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Dementia

The hon. Gentleman has taken a close interest in such issues for a considerable time and I share his analysis. Costs are shunted away from the formal care system in the health service—that might be accelerated as a consequence of NICE’s decisions—and on to individuals. The costs become hidden, but the consequences return to haunt us in the public domain, because they lead to increased health care costs for those who have taken on the caring burden. The saving is therefore illusory, not real. If a disease costs as much as dementia does, it is common sense to commit more research to find ways of preventing and curing it. The establishment of the dementias and neurodegenerative disease research network has of course helped to provide much-needed infrastructure and follows the template that has been used for developing cancer research. However, there is a still a need for more fundamental research, because without a better understanding of the basic science behind dementia, the potential of the network is reduced. As one researcher put it to me recently:"““Funding the network is like funding the stage in a theatre, but for dementia we need many more players to put on the show to do the research.””" If Alzheimer’s is a Cinderella in the research world, non-Alzheimer’s dementias are like Cinderella’s poor relations. For example, the Medical Research Council is funding only one clinical trial in dementia and no trials investigating the treatment of non-Alzheimer’s dementias. Even basic treatment questions regarding the use of aspirin or anti-hypertensive treatments in people with vascular dementia, for instance, remain unanswered. It is not just in research that the Cinderella status comes to the fore. The treatment of dementia was dealt a heavy blow two weeks ago, when NICE published its guidance on Alzheimer’s drugs. Not surprisingly, the decision has provoked a huge outcry from patients and carers groups, clinicians and hon. Members from all parts of the House. Placing strict conditions on when the dementia drugs can be used will have a hugely detrimental effect on patients, families, carers and health care professionals. Having issued positive guidance in 2001, NICE has changed its mind, leaving people with mild Alzheimer’s in limbo, condemned to deteriorate before there is any hope of receiving treatment. The three anticholinesterase drugs—I will give their proprietary names—Aricept, Exelon and Reminyl, are to be made available only to those who attain a mini-mental state examination score of between 10 and 20 for cognitive ability. The test is a key part of NICE’s recommendations for future access to the drugs, but it is fundamentally flawed. It is based on language skills, but many seniors who begin to experience dementia are from ethnic minority populations and their first language is not English. They revert to their first language in dementia and cannot access the test or demonstrate where they are on the scoring system, so they are discriminated against. People are also discriminated against by the tests according to their level of education. The test should not be the sole determinant of access to the drugs. There was sufficient recognition in the 2001 guidance of an area of judgment and doubt about such tests, which were regarded as a starting point for determining whether the drugs would be beneficial for those with that sort of dementia, not a finishing point. However, NICE appears to have said, ““This is the narrow gateway through which you must pass.”” In discussions with clinicians, however, the point has been made to me that the scale is too crude to capture the complexity of the disease accurately and to understand the fine lines to be drawn between mild and moderate dementia. As a consequence, we shall be consigning to ever-growing deterioration many who could benefit from the drugs and should be receiving them.