Dementia: What should be the priority for the election?

What should be the next government’s priorities for improving dementia care? Vern Pitt asks service users, carers, practitioners and service leaders

Ruth Sutherland, acting chief executive, Alzheimer’s Society

Many people with dementia and their ­carers face a daily struggle: whether it’s at home, where social care costs a fortune and is often of poor quality; or in hospital; or a care home, where the majority of staff are not trained in how to look after people with dementia.

Despite the huge numbers affected, dementia research in the UK is desperately underfunded.

It lags far behind that allocated for research into conditions such as cancer and heart disease. Yet developing new treatments has the potential to reduce the number of people with dementia.

Significant steps have been made since the publication of the national dementia strategy but more needs to be done, especially at a local level, to improve care and save money. As a wider society we need to acknowledge that dementia is a national priority.

With a general election imminent, the Alzheimer’s Society is calling for the next government to hold to the promises made in the strategy, improve and increase investment in the social care system and boost funding available for dementia research.

Dave Anderson, chair, Faculty of Old Age Psychiatry, Royal College of Psychiatrists

The major challenge facing health and social care services now and for decades to come is the ageing population. Unless more effective and efficient responses are found this demographic change threatens the very sustainability of these services.

Dementia is the most strikingly age-related medical condition, causing profound disability and death. It is also the most costly. That cost is greater than cancer, heart disease and stroke combined and within four decades will more than treble.

UK diagnostic rates and access to ­treatment are among the worst in Europe. Neglect of people with dementia has been demonstrated in the community, hospitals and care homes. Evidence and best practice show this need not be the case; rather, that cost-effective solutions exist.

The NHS operating framework compels action on stroke, cancer and heart disease and this priority status has brought huge improvements. Dementia, the most important health problem of our time, is not mentioned. Failure to prioritise dementia will be a disaster.

A new government must:

● Require implementation of the national strategy by its instructions to health and social care services and inclusion in tier 1 of the NHS operating framework, making it a top priority.

● Produce quality standards that all commissioners and providers must meet.

● Invest in a clear dementia research and innovation strategy.

● Provide a coherent approach to the dissemination of evidence and best practice leading to service re-design with integration of health and social care.

Ruth Cartwright, England joint manager, British Association of Social Workers

BASW welcomed the government’s dementia strategy but asked two questions to which we still do not have satisfactory answers.

One was about funding: would enough money be allocated for new services and for the training of people working with people with dementia and their families; and, given that money was allocated, would it be ring-fenced?

The latter point is crucial considering what seems to have happened to the ­carers’ strategy monies for respite care – it has ­disappeared into primary care trusts’ general coffers.

The other question is why dementia, clearly an organic condition and an illness, suddenly seems to be deemed a social care condition when any funding for care is concerned. This means people with dementia and their families and cash-strapped social services departments are paying for precious care at home and in residential settings when the NHS should be funding it.

So BASW would like to see more and fairer funding, especially for training so that people with dementia are treated with respect and dignity. We would also like our skills and expertise as social workers in this area valued and appreciated.Ken Clasper, who was diagnosed with dementia in 2004

Ken Clasper, who was diagnosed with dementia in 2004

Dementia has been left behind for too long, but the strategy is just starting to pull it back to where it should be. We need to carry on with that.

The government needs to make sure there is more money spent and to ring-fence it.

I’m well aware of the financial state of the country but, if people are diagnosed early and are allowed medication, they can carry on working and pay taxes.

I wasn’t allowed the medication so I had to retire early but, if I’d had it, I could have continued working and paid money into the system, which is good for everybody.

It’s not what you would call a trendy illness and therefore other conditions get more priority when it comes to research money. It would be good to see more money being put aside for research in the hope that we would get better quality medication and better care.

Barbara Pointon, who cared for her husband, Malcolm, until he died in 2007

With everybody living longer there will be more people with dementia. Soon every family in the land will have someone who is affected by the condition.

I would like to remind the government that two-thirds of people with dementia are cared for at home and at the moment there is a lot of important work being done in improving the skills of the paid workforce. In fact, we need to be spending money supporting the carers who are the unpaid workforce. That includes regular breaks because, in the middle and later stages, dementia needs 24/7 total vigilance.

Whoever is in power I would like them to continue to honour and develop the dementia strategy. Not enough has been said about the middle stage which is about perplexing behaviour patterns. I made so many mistakes and, if only I had had someone to tell me what it was like for Malcolm, he wouldn’t have had so much medication.

A lot of the health stuff is all about competencies and I’m in favour of that but, if you’re not careful, they can end up with tick boxes and mechanical means of care when a special empathetic approach is needed. It’s not what we do, it’s the way that we do it.

Jenny Owen, president, Association of Directors of Adult Social Services and co-lead, national dementia strategy

We know from the strategy just how many people have dementia and that, because of the rising population and the growing numbers of people over 65, there will be many more people with the condition in future.

I think there has been a good level of cross-party recognition over the need to improve dementia services. Obviously, the incoming government would need to decide what its priorities are in terms of investment in a difficult economic climate.

The government has given people the recommendations but it needs to think whether it should be putting funding into specific areas. There has been some funding for primary care trusts but there are issues about whether that funding has reached the right place.

I would like the work of the national implementation team to continue because it supports local health and social care. I would like it to be clear that in local areas this must be a priority and that people in positions like myself understand how to take it forward.

• See more about implementing the dementia strategy

This article is published in the 25 March 2010 edition of Community Care under the headline “Why dementia should be an election issue”