Living with Dementia

It is very warm in the Chamber today. Hon. Members may want to remove their jackets: please feel free to do so—I would not want anyone parboiled. Before I call Debbie Abrahams, who will move the motion in her own time, I ask Members to prepare, because of the interest in the debate, to make speeches of about five minutes. We shall keep that informal, but hopefully we will be able to get everyone in.

It is lovely to see you in the Chair, Mr Paisley. I thank the Backbench Business Committee, which granted the debate, and I want to recognise my hon. Friend the Member for Cambridge (Daniel Zeichner) as its co-sponsor. I also thank the Alzheimer’s Society, which provides superb support to the all-party parliamentary group on dementia, and the parliamentary digital team for promoting the debate. We hope to hear the views of many people from across the country on the recommendations in the report we shall discuss.

The subject of dementia and people living with dementia is particularly close to my heart. As many Members will know, my mum was diagnosed with Alzheimer’s disease at 64 and I was one of her principal carers. Having had that caring experience and seen some of the issues my mum faced, I wanted to raise awareness about dementia and the many different brain diseases that cause it. As many will know, dementia is now the leading cause of death in the UK, having overtaken heart disease and cancer. It is estimated that 850,000 people in the UK have a dementia, and Alzheimer’s disease is the most common. That is expected to increase to 2 million by 2050. Globally, there will be 152 million people living with dementia by 2050—a 204% increase. If there is anyone who does not now know someone with dementia, they soon will.

There is already much work under way at the UK Dementia Research Institute, where there is a search for programmes to identify people at risk of different dementia types and prevent them from contracting the disease, as well as for treatments and cures. In spite of the commitment by the former Prime Minister, David Cameron, to invest in dementia research, it still receives only one tenth of the research funding that cancer receives. However, there is also a need to invest in dementia research that could improve the lives of people affected by dementia today. I have campaigned with many others to raise the issues affecting people living with dementia, including becoming the first MP to be a Dementia Friends champion, working with Oldham Dementia Action Alliance to develop a dementia-friendly Oldham and Saddleworth, and undertaking various all-party group inquiries on how to improve the quality of life of people living with dementia.

The report from our latest inquiry, on dementia and disability, was launched last week. More than 2,500 people affected by dementia responded to our call for evidence—one of the largest responses to any all-party group inquiry. What the respondents had to say is very important. According to the Equality Act 2010 and the United Nations convention on the rights of persons with disabilities, dementia is a disability. As one family carer put it:

“If this isn’t a disability then I don’t know what is.”

However, the all-party group was told that society is lagging behind in that understanding and failing to uphold the legal rights of people with dementia. Evidence presented to the inquiry revealed that, across the country, the disability rights of people with dementia are not being upheld. Shockingly, 98% of the survey respondents thought that people living with dementia are treated differently from people with other health conditions or disabilities. They believe that that is due to the hidden nature of dementia, and the stigma that surrounds the condition. That is simply not good enough, and we need to do more.

I congratulate my hon. Friend on obtaining the debate, and those who supported her. I hope she will touch on the cost of care. The cost of looking after people with dementia is astronomical, as it is with care generally. I hope she will also touch on progress with dementia research.

I thank my hon. Friend, who anticipates me. I shall certainly talk about social care in relation to people living with dementia and their carers. My speech is focused on our inquiry report, but other hon. Members may want to touch on progress being made in research.

A central finding of the inquiry is that the public, employers, organisations, Governments and public bodies need to do more, and need to recognise the rights of people with dementia. The inquiry also revealed that a range of societal barriers prevents people with dementia from living independently. Action needs to be taken across a number of key areas to ensure that people with dementia receive the protections and safeguards provided by legislation and convention. The key areas that were identified as having a direct impact on people’s daily lives include employment, social protection, which is also called social security or welfare benefits—I consider that a misnomer because most people who receive so-called welfare benefits have contributed, so they are an entitlement, not a benefit—social care, transport, housing and community life.

On employment, the importance of work in giving people a sense of purpose, self-esteem, status, companionship and income was raised. Work can also provide a routine. Without it, people can feel a loss of identity and sense of purpose. One person with young onset dementia told us:

“I applied for so many jobs and I just got rejections. I used to lecture at a university and now I can’t get a job collecting trolleys. Any job is worthwhile. Not having a job destroys self-esteem.”

At the launch of the inquiry report last week we heard of a woman who had worked in a Government Department and had been diagnosed with early onset dementia. She became ill because of the condition, was then disciplined about that and, ultimately, was forced to take ill-health redundancy. I know that the Minister will be as concerned as I am about that disgraceful position. If Departments are setting out how we should lead, we must make sure we have our own house in order.

It is a pleasure to serve under your chairmanship, Mr Paisley. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, in conjunction with the hon. Member for Cambridge (Daniel Zeichner) and the Backbench Business Committee.

Hon. Members should be dismayed to learn that, according to a recent survey, 98% of the 2,521 respondents felt that those with dementia were treated differently from people with other health conditions or disabilities. Some even found that employers would not make reasonable adjustments to the workplace. Those respondents believed that they were discriminated against, facing unnecessary stigma and often negative attitudes. It is a worrying statistic given that, apparently, 850,000 people in the UK live with dementia. Indeed, 70% of care home patients live with the condition.

Media coverage of the condition tends to occur only when it befalls a prominent person in public life, when relatives have the courage to publish their experiences, as the TV presenter Sally Magnusson in Scotland did in relation to her mother, or when a member of the public sadly goes missing and the police issue an urgent appeal for help in locating them. It is important that we raise wider and more regular awareness of a condition that appears to be on the increase throughout the United Kingdom.

I apologise for being late to this debate. Last November, my father passed away. He was a sufferer from dementia and, while he got fantastic care, we found as a family that there was a lack of staff with the experience to diagnose dementia, because there are different stages and diagnoses. Does the hon. Gentleman agree that one area that is forgotten about is young carers, who have to dedicate a lot of their time to looking after their parents while still keeping up their studies? We seem to forget about them.

The hon. Gentleman is right that we often seem to overlook the young carers. In my family, we have experience of hosting my mother-in-law. I was very fond of her, but we had two or three months of hosting her, and despite having two daughters who are nurses, what a challenge that was in my life and that of my wife. We thought we knew about dementia, but we knew nothing about it until we walked for several months with my mother-in-law, who I was very fond of.

When I served as a councillor in South Ayrshire, one of my colleagues, Councillor Hugh Hunter, and others were active in ensuring that the needs of dementia sufferers and their carers were to the fore. In his council area, in 2016, a dementia-friendly project was launched, with the laudable aim of building a community that supports people with dementia, enabling sufferers to remain in their community for as long as practicable and reducing the stigma. Indeed, in the constituency of the hon. Member for Central Ayrshire (Dr Whitford), which borders mine, is the Carlton Hotel, one of the first in Scotland to provide a dementia-friendly bedroom. I think she and I would both agree that that is delightful, and I give credit to that hotel and others that do the same.

In 2015, the UK Government launched the Dementia 2020 challenge, a vision for dementia care, support, awareness and research, which includes awareness training for NHS and care staff. I understand research spending is around £60 million a year to 2020, but not beyond. Four years on, I wonder whether the Minister might provide us with an update and an outline of what the future might hold for those with dementia and—equally importantly, as was said earlier—their carers.

In particular, I am sure sufferers and carers would be grateful for more detail on the proposed Green Paper on a new social care policy, especially the Alzheimer’s Society’s desire for a dementia fund to afford financial support for the very real additional costs associated with dementia treatment and care. An update on the Accelerated Access Collaborative introduced last year, which enables patients to benefit from rapid uptake products, breakthrough medicines and technologies with the greatest potential to change lives, would also be welcome. I know an update would be gratefully received by many of my constituents and others elsewhere in the United Kingdom.

I very much welcome the fact that mental capacity legislation should enhance safeguards against deprivation of liberty and ensure that those living with dementia have a person to advocate on their behalf. However, the Government could further assist by making form filling easier and considering whether there is truly a constant need for reassessment, given that dementia is sadly a progressive condition for which there is currently no effective cure.

It is a pleasure to serve under your chairmanship, Mr Paisley. I thank the Backbench Business Committee for granting this debate. It is an honour to follow my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams), who so expertly laid out the issues. I will say a little bit about social care and then move on to research.

Some 1,179 people live with dementia in Cambridge—around 1% of the constituency population—meaning that thousands of my constituents care for or know a close friend or relative with dementia. My hon. Friend touched on some of the social care issues. It seems hard to deny that we have a crisis in social care. In March 2017, the Government said they would publish a Green Paper on ensuring that the system will be sustainable in the long term. However, two years on, and after many delays, Ministers have still not given a date for when it will be published.

I understand that 400,000 fewer older people receive publicly funded care than in 2010. With local authority budgets cut by 49.1% since 2010, including £7 billion lost from adult social care, and a further £1.3 billion to be cut in 2019-20, it is hard not to conclude that the situation for many of those living with dementia, and for their families, has been made much harsher and more difficult.

Alzheimer’s Research UK has campaigned for more money to be invested into research, so that with new treatments we can really change the lives of those who have dementia. As we all know, research has revolutionised the ways we treat, cure and prevent diseases such as cancer. There is no reason why that cannot be the same for brain diseases such as dementia. New treatments would also ease pressure on our healthcare and social care services, improving lives and saving public service resources. Public donations have allowed Alzheimer’s Research UK to invest £100 million over the last 20 years to drive forward its research, but that funding alone does not allow it to further explore emerging fields.

It is a pleasure to serve under your chairmanship, Mr Paisley. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, and the Backbench Business Committee for granting it.

Both my grandmothers suffered with dementia, so like many here today I have seen at first hand how people slowly become a shadow of their former selves. We are all living longer than before, but with the gift of more time comes complex illness and disease. It is expected that, by 2020, more than 1 million people across the UK will have dementia, with one in five people aged over 90 suffering from it. Chichester has a significant elderly population, and we therefore have more sufferers than the national average.

We know that this area of health will only become more of an issue in the coming years, so policy around it needs to be robust, for both patients and their families. In 2015, the Challenge on Dementia 2020 was launched, setting out the vision for how dementia care support, awareness and research will be transformed by 2020. A big part of this is awareness raising, so people can spot the signs in loved ones. I and my team are registered to take part in Age UK’s dementia awareness training, and I am sure that many people across the country are doing the same. More people are receiving a dementia diagnosis than ever before, helped by the fact that more than 660,000 NHS staff have received dementia training. That is important, because the earlier the diagnosis, the more time patients and their families have to prepare for what is to come.

From my own experience, I know that dementia is a very changeable disease, with good days and bad. Sometimes I would sit with my nan and she would be as sharp as a pin. Sadly, on others, she would barely recognise me. However, there are some things that can beat dementia, and in her case it was politics. I will never forget visiting my nan, Joan Roberts, after she moved out of her council house and into a local care home in Huyton. I had just finished my first election campaign, contesting St Helens South and Whiston in 2015—as a Conservative—and wanted to show her my election leaflets. At the time, she was in the advanced stages of dementia. She looked at the photos and admired the different outfits I was wearing, but all of a sudden her face went as black as thunder when she realised I was standing as a Conservative. “That is not my party,” she exclaimed. I said, “Goodness, nan; you can’t remember what you had for breakfast but you still remember that you’re Labour.” I went on to reassure her that we had never agreed on politics, and she seemed happy enough with that reply.

I am delighted to participate in this important debate on improving the lives of people with dementia. I begin by extending my thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing the debate, and by applauding the excellent work in my constituency carried out by Quarriers dementia befriending service—I met people from the service only a few weeks ago—and its wonderful volunteers, who work so hard and do so much to improve the lives of those with dementia.

I must declare an interest in the debate, as my husband’s mother—my mother-in-law—is living with dementia. Watching an older person—I appreciate that we have heard about cases of younger people being diagnosed with this disease—make the descent from the person they used to be into someone who is so far removed from their former self is really distressing. My mother-in-law’s name is Iris Gibson, and before the illness took hold she was the longest-serving SNP councillor on Glasgow City Council at the time; she was a woman who was a keen runner, having participated in marathons all over the world; she was a woman who was never home but was always out at meetings or events in her council ward, or representing Glasgow City Council in her role as bailie at official functions; and she was a woman who was perfectly comfortable exploring foreign lands on her own when she took time for a holiday. Over an extremely short period of time, her children and I have watched her go from being all those things to being a woman who is easily confused, who is not always able to recognise her grown-up children and who has lost all sense of herself. If she could have seen, and if she had known, how her elderly years would play out, she would have been distressed beyond measure at the prospect. Her grown-up children, twins Kenneth and Janis, find her descent into dementia very distressing to see, as might be expected. This illness is cruel beyond words, and if anything can be done to improve the lives of those who are living with the disease and the lives of their families—we cannot forget their families—we need to do all in our power to deliver that.

It is a great honour to serve under your chairmanship, Mr Paisley. Like other hon. Members, I thank the hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) for bringing this timely and critical debate to the Chamber. We all feel very strongly about the subject. Many hon. Members have experienced, and have spoken movingly about, the impact of dementia on their own family. I am one of those, too. I will always remember the effect that dementia had on my grandfather in his final years. “Strict but fair” is probably the phrase used to describe that generation—my grandfather was a Royal Air Force officer and a teacher. I therefore have had personal involvement and have a personal interest in this matter, as so many do, and it is of course an emotional matter for many of us.

I am also married, as I have told the House before, to a music therapist. Many of my wife’s clients live with dementia. Classically, one always thinks of such people as being over 65, but that is not always the case. Increasingly, as my wife tells me, people who are much younger are affected, and it is those people on whom I would like to focus my brief comments.

I am a Dementia Friends champion. Many hon. Members are Dementia Friends and I warmly encourage any who are not to become one because of the education that it provides. One of the key lines and key lessons that dementia friend champions ask people to take away is that not everybody who is old has dementia and not everybody who has dementia is old. Although it is rare for younger people to have dementia, it is not that rare. About 5% of people with dementia are under 65, which is about 42,000 people—a significant number. I always ask people to become Dementia Friends because of the extraordinarily positive message that comes from that programme.

We should say not that someone is suffering with dementia, but that they are living with dementia. I am glad to hear that everyone is using the correct phraseology today—I hope that I will continue to do so throughout my speech. Secondly, one can live well with dementia, and there are many things that we can do in our constituencies and public lives to ensure that everybody does so.

Young onset dementia—people under 65—is very difficult to diagnose. It is easily confused with stress or depression at that age, so the diagnosis is delayed. Even when someone is diagnosed, it is often hard to find care. Care is often fragmented and targeted at people who are over 65, which is welcome where it is but, as the Dementia Friends programme shows, it is important that care is targeted to the individual’s needs.

It is a pleasure to serve under your chairmanship, Mr Paisley. I congratulate my hon. Friends the Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) on securing this important debate. I support their vision to make this Parliament the first dementia-friendly Parliament in the world. My staff and I have undertaken dementia-friendly training in my constituency office. It is important for us all to try to promote a more dementia-friendly society, sector by sector, institution by institution and, as mentioned previously, shop by shop.

It is great that so many Members want to participate in the debate—it shows how active this is in our personal lives and our communities. A wide range of issues has been covered so far. We have looked at the impact on loved ones who are living with dementia and their carers, financial assistance and protection for people living with dementia, research, social care costs, dementia-friendly shops and institutions, and therapies that can help people who are living with dementia, such as music therapy. I want to touch on the role that I think mindfulness can play in helping people who are living with dementia and their carers.

I co-chair the all-party parliamentary group on mindfulness with the hon. Member for East Worthing and Shoreham (Tim Loughton). On Tuesday 14 May, we held a conference in the Macmillan room on mindfulness in an ageing world, including those living with Alzheimer’s. We had 150 people attending, including 15 of the charities representing elderly people, including the Alzheimer’s Society.

We heard from experts from around the world and the UK who have been doing research on mindfulness, ageing and Alzheimer’s. Dr Antoine Lutz of the centre for medical research at the University of Lyon has won a €7 million grant for research into ageing well and Alzheimer’s. We also heard from Dr Lone Fjorback from Aarhus University in Denmark, where they have a week-long festival for mental health to look at the issues in a positive light. From the UK, we heard from Dr Trudi Eddington, who is a British research scientist at City University researching those currently suffering with dementia. We also heard from Dr Eric Loucks, the associate professor of epidemiology, and behaviour and social sciences at Brown University.