Dementia — Debate

Part of the debate – in the House of Lords at 11:38 am on 25th June 2009.

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Photo of Baroness Murphy Baroness Murphy Crossbench 11:38 am, 25th June 2009

My Lords, the average age of Peers in this House is 68, so I can tell noble Lords here today with some confidence that one third of us will die with dementia. It is us next. Dementia is the most feared illness of all. The writer AA Gill memorably described it recently as,

"the unspeakable plague of our medically privileged generation".

Dementia is dying of the self, bit by bit. Not just memories go—indeed, that is often the easiest thing to cope with—but our speech, emotions, ability to reason, to retain social relationships and to participate in life; they all desert us.

I should declare my interest at this point. I am a psychiatrist, and for 25 years was professor of old age psychiatry at the University of London. That is a rather grand title but actually, much of my work was as a jobbing community psychiatrist for older people living in Lewisham and Southwark, working with the local authorities for patients and their families. Half of all my patients had one of the variants of dementia. I will spare noble Lords my well honed lecture on 150 different causes of dementia and, indeed, most of the facts and figures. Those I see around me here today are too well informed to need me to do this. I am also proud to be a vice-president of the Alzheimer's Society, which has done so much in these past 25 years to bring this dreadful disorder into the sunlight.

When I was younger, I was often asked why I chose this field, which carried so much stigma for those who undertake it as well as the sufferers. Of course, one's personal motivations are never straightforward, but mine owed much to growing up at home with my grandmother, who developed dementia in her mid-80s, and gradually becoming aware of the terrible stress that that imposed on my parents. Later I came under the influence of one of the truly great visionaries of his medical generation, Tom Arie, whose influence on service developments for older people, both here and abroad, has been remarkable. He taught me the fun, the fascination, the extraordinary personal rewards, that come from working in a highly professional multidisciplinary service with patients and their families.

The National Dementia Strategy has the potential to be one of this Government's triumphs. It is a splendid piece of work, achieved under the excellent leadership of Professor Sube Banerjee and Jenny Owen, to whom I pay tribute. Its provisions are comprehensive and it is all good stuff. I do, however, worry about the £150 million notionally allocated from central funds to support its implementation; it will not be ring- fenced by primary care trusts, so we can assume that in some places even this small amount of pump-priming money will be rapidly diverted elsewhere the minute the expected NHS period of austerity begins to bite. How do the Government intend to monitor the spending and the progress of the implementation of the strategy?

There is still precious little understanding by health and social care services of the impact of dementia on families or on the economy. The £17 billion spent annually is the direct costs of care on those already diagnosed. Well over 80 per cent of the money spent on adult social care is spent on people with dementia, although most local authorities do not seem to have twigged this yet. We even waste £200 million or so in acute hospitals on inappropriate care.

If we are to begin to get services in to help families in the early stages, then diagnosis is the key, as the strategy recognises. Like any other neurodegenerative disease, dementia and its clinical precursor, cognitive decline, need to be diagnosed and treated. I used to rage at the NHS and local authority services which said my patients must be "assessed", going direct for a social care package, when everyone else got a diagnosis for care and treatment. This does not happen to people with Parkinson's and motor neurone disease. Too often, people with this catastrophic disorder have been dismissed as a social problem to be tidied up. About half of all people with dementia will not get a diagnosis and there are some very perverse reasons for this.

The first is straight ageism—a false belief that dementia is senility, and that senility and ageing are synonymous. It is worth reminding ourselves that even at 95 you have a better than evens chance of being mentally fully intact, and the good news for the real stayers is that at 100, the odds are even slightly better. That is the survival effect. But one major disincentive to a written diagnosis is the funding arrangements for care. In theory, you cannot go into an ordinary care home if you have a label of Alzheimer's or one of the other named dementias. You can go in with "a little bit of memory impairment" and a smidgen of cognitive decline. So of course, we professionals pretend. But in reality no older person now goes into care unless they have serious cognitive impairment and dementia; we just call it by a euphemism.

If you have a nasty label such as Alzheimer's, you are supposed to go to an expensive EMI home rather than an ordinary one, which is probably of no better quality than an ordinary care home, and quite often worse. The family does not want that, the hospital waiting for a discharge will not want that and the local authority certainly will not pay the extra. We need to be honest about it and we will not be until the Government sort out this funding problem.

Dementia is a terminal illness—patients survive only two to three years in their final care home. Homes are, in effect, providing end-of-life care for patients with a neurological disease the way hospices provide care for terminally ill cancer patients. The difference is that you get hospice or hospital care free but if you have dementia you have to pay for your own care until your money has more or less run out. This is what the Alzheimer's Society has called the "dementia tax". For care at home, 26 per cent pay for it all themselves; another 42 per cent pay a significant proportion. More than half of those in residential care pay more than £300 a week towards the costs of being cared for. Can you imagine the outcry if the Government decided to charge hospital patients that amount?

I have never campaigned for social care to be provided free out of current taxation. I think rather it would be better if all health and social care was provided on a level playing field, with a mixture of state and personal investment. I am a fan of the minority report by the noble Lords, Lord Lipsey and Lord Joffe, on the Royal Commission on Long Term Care and very attracted to Sir Derek Wanless's analysis, Securing Good Care for Older People, published in 2006. We still wait with bated breath for the social care Green Paper—I believe it is expected any day now. I hear a rumour about next Tuesday, but it had better be good as social care is in meltdown out there. There are so few services, and often of such poor quality, that these new dementia advisers, described so well in the strategy, are going to have a very thin time trying to put a package together. Some of the NHS and local authority commissioning practices have been disgraceful.

Joan Bakewell recently commented in the Times on the online e-auction system of tendering care for older people with dementia. Costs are driven down to rock bottom, meaning that authorities accept levels of care we would not tolerate in a well-run zoo. She is right. These were her words, not mine.

The training of both domiciliary and residential care staff is almost non-existent. They have no idea how to manage behavioural problems. We have a high turn-over of transient, migrant staff who often barely speak a word of colloquial English. It is time we insisted that staff learn to speak fluent English. It is time we learnt to value them too. Staff are extraordinarily poorly paid at minimum wage levels; we simply do not value sufficiently the vital work they do. The lives of the residents are often starkly empty as a result of this.

Once a person is in care they get less access to healthcare than at home—less nursing, less physio, less speech therapy, less chiropody, less doctoring, less mental health nursing. Often the primary care trust feels they do not need to access community health services because they are somehow being paid for as part of the private care package. Authorities pay far more for similar residential care for younger adults with disabilities. This is straight age discrimination and perhaps we will need to challenge this under the new equality legislation.

I know that after this speech I shall be inundated with letters from care homes proud of the quality of their care. It is true there are some reasonable ones but they are a minority and I would guess that there are many noble Lords here today who have tried to find a suitable care home for their own parents, only to be disappointed and disheartened by the quality of what they saw around them. Training is vital. Has the Minister had an opportunity to read the report of the All-Party Parliamentary Group on Dementia on training needs called Prepared to Care? That seems to me to be a good start on training requirements but we have to solve the workforce issue.

Turning to research, the Government are holding a summit in July with the great and the good, academics and funders, to talk about possibly having a plan. I hope it is a plan for a proper strategy for research development. There is more money than ever before in research programmes into the science of the dementias, about £32 million, but the Government invest eight times less in dementia research than cancer research and similarly less than in cardiovascular disease, even though economically, and tragically for families, the impact of dementia is greater. Furthermore, they do not invest in a long-term predictable way, but in sporadic bursts when pushed. How can the Government continue to justify that, given the economic and personal impact of this disease?

We have a science base in the UK that is world beating. All bar one of the genes that have been discovered to be predictors of the familial types of dementias have been discovered here in the UK. Here, we get far better bangs for our bucks investing in basic molecular science, and better quality outcomes for smaller investment, than in the United States. The NHS is well organised to do clinical research in this country and we also have university departments of social research that are set up to do the research—if only they could get the research funds.

Almost all the research undertaken at present is on the smallish younger groups of people: it is not focused on the everyday, common stages of dementia. We have no idea how that research will translate to older people. Of course, I should like to have a poly pill that we could all take at 40 that would prevent us developing this disorder, but the problem is that dementia and ageing are closely associated. There is no escaping the fact that one is 25 times more likely to develop it at 90 than at 60. It is likely that decreasing the risk of dementia with prevention strategies will lead to an increased ageing population and therefore the survival of the later cohort of dementia sufferers. Of course, it is very much worthwhile making it later, but the results of successful early treatment and prevention are not as clear as one would like on a population basis.

The Alzheimer's Research Trust, which provides something like £4.5 million of research money, and the Alzheimer's Society, which also provides some money for research, have talked together about how to pool their research-promoting energies. I hope that they will continue to talk because working together on this strategy would be helpful. Can the Minister assure us that the forthcoming summit will lead to a proper strategy for promoting research in this field?

I am greatly looking forward to the contributions of other noble Lords here today and have said quite enough, but I should like to end with my grandmother, Elizabeth Lawson. She was born a Geordie girl and was a key person for me as I was growing up. She told me wonderful stories of her dancing party days in Gateshead and sang Geordie songs, which I still remember. She confided to me that her first love, a soldier, died of typhus on the boat coming home from the Boer War, so you can guess what age she was born in. She later married my taciturn and brainy grandfather, who was a colliery engineer, who brought her south to Nottingham, where he joined the then brand-new Clifton Colliery and she raised a family.

On the whole, I think it was a good life, but after being widowed, my parents cared for her for many years as she developed dementia. She died—I was amazed to find this morning that it was 40 years ago—in an anonymous ghastly long-stay ward in Sherwood Hospital—a former workhouse infirmary—where regimented beds were so close together there was scarcely room to stand between them. It was such a horrible place that her son, my father, found it almost too distressing to visit.

Sherwood Hospital later became a superb example of really good care, curiously enough under the care of Professor Tom Arie, my mentor. But how much have we really improved the chances of good care in the community of a kind that we can all be proud of, which is not stigmatising? This strategy had better work, because it really is us next.