services. Too few people were being diagnosed, or not being diagnosed early enough, and early interventions known to be cost-effective were not widely available. Its further report in 2010 found that there had not been a robust approach to implementing the national dementia strategy.

In March last year Parliament’s public accounts committee reported unacceptable regional variations in access to diagnostic services for dementia and access to dementia drugs. It said that local leadership is still lacking across the NHS, as well as in social care and care homes. Stigma and negative attitudes towards mental illness and old age exacerbate the problem, the committee concluded.

This summer the all-party parliamentary group on dementia made a series of recommendations to improve outcomes for people with dementia and get better value for money. It called for an integrated approach to support, the use of key workers to act as a single point of contact, better training for staff working with older people and an increase in rates of diagnosis.

“The note of optimism I would bring,” says Chidgey, “is that there are a whole number of things coming into place now that I think will start to change the quality of services that people can access.

“So, for example, the Nursing and Midwifery Council has put in its pre-registration standards for nursing, what nurses will have to learn about in their training, that people should be learning about cognitive impairment and how to care for people.

“And there are lots of other examples like that, including Skills for Health and Skills for Care, who have developed agreed core competencies for dementia that different professionals should have.”

The issue, he believes, is whether these initiatives will be “followed through”, but he is confident that over the next five to 10 years there will be significant changes in the knowledge of the social and healthcare workforce in relation to dementia.

Another step forward came last October when care services minister Paul Burstow gave a commitment that by November 2011 the use of antipsychotic drugs for dementia would be reduced by two-thirds. The Alzheimer’s Society estimates that 150,000 people are being inappropriately prescribed antipsychotic drugs as a means of ‘control’, contributing to nearly 2,000 deaths each year.

With only a few months to go, Chidgey believes that early figures suggest a reduction is under way, but awaits more conclusive evidence.

In July, Burstow announced new dementia commissioning packs to help health and local authorities design services, which received a cautious welcome from the Alzheimer’s Society.

Chidgey says there is evidence that assistive technologies, such as electronic reminders or tracking devices, are helpful to people with dementia, but that there are not yet widely used and more research is needed.

Overall he is optimistic and maintains that a huge amount has been achieved in getting the NHS and care services to recognise dementia.

“In February we will be coming up to it being three years since the national dementia strategy was launched,” he says. “It was intended to be a five year strategy, which I think will be a very good time to take a further look at what has been achieved to date.

“The jury is still out in how much progress we have made, but I think there has been progress and we are hopeful that we can get far more.”