Dementia

Lord Touhig Excerpts

Thursday 28th June 2012 Lords Chamber

Tabled By

[Lord Touhig]

To ask Her Majesty’s Government what steps they are taking to provide support for people with dementia.

[Lord Touhig]

My Lords, a debate on dementia is long overdue. Indeed, the last time your Lordships’ House debated dementia was on 25 June 2009.

Today there are 800,000 people with dementia in Great Britain, and two-thirds of them are women. Currently only 43 per cent of people with dementia have a formal diagnosis, yet we all know that diagnosis is the key to accessing information, treatment and support services. There will be more than 1 million people with dementia by 2021 in this country. This year alone it will cost us £23 billion. Currently there are 600,000 family carers of people with dementia.

While significant resources are being spent on dementia, they are often being spent inefficiently and in ways that do not meet the needs or aspirations of the people with dementia and their families. Improving services for people with dementia could therefore boost outcomes and also prove cost effective for the taxpayer. Over a million people living with dementia in the United Kingdom by 2021 will present a major challenge as people with dementia are significant users of both health and social care services, and there remains an unacceptable variation across the country in the quality of services and support. Too often, people with dementia are unable to access the support they need and are frequently failed by the current system. Urgent reform of the social care system is needed, along with a real priority attached to dementia, if we are to improve lives.

As a former member of the Public Accounts Committee in the other place, I well remember the 2007 report by the National Audit Office which found that the health and social care response to dementia was inadequate and that spending on dementia, while significant, was poorly used. The Alzheimer’s Society 2009 report, Counting the Cost, showed that there was an unacceptable variation in the care of people with dementia in the hospital service. It found that people with dementia were staying in hospital on average a week longer than other people admitted for the same reason. A report for the Department of Health by Professor Banerjee in 2009 estimated that 180,000 people with dementia were being prescribed anti-psychotic drugs but that two-thirds of the prescriptions were inappropriate. Anti-psychotics rob people with dementia of their quality of life and lead to 1,800 deaths a year. In January 2010, the National Audit Office’s interim report on dementia found that progress on implementing the national dementia strategy in England had been patchy and had got off to a slow start. The Alzheimer’s Society’s 2011 report, Support. Stay. Save., found that half of people with dementia were not getting the support they need.

Last March, the Prime Minister’s challenge on dementia laid out further key commitments on research, healthcare and dementia-friendly communities. The Queen’s Speech in May outlined the Government’s plans to introduce a draft Care and Support Bill for England. We are told that the Bill will set out how the Government will modernise care and support law to ensure that local authorities fit their services around the needs, outcomes, experiences and aspirations of the people. We are told that it will build on a personal budget agenda, simplify the laws around social care and improve the way in which people get information about their due entitlements. Dementia plans and strategies are in place in Northern Ireland, Wales and Scotland, all of which emphasise the need to improve awareness, diagnosis and services.

While the vast majority of care for people with dementia is undertaken by family carers, people with dementia frequently use social care services. The current system does not work for the person receiving care, it does not work for the person providing the care and it certainly does not work for the taxpayer. The chronic underfunding of social care over many years has driven down quality, choice and accessibility. Over the past four years, the increased demand for social care has outstripped the increase in expenditure by 9 per cent, and the ability of people with dementia to live well is increasingly under strain. People with dementia are being unfairly penalised by the existence of what is called the dementia tax.

Individuals and families are spending tens of thousands of pounds to access the care they need, while care for people with other medical conditions, such as cancer, is free. The Alzheimer Society’s 2008 report, The Dementia Tax, found that people with dementia and their families are willing to make a contribution to the costs of their care. However, they need a fairer deal which protects them against very high costs and which also guarantees the quality of care. Where one lives determines the level of care received, as councils decide locally at what level to start providing support. Across the country, people cannot get essential care, while some in a neighbouring authority can. A patchwork of complex rules and assessments makes claiming what people are entitled to difficult and off-putting. The highest spending local authority, Tower Hamlets, spends five times more than Cornwall, the lowest spending authority.

People have a limited say over the care they receive. Choice and control is the experience of too few people. Out of two million older people in England with care-related needs, 800,000 receive no formal support at all. The lack of support early in the condition leads to a substantial pressure on long-term care and acute sectors. Some 10% of the respondents to the survey Support. Stay. Save. reported that the person with dementia was admitted earlier than expected into long-term care because of inadequate support in the community early on. A similar proportion reported that the person with dementia was admitted to hospital when it could have been avoided because there was lack of early support in the community. This is despite evidence that early intervention is both cost-effective and is what people with dementia and their carers want. The care paid for by local authorities is too often provided to people who have significant need when evidence shows that investing in care earlier would reduce demands on the National Health Service. The Alzheimer’s Society has been campaigning for many years for a change in the way we pay for care. The forthcoming social care and support White Paper is an historic opportunity to overhaul our care and support system.

What can we do to make a difference? The Dilnot commission proposed a fair system where no one would lose more than 30% of their assets. That would help. However, without additional government funding, England’s social care system will not be fixed. The recent Nuffield Trust report identified a number of funding options that could release funds to invest in the social care system. The Government must begin a public debate on where money for care could come from. Money intended for social care must be used for care, and not for filling in potholes. At present, each local authority decides which of the four levels of fair access to care services eligibility criteria they will fund: low, moderate, substantial or critical. It is profoundly unfair that two people living either side of a local authority boundary—they could be living either side of a road—could be entitled to significantly different levels of care. The Government must introduce a national eligibility strategy to improve consistency and fairness across the country. Progress has been made, but we have a long way to go.

Just over two years ago I took part in a march. It was a memorial march in memory of people with dementia who had died. I walked with a man whose wife had not spoken a word in 18 months. He was her carer; he sometimes had respite when his son could take over. His wife was doubly incontinent; they had no shower or toilet facilities on the ground floor. He told me that the only day he was confident that she was kept clean was the day that she went to a day centre, where they had showers, and so forth. He was battling hard in order to find funds to provide these basic facilities on the ground floor of his home. I came away full of despair after talking to that man. I am sure that noble Lords must have had similar encounters.

When we last considered this subject, in a debate introduced by the noble Baroness, Lady Murphy, in 2009, she told us that the average age of your Lordships was 68 and that one third of us will die with dementia. That brings it home that every one of us must know or will have an encounter with someone who has dementia. We really must do something about it. We have a duty to those in our society who are desperately locked away almost as prisoners of illnesses of the mind. It is down to those of us who can still articulate and make the case to ensure that the Government and we as a society do something to improve the quality of life for people with dementia.