Living with Dementia

Ian Paisley Excerpts

Tuesday 25th June 2019 Westminster Hall

[Ian Paisley (in the Chair)]

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.

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

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.

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[Holly Lynch (Halifax) (Lab)]

As always, Mr Paisley, it is a pleasure to serve under your chairmanship. I join colleagues in paying tribute to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for her leadership and for the compassion she shows in everything she does. I am a Dementia Friend because of her, having attended one of her workshops here in Westminster in 2016. I have since become a dementia champion and was asked by the Alzheimer’s Society to run its workshop for Dementia Friends at the 2016 Labour party conference to 80 colleagues and members, which was quite a challenge for my first workshop. I am incredibly proud to have played a very small role in training some of the UK’s 2.8 million Dementia Friends and sending them out into their communities to make them that bit more dementia-friendly. Once again, I pay tribute to my hon. Friend for her role in that.

This debate gives us an opportunity to evaluate where we are against the aspirations set out in the Government’s Challenge on Dementia 2020, but also to shine a spotlight on some of the good work that is being done at a grassroots level—not least in Halifax, thanks to some truly inspirational and passionate volunteers. As we have heard time and again, 850,000 people are living with dementia in the UK, a figure that is expected to double by 2040. One in 14 over-65s is living with dementia. If that is not an incentive to us all to do everything we can while we are able and empowered to do so, I do not know what is.

I recently wrote to older people in the Sowerby Bridge area of Halifax on behalf of the campaign to make Sowerby Bridge a dementia-friendly town, and invited them to a day of action to learn more and see the support available in their area. That campaign is driven by Shabir Hussain of Bluebird Care in Calderdale, who is a thoroughly committed community activist, along with Chris and June Harvey, who are truly dementia champions, and who run the wonderful Memory Lane Café for people with dementia and their carers. With their trustees and volunteers, Chris and June run pop-up cafés in churches and community centres in Sowerby Bridge and Halifax, with a dementia-friendly programme of games and crafts, information and support, cakes, music and conversation. Some 540,000 people in England alone care for those with dementia, and estimates suggest that one in three of us will be involved in caring for someone with dementia at some time in our lives, so a dementia-friendly environment that offers a thoroughly positive experience for all those involved in living well with dementia makes a massive difference to the regular attenders.

We also have a young onset dementia and Alzheimer’s group, or YODA for short, which was set up by Julie Hayden and provides support for younger people with dementia and for their carers and families. As we have heard, it is often overlooked that 42,000 people of working age live with dementia. Their requirements can be quite different. People diagnosed with dementia at that time of life usually present between the ages of 30 and 65 and are most likely in work, potentially with dependent children, older parents to care for or financial commitments such as a mortgage to consider. For that group, as other hon. Members have said, living well requires a different support package from that required for over-65s.

I would be remiss not to highlight the work of Inspector Neil Taylor of West Yorkshire police, who is a dementia champion and the chair of Dementia Friendly Todmorden. He has gone over and above in promoting best practice within West Yorkshire police and his local community—all credit to him. West Yorkshire police have introduced the Herbert protocol, named after George Herbert, a veteran of the Normandy landings who lived with dementia. The police and other agencies encourage family and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The form includes vital details such as medication required, mobile numbers and places previously located, along with a recent photograph. In the event of a loved one going missing, the form can be handed quickly to the police to speed up the search and assist in supporting that person, who may be lost and confused when they are located. I recommend that all forces adopt such a protocol as soon as possible.

We are blessed with dedicated volunteers who have made Calderdale a better place to live with dementia, but what if Shabir, Chris and June, Julie, Neil and others like them were not there? The environment might be quite different without their leadership. How can we ensure that such work is supported and replicated elsewhere?

I give credit where it is due. David Cameron’s Government launched the dementia challenge in 2012, which sought to create dementia-friendly communities, with work led by the Alzheimer’s Society; drive improvements in health and care; and improve research, with a commitment that funding for dementia research be doubled to more than £66 million by 2015. Under Dementia Challenge 2020, as the programme was called when it relaunched in 2015, the Government committed to investing more than £300 million in dementia research and medical innovation.

It has been estimated that dementia costs the UK economy £23 billion a year, which is more than the costs of cancer, heart disease or stroke. With the numbers of people living with dementia expected to double by 2040, predicted costs are expected to treble alongside that increase. For anyone not yet won over by the human arguments for committing to research for dementia, the economic arguments speak for themselves.

To be fair to David Cameron, I believe that he understood the issue. I hope the Minister can assure us that she will seek to make it a continuing priority for the incoming Prime Minister. However, there are still areas in which I would like to see things standardised across the UK to support people, particularly younger people, who live with dementia, as well as their families and carers. To have a dementia diagnosis in the workplace, with dependants or financial commitments, must be incredibly daunting, but with a renewed focus on that group, and with changes to our understanding of the support that those demographics need to live well, we can make a positive difference. I thank the APPG on dementia for its report “Hidden No More: Dementia and disability”, which calls, quite simply, for

“equality, non-discrimination, participation and inclusion.”

I wholeheartedly endorse those aims.

[Ian Paisley (in the Chair)]

I thank colleagues for their immensely good self-imposed discipline, which will allow the Opposition spokespersons and the Minister 10 minutes each to speak.

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[Caroline Dinenage]

I thank the hon. Lady for that intervention. I am sure the slight disturbance caused by her mobile created a welcome distraction for everybody from my speech. I took note of what she said in her speech and she makes an excellent point about protections.

To go back to research funding, the incredible dementia discovery fund, which other Members have mentioned, was launched by David Cameron in 2015. It is the world’s largest venture fund aimed at a single disease area that looks to develop novel pre-clinical therapies. Our continued commitment to support research has also seen increasing numbers of people involved in the joint dementia research programme, with 20,000 people taking part in dementia research studies. To answer the question asked by the hon. Member for Vale of Clwyd (Chris Ruane), I am happy to meet and discuss any other research that comes forward.

Ahead of developing new treatments, we need to be able to support people to live well with dementia in their communities. The Dementia Friends programme, which a lot of people have mentioned—I am also a Dementia Friends champion—is a great example of increasing public awareness. Through the dementia-friendly communities programme—365 so far this year in England— we are making society more inclusive. We are supporting the National Dementia Action Alliance’s work to promote dementia-friendly hospitals across England through its charter to improve the care that people receive.

My hon. Friend the Member for Witney asked me about writing to the Department for Work and Pensions about improving its guidance to employers, which I will commit to do. We know that careful reforms are required to ensure that the social care system is prepared for the challenges of an ageing society, including for those with dementia. Many Members, including the hon. Member for Cambridge, mentioned adult social care funding. Many Members also talked about cuts to local authorities, but over the past year we have given councils access to an additional £10 billion: an 8% real-terms increase.

However, the fact that we are still talking about the social care system being on the point of crisis, at a tipping point or under huge pressure, shows the scale of the problem. That is why we have committed to publishing the adult social care Green Paper at the earliest opportunity. I share everybody’s frustration about the delays, but it will set out ideas for an element of risk pooling to save individuals from catastrophic costs, which some have spoken about today. We are committed to ensuring that everybody has access to the care and support they need. More short-term social care funding will be agreed alongside the rest of the local government settlement in the forthcoming spending review.

The NHS long-term plan sets out a 10-year strategy, outlining how the NHS will spend the £33.9 billion cash terms annual increase that will go into the NHS budget. We now know that around a third of dementia cases are preventable. Since 2018, every person attending an NHS health check in England—the hon. Member for Burnley (Julie Cooper) mentioned prevention—receives information about how to reduce the risk of developing dementia. It includes advice on smoking, safe levels of alcohol and being physically active. Between 2013 and 2018, nearly 7 million people attended health checks.

My hon. Friend the Member for Chichester (Gillian Keegan) mentioned Careline in her constituency. There are lots of innovative ways that technology can improve the lives of people with dementia. Jelly Drops are an ingenious way to tackle dehydration using sweet-like capsules. My local county council in Hampshire uses existing technology such as Amazon and wearable technology to help people maintain their independence, stay safe and combat isolation. All those achievements, brought together in the dementia challenge 2020, help to improve the lives of people with dementia, but we know that more needs to be done. We are committed to continuing to improve the lives of people with dementia, and of their families and carers.

[Ian Paisley (in the Chair)]

I call Debbie Abrahams to wind up.