---

Dementia

My Lords, I am grateful to my noble friend for allowing your Lordships to take part in this important debate. I must disillusion Members of the House about the telegram from the Queen. You already have to write and send your driving licence and your passport if you are to get a telegram from the Queen. I know this because I have a sister who has just passed her 100th birthday and has neither a passport nor a driving licence, not having been able to drive for some years. However, she got the telegram in the end because I rang up and said that I would vouch for her identity, so you may get a telegram, but you do not get one automatically. I was very interested in the strategy and glad that the Government published it. The word "stigma" was used in the document and by some noble Lords who have spoken. I do not think that it is quite the right expression. I do not think that there is a stigma attached to dementia; rather, I think that it is a taboo subject, which is rather different. It is taboo because it is so extremely horrible and people are not willing to talk about it. This is an important distinction. In a recent paper from the University of Wisconsin-Madison, two doctors demonstrated statistically how beneficial, both socially and financially, was early intervention with dementia. They recommended that drugs should be given at an early stage to lengthen the life of sufferers. I do not know whether these were anti-psychotic drugs. There must be more research, as everybody has said, and much better knowledge about the effects of whatever drugs may be given—I hope that we may hear more about this later—to slow down the progress of what is a terminal illness, albeit one that may last for years. The doctors from Wisconsin showed that, for early intervention to work—and this is common sense—early diagnosis is essential. However, I do not underestimate the great difficulty of early diagnosis. The noble Baroness, Lady Perry, has pointed out that sometimes the most intelligent people are diagnosed latest, because not only have they had a very active and interesting life, but also they are capable of developing strategies to disguise what they know are defects—even defects in their chess playing, but certainly defects in their social behaviour. The story told by the noble Baroness, Lady Thomas, about her mother offering sherry, is typical. Many people with severe and far-progressed dementia retain a very agreeable social manner for a long time and will always be polite to visitors, even if they do not have the foggiest idea who they are. I always find touching the stories from people with direct experience of dementia. They are also difficult to bear when one thinks of one’s own possible future. The trouble with early intervention is partly that people develop strategies and partly that they are in denial. We know that the older population dread the onset of dementia far more than they dread cancer or heart disease: it is the dread of everybody’s life as they get older, which is why the subject has been taboo. We should therefore be grateful for the publication of the strategy. However, I was particularly alarmed to detect in the strategy—optimistic and useful though it is—an assumption that most people who develop dementia will have someone living in their house to look after them. Everything that was said seemed best fitted to the case of somebody with a spouse who will heroically take charge and become a carer. Early diagnosis is especially difficult in the case of people who have no one living with them. Huge numbers of people live by themselves as they get older—a fact that is seldom noticed by people who want to deliver parcels, or expect there to be someone at home to welcome the plumber. People who live by themselves are often in denial—they will not notice changes—and their family who come to see them do not live with them, so may not notice the early signs of dementia. This brings me to something that is terribly important. The possibility of early diagnosis rests with the GP. Most GPs, when people go to see them, understandably attend to the problem that the patient has gone with, which may be anything. They do not have time to assess the general state of the patient. This is partly because they have five minutes or less to talk to them, but partly also because so many GPs now do not know the patient well. They know their case history, but they do not know the person and cannot see signs of deterioration in the way that, in the old days, the family doctor would have done. There is an enormous responsibility on the medical profession, in particular general practitioners, to be alert to possible signs of dementia and to question the older person who comes to see them about how their life is going and whether they have any worries. That is not often done, but it would help early diagnosis if doctors learnt, first, the signs of dementia and, secondly, the necessity to probe when making their diagnosis. The main reason why I feel so strongly about early diagnosis is that, when the disease is diagnosed, the person should be allowed to talk about their future and make a specific advance decision about how they want their life to end. This seems to be of the greatest possible importance. What I seek from the Minister is the assurance that, if someone has been diagnosed with dementia, that will not in itself constitute a diagnosis of mental incapacity. If it did, the advance statement would be of no use. I would like to see a situation where we can make an advance statement about our own death before the steep decline that comes at the end of dementia has set in. I would like the Minister to say something about that.