Dementia

Baroness Pitkeathley Excerpts

Thursday 28th June 2012 Lords Chamber

[Baroness Pitkeathley]

My Lords, I thank my noble friend Lord Touhig for securing this debate and for introducing it so passionately. In your Lordships’ House, we often talk about the ageing of society. People are living longer—a lot longer—and this is a subject for rejoicing and a tribute to developments in society and health provision. However, as we have heard, one of the other consequences of this development is undoubtedly the increase in dementia. We are all aware of the figures and I will not repeat them. Although there have been some welcome developments in recent years, not least as a result of the publication of the dementia strategy and, latterly, the Prime Minister’s commitment, there is still a very long way to go. Most people with dementia and their carers are not living well.

Although we have made progress, we still have a lack of awareness. Dementia is not something we really want to discuss, still less plan for within our families. I always remember when I was leading the carers’ movement that we managed to get a dementia storyline placed in one of the leading soap operas. However, it did not last long because the issue of incontinence might have had to be faced and the producers felt that the viewers did not want to know about having to wash soiled sheets.

There are also great difficulties in diagnosis. Let us not forget that up to 40% of acute hospital beds are occupied by dementia patients, but of that number as many as 80% have their condition diagnosed after they have been admitted. They are, therefore, being nursed and treated by non-specialised staff who may have little or no experience of the condition and of whom it is unfair to ask the skills and competences which such patients need.

It may be that GPs are reluctant to diagnose dementia because, as the noble Lord, Lord Wills, has reminded us, they believe there is no cure or because they do not want to depress either the patient or his or her relatives. However, without proper diagnosis, there is no hope at all of putting patients and their families in touch with the services they badly need. We should not forget either that the number of people with dementia that each individual GP sees during their career is relatively few and we should not expect them, therefore, to be an expert in diagnosis. What we can and should expect is that they are willing to make referrals to experts who can make a diagnosis. Talk to the family of any dementia sufferer and they will almost invariably tell you a long and distressing tale of how long and how much persistence it took to get a proper diagnosis.

The third thing is the lack of support. Dementia can be coped with but support services are vital and they are in short supply, and I am afraid they are getting shorter. Caring services are in crisis due to lack of funding. Talk to anyone engaged at the sharp end and the story is the same. Fewer and fewer older people, including those with dementia, qualify for local authority support, and many services provided by the community and voluntary sectors are disappearing. Those services especially under threat or gone already include those aimed at preventing those with low-level needs from reaching a crisis situation.

Let me tell your Lordships about Raymond, who is 85 and cares for his wife, Margaret. He says that Margaret,

“has been diagnosed with dementia. My caring changes from day to day and week to week. You are living on a knife edge—you don’t know what the next hour or day will bring … I have a nurse who comes to get”,

Margaret,

“up at 7.30 in the morning and then puts her to bed at 7.30 in the evening”,

but her visits are now only 15 minutes long—and Raymond has been told that they have to be cut down to nine minutes in the next year. Margaret,

“goes to a care home from 9.30 until 3 in the afternoon”,

every Wednesday,

“which is a great help. They have games and entertainment. I can get down to my jobs while”,

Margaret is away. It used to be Wednesday and Thursday, but it has been cut down to one day a week. He goes on to say:

“Caring is very tiring. I try to cope to the best of my ability but I find I can’t take it in my stride. Life is very stressful, especially the practical work. I prepare meals and do the housework … I pay someone to sit in with”,

Margaret, once a week,

“while I go out … I go to a carers’ meeting on a Friday. It’s like opening another door. I can get back to normal. The tension goes away and my head clears. We talk among ourselves and there is a pleasant atmosphere. We all have a tale to tell. I find out how other carers overcome their problems. It’s an escape valve. You are with your own kind—people who know what you are experiencing. Without the day centre and the carers’ group I couldn’t manage … I don’t know what I would do”.

Although Raymond is 85, he does not want to give up caring for his wife. However, unless he has what he calls his escape valve, what will happen to him? I have to tell your Lordships that the day centre provision is under threat and the carers’ group, which was set up by a local authority worker, is now run by carer volunteers.

The noble Lord, Lord Touhig, reminded us how important it is to support the families who provide the bulk of care for dementia sufferers. As I often remind your Lordships, they are saving the nation £119 billion a year, so it is in all our economic interests to keep them in a caring role. But it is also important for the future because we will need many more carers. If they are not also going to become a drain on our economy in their old age, we have to support them now and enable them to stay in paid work as long as they can. The recent report published for Carers Week, In Sickness and in Health, tells a very distressing story about the health of carers as a direct result of their caring responsibilities. No fewer than 87% of them said that caring had a negative impact on their mental health and 83% on their physical health.

Carers and the people they care for already pay for services. If they are not eligible for social services or their income is above a threshold, they have to pay, which can range from domestic assistants to care workers. Services can be arranged with the local authority or trust, and others through private companies. This is often the cause of financial distress for carers. With the introduction of personal independence payments and changes to employment and support allowance, this may lead to substantial numbers of people losing benefits, which may mean that the person being cared for can no longer purchase the service. That means that carers will have to find alternative ways in which to pay for a service by dipping into their savings, getting into debt or simply going without.

In the current economic climate, there are concerns that an already struggling system is going to be further hit. Cuts to services will only make matters worse. For some carers, the ultimate impact will be giving up caring themselves because their health has deteriorated so much that they can no longer do it. That comes at a significant cost, as the person they care for will need to be admitted to residential care. For others, they are storing up serious problems for their future. Who will be there to provide the care in their place, if carers can no longer carry on?

I have three questions for the Minister, who I know is very aware of carers’ problems. Indeed, I was most grateful to him for attending a carers event that I hosted last week and for taking time from his very busy schedule to speak to carers and hear their problems. I appreciate that and know that he has always been concerned about this issue. Let me put the three questions to him. When will the Government act on the issue of sustainable funding for social care? The reform of the law on care is very welcome and I understand that we will hear about that shortly in the White Paper but we have to address properly the funding issues. How can we ensure that there is ongoing support for carers, including giving them a break—the kind of break that Raymond has just once a week that enables him to keep going? We heard rumours at one point from one of the Ministers that the Government were planning to enable GPs to prescribe respite care for carers. Is there any truth in that? On the subject of general practitioners, how in the new structure of the NHS do the Government plan to monitor the performance of GPs with regard to carers, since they are so important for them as a first port of call?