Dementia — Debate

Part of the debate – in the House of Lords at 12:45 pm on 25 June 2009.

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Photo of Baroness Greengross Baroness Greengross Crossbench 12:45, 25 June 2009

My Lords, I congratulate my noble friend Lady Murphy on securing and introducing in such a brilliant way this important and urgently needed debate. The speeches I have heard have also been moving. When dementia hits, it is a tragedy for everyone, not just for the patient but for their family and friends. Therefore, the National Dementia Strategy is extremely welcome. Much of it is excellent and gives us hope for the future. Sadly, the promised review of anti-psychotic drugs has been delayed and, as has been pointed out, research is not an integral part of it.

I agree with the noble Baroness, Lady Gardner, that dementia is not quite as much of a taboo subject as it previously was and that it is now recognised. We have heard that funding for research is just over 2 per cent of our total research spend. As the noble Baroness, Lady Murphy, said, that is eight times less than is spent on research into cancer and heart disease, but we know that the incidence is far greater than both of those. I still think it is shaming that in the United Kingdom, we spend £13 per person on dementia research per year, whereas in the United States the spend is £121 per person. I hope that the Minister can assure me that the forthcoming research summit, led by the Government with the Medical Research Council, will lead to a comprehensive research strategy. Cross-sectoral and cross-disciplinary collaboration are essential. We need a really broad research strategy, including a reversal of the totally inadequate number of trials to ensure that prompt translation of scientific developments into new drugs and treatments can be assured.

We also know that apart from the huge scale of suffering, the economic consequences of dementia are enormous. In the UK, we already have 750,000 people with the disease and 53,000 new cases are diagnosed every year. The demand for care will increase exponentially and we know that at present only 30 per cent of people suffering from dementia are in care homes. Most are in the community. As the noble Baroness, Lady Pitkeathley, pointed out, most are cared for by family and friends.

We cannot guarantee that that situation will continue; that people will be able or willing to continue to do that job. Certainly, many people are hindered by a lack of support. A lot of the paid carer support services are often not fit for purpose. Families and other carers face a huge number of disadvantages, even in getting adequate advice and guidance. The dementia strategy must remedy that situation. The strategy does not adequately address the challenges and possible opportunities presented by the personalisation agenda. I hope that the Minister can reassure me on that as well. As we have heard, the development of our workforce must be prioritised and training must be a mandatory part of care through commissioning. Again, I hope that the Minister will reassure me that this will happen.

People who work in the field of dementia are low paid and invariably poorly qualified. We know that low pay and poor qualifications lead to a skills shortage. It is better and more socially rewarding to get a job at the Tesco cash till than working in many homes. People leave when they can. Care in people's own homes is often bought by the care companies and agencies by the hour or even by the minute. This has to be reversed. Care needs to be based on achieving quality of life. It has to be outcome-driven, not task-driven. That is another priority.

We have heard that there is a problem in care homes with the overuse of anti-psychotic medication. I was part of the All-Party Group on Dementia inquiry report that pointed this out. Similarly, we have to look at the use of restraint in homes and hospitals, which can be both overt and hidden. Restraint can easily slip into abuse. Only adequate training can prevent that happening.

On pharmaceutical treatments and prevention, Professor Ballard commented earlier this month that the use of cholinesterase inhibitors and amyloid cascade interactors has been delayed by poor prioritisation and funding. We need to consider that seriously.

We have heard from noble Lords about the discrimination against older people that still persists. Otherwise, 50 per cent of patients would not be without a formal medical diagnosis. Labelling the care they need as social care is proof of that discriminatory prejudice against older people. The National Audit Office found that GPs are also not sufficiently trained to recognise early symptoms or to manage the disease. It is difficult, but people should be made aware of their diagnoses. For that to happen, GPs—apart from training—have to know that some treatment and support will be available. Otherwise, they are not going to add to the distress of their patients by diagnosing them when nothing will be done to help them. The widespread introduction of memory clinics across the UK in this strategy should enable earlier diagnosis and treatment.

We have to pay more attention to those people in the final stages of dementia who need palliative care. There are other worrying trends. The noble Lord, Lord Rix, has mentioned one. The Social Care Institute for Excellence reported recently on a growing incidence of younger people suffering from one type of dementia, Korsakoff's syndrome, through the overuse of alcohol. We have to watch for new types of dementia that are emerging.

The dementia advisory role in the strategy is a welcome development. It should provide a point of contact and support. At present, in spite of the huge amount of work done by the charities—they do a wonderful job—people and families often wait for up to three years before seeking help.

We can learn an awful lot from other countries and we should not resist doing so. The French have produced their third national Alzheimer's plan and there are points in that we could learn from. In the Netherlands, there are specialist care home physicians.

We need a set of goals to which we aspire. Let us aim to have real improvement in diagnosis, treatment and care for dementia patients within the next five years, and immediately integrate health and social services in this field while developing specific skills and training at all levels. For this we need a major public awareness campaign that places dementia in the forefront of public priorities. We probably also need a dementia tsar or champion—I know this is being considered—to lead our country in awareness of dementia and acceptance of the challenges it brings.

One of our leading care home providers has called dementia the "silent epidemic"—an adequate description. We have to remove any remaining stigma and lack of interest that leads to this sort of discrimination. We must be determined to give dementia the priority it deserves. We need a national framework together with local and enforced standards in care. The role of the Care Quality Commission will be critical in looking, for example, at healthcare in residential homes, where so many people with dementia live.

People with dementia are among the most vulnerable in our society. Action and total commitment are needed now. It is the least we can expect.