Living with Dementia

Patricia Gibson Excerpts

Tuesday 25th June 2019 Westminster Hall

[Patricia Gibson (North Ayrshire and Arran) (SNP)]

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.

Iris has had to surrender her own home and lives in a care home in Largs called Haylie House. She seems happy there, but the disease has robbed her of decades of memories. She appears to have forgotten so much of her life before dementia, which was a life she lived to the full. Sadly, that story of dementia can be told by every single person who has watched a precious family member fall victim to this disease, be robbed of the recollections of a life lived to the full in glorious colour and have that replaced by blank, empty spaces, where decades have simply vanished and are beyond the grasp of the person struck by the illness.

In the UK, 850,000 people are living with dementia. By 2025, which is not far away, that figure will rise to more than 1 million, and by 2050 it will rise to more than 2 million. I am concerned about how we protect those living in our communities who have this disease—they may not even have been diagnosed. Too often, as we have discussed in this place, such individuals are seen as rich pickings by those who seek to part them from their savings. As a society, we need to put structures in place to protect them, in every way. Some financial institutions have put measures in place to protect our older, vulnerable people. I am referring to measures such as monitoring their bank accounts and having a few days buffering the removal of unusually large amounts from their account to help to safeguard them against fraud.

What is really needed, as we have discussed in this Chamber before, is a legal duty of care from the business world and from the state towards older people—especially those with dementia—who need that extra layer of protection in a world where rogues and thieves are creative and cunning and older people, even those with dementia, are isolated in their own homes without sufficient support. That protection must be put in place. In my view, it should be a legal, statutory duty for all financial institutions to deliver that protection. Those living with dementia deserve nothing less.

As our population ages and people live longer, there are huge cost and care challenges to face in terms of how we look after our older people, and especially those who live with this cruel disease. Those challenges are faced by societies right across Europe and, indeed, the world, and we must do all we can to meet them, despite the difficulties. The Scottish Government are working hard to improve dementia care and have published a three-year dementia strategy, but one challenge, to which money is perhaps not the answer, is recruiting and retaining care staff, whether the care is carried out in an older person’s home or in a care home. Integration of health and social care services allows for more joined-up delivery of services, but the story cannot end there. It is the case that 43% of the Scottish Government’s entire budget—43%—is spent on health. That is before one penny is spent on schools, housing, roads, local authorities or anything else. The costs of social care can only grow and will continue to be hugely challenging, and we must continue to work to meet the challenges. The Scottish Government are looking very carefully at a report from Alzheimer Scotland called “Delivering Fair Dementia Care For People With Advanced Dementia” and some of the issues that it raises about continuing to work to improve the lives of those living with this condition.

I echo many of the comments that have been made today about the need for continuing and improved research into this condition. Given the numbers affected and the cruel erosion that this illness inflicts on those struck down by it, caring for those in our society who are living with dementia will never be easy. That will always be challenging, not least because of recruitment and retention challenges. We need to recruit and retain staff to carry out the caring that is required—that is very difficult—and we will need more people to carry out those caring roles. We can all agree that our older people must have the care and support that they need throughout this shocking illness. We must not lose sight of that. Our older people with this illness need us to get this right.

--- Later in debate ---

[Caroline Dinenage]

That is an interesting question. I do not know the answer, but I would be keen to look into it to find out. We are looking to explore ways to encourage the take-up of tier 2 dementia training. I recently co-signed a letter to health and care organisations with the chief executives of Skills for Care and Health Education England to highlight the importance of dementia training and education, which is a really important part of our discussions.

We are also meeting our commitment on Government funding for dementia research of £60 million or more each year, to reach at least £300 million invested over the five years up to 2020. The figure is actually more than £60 million this year—it is £83.5 million. In addition, we have the UK Dementia Research Institute, which is funded to the tune of £290 million: £190 million from Government and £50 million each from the Alzheimer’s Society and Alzheimer’s Research UK.

[Patricia Gibson]

I thank the Minister for giving way and apologise for the earlier interruption; I am glad it did not put her off her stride.

Much of what we have discussed today—the issues around this illness—are devolved to Scotland, but I want to press her on an issue that is not devolved: legal protection for older people with dementia. What measures can be put in place for financial institutions to have a legal duty of care to look after those people? In the debate we have focused on the practicalities of care, which is important, but we have to think about how we protect people in law in financial terms.

[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.