More than 34,000 people with dementia are estimated to have died from coronavirus in the UK since the start of the pandemic, according to new figures.
The condition has been identified in just over a quarter of all deaths due to Covid-19, partly due to the large number of deaths in care homes. Nearly 12,000 care home residents have died since January alone.
A coalition of charities, including Alzheimer's Society, Dementia UK, John's Campaign and Together in Dementia Every Day (tide), are now calling for introduction of universal social care – free at the point of use like the NHS – as a legacy of Covid-19.
The charities said they had “come together to say never again will those affected and their families face such hardship and loss”.
It comes as new figures from the Office for National Statistics revealed that deaths of care home residents, where around 70 per cent of people have dementia, are 30 per cent higher than previously thought. Nearly 12,000 have died since January alone.
The charities also revealed the result of a survey of 1,001 people who care for someone close to them with dementia, demonstrating that the toll of the pandemic reaches further than simply deaths from the virus.
More than nine in ten (92 per cent) said the pandemic had accelerated their loved one's dementia symptoms, with a third (31 per cent) reported a more rapid increase in difficulty speaking and holding a conversation, and a quarter (25 per cent) in eating by themselves.
Nearly a third (32 per cent) of those who lost a loved one during the pandemic thought that isolation/lack of social contact was a significant factor in that loss.
Only 13 per cent of people surveyed have been able to go inside their loved one’s care home during the pandemic, and almost a quarter (24 per cent) haven’t been able to see their loved one at all for over six months.
The Alzheimer Society and Dementia UK said their helplines had been flooded with calls from relatives reporting how quickly their loved ones were deteriorating.
Kimberley Peaks, whose 76-year-old mum Janet has dementia and has lived in a care home for the last three years, said: “This past year has taken such a toll on my mum. Before the pandemic, I would visit two or three times a week, help feed her, play her favourite music. She would look at me, smile – she always knew I was there.
“But now being behind a screen 10 foot away means she can’t see me and she’s stopped reacting to me being there. She’s lost the brightness in her eyes and she just sits hunched in a chair.
“I’ll wear all the PPE I need to, but she needs me to be near her and talk to her close up. My kids miss her too, she’s their only grandma and she hasn’t seen them all year. I’m so pleased that in-person visits will be starting again, but that doesn’t take away from how devastating this year has been.”
The pandemic has also hit many of the 470,000 people with dementia who live in the community and rely on unpaid family carers for support.
Over half of these carers say they have seen a rapid loss of memory in their loved one, while 42 per cent say lockdown has caused a rapid increase in feelings of depression.
Many carers also report that they have been left feeling less able to care for their loved one, with 73 per cent saying that the past year has affected their mental and physical health.
Liz Brookes, who cares for her husband Mike, 78, said: “Winter was so hard, we are so worn out with it all. As carers we’re so lonely, we’re isolated, exhausted and traumatised. Mike is losing skills all the time, and as his carer I have to self-isolate for him – I have to protect what he is doing. My own isolation is magnified, but I don’t want to jeopardise him.
“We’ve both had our first jab of the vaccine which is a great relief, but that doesn’t change how difficult this year has been. People talk about how we’ll ‘bounce back’ from this – but how does someone with dementia bounce back? Things need to change.”
The charities are urging the government to ensure that local and national support is in place for people affected by dementia to ensure that "it never happens again".
Kate Lee, CEO at Alzheimer’s Society, said: “Coronavirus has shattered the lives of so many people with dementia, worst hit by the pandemic – lives taken by the virus itself, and many more prematurely taken due to increased dementia symptoms and, in part, loneliness. Each one leaves behind a grieving family.
“Family carers, too, have been buckling under the strain. We urge the government to support people affected by dementia whose lives have been upended, putting recovery plans in place, but also making the legacy of Covid-19 a social care system that cares for the most vulnerable when they need it.”
Dr Hilda Hayo, chief executive at Dementia UK, said: “We have seen firsthand how challenging the pandemic has been for families with dementia. The sudden closure of support and respite services, the separation from family and friends, and the deterioration coming from all of this, has led to families storing up huge amounts of emotional distress. This will be felt long into the future.
“We absolutely need to ensure that no families with dementia get left behind on such a scale again and we urgently need to see the national and local support in place now for families going forwards.”
Jean Tottie, chair of tide, said: “Carers of people with dementia struggled to cope as support services were withdrawn overnight. The shutting of day centres and the withdrawal of carers support meant carers were left to cope 24/7 on their own. This cannot be allowed to happen again.”