Dementia: Covid-19

Debbie Abrahams Excerpts

Thursday 12th November 2020 Westminster Hall

[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.

--- Later in debate ---

[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?