Dementia: Covid-19
(4 years ago)
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Steve McCabe (in the Chair)
It has come to my attention that the Order Paper states that the debate will start at 3.30 pm. I am advised that that is a mistake. I will work on the assumption that most people know it is 3 and they are here. If anyone inadvertently turns up later, we will make allowances for them on that basis.
Debbie Abrahams (Oldham East and Saddleworth) (Lab)
I beg to move,
That this House has considered the effect of the covid-19 outbreak on people affected by dementia.
It is a pleasure to serve under your chairmanship, Mr McCabe. I am really happy to have been able to secure this debate with the hon. Member for Strangford (Jim Shannon) on a topic that is important to so many of us.
I am proud to be the co-chair of the all-party group on dementia and to work closely with the Alzheimer’s Society, which supports people living with dementia and their carers. We campaign on the issues that matter most to them. This debate is about the effects of covid on people with dementia and their carers. I will focus my remarks on the Alzheimer’s Society’s September report, “Worst hit: dementia during coronavirus”. The society undertook that collated work to assess the impact of the first wave of covid. I shall also discuss briefly the impact of covid on dementia research, particularly in view of the fact that we are approaching the comprehensive spending review statement later this month.
What has been the impact of covid on people living with dementia? People with dementia have unfortunately been among the worst hit by covid: they have experienced disproportionate loss of life, and those who live in care settings have been separated from their loved ones for many months. The Equality and Human Rights Commission has said in relation to older people, including those with dementia, that
“There is evidence that human rights standards may have not been upheld in the response to the pandemic…We are further concerned that equality considerations were not effectively and transparently built into decision-making at the national, regional and local level, both in terms of the immediate risks from coronavirus and the wider impact of restrictions. This may have resulted in failures to comply with the public sector equality duty.’
That is damning indeed, but on top of that, since March there has been a worrying decline in diagnosis rates for dementia, which were already low. There is some evidence that covid affects the brain and nervous system, as well as other systems in the body, and this needs to be monitored, particularly in relation to covid’s longer-term impacts.
In addition, we must not forget the family and friends who are carers, in my constituency and across the country, who have provided millions of additional hours of care during and between lockdowns. With no shielding support whatsoever, they have been feeling the strain from that lack of support during the pandemic.
To understand the scale of the problem facing people affected by dementia, I thought it would be helpful to share with colleagues information about the scale of dementia itself—of course, many colleagues will already be familiar with this information. In my local authority in Oldham, there are approximately 2,250 people who are currently living with dementia; across the UK, there are approximately 850,000 people living with dementia; and globally there are more people living with dementia than the entire population of Spain. A third of people born in the UK will develop dementia during their lifetime.
I know that most—if not all—of us here today have been touched by dementia in some way, as I was when my mum was diagnosed with Alzheimer’s disease, the most common form of dementia, at the age of 64. I want to highlight the fact that, contrary to popular belief, the majority of people with dementia—more than 60% of the total number—live well and live in the community. However, people with dementia account for over 70% of residents in care homes. This pandemic has laid bare and exacerbated inequalities across our country, and that is particularly true for people living with dementia and their carers.
Colleagues will be as horrified as I was to hear about the disproportionate death rates among people with dementia. Between March and June, over a quarter of the people who died with covid-19 in England and Wales had dementia. Dementia was the most common pre-existing condition in deaths involving covid, although it was never identified as a condition that made people clinically vulnerable. That is the reality we are presented with today, and it prompts the question whether people with dementia and their carers will now be given the proper support to be shielded. The miserly £14.60 per person that has been provided to local authorities to support the clinically vulnerable for the entirety of this second lockdown is, quite frankly, derisory.
In addition to those deaths from covid, there has been a sharp rise in excess deaths of people affected by dementia. Between January and July, 5,049 such deaths were recorded, and during the early peak of the pandemic excess deaths were double the five-year average. These excess deaths happened not only in care homes but among people living at home, with a rate 79% above the five-year average between the middle of March and the middle of September. We must ensure prompt and safe access to health and care services for people with dementia throughout the pandemic.
Why have people with dementia been dying in such high numbers? Various factors appear to be involved, with some undoubtedly contributing more than others. The risk of severe covid outcomes rises steeply with age; 94% of covid deaths between March and June were of people over the age of 60, and we know that people are more likely to develop dementia as they grow old. Evidence is emerging that suggests having dementia may increase the risk of severe covid symptoms and death when age and other conditions are taken into account.
Importantly, coronavirus can present itself differently in care home residents. A sizeable proportion—nearly one in five—of nursing home residents who tested positive for covid were either asymptomatic or had only atypical symptoms. They had no fever or cough, but often had a change in mental health status or behaviour, anorexia or digestive problems. That might also have contributed to the challenge of detecting and preventing the spread of covid in that population.
Perhaps the biggest contributor to the high death rate is where a person lives, whether in a care home or in the community. All of us here today have heard from local care homes and constituents about the serious challenges that have been faced in care homes, from unsafe discharges through to the lack of personal protective equipment and sporadic testing. Although we have made leaps forward in care home safety, I hope the Minister will commit today to ensuring that social care is on an equal footing with the NHS in terms of PPE and testing, and will respond to the issues raised by the EHRC. Looking forward, will she also ensure that the social care sector, including social care providers and experts in the third sector, as well as service users and their families, are involved in long-term developments for the sector?
I also want to speak up for the hundreds of thousands of informal carers across the UK, who are too often forgotten. It is unclear whether the lack of access to friends and families is affecting the progress of dementia, but one thing is clear: the emotional distress of not being able to see or touch our loved ones is very real. One of my Saddleworth constituents wrote to me:
“As the country pays its respects to those who fought and died for our freedom, let’s not forget that some of our war veterans, like my father, are still alive today. He like many others is locked away in a care home, having endured 8 months of separation from his family with no end in sight.”
Another constituent told me:
“My mother has been in a care home with worsening dementia for over three years. She is 96. I cannot see her and can’t even speak to her on the phone as she is almost deaf. It is heartbreaking to know that there is a very real possibility that I may never see my mother again, as visitors are barred from the care home. My mother probably believes her family have abandoned her.”
That is a dreadful thing to feel. With the roll-out of lateral flow testing, will the Minister commit to ensuring that family carers are given key worker status, are included in the care home testing protocols and have access to PPE, so that they can visit their relatives and provide the loving family care that is so desperately needed?
As I mentioned, most people with dementia live in the community, and one third live alone. I have already mentioned the amazing job that more than 700,000 carers do. Without them we know that the social care system would collapse. The pandemic has taken a significant and additional toll on many. The Alzheimer’s Society found that families and friends of people with dementia have spent an extra 92 million hours caring for loved ones with dementia during the pandemic; that is on top of the 100 hours or more a week of care that more than 40% of family and friend carers reported providing for their loved ones. For some that was on top of a full-time job. That dedicated group of people deserve more support as they struggle to care for their loved ones among their myriad other responsibilities.
Will the Minister today guarantee that where home care for someone with dementia has been stopped owing to coronavirus, it will be reinstated without any formal assessment? Will she also ensure that carers’ assessments are carried out; that short breaks are provided for people with caring responsibilities; that local authority data is collected on the provision of those services; and that the Government fulfil their commitment to do whatever it takes by properly reimbursing local authorities for the additional work that they are doing and the additional funding that they have spent during the pandemic?
I have already mentioned that people with dementia were not included in the Government’s formally shielded group in the spring. However, given what we know now about dementia being a significant clinical risk for covid morbidity and mortality, I am pleased that the Government have recognised that and are introducing a risk stratification for covid similar to that used for assessing heart attack and stroke risk. Will the Minister provide an outline of how that tool will work, including when she expects it to be available for use, and in particular what support will be available for those considered at risk?
As I also mentioned, the impact of covid had an impact on the diagnosis rate. It is well below the already low target of 66.7; it now stands at 63%. That means more people are living without a diagnosis of dementia and are unable to access emotional, practical, legal or financial advice, as well as the therapies associated with diagnosis. Memory services are adapting to open virtually, which is a welcome interim measure, but there is urgent need for a catch-up on waiting lists to ensure that the freefall in dementia diagnosis rates does not continue, and a virtual appointment is not the place to deliver a life-changing diagnosis. I will be grateful if the Minister can do all that she can to ensure that memory assessment services reopen in person at the earliest opportunity.
Finally, I want to raise the issue of dementia research as we look through and beyond the pandemic. The Conservative general election manifesto last winter pledged an extra £800 million over 10 years for dementia research—the “Dementia Moonshot”. I support that. The UK’s exceptional research into dementia prevention, therapies and care is already well under way. We have the second biggest research network on dementia in the world. We must not let that go. There are always new challenges. As I said, recent research has found that the neurological complications of covid can include brain inflammation, delirium and nerve damage. We need to be monitoring those types of effects on a long-term basis.
Unfortunately, much of the research that had been under way has been delayed during covid, with medical research charities, which do vital work to support early-career researchers, facing a 40% shortfall this year. A third of dementia researchers are already considering leaving the field. Losing that research talent would have a severe long-term consequence for dementia research, and ultimately for people with dementia. We cannot lose that innovative work. Let me give an example: the UK Dementia Research Institute’s care, research and technology centre has been developing tools and technologies to enable people to live in their homes as long as they can, reducing isolation and minimising the impact on the NHS and beds. Will the Minister confirm that the spending review later this month will fulfil the commitment to dementia research and provide the financial support that such organisations need? Research provides hope of a cure in the future, as well as developments in social care, technological innovation and public health advances to address the care needs of today.
Dementia is often an overlooked condition, but it is a condition that affects so many. People with dementia have been among the worst affected by this pandemic, and I hope the Minister will do all she can to ensure that we do not see such loss of life, strain on carers, and loneliness again as the pandemic progresses. I also hope that we see a long-term and fair funding solution for social care soon, which has the needs of people with dementia at its heart.
Steve McCabe (in the Chair)
The call list is quite long. We can get everyone in if people stick to about four minutes. I do not want to impose a time limit, but that would be helpful.
Esther McVey (Tatton) (Con)
I am pleased to follow the hon. Member for Oldham East and Saddleworth (Debbie Abrahams).
At the end of September, more than 812 patients over the age of 65 were recorded as having dementia across GP practices in Tatton. Many of those patients’ family and friends, and people who work with them, have asked me to speak, including Lorraine Albiston, Simon Brazendale and Suzanne Jeans from Knutsford, and Victoria Caruana and Sue Kisloff from Wilmslow.
Like others, I have heard truly harrowing stories about how those with dementia have not been able to see family members. They feel abandoned, at a loss and confused, not having contact, conversation or physical affection. The Alzheimer’s Society says that for people with dementia, lack of social contact is not only bad for their mental health, but has a significantly negative effect on the progression of their dementia.
That was the case for Sue Jeans’ mum, Jackie. Sue has only been able to see her mum three times since February, when the home stopped all visits, meaning she has seen her mum for 50 minutes since February. While she supported the decision to stop visits in February, she does not now. Nine months later, there must be better ways of doing things. Sadly, this lack of contact has led many people to die sooner than they would have been expected to. Between January and July this year, 5,000 more people than usual died of dementia—that is 52% higher than normal.
Sue is not alone. Lorraine Albiston lives in Knutsford, but her mother lives two hours away in a care home in Worcestershire. The home allows a 20-minute visit once a week, in a gazebo with no heating, meaning that visits are often cancelled due to bad weather and only one or two people can visit at a time. As Lorraine has four siblings, that means she cannot see her mother as regularly as she would like to.
I know that in Tatton and across the country care workers, family members and helpers have worked tirelessly, and I put on record my thanks and appreciation to all those people. Oliver Stirk, director of Carefound Home Care in Wilmslow, told me that their carers have adapted to the situation. Their patients are no longer now allowed to go to the pub to have a Sunday lunch, so his carers are cooking for them at home, so they can have some kind of enjoyment. They have also done much to support the families to get online.
Lisa Burrows, the general manager of Sunrise of Mobberley, told me how her team have implemented an enhanced infection control programme. Furthermore, they are doing their best to do numerous social distanced garden visits and are in the process of introducing dedicated visiting rooms. I also want to mention the members of Knutsford Methodist Church, who provide valuable support for carers through their Friendship Café, run by volunteers led by Paula Lambe and Eve James. However, that has not been able to happen, as it usually does every Friday.
There are grave concerns about the Government’s decision to ban almost all visits and about the lack of input from Public Health England to guide care homes’ approach to this pandemic. I have these questions for the Minister: first, what are the Government doing to address the needs of people affected by dementia and of their family and friends? Secondly, someone’s experience may differ greatly depending on the home they are in, so what are the Government doing to facilitate and encourage a common approach between care homes and to ensure that lessons learned at one care home are shared among others? Thirdly, what is being done by the Government to rebuild trust in the vital social care sector?
Finally, I commend the Daily Mail on its Christmas campaign. I will conclude with the words of an elderly constituent who said to me, “I want to live before I die, and at the moment, with all these confusing lockdown rules, I can’t.”
Mr Simon Clarke (Middlesbrough South and East Cleveland) (Con)
I congratulate the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) on securing today’s debate. It is obviously an immensely important and sensitive topic, and it is right that it should be brought to the attention of the House.
We all know that the pandemic has caused great heartbreak across our country, nowhere more than in our care sector. Our care homes do vital work looking after the elderly and infirm and we owe them and their dedicated managers and staff a great debt of gratitude after all the challenges they have faced over the past year. I have had several very productive meetings with them in Middlesbrough South and East Cleveland. They want to do their best for the people in their care and their families, and some have shown great ingenuity in seeking to ensure that visits from loved ones are still possible.
None the less, as we have just heard from my right hon. Friend the Member for Tatton (Esther McVey), we know there is a real issue with family access for many sufferers with conditions such as Alzheimer’s and dementia, and that it is taking a devastating toll. That pain is not measured simply in mortality numbers; for many of the families of the sufferers with those conditions, it is the deterioration in their loved ones’ capabilities during the isolation they have endured this year that is particularly concerning.
We know that many residents in care homes have had hardly any visits, and some have had no visits, since the crisis began in the spring. How deeply sad that can be has been brought home to me by a number of moving messages from constituents such as Kelly Holmes from Coulby Newham. Her dad was diagnosed with dementia in February last year, and he does not understand why it is not possible for Kelly and her mum to visit. He regularly rings them, distressed and confused about why they have not visited and worrying that no one cares about him. The repetition of that conversation is obviously deeply distressing for the family.
Rebecca Skelton from Nunthorpe has spent 90 minutes in the past eight months with her mum, Ann, who suffers from dementia. She said:
“Before Covid my mother could not converse with me and my family but there was always a smile of recognition when going to visit her, as though she still knew who we were. The thought of not having this when I do get to see her is breaking my heart and causing me severe depression. The thought of her feeling that we have abandoned her by not visiting is causing more anxiety, I only hope that the smile is still there when I do get to see her.”
I have received so many other messages. I thank Mr Malcolm Guest, a constituent of my hon. Friend the Member for Redcar (Jacob Young), who raised the case of his mum Annie; and Lesley Turnbull, who contacted me on behalf of her husband Tim, who has Lewy body dementia. Her words have really stayed with me:
“I have begged him not to give up and I got a reaction, I always get a reaction when I say I will be with you soon.”
In the limited time available, I will make a simple plea: some of the new lateral flow tests—it is great news that they are being rolled out across large parts of the country, including to all authorities in the north-east—ought to be prioritised so that relatives can have access to their loved ones in care home settings. My hon. Friend the Member for Redcar and I have already written to the director of public health for Middlesbrough and Redcar and Cleveland with precisely that request, and I hope that the Minister might offer her thoughts on it. More broadly, I welcome the Minister’s commitment a few weeks ago to explore giving family carers key worker status. I hope that can be actioned, because it could make a real practical difference.
Finally, it would be remiss of me not to acknowledge the real upsurge in hope brought about by this week’s news of the Pfizer vaccine, which is obviously fantastic. I strongly support the Government’s proposed prioritisation of those who will receive the vaccine as soon as the necessary checks have been finalised and roll-out can begin. We must resist the toxic anti-vaccination propaganda that is circulating alarmingly widely on social media and state the truth that effective vaccination will be the end of covid-19 and will pave the way to ending the suffering of so many of our constituents living with Alzheimer’s, dementia and so many other conditions, and the suffering of their families. It can and will restore the love, company and sense of belonging that we all wish to experience at the sunset of our lives. It cannot come too soon. I commend the efforts of the Minister and her colleagues in helping to make sure that we are ready, as a society, as soon as the vaccine is ready to be given to the public.
Caroline Ansell (Eastbourne) (Con)
It is a privilege to serve under your chairmanship, Mr McCabe. I congratulate the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) on securing this important and time-sensitive debate. It is a privilege to follow my hon. Friend the Member for Middlesbrough South and East Cleveland (Mr Clarke).
I am sure that hon. Members will recognise similar letters to this one from my mailbag:
“I have only been able to see my lovely Mum twice since 15th March…(241 days.) We have seen her through the window from the garden. The staff are very good and have usually moved Mum’s bed closer to the window so that we can see each other more easily. But we can’t hold her hand.”
That is just one of the heartbreaking messages that I have been sent ahead of the debate. Those words ring with the sound of sacrifice and emotional distress, and of the forbearance asked of those with Alzheimer’s and their families and friends in this crisis.
People live with Alzheimer’s in a number of settings. My constituency has a significant cluster of excellent care homes—69, in fact, which I know because my team and I have called them several times, first regarding food supplies, then PPE, and then testing. We have always known that they would be at the epicentre of this health crisis, and that their residents would be the most vulnerable. I take this opportunity to commend local carers and to pay heartfelt tribute to their work during this time. Our higher-than-national rate of covid diagnosis is testament to their dedication and means swifter care.
Out of the present crisis, I am pleased to say that new, stronger relationships and communications have been forged between our care homes and our local hospital and its community teams. That can only be good for more joined-up thinking and more joined-up work, with a new named lead now for each setting. In the summer, at a “spade in the ground” ceremony, I met the family directors of Hallmark Care Homes at their new project in Kings Drive. We spoke about their concerns, with their request to Government being: “Hear us, recognise the centre, bring us in to shape the future.”
It was interesting to hear how—even then, back in July—the covid crisis was already influencing the design of this new building, where we stood in the footings. Swift design changes will mean new safe, green routes through the home, creating all-weather visiting spaces. It also means a whole new level of tech to provide residents with a digital window on the world.
For people who are living with Alzheimer’s at home and are reliant on support from day care centres, such as the excellent Ivy House in Eastbourne, forced closure and severed connection has been especially hard for all parties. In more extreme cases, it has been dangerous for the sufferer, and almost unbearable for those who care for them. We cannot find ourselves in this situation again. Individual risk assessment is key, and an essential service designation vital, so that the work of day care centres for the dementia community in my home town is safeguarded.
In 2015, the then Prime Minister set an ambitious 2020 dementia challenge. Funding for vital research has been increased, and diagnosis rates have increased. With programmes such as Dementia Friends, awareness has increased too. There is change and there has been progress, but we must continue with new urgency to take up the deeper, wider reform of social care. Let us dare to reimagine it. There will be a wealth of learning from this pandemic about the solutions that we need to put in place to better protect people affected by dementia during the pandemic and beyond. That is the view of the Alzheimer’s Society.
I know that all hon. Members are concerned for their constituents, as am I. I am keen to hear further from the Minister, and I do not underestimate the challenge. Good work is being done, and I know she is committed to getting it right.
[Sir Graham Brady in the Chair]
Judith Cummins (Bradford South) (Lab)
It is a pleasure to serve under your chairmanship, Sir Graham. I thank my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) and the hon. Member for Strangford (Jim Shannon) for securing this important debate, and I am pleased to follow the hon. Member for Eastbourne (Caroline Ansell).
I want to start by talking about my constituent Tracy Gothard. Tracy released a video of what happened when she visited her mum Doreen, who has dementia, in a nursing home in Bradford. In the clip, we see what so many of our families are currently going through. Hon. Members might have seen the footage. In it, Tracy and her sisters stand outside and speak to their mum in the car park through a closed window. Doreen asks Tracy to come inside and motions with her hand, to which her daughter replies “I can’t come in. We are not allowed yet because of that nasty bug.” Doreen’s face crumples, and she breaks into tears. It is a heartbreaking video, and I do not think that anybody can watch it and not be moved to tears.
The window meeting between Tracy and her mum was the first one that they had since August, when Bradford was placed under local restrictions. I asked Tracy what she would like me to say to the Minister on her behalf in this debate. She said:
“I’m begging from the bottom of my heart to give key worker status to just one family member, to help us see loved ones in care homes. This has now been ongoing for too long, and in my 51 years of life, I have never not seen my mum, especially at Christmas. I appeal to your better nature, on behalf of myself and thousands more, to not let this continue.”
Tracy speaks on behalf of everyone who has a loved one with dementia in a care home. Anyone who has cared for someone living with dementia knows that regular contact with family members keeps that spark inside alight. Digital visits are simply not appropriate, as people with dementia view the world differently. Memory clinics must reopen, and they need to be in person. As virtual memory clinics, they cannot simply replicate the quality and appropriateness of a face-to-face appointment for anybody living with dementia.
The Government need to recognise that family carers play an essential part in caring for people with dementia who live in care homes. When family carers are unable to visit and provide that care, the health and wellbeing of people with dementia can seriously decline at a rapid pace. I fully support the call by the Alzheimer’s Society and others to designate at least one informal carer per care home resident as a key worker, with access to testing, training, PPE and, when they come, vaccinations. The Government must urgently speed up their action on this issue, as time is not on our side. Will the Minister clarify whether an adult caring for an adult with dementia can form a support bubble with another household? The regulations are not explicit on that, and our carers need that support.
Finally, I want to quote from the hard-hitting report by the Equality and Human Rights Commission. It states:
“There is evidence that human rights standards may have not been upheld in the response to the pandemic, including in key decisions about hospital discharges, care home admissions, visits, access to critical care and prioritisation of testing, putting people with dementia and other care home residents at greater risk of harm.”
That should be a wake-up call to us all: inaction is not an option.
Elliot Colburn (Carshalton and Wallington) (Con)
It is a pleasure to serve under your chairmanship, Sir Graham. I add my thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this debate. Its importance is exemplified by the fact that my postbag has also been full of requests from constituents asking me to come along—I am therefore very grateful to her for securing it—and by the fact that, based on recent trends, it is estimated that well over 3,000 residents over the age of 65 in the London Borough of Sutton, where Carshalton and Wallington is situated, will be living with dementia by 2030. That is 38% higher than it is today.
Living with dementia can be incredibly scary and worrying, and it also has an effect on family and friends as they watch someone they love slowly deteriorate. My family had to go through that with my grandfather, Derek—it was one of the toughest times we went through. The family and friends of somebody living with dementia suddenly find that they are carers first, and family and friends second. As time passes and they start to recognise less of the person they love, that person sadly also recognises less of them.
The situation with dementia care was already incredibly challenging prior to the pandemic, which has only exacerbated the problem. As other hon. Members said, the Alzheimer’s Society has produced a hard-hitting report, entitled “Worst hit: dementia during coronavirus”. I want to highlight and repeat some of its stark findings, not least of which is the fact that 27.5% of all those who died from covid-19 between March and June had dementia. For the same period, dementia was the most common pre-existing condition for covid-related deaths. For people who survived the crisis, the effects of social isolation were severe. The survey shows that 46% of people with dementia reported that it had a negative impact on their mental health and 82% reported a deterioration of the symptoms of dementia. As has already been highlighted, 92 million extra hours have been spent by families and friends caring for a loved one with dementia, and 95% of carers have reported a negative impact on their physical or mental health.
The Alzheimer’s Society has two key asks for the Government—one for the short term as we continue to deal with the pandemic, and one for the longer term. The shorter-term ask is that we recognise the role that informal carers play in the lives of people living with dementia, as the hon. Member for Bradford South (Judith Cummins) outlined well. I am repeating what other hon. Members have said, but this is important. The asks are for at least one informal carer per care home resident to be allowed to be designated as a key worker, with access to training, testing and PPE. The Alzheimer’s Society asks that the Government ensure the delivery of carers’ assessments, provide short-term breaks for carers, and collect local authority and health authority data on carer assessments and respite care.
I do not think it will be surprising to hear that the second recommendation is about the long-term future of social care. I have a background in the national health service, so this is something that I am incredibly passionate about. I genuine believe that, alongside the long-term plan for the NHS, there has to be a long-term plan for social care, and the two must be integrated. We need to tackle not just the cost of care but problems with the care workforce, including career pathways, recruitment and retention.
Change is often unnerving, but to a person living with dementia an upheaval of the likes that the pandemic has brought is nothing short of terrifying. Indeed, if my grandfather was still alive today, I am genuinely not sure how either he or the family would have got through the last couple of months. I hope the Minister will look carefully at the Alzheimer’s Society’s report and its recommendations.
Chris Bryant (Rhondda) (Lab)
How the mind sits within the brain is still one of the great mysteries, I guess. I do not know whether Members have seen the ballerina Marta González listening to the music from “Swan Lake” and just beginning to be able to remember the choreography from years before. That inspired in so many a deep sense of that complicated relationship, where there is clearly a mind that has memories, but it cannot quite make the brain do what it wants it to do.
I wanted to speak in this debate because my family has been through quite a lot of that this year. I will talk not about that specifically, but about some of the things that have been common to many people in the country this year. Because many families have been isolated from other parts of their families, they have often not been able to check up on the elderly as frequently as they might want. They may not have been allowed to visit, especially if they are in different parts of the country, and they will not have been able to see the oncoming early signs of dementia. Doctors have sometimes simply been unable to diagnose, because they could not be in the physical presence of the person about whom there are concerns—diagnoses are a third down on normal, as we heard earlier.
The virus itself has, of course, added considerably to levels of anxiety, depression and a sense of paranoia in many people, with a growth in conspiracy theories. That has all added to the complications for families dealing with people who have early-onset dementia or other forms. The virus has direct neurocognitive effects that we are only just beginning to understand.
People have also had dietary issues, because they have not had access to the same kind of food as they might normally. That may well have added to their delirium, which, on top of dementia, can make it more difficult for people to go into care homes. They may need psychiatric support rather than care home support. Yet again, families are finding it terribly difficult during this time.
Families have found it very difficult to get help. The immediate instinct, once the diagnosis has come in, is for people to think about whether they can bring their family member into their own home. If that is not possible, they think about the other support there will be. Care homes have been up against it. There have been terrible anxieties about whether people have other comorbidities that will make it more difficult for them. Many families feel as though they have been bashing their head against a wall.
On top of that, of course, although lots of people had sorted out lasting power of attorney long before, which I would encourage everybody to do if they can, when I rang the Court of Protection, the emergency officer told me that emergency cases might be seen in nine months’ time. Sorting that out for an individual family member may make the difference between whether it is possible to get them into a care home and get them the support they need or not. Nine months—we cannot have that kind of backlog. That is a kind legal misery of the state on top of everything else.
I have done a lot of work on brain injury and some of the things are very aligned. It was terribly depressing to see the family of Bobby Charlton announce the other day that he has dementia, probably from concussion from heading the ball. I am sick and tired of people saying, “Oh well, the ball’s not as heavy as it used to be.” Did nobody do physics at school? It is about the speed of the ball, not the weight of the ball.
There is a lack of neuro-rehabilitation. A quarter of all major trauma centres still do not have a neuro-rehabilitation consultant. Some 57% of patients who have acquired brain injuries still complain that they are unable to get their full support. There is a massive funding crisis for all the organisations that work in that field, such as Headway, the UK Acquired Brain Injury Forum and many others.
My heart goes out to everybody, and my heart sort of goes out to the Minister, because there is a lot to deal with, but I do not think we will be able to do that unless we look at all these issues in the round. The one thing that I beg her to do is to set up a cross-departmental ministerial team that looks at it from Defence, Work and Pensions, Treasury, Health and Social Care—all the different Departments—so that we can really turn this around.
Simon Baynes (Clwyd South) (Con)
I, too, thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for her very impressive speech. As she said, it is a desperately important and overlooked subject, as has been eloquently expressed by many right hon. and hon. Members.
I come to this debate with two points of view. First, I want to give voice to my constituents in Clwyd South who have asked me to speak this afternoon. Secondly, I have a personal point of view, as my mother-in-law Alina had Alzheimer’s and my wife Maggie and I set up the Concertina charity about 25 years ago, which provides live music for the elderly in care homes and day centres across Wales and England. This not only brightens up their lives, but provides vital therapy for those suffering from dementia.
With regard to my constituents, I would like to comment on a letter I received from Gillian Molloy, who wrote to me about her experiences. She said:
“My husband has been in a care home suffering vascular dementia since November 2017. Before Covid-19 I visited him 4 times a week staying with him for 3-4 hours, mostly holding his hand, talking and playing the music he likes. Since March of this year I have only been able to see him for a period of half an hour 4 times, supervised by a carer. The lack of this stimulus, knowing my voice, smell and reassurance I am sure has been a contributing factor to his withdrawal and decline. He no longer makes eye contact or speaks to me. I find this very upsetting and stressful”.
I applaud the One Dementia Voice partnership in raising awareness of this vital matter with its five key points, which the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) outlined and which I support. I am encouraged that the Government have been taking this issue seriously. That has been touched on, and I am sure the Minister will comment further on it. There have been a number of initiatives and policies, such as the “Challenge on Dementia 2020” strategy, under which the Government’s commitment to spend over £300 million on dementia research between 2015 and 2020 was met a year early, with £341 million being spent by March 2019.
As others have mentioned, this debate is also about supporting the 5.4 million unpaid carers, for whom I know, from our own experience of caring for my mother-in-law Alina for three years at home, it is at times very challenging. When we set up our charity, Concertina music for the elderly, some 25 years ago there was much less understanding of Alzheimer’s and dementia. I am pleased that there is now much greater public awareness of dementia, which is vital in ensuring that people are supported to live well with the condition. I am very encouraged that there are over 3 million dementia friends.
I would like to return to the fifth point made by the One Dementia Voice partnership, which is how we will rehabilitate people after the crisis. I would like to add music to the mention of speech and language therapy. I have seen for myself at concerts we have organised how people who had not communicated for a long period of time suddenly came to life as they heard the songs and tunes of their youth, bringing back many happy memories from the past. Music in Hospitals & Care reported back to us a while ago after a concert:
“One of our patients has recently been bereaved and critically ill herself and at times lost the will to live. At the end of a concert she whispered to me, ‘I wouldn’t have missed this for the world.’”
Rachael Maskell (York Central) (Lab/Co-op)
I thank my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for the way she set out so many of the complexities in this debate. We know that the intersection between dementia and covid is complex and that there are multifaceted challenges. I am sure we will not touch on them all in today’s debate.
I thank the Alzheimer’s Society, which is supporting people with dementia day and night through this crisis. I echo its call, and that of the Association of Medical Research Charities, for a significant and separate fund to be set up—a life sciences-charity partnership fund—to continue medical research through this time. We know that those charities’ funding has been massively hit and that they need support. I trust that the Minister will feed that back to the Chancellor ahead of the autumn statement that we are expecting.
We know that 27% of the people who have died had dementia. There is a correlation with older people, because of the resilience they have, but the figure is also disproportionate within that age population. Research is therefore absolutely necessary in order to understand what is happening. From my own clinical background, I have considered the impacts that dementia has on people with respiratory conditions, and there are certainly issues that need to be looked at in greater detail. I believe that that has mitigated against opportunity for people with dementia and created inequality. For instance, people with respiratory conditions often find it hard to comply with some of the treatment processes: positioning, secretion clearance from the lungs, and the ability to follow complex instructions such as huffing, coughing and taking deep breaths. When not under instruction, they are certainly not able to do that.
We have also seen environmental challenges to healthcare. At the beginning, we saw no PPE and barrier nursing, which have been well debated. As was said in this Chamber yesterday, 39% of people with dementia live in care homes, and 70% of care home residents have dementia. That environment, in itself, has become unsafe, but it has also become a place of isolation, which has a real impact.
There is a big question around the efficacy of access to healthcare. We know that there was a reduction in referrals to healthcare, which meant drugs not being administered, as well as no therapy, physio or secretion clearance, as I indicated. That could well have raised the number of people who had covid and who died from covid. We therefore need to look at the human rights of individuals with dementia.
When we consider the psychological, emotional and cognitive impacts of separation and isolation, which have been articulated so well in this debate, we know that harm has been caused. I therefore ask the Minister to look at the report of the all-party parliamentary group on ageing and older people, which looks at a commission on the human rights of older people, and to look at the work that has been done in Wales on having a commission and a commissioner to look at those issues. That is a way of ensuring that older people are part of the debate. That will include many people with dementia, although I appreciate that some people with dementia are younger.
That would be a way of putting protections in place, and of ensuring that we care for the carers. This is the point that I want to end on. We know that the majority of carers are saying that they are exhausted, they are anxious, they are having sleeping problems, they are depressed. They are not part of the conversation at the moment, and we need to bring them into it. Many are lonely and struggling at this time. We need to care for those carers as they not only take on more and more responsibilities, but provide vital care day in, day out.
Imran Ahmad Khan (Wakefield) (Con)
It is a pleasure to serve under your chairmanship, Sir Graham.
The human consequences of this horrific pandemic have been the most painful to bear. As we have heard from all Members here today, we share a common bond forged in the fire of this pandemic. As Members of Parliament who serve our constituents, we are witness to stories of dread suffering caused by the circumstances created by our response to this virus. However, I have found that when constituents have written to me or met me to ask for help and support, and shared the circumstances that define their lives and the lives of their dementia-affected family members, it is then that one’s heart truly bleeds and one struggles to keep strong for them. When one finishes reading their letter or bids them farewell at the door, on considering their cases, one invariably finds one’s cheeks a little wet.
There is no gilding the lily. These have been, and continue to be, bruising, brutal days for all of us in the country. The impact that covid has brought upon dementia care patients and their immediate professional and familial carers is one of immeasurable emotional anguish. In my Wakefield constituency, 1,197 people have been diagnosed with dementia. The representations I have received from their carers and families through this pandemic have highlighted immense suffering above and beyond the explicit death count that the pandemic has brought.
I will raise two important points: the increased vulnerability of dementia patients during the pandemic and the irreplaceable nature of human contact. While we, as legislators, continue to interrogate and evaluate the data presented to us, we can say with certainty that age is a strong determinant in both the development of dementia and serious illness and fatality as a result of covid-19. Those with dementia are often susceptible to further underlying health conditions that affect their status of vulnerability. A joint study published by University College London and the London School of Economics in August found that people with dementia accounted for 25% of covid-related deaths in England and Wales, and for 31% in Scotland. As such, it is both rational and morally right to put dementia patients at the very front of the queue to receive the vaccine, to mitigate as far as possible the immense double distress caused by having dementia and a pervasive fear of catching coronavirus.
My second point is perhaps more poignant. We often speak of the pandemic’s disruptive capacity in bringing forward years of technological change in a matter of months. Dementia lays bare the irreplaceable nature of meaningful human-to-human contact in care provision. The very condition of dementia degrades people and, over time, deprives them of memories of their loved ones. In many cases, when only frail muscle memory remains, the only thing that provides a sense of recognisable comfort is the faint recognition of a family member or regular carer in an increasingly confusing and scary environment.
With the myriad rules and regulations that have been imposed upon us, that necessity becomes ever more critical. I am sure that many of us in this House have seen the distressing videos of a retired nurse being taken from her residential home by her daughter, a trained nurse. That was not only deeply distressing, but painful, and a sorrowful metaphor for the anguish that many care providers face when making decisions relating to their nearest and dearest.
As I said about breast cancer in the earlier debate in this Chamber, we must ensure that the cure is not worse than the disease. When imposing measures on the freedom of the individual, the state and its representatives must retain human kindness, compassion and decency at their very core.
Jim Shannon (Strangford) (DUP)
It is a pleasure to serve under your chairmanship, Sir Graham. I am very pleased to have sponsored this debate alongside the hon. Member for Oldham East and Saddleworth (Debbie Abrahams). Everyone here has a purpose and something to say about this issue.
We know from the Northern Ireland Statistics and Research Agency that of the 475 deaths in March and April—just two months—in Northern Ireland, a third were attributed to dementia on the death certificate. The impact on those who have dementia is clearly greater than elsewhere. In addition to thousands of tragic deaths in care homes, the effects of social isolation are a big issue: 70% of care home residents have some form of dementia, and the prevention of visits to care homes is having a hugely detrimental impact on their lives.
Contact with family and friends is vital to the wellbeing of people with dementia. Some 82% of participants in an Alzheimer’s Society survey reported a deterioration in the symptoms of people with dementia. People with dementia deserve better. The contribution of loved ones to their care and wellbeing should be acknowledged by the Government and reflected in the guidance to care homes on safe visiting.
I will mention one family, whose story is very real. They wrote to me:
“Our mum sadly passed away in September. We were not with her when she died. We had not been inside her home for over six months. In all that time, we saw her through a window. She didn’t understand why we were stood outside and kept telling us to come in. We were unable to hold her hand and unable to kiss goodbye.”
I understand that advice given to the Government by the Scientific Advisory Group for Emergencies in September stated that the transmission risk from visitors was low. That SAGE advice, which says that people could visit homes and there was less chance of infection from visitors, must be implemented and released by the Government. Why not give the family and the person in the home a wee bit of compassion in their time of need? The Government do not allow for loved ones to provide the personal care that the residents so desperately need.
I urge the Minister to implement the Alzheimer’s Society’s recommendations for ensuring that care homes are safe and adequate for the needs of people with dementia. The Alzheimer’s Society study on this put forward recommendations. We should follow its knowledge and the science. There have been some innovations, for example the initiative led by HammondCare. During its pilot service, funded by Innovate UK, HammondCare recorded highly positive outcomes for people living with dementia and care teams, such as reducing certain behaviours and carer stress, building capacity in the sector and reducing the use of statutory services. Plans are being explored to offer a subscription service across the UK to support care teams. The Minister may wish to explore that. The innovation in that pilot scheme has shown a way of doing this.
I ask the Minister to outline the scope of the key worker pilot in England. How will it be rolled out, and when and how will it be evaluated? Given the updated implementation of the care partner model that we have in Northern Ireland—it is always good to learn from each other—will the Minister ensure that the emotional and physical care needs of people with dementia living in care homes will be met, and confirm that it will not be another eight months before people with dementia and their loved ones are reunited?
Dementia is a subject close to my heart. I hope the Minister will listen to the experts and the families, and do all she can better to connect people affected by dementia.
Sir Graham Brady (in the Chair)
Before we move on to the wind-ups, I remind hon. Members that the debate will end at 4.33 pm and we hope to give the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) a couple of minutes at the end to wind up.
Patricia Gibson (North Ayrshire and Arran) (SNP)
I echo the congratulations and thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for her comprehensive and wide-ranging exposition of the effect of covid-19 on the those affected by dementia.
Yesterday, I participated in a debate—alongside several others here this afternoon—on family visit access in health and social care settings during the covid-19 outbreak. The two debates, though different, have significant overlap. I will try not to repeat myself. These matters are devolved to the Scottish Parliament, but as we face common challenges, it is appropriate for Members representing Scottish constituencies to take an interest and contribute to this important debate.
There are real concerns about how covid-19 has affected our constituents living with dementia. As we have heard, that effect has been deeply distressing and the consequences have been far-reaching and profound. I want to say more than I did yesterday about my own personal experience and insight into this. My mother-in-law, Iris, is in a care home in Saltcoats in my constituency. She has dementia and lockdown has caused a dramatic decline in her condition. I am no medical expert, but I do not believe her decline can be halted now. It is so bad that I do not think it will be reversed. I appreciate that might not apply in every case.
Even without the health pandemic, dementia is extremely distressing. Those who live with it lose a lifetime of memories and their sense of who they are vanishes. Just a few short years ago, my mother-in-law, Iris, was a long-serving Glasgow city councillor. She was a marathon runner and had run marathons all over the world. She thought nothing of travelling to the other side of the world simply for the joy of sight-seeing on her own. She was independent. She raised a family. She was always on the go, driven by a desire to improve her community. She was respected by all who knew her. Now Iris lives in a care home. She is unable to look after herself. She is confused. She is unable to recognise those dearest and nearest to her. She is a shell of her former self.
However, the speed of Iris’s decline since lockdown has been stark. Before lockdown, despite the dementia, she could have a chat and follow a simple conversation. Now she is barely able to speak. The isolation of covid-19 and the lack of stimulation has taken away her desire to live and she barely eats at all. I mention that because what has happened to Iris in the course of the covid-19 restrictions is not unique.
The lack of social contact with family, loved ones and even other care home residents, and the lack of stimulation that the restrictions have brought, have caused real distress for older people. They are locked in a world that is silent, solitary, confusing and bleak. It is a world that they do not understand, as the hon. Member for Birkenhead (Mick Whitley) has reminded us elsewhere—a world from which they and their loved ones fear they will never return.
We all want a return to normality. For people with elderly relatives, the fear is that their time left on Earth is so short that a wait for normality is distressing and frustrating. Some older people might not survive until normality returns, so they might never enjoy close contact again with their family. However, there are no easy or risk-free solutions to this problem—I said that in the debate yesterday. There is a very difficult balance between keeping our older people safe from covid and losing to them despair, and it is not easy to strike. I do not envy the Minister or anybody who is in charge of making those decisions.
It is important to remember that the average age of a person who dies with covid is 83. Many of the people who work in care homes will say that the older people dreadfully miss social interaction with other residents and their family, and it also takes a toll on those who work in care settings. Although we know that many people are keen to have contact with their elderly relatives who are suffering from dementia, people will also say—on the other side of the coin—that they are desperately keen to ensure that their elderly relatives are kept as safe as possible until we have a vaccine or the virus subsides with time. Whatever restrictions around care homes are lifted—I know that a number of hon. Members have called for that—they cannot be lifted without some risk to the elderly people who live in those care homes.
Let us not forget that older people living with dementia who are not in care homes need to be part of the conversation. Some older people with dementia are being cared for by close family relatives in their own home setting. As we have heard, carers will have faced their own difficulties since covid-19 restrictions were introduced. They, too, will be cut off and left on their own to manage as best they can with their caring responsibilities. Respite will be difficult to find, and shielding and covid-19 precautions shrink their world as they cope with a state of limbo in a world that has become much smaller for them.
The Scottish Government have been in regular touch with care representatives to ensure that their concerns are fully understood, and supporting unpaid carers has always been a priority for the Scottish Government—much more so now, in these difficult circumstances. The Scottish Government have established rights for all carers to have support and advice under the Carers (Scotland) Act 2016. The local implementation of those rights is backed by additional investment, which now stands at £39.5 million per year. That is so important, given the additional pressure that carers face due to covid-19. The carer’s allowance supplement increases carer’s allowance in Scotland by 13%, and it was one of the Scottish Government’s first priorities with its reserved social security powers, with an additional covid payment of £230.10 in June. That means eligible carers in Scotland will receive up to £690.30 more than those in the rest of the UK this year, with an additional £500,000 for carer organisations.
With all the uncertainty for our older people and their loved ones during covid-19, there is great distress. If someone is in their advanced years, they fear that they will never get to the other side of the pandemic and resume normality, which is what everyone wants. We have some prospect of a vaccine before too much longer. We are all keeping our fingers crossed for that, but we need to continue to look for creative ways to help combat the despair that we know so many older people with dementia feel and are confused about.
I said yesterday, and it is worth repeating, that for the large part we are talking about a generation whose youth was blighted by war and its aftermath, and now, in their twilight years, they are being blighted by this cruel virus in their old age. We need to protect and look after them. For many, the cost of doing that is the despair we have heard about today. The balance is very difficult to strike and there are no easy answers. I know the Minister feels the impossible weight of the task of trying to get the balance right. I hope she will be able to set out today what specific additional support may be available to those living with dementia, and those who care for those living with dementia, as this virus continues to blight their lives.
Liz Kendall (Leicester West) (Lab)
It is a pleasure to serve under your chairmanship, Sir Graham. I am so pleased that my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) has secured this important debate. I thank all hon. Members who have spoken so powerfully on behalf of their constituents.
The pandemic has taken an unimaginable toll on people living with dementia, the staff who care for them and the families who love and do so much to support them. There have been a staggering 23,000 excess deaths in care homes in England during the pandemic so far, more than 15,000 due to covid-19. When we consider that, as others have said, 70% of all care home residents have dementia, the sheer scale of the impact of this awful virus is brutally clear.
We must remember that people with dementia do not just live in care homes and nursing homes. Some 60% are cared for in the community and their own homes, and they have too often been overlooked.
We need to learn the lessons from what has happened so far. We desperately need long-term reforms that transform all care services, whether that is care homes or care in people’s own homes, so that we have a system truly fit for the future. The virus has brutally exposed the fundamental flaws in our care system that many of us have been talking about for a long while. The most obvious is that, for too long, frontline care workers, who are so essential in caring for people with dementia, have not been properly valued or supported and they have not been properly paid.
We can see that in the way that at the start of the pandemic, many frontline care workers just did not get the personal protective equipment they needed. I heard many stories of care homes saying that their masks and other equipment had been requisitioned by the NHS. I want NHS staff to have proper PPE, but that shows that, on the ground, social care is still not seen as equally important. We also saw that in testing. It took a very long while to get the regular testing that care home workers need. Domiciliary care workers are still not getting weekly tests. That is a real issue, as we see how much this virus is spreading in the community.
The third issue is—let us be honest—around the pay, terms and conditions of frontline care staff. They do some of the most important work in this society, which is looking after the people that we love most, but many of them barely even make the minimum wage, because they are not paid for travel times. The key thing that stands out for me is that the Office for National Statistics has clearly found that care homes that pay full pay when people are off sick, that are not so reliant on agency staff and that do not have such high turnover rates because of low pay, have lower infection rates. We really need to learn the lesson from that for the future.
I hope that the Minister will set out what she plans to do about these issues. Where are we now at with tests for domiciliary care staff? We have heard that NHS and care workers will be a priority for vaccines. Can she tell us whether that will include domiciliary care workers as well?
All hon. Members have spoken about the importance of families in caring for people with dementia. We cannot deliver good quality care for people with dementia without not just the involvement of families, but their active participation and support. That is not just because we all want our families to be there for us when we get sick and frail; it is because when someone has Alzheimer’s or dementia, their family is their memory. They are the ones who really know that person—the music they like, the songs they used to sing, the books they read, the films they love. No matter how hard paid care staff work, which they do, they just cannot know the person to the same degree, but the families get precious little help and support and they are too often ignored in the debate.
We know that, even before the virus struck, there were 9 million unpaid family carers in the UK. Since the virus began, 4.5 million more people have taken on caring responsibilities, which is three times the size of the NHS workforce. Many carers were already being pushed absolutely to breaking point before covid-19. One of the worst statistics that I have ever seen from Carers UK is that about half of unpaid family carers had not had a break from caring for five years, and yet those very people are on average taking on an extra 10 hours of caring a week, which is having a really bad impact on their physical and mental health.
So, I hope the Minister will set out what action the Government will take to help family carers. Will there be more funding for them to have breaks? How can we get day-care services back? And how will we actually identify all these new unpaid family carers, because, quite frankly, most people who are carers do not think that they are carers; they are just a son, daughter, husband or wife who looks after the person they love. But they desperately need information, advice and support.
Also, as practically every single hon. Member has said, we need to do more to help families who have loved ones in care homes. We had a big debate about this in Westminster Hall yesterday. I will repeat myself a little bit, because it is such a massively important issue. Indeed, in my 10 years as an MP, I have never been contacted by people who are not in politics about any issue as much as I have been about this one. It really is so important, because for eight months people have not been able to see their mums, dads, husbands or wives. What they do know is that those loved ones are fading fast, which causes enormous anguish, because if someone feels that they are letting down their mum, dad, husband or their wife, it will scar them for life. I know that that is what I would feel if I could not see my mum or dad.
I understand why Ministers are really worried about the risk that covid-19 will come back into care homes after the catastrophic loss of life we saw during the first wave of the virus, but we need to understand the situation. The Government’s own independent scientific advisers—the Scientific Advisory Group for Emergencies, or SAGE—said in a report published on 21 September that the risk of family members transmitting the virus in care homes is low. And 60 organisations, including the Social Care Institute for Excellence, the British Geriatrics Society, the National Care Forum, Alzheimer’s Society and Age UK, all agree, saying that there is no evidenceAll those groups support calls, as does Labour—and indeed many hon. Members who have spoken today—for at least a single family member to be designated as a key worker, so that they can get the testing they need and we can safely start visits again. We first called for this in mid-June and again in September. I hope that the Government really take action. Their latest guidelines—about floor-to-ceiling screens, or having visits outside— are not good enough. Also, they will not work; a screen does not work for someone with dementia. In case anybody had not realised, it is also now dark, cold and wet outside, so outside visits will not work.
Yesterday, the Minister for Care said that a pilot will start on Monday in four local authority areas, with 30 care homes, to test family members. I had a lot of calls about that overnight. Where are these local authority areas? How long will the pilot last? The bottom line is that I do not think a pilot is good enough. The average length of stay of someone in a care home before they die is two years. We have had eight months of lockdown. This is the last Christmas for some people. We must get everybody—all families—getting those regular tests, so that visits can start again.
In conclusion, I have argued for almost two decades now for the desperate need for long-term reforms to social care. In July 2019, in his first speech on the steps of Downing Street, the Prime Minister said:
“I am announcing now that we will fix the crisis in social care once and for all, with a clear plan we have prepared”—
I emphasise those words, “we have prepared”—
“to give every older person the dignity and security they deserve.”
Yet more than 15 months later, that “plan” is nowhere to be seen; in fact, we seem to be going backwards.
The Health Minister in the House of Lords, Lord Bethell, said on 28 October:
“I have to be realistic. We are in the midst of a Covid winter, when there are enormous challenges in keeping the show on the road…It just would not be right to launch an important and industry-changing reform process when the focus of everyone in social care is the protection of the vulnerable and our loved ones.”—[Official Report, House of Lords, 28 October 2020; Vol. 807, c. 226.]
The opposite is true; this is precisely the time when we need those reforms to give people, families and care workers hope that there will be a better system, and that when we have come through this awful pandemic we will not go back to the same stretched, miserable, awful system that too many people have had to cope with. Families, care workers and the system as a whole are at breaking point. In the 21st century, in one of the richest countries in the world, that is not good enough. It is the challenge of our generation to sort this problem, and I hope that when the Minister responds, she will set out how we will do so.
The Minister for Care (Helen Whately)
I thank the hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Strangford (Jim Shannon) for securing this important debate. I commend the many personal and powerful contributions from hon. Members, but I pay particular tribute to the work of the hon. Member for Oldham East and Saddleworth, who is the co-chair of the all-party group on dementia, and to the charities that she and I both work with, such as the Alzheimer’s Society.
It has not been easy to listen to hon. Members’ stories today. They are painful to hear, let alone for those who have lived them. Hon. Members have brought great knowledge to the debate, from the clinical challenges of diagnosing covid in those with dementia to the understanding of what makes a difference for those living with dementia, from physical contact to music. Hon. Members have brought to the debate a real understanding of the burden borne by informal carers across our constituencies. If anyone needed reminding about how lives are being blighted by the cruel combination of covid and dementia, they have been reminded. Even before the pandemic, people with dementia were some of the most vulnerable in our society; they were usually older and living with other health conditions alongside this terrible progressive disease, for which we still have no cure. Dementia was already the No. 1 cause of death in this country and, tragically, more than 12,000 people with dementia have lost their lives to covid—people who still had life left to live.
Many of my conversations over the past few months have been about how much worse the pandemic has made life for people with dementia, their families and their carers. For instance, restrictions that are hard for us can make life almost impossible for them. People with dementia can find it really hard to follow instructions or the rules and guidance on social distancing and hand washing. Being made to stay at home means that they may lose the independence that they used to have, and which they might never get back. For those living in care homes, there is confusion about why their families no longer come to see them. Although the care staff are often wonderful, how can they know someone’s needs as well as their partner, son or daughter, who perhaps used to visit several times a week or even every day?
Equally heartbreaking has been the experience of families who have been unable to see the person they love for many weeks, knowing that that person might be confused and lonely, and then, tragically, finding out that their health has declined. For carers, it has been extra tough without the usual support and respite care. I thank families and carers for their incredible resilience and for what they have done, day in and day out, for the people who so need their love and care. There are more than 5.4 million informal carers in England, from children to older people who themselves might be in need of support. That is why, as we bear down on coronavirus, the Government are doing all they can to support those who are living with the consequences of this cruel disease. I will briefly set out some of those things now. As I do so, I will pick up on the questions that hon. Members have asked during the debate.
First, I will outline the overall support that we are providing, as set out in the adult social care winter plan, which specifically drew on the expertise of those who are involved in dementia care. It sets out the Government’s commitments and our expectations of local authorities, the NHS and care providers. It includes our commitments to PPE for social care, to testing and to an investment of more than £546 million, bringing our funding for infection control in social care to £1.1 billion.
The hon. Member for Oldham East and Saddleworth asked me about parity of PPE and testing between social care and the NHS. We are now providing PPE for social care to meet all its covid PPE needs. Like the NHS, social care is getting the PPE that it needs for covid. In addition, we are providing regular testing—weekly for care home staff and every 28 days for residents—and social care has been at the front of the queue. We have also learned from and adjusted some of the restrictions from the first lockdown to take account of the difficulties for those with dementia and their carers. The hon. Member for Bradford South (Judith Cummins) asked, on behalf of her constituent Tracy, if an adult caring for another adult can form a support bubble with another household. As she probably knows, an adult can form a support bubble with another household as long as that household is a single person. The restrictions allow somebody entry into the house of a person who requires care to give care, and to give the carer respite. I will take away the question of a larger bubble—I have been asked about it by other colleagues, and she and I have spoken about it—and whether I can do anything further to help on that.
The hon. Member for Leicester West (Liz Kendall) spoke about day services. I know how important they are, particularly for people with dementia and those who care for them. That is why I worked with the Social Care Institute for Excellence to provide guidance to services on how they can operate in a covid-secure way. I have said that the infection control fund can be used to help with extra costs for day services, and I have urged them to reopen in a covid-secure way. I have also been working with the Local Government Association and the Association of Directors of Adult Social Services to find out about the provision of day services—how much provision is there, where are the gaps and what more can be done to increase it?
Many hon. Members spoke about visiting in care homes. I want people to be able safely to visit their loved ones in care homes, but this is hard. Covid has taken the lives of 15,400 people living in care homes, and we know that when covid gets into a care home, particularly one that is looking after people with dementia, it is hard to control. Anyone can bring it in, particularly since many people have covid without any symptoms, so they do not know they have it. That is why we have advised care homes to restrict visiting, particularly during this national lockdown when covid rates are high in much of the country; in some areas, as many as one in four people have covid.
I did not want care homes to be closed up again during this lockdown, as they were in the first time around. We are advising care homes to do things that many have already put in place, such as allowing visits through screens and windows, but I know that that is not the answer, particularly for those with advanced dementia. That is why we are launching our trial of visitor testing on 16 November in 30 care homes. We are trialling both PCR and lateral flow tests to find the best way of doing this, with the intention of rolling out testing for visitors across the country as fast we can in December. I want people to be able to touch, hold hands and hug again. I cannot say when that will be possible, but, believe me, I want to make it possible again.
I turn briefly to access to diagnosis. At the start of the pandemic, many memory assessment services were closed and dementia diagnosis rates fell below our national ambition for the first time in four years. While we have supported remote or virtual memory assessment services, I recognise their shortcomings. I want to see in-person services fully functional as soon as possible, because a diagnosis can make such a difference so that people can access the treatment and support they need. I know the hon. Member for Leicester West, who raised this point, will understand.
I want briefly to mention the important role of charities such as the Alzheimer’s Society and the Race Equality Foundation, which are doing particular work to support black, Asian and minority ethnic people with dementia. We have supported those charities with extra funding, but I know they have gone above and beyond in their work during this pandemic.
I conclude by saying that as we navigate these challenging times, we must never lose sight of what is important. Our efforts must not just be to save lives, but also to make life worth living for everyone—thinking hardest and trying hardest for those who live with the greatest of challenges. That means doing our utmost for those with dementia and their families.
Debbie Abrahams
I start with heartfelt thanks to everybody who has contributed to the debate. It is so nice to be in such a high-quality debate where we all work together, and where we see and agree on the issues. Now, it is about moving forward on the solutions. There was much consensus, particularly on how we make sure that families can visit their loved ones in care homes. I have huge regard for the Minister. She has real empathy, and I am grateful to her for turning it into action, but I ask her to make a commitment. If the trial is starting next week, will she come to the House and make a statement at the end of this month, so that we know the results of that trial and when in December it will be rolled out? My hon. Friend the Member for Leicester West (Liz Kendall) makes an excellent point that this may be some people’s last Christmas. For everybody concerned, please can we do our utmost to make sure that this happens?