Cancer, heart disease, stroke – these are the main conditions that grab the headlines and dominate the health service agenda.
But, in reality, dementia tops all three combined when it comes to the amount of money spent on treatment. And, with increasing life expectancy, the number of people living with this devastating condition is set to double in the next 30 years.
The government is waking up to the massive impact dementia is currently having on the NHS and the alarming implications
for the future.
In June the Department of Health launched a consultation on proposals contained in a draft National Dementia Strategy – a
five-year plan for improving services for people with dementia and their carers.
The proposed strategy focuses on three key themes: improving awareness of dementia in the population and among health and social care professionals; ensuring early diagnosis of the condition to allow for early intervention; and delivering high-quality care and support to both people who are diagnosed with the condition and their carers.
Launching the consultation after almost a year’s work with stakeholders, junior health minister Ivan Lewis did not mince his words.
‘We can no longer ignore dementia, or pretend that it is just an inevitable consequence of the ageing process. A strategic, cross-cutting approach is vital if we are to deal with the challenges and consequences of dementia as a society,’
‘We are not just asking you to consider how services for dementia can be improved but also how we might make services as a whole work better for people with dementia and their families,’ he added.
Pauline Ford, who is leading the RCN’s work on the dementia strategy, says that the initiative was prompted by increasing concern about the services provided for people with the condition.
‘There has been growing evidence to show that all is not well and in demographic terms, the numbers are increasing – as people live longer the incidence of dementia increases,’ she explains.
The situation reached a point where the DH could no longer ignore the ‘writing on the wall’, she adds. ‘As the strategy is being developed it does signal the fact that the DH is taking services for people with dementia very seriously. For us the real issue now is what are they going to do and what leadership are they going to show in developing that national strategy.’
Leadership is urgently required. The Alzheimer’s Society’s Dementia UK report, published in 2007, gave a stark estimate of
the growing numbers affected by the condition. By 2025 it concluded that one million people in the UK will be living with dementia. It also found that the NHS is currently spending £17bn a year on treating the condition – in 29 years’ time this will have risen to a staggering £50bn.
A National Audit Office report, Improving Services and Support for People with Dementia, also published in 2007, identified serious shortcomings in current systems and insisted that investment in improving services to address current failings would lead not only to substantial improvements in quality of life for people with dementia but also to savings in terms of acute hospital use and admission to care homes.
So what does the strategy mean for nurses on the frontline?
In the next five years, the government is aiming to build an environment where people are encouraged to seek help early for memory problems. It wants the NHS to provide a prompt and competent specialist assessment, followed by accurate diagnosis.
Developing professional dementia training is a key issue to ensure that nurses have the appropriate skills to care for these vulnerable patients. The strategy emphasises that all nurses – not just elderly care specialists – must have a good understanding of dementia and how to treat patients who have the long-term condition.
It suggests, in order to push the issue of training and education firmly up the agenda, that the DH should convene a discussion group, including representatives of the NMC, the RCN, universities and other organisations involved in vocational training and continuing professional development.
The aim would be to come to an agreement on the core competencies required in dementia care. These organisations would then be able to adapt their curricula and include these core competencies in both pre and post-registration training.
The government hopes that an agreed set of skills would help care organisations to identify learning and development needs. It would also focus learning providers on producing courses that are useful to the healthcare sector, as well as assisting regulators and commissioners in identifying quality in dementia care.
These changes are clearly needed. The strategy warns of a ‘lack of leadership for and ownership of dementia in most general hospitals’ and ‘marked deficits in the knowledge and skills of the general hospital staff who care for people with dementia’.
The NAO report found that at present not enough information is sought from relatives and carers, meaning that delirium and dementia can go unrecognised. Even when they are recognised, care may not be centred on the patient’s individual needs.
Currently, families are often excluded from discharge planning, which means that staff can often make false assumptions about whether it is possible for people with dementia to be cared for at home.
The report also revealed that some general hospital services were reluctant to diagnose dementia, for fear that it would delay patient discharge.
Helen Pratt, mental health liaison nurse at Pennine Care NHS Foundation Trust, welcomes the strategy. ‘Dementia will be every nurse’s business and it is clear that a lot of work needs to be done around the knowledge, skills and training of the nursing workforce. This strategy is going to have a huge impact on nurses and they need to be educated and aware of dementia from the outset of their training,’ she says.
But does the strategy go far enough?
Jonathan Webster, nurse consultant for older people at University College London Hospital, welcomes it as ‘shining a spotlight’ on dementia but questions how it will be linked in to other policies such as the End of Life Care Strategy and the National Service Framework for Older People.
‘We need to look at dementia care within the broader context of the long-term conditions agenda and ensure that people with dementia have access to the holistic care provided by specialist older people’s nurses. All parts of the jigsaw need to be joined together,’ he says.
Mr Webster also warns that the strategy needs to ensure everyone knows how to look after people with dementia. ‘The strategy also talks about basic training but that really needs to be essential core training across all sectors. It also needs to be core at pre-registration and at every level, as well as having dementia experts that can be called upon,’ he adds.
Linda Nazarko, nurse consultant at Ealing PCT, agrees. ‘The NHS needs lots and lots more training in dementia. I hope that the strategy does not fall into recommending a dementia specialist which then boxes the problem in an organisation. The challenge is to get all staff knowing about dementia.’
Ms Nazarko also thinks that the strategy is light on detail in terms of the training agenda. She wants every adult nurse to have the education and expertise to care for older people and for it to be a requirement of pre-registration education.
‘Some students don’t benefit from any specific education in care of this client group. Some students have lectures cancelled and qualify without any specific education on caring for older people,’ she says. ‘How can we possibly expect these nurses to identify and meet the older person’s care needs?’
Nurse training needs to change ‘fundamentally’, according to Philip Hurst, policy manager for Age Concern England.
‘It is unfair to the people receiving care and to nurses that they can go into adult care without any dementia training. No one can explain why this persists but it is wrong and needs to change,’ he insists.
Rachel Thompson, a lead practice development Admiral nurse, argues that fine words must be backed up by real investment.
Admiral nurses are specialist dementia nurses employed in some NHS trusts. ‘Significant investment, proper funding and clearer directions for improvements are needed to make the strategy successful,’ she says. She also criticises the strategy for not recognising the contribution nurses make in delivering dementia care.
Ms Pratt agrees. She is calling for the government to develop a series of targets for dementia to move the issue up the agenda in general hospitals. ‘I hope the final strategy comes with teeth. It needs to be as important as the government’s other NHS targets, as important as C. difficile and MRSA rates for hospitals,’ she says.
Ms Pratt also fears that the five-year timescale for implementing the strategy is too ambitious. ‘I don’t think this is going to happen in five years. It will be a lot longer in terms of the seeing the changes that are needed – it will be over 10 years because these are massive changes and it is difficult to see that happen very quickly,’ she warns.
It remains to be seen what the final strategy will contain. The consultation closed last week and the DH has promised to publish the full strategy in October.
One thing is for sure – ministers need to show leadership, improve dementia training for nurses and identify the clear role that the nursing profession plays in providing appropriate care to this growing number of patients.
What the dementia strategy will mean for nurses