Dementia — Debate

Part of the debate – in the House of Lords at 11:54 am on 25th June 2009.

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Photo of Baroness Pitkeathley Baroness Pitkeathley Labour 11:54 am, 25th June 2009

My Lords, it is a great pleasure and honour to follow the noble Baroness, Lady Murphy, and I congratulate her on securing this important debate. The House is indeed fortunate to have someone with her expertise and experience.

We are all living longer and that is good news. We are living in a world where one in four children born today will live to get their 100th birthday telegram from the monarch: I wonder if the Queen will have to rethink the number of telegrams she sends. In 2007, for the first time in this country, pensioners outnumbered children, and within 20 years, more than half of us will be over 50.This change in society is a great challenge but also a great opportunity. It is a cause for celebration that we have the chance to live longer, a time to take advantage of a range of prospects not afforded to previous generations and to share experiences across generations. However, while we celebrate, we must be clear that the incidence of dementia will increase with age as the noble Baroness has reminded us. In parenthesis we should perhaps remember that it is not always older people who are sufferers; there are many distressing instances of early-onset dementia given by the Alzheimer's Society.

It is good news that this Government take the issue seriously and that they have published a strategy earlier this year. As someone who has spent many years working with carers, I was very glad indeed, and welcome most warmly, that the strategy recognises that families are an important resource—probably the most important resource—in providing care for somebody with dementia. The Government have recognised the heavy and difficult challenges that the carers of those with dementia often experience and the need to deliver better support.

The strategy sets out important steps in improving dementia awareness and information provision to help the public, carers and sufferers to better understand, prepare for and cope with the disease. In addition, there is a welcome recognition of the role that technology, like "telehealth" and "telecare", can play in maintaining independence for dementia sufferers and flexibility for their carers.

No one could disagree that there should be better knowledge about dementia and that the stigma that surrounds the conditions should end. We should remove the perception that dementia is a natural consequence of ageing and that nothing can be done for people with this condition. In that regard, there needs to be much better education and training for professionals. This should not just be for people providing dementia services but for other people in the NHS too. Certainly, much more sensitivity about this condition is needed in general hospitals.

We must ensure that people with dementia are correctly diagnosed. Currently, I believe only one third of people with dementia ever receive a diagnosis. This puts excessive strain on the carers who do not get the support or information they need. Neither is their expertise recognised. I have lost count of the number of carers who have said to me, "I took him into hospital or to the day centre and nobody asked me about him, nobody asked me about how to deal with him and what his medication is and so on. They just said, 'You run off now, dear, and have some good respite'". For carers with a great deal of expertise in this area, this is demeaning. Certainly, we all understand that people with dementia, and their carers, should get easy access to care, support and advice, following diagnosis. I very much hope that the dementia advisers set out in the strategy will help this.

Much progress has been made with carers in recent years. I applaud the Government for the lead that they have given, as well as campaigning organisations such as Carers UK. However, they will only be adequately supported in this arena if we link the dementia strategy with the national carers' strategy. The dementia strategy focuses mainly on the health and social care sector in supporting people with dementia. Carers also need a decent income, the ability to continue working, back-to-work support, health checks and better support from the health service for their own health. They need better information about housing and about their rights, and skills and confidence, too.

The dementia strategy says that support for carers needs to be delivered through the national carers strategy but it does not mention work or income. We need to ensure that the key professionals who are implementing the dementia strategy have a clear idea of their responsibility under the carers strategy and of how it can help carers. Conversely, we need those who are implementing the carers strategy to ensure that carers of people with dementia are better supported. If these two strategies do not work together, the outcomes for carers of people with dementia will be considerably weaker.

One example that was referred to by the noble Baroness is the £150 million that was given to primary care trusts to provide respite care. There is a great deal of confusion about this money. A few primary care trusts, we understand, have indicated that they will be spending all or some of their allocation on breaks. Many are confused and have not yet entered into discussions about what to do, and many acknowledge the extra funding but do not want to spend it on carers. I heard of one PCT which set up a planning group on how to use the money before realising that it was not ring-fenced. When it realised that, it said, "Ah. Well, we don't need to spend it carers at all, then". This is not satisfactory, so I hope that the Minister will tell us, while acknowledging that unpaid carers deliver the majority of care to people with dementia, what additional steps the department will take to ensure that carers of people with dementia benefit from the whole New Deal for Carers strategy and are better able to access not only funding but information.

The noble Baroness, Lady Murphy, mentioned the Green Paper, which we all await with baited breath. She thinks that it will come next Tuesday; funnily enough, I heard that it would be the following Tuesday—but never mind. Does the Minister agree that a long-term settlement for social care is essential to ensure full delivery of the National Dementia Strategy? People with dementia, as the noble Baroness, Lady Murphy, told us, are hardest hit by the system of charging for care. Will the Green Paper set out options for reform which will deliver a better deal for people with dementia and their carers? I have heard it said that what we are requiring and expecting from this Green Paper is nothing less than a new Beveridge.

In commending the strategy, I also point up its limitations; principally, that while it is very good that it sets out a plan of action that should benefit the half a million carers looking after somebody with dementia, it needs to be combined with good implementation of the national carers strategy if it really is to benefit those with dementia and their carers.