Dementia

Liz Kendall Excerpts

Thursday 10th January 2013 Commons Chamber

[Liz Kendall (Leicester West) (Lab)]

It is a real privilege to have listened to so many excellent and moving speeches from both sides of the House. This is by far the best debate I have sat through since becoming a Member of Parliament and I feel very lucky to be part of it. I thank the Backbench Business Committee, and warmly congratulate the right hon. Member for Sutton and Cheam (Paul Burstow), my right hon. Friend the Member for Salford and Eccles (Hazel Blears), and the hon. Member for Chatham and Aylesford (Tracey Crouch) on securing this extremely important debate.

As we have heard many times today, dementia is a cruel and distressing disease that affects an increasing number of people in this country. Like many hon. Members who have spoken, I have seen the impact that dementia has had on my constituents and in my own family. Women in their 60s and 70s are seeing their once proud, sharp and vivacious husbands not only struggle to get up in the morning or go to the toilet, but to finish sentences and remember key points of their married lives together, and their hopes of having a great retirement with the person they love are fading away. Sons and daughters are trying to help their mums and dads walk, talk and feed themselves—just as they used to do for them—and coping with the terrible shock when their own parent does not recognise them or seem to know who they are.

Dementia is distressing not only because of the physical impact it can have on the person with the condition and the practical struggle that many families face in caring for their relatives, but because it affects something so essential to our humanity—our relationships with our families and the people we love and care for most. Relationships are based on memory and shared experiences. If memory fades and those experiences and relationships are lost, it feels as if the disease is taking away the essence of the person we love and therefore something fundamental about who we are too.

People are frightened of dementia because they fear it will destroy their minds and relationships as well as their bodies, and because they think that nothing can be done. That, however, is not the case. Although there is currently no cure for dementia, as many hon. Members have said, with the right care and support, people with dementia can enjoy a good quality of life, even in advanced stages of the condition.

Hon. Members have spoken passionately about services in their own constituencies and places they have seen. Last year I visited a day care centre, Dove House in Barnet, provided by the fabulous Alzheimer’s Society. The people there told me how going to that day centre and having stimulating, non-medicating help and support such as gardening, cooking, singing or music, had brought their loved one back to life in a way they did not think was possible, and also that they had got a desperately needed break and therefore their relationship had improved.

There is superb residential care for people with advanced dementia at Fountain Court in Wolverhampton, which I visited last year. It is run by an inspirational manager, Michaela Wilson, who demonstrates the kind of creative thinking mentioned by my hon. Friends the Members for Liverpool, Walton (Steve Rotheram) and for Bridgend (Mrs Moon), and many others. I will give two brief examples of that.

First, there was one resident who never took a cup of tea. Michaela Wilson was worried about that because people need hydration, but she saw that he kept tapping his pocket and realised, “Ah. He is used to having change in his pocket and thinks he is supposed to pay for this.” She gave him change every morning; he put it in his pocket, it always fell out, but he took a cup of tea.

There is a second example of such creative thinking. The home is brilliantly designed—lights go on when people get out of bed, and doors open. There was a yellow toilet seat because people with dementia recognise colour, but one guy kept getting out of the other side of the bed and going to the toilet in the bin. The staff were getting a bit annoyed, so Michaela Wilson said, “At least he recognises he’s supposed to go to the toilet somewhere,” so they put a second bin there. The man slept better and was more relaxed. It was a fantastic service.

The quality of dementia care is changing, but not quickly enough and not in enough parts of the country. Many hon. Members have said that we need to do for dementia over the next 10 years what we have done for cancer over the past 20 years. Above all, we need to give people hope that something can be done. That is essential in ensuring that everyone gets an early diagnosis, because people do not want to come forward if they believe that nothing can be done if they are diagnosed.

We must do even more to raise awareness of dementia and to tackle the stigma many people still feel, so that they are not embarrassed if their husband, wife, mum or dad butters the plate and not the toast in a café, or if they cannot order from the menu. We must transform information for families and say what dementia is, how it can affect them and what help and support is available. There are many different bits of information in different places, but for such a distressing condition, we need to bring it together.

NHS social care and voluntary services must work far better together—that point was made by many hon. Members, including the hon. Member for Hexham (Guy Opperman)—so that families do not have to battle different parts of the system when they are already distressed enough. Care and support must be personalised to each individual and their family. Dementia affects people’s memory and the way to reach out to them is by finding a hook into that memory, so care and support must be highly personalised.

That has radical implications for the education, skills and training not just of nurses and care assistants, but of general practitioners and managers, who must hold their staff to account for the care they provide. That is particularly relevant in communication skills, as my hon. Friend the Member for Bridgend has said, and, as many hon. Members have said, we need further progress in dementia research.

The Labour Government began the journey towards delivering better dementia care—I am grateful that the right hon. Member for Sutton and Cheam recognised that. In 2009, we launched the first ever national dementia strategy, “Living well with dementia”, which began the process of establishing memory clinics, providing better training for GPs, and improving the quality of dementia care for people in hospitals.

In early 2010, we appointed the first national clinical director for dementia and commissioned a quality standard for dementia from the National Institute for Health and Clinical Excellence. The current Government’s dementia challenge builds on many of the improvements Labour introduced. I welcome the increase in funding for dementia research and the aim of creating more dementia-friendly communities. If the Alzheimer’s Society in Leicester, Leicestershire and Rutland is anything to go by, I am sure the Alzheimer’s Society nationally will do a superb job in recruiting and training volunteers as dementia friends.

However, we need to assess those initiatives against the wider and—I would argue—far bigger impact of the Government’s policies on the NHS and local council social care. Let us look at district nursing, which is just one essential aspect of better dementia care. Those vital nurses work alongside GPs, care assistants and other staff to help people who usually have dementia and another condition—co-morbidity and multi-morbidity are the big challenges we face. District nurses help people to stay healthy and well, living in their own homes, but 1,400—one in five of the total—have been cut since the coalition came to power. That is not good for patients, but it is not good for taxpayers either, because people with dementia end up in more expensive hospital or residential care when they cannot get the support they need to stay at home, which is what they want to do.

Delays in patients being discharged from hospital specifically because of a lack of NHS services in the community—this is not about social care, but about NHS in the community—such as district nurses have increased by 38% since August 2010. The delays cost the NHS £6 million every month.

If the problems and difficulties in the NHS are bad, those in social care are far worse. More than £1.3 billion has been cut from local council budgets for older people’s social care since the Government came to power. As my right hon. Friend the Member for Salford and Eccles (Hazel Blears) said, council budgets are being cut by a third. Adult social care makes up about 40% of that budget and is councils’ biggest discretionary spend. Any money that is going across from the NHS is not ring-fenced, so inevitably those services are suffering. Councils are doing their best to save money by changing the way care is provided and by working more closely with the NHS. Faced with the scale of cuts to council budgets, however, many have little choice but to restrict the number of people who qualify for help, reduce day care services and increase charges for vital support, such as home help and residential and respite care, if they are to balance the books.

That is having a real impact on people with dementia. We are seeing an increasing number of 15-minute home visits. They are simply not long enough to get a very frail and distressed elderly person with dementia up, washed, dressed and fed, and end up costing the taxpayer more. The Alzheimer’s Society says that one in five people with dementia are admitted to long-term care institutions earlier than would have been the case had they received the right support at home.

There is a dementia challenge, but we cannot tackle the crisis in dementia unless we tackle the crisis in care. That means addressing the current and growing crisis in social care and putting in place a better, fairer system for the future. This is not an easy thing to do, as Labour discovered when we were in government. We have welcomed Andrew Dilnot’s recommendations on long-term care funding as a step towards a better, fairer system. We initiated cross-party talks on this vital issue, which unfortunately broke down when the Government unilaterally issued their own progress report on funding care and support, but I want to state clearly for the record that if the Government were serious about those talks we would be back in like a shot. We now see media reports that the Government intend to implement the Dilnot principles, but not until after the next election, and put a cap on care costs at £70,000 or above, rather than the £35,000 Dilnot recommends. Dilnot says that

“moving outside the range of £25,000 to £50,000 could mean that the overall reforms would fail to satisfy our criteria on fairness and sustainability.”

Capping care costs above £50,000 would mean

“people with lower incomes and lower wealth would not receive adequate protection.”

A £75,000 cap would not even help many families on middle incomes. The long-term care insurer, Partnership UK, says that a person paying the average cost for a single room in a nursing home in the south-east would not hit the cap for five years because that care is so expensive. The average length of stay in Bupa care homes is about two years. In other words, the person would die before they reached the cap. There is a concern that a £75,000 cap would not encourage people to take out insurance because the premiums would not be affordable. If these reports are true, will the Minister stop, think again and get around the table for cross-party talks, so that together we can put in place a decent, fair and sustainable plan for the future?

In conclusion, we need fundamental reforms to transform dementia care. We need one care system, not separate systems for people’s physical, mental and social care needs. We need care and support that is radically reshaped around the needs of individuals that involves their families and the wider community, and is provided by NHS and social care staff with the right skills, training and understanding. Like my right hon. Friend the Member for Salford and Eccles, my parents taught me the values of justice and fairness. In the century of the ageing society, we will deliver justice and fairness to people with dementia only if these reforms are made. I hope that that is something Members on both sides of the House will work together to achieve.