Health: Dementia

Baroness Greengross Excerpts

Wednesday 22nd January 2014 Lords Chamber

[Baroness Greengross (CB)]

My Lords, I congratulate the noble Baronesses, Lady Gardner and Lady Turner, on their excellent and very moving speeches.

I start by saying that I have rarely been as proud of being British as I was recently when this country—or, rather, the Prime Minister, because of his personal commitment—secured here in London the G8 summit on dementia. That was an enormously important achievement. I say that with real pride because I chair the All-Party Group on Dementia. We are an extremely active all-party group that has produced a lot of reports on many areas of interest. We have looked at the fact that dementia patients stay longer in hospital when they go in for a fractured femur and we were part of the campaign to reduce the use of anti-psychotics. We have had many quite successful inquiries and policies have radically changed because of the work of colleagues on the all-party group. However, there is still a huge way to go.

Dementia is certainly the new cancer, as the noble Baroness, Lady Gardner, said. It is not very long ago that you could not really talk about it. The interest in, and commitment to, doing something about dementia now is really important and it is excellent that we have got that far. There are still, however, many problems. Dementia is a disaster if you are suddenly diagnosed. You have no idea how to cope with the diagnosis or where to go for help. You are absolutely struck by your inability to move forward. However, it should not be seen in that way because a lot can be done. Of course we do not have all the research that needs to be done—the G8 made that clear. As a result, however, some very hopeful research work is being undertaken in the United States and the money is beginning to flow in as well. But there is still a long way to go on research.

In this debate we are looking at what has to be done now to alleviate the situation of people when they receive a diagnosis or even before, when they suspect, because of memory loss, that something is going wrong. It is a progressive and a terminal disease which, at least at the beginning, attracts social care funding and not health service funding. Over much of their life course many of those who have the disease will experience problems in getting financial help so that they can live adequately. It can be a disaster and we need to do something now. The noble Earl is doing a great deal to ensure that the Care Bill, which has now gone to the Commons, will help many people with dementia. However, a huge amount needs to be done.

We have to see dementia as one element of the comorbidities that many older people face—and it is usually older people, as the noble Baroness said, who get a form of dementia. We have to concentrate on the fact that if people have dementia, the other conditions from which they suffer are sometimes ignored, or vice-versa. Dementia also has to be seen in the light of the huge stigma that still surrounds its diagnosis. For many people, even GPs, it is better to ignore it than to diagnose somebody when they do not feel that there is a great deal they can do to help. Many people try very hard to forget that it is happening, and if they forget it is happening, their quality of life will be reduced enormously.

Much can be done. We have to take into account that local commissioning is an excellent way of improving the situation as long as it works properly. I chaired a meeting this morning with commissioners to look at what can be done to improve the lives of people right at the beginning when they know that something is wrong, before they are diagnosed and immediately afterwards. As soon as they feel that there is some memory loss or they begin to worry they need to get help and not wait for a diagnosis. They need to get help and start the process of making a plan of action and support for that person, the family and the wider community where possible. Things can be done to improve the quality of life.

We know that much can be done in preventive care, particularly with vascular dementia. A change in lifestyle can help a great deal to delay the worst aspects of that dementia and, indeed, some of the others. However, not all can be helped in that way. What is necessary then is the coming together of support mechanisms—that is, people—who can really help.

We have to be certain that the good measures in the Care Bill are introduced so that we have a co-ordinated plan of action for anybody who is diagnosed eventually with some form of dementia. The right now of carers as well as of patients to a proper assessment leads to action, and this is not easy. It is not easy for local authorities and not easy for commissioners in healthcare, because there is a shortage of funds. However, we have to find the funds because dementia is a priority. It is a terminal disease, so it is extraordinary that it gets primarily social funding from local authorities rather than health funding. We have to integrate. That is what the Care Bill is aiming to do, so we have to give it our total support.

Memory clinics need to be the first place that people go to when they feel there is something wrong. That is when the support services need to be brought together to help somebody to find their way through the maze of services. They need to inform themselves about them and make sure they are available to them. That is where other people in the local community can do so much, as the noble Baroness, Lady Turner, said. When there are good services around that can be brought in early, we can get this as right as possible. Even before the memory clinic people have to start recognising that something is wrong, and then you need to have a co-ordinated approach to care. That is essential. We need to have a navigator/co-ordinator who can go in and advise that person and that person’s family how to get the best care that is available locally so that their quality of life does not deteriorate. When they are diagnosed, this is even more important, so we need a navigator/co-ordinator of all the services. The services need to be brought together so that they are not difficult to find.

We need people to understand that post-diagnosis, life can be very good. One of the participants at the meeting with about 30 commissioners this morning was an early-onset dementia patient. He was diagnosed at the age of 49—10 years ago, I think. He was still perfectly capable of taking a very active role in the debate we were having because he had the right support around him all the time. That is essential. You need one place where all the services are available, you need one navigator/co-ordinator to provide those services for somebody and you need to convince that person and the carers that life can be good for a very long time. We need to have contact with all the advisers straightaway, one service co-ordinator and a strategic service integration scheme. That is key. We need one location, one centre where all the services are brought together and, rather like when you have a baby, you need to have a list of the services given to you so that you know who to ask about everything. We can do that.

We can embed personalisation in what we do. We can look to the groups that really cannot cope, and which have no idea of local services, and to our minority groups, some of which do not even have a name for Alzheimer’s or dementia. There are huge problems there. We need to focus on those people. We really need above all to listen to, communicate with and involve people with dementia every step of the way because they have not lost their humanity and their ability to be part of society. We have to trust them to know what they need and want and bring the services close to them so that they can benefit from the many important new ways of delivering services which will be enhanced, I hope, by the Care Bill when it becomes part of our legislation.