Pandemic’s toll: over 34,000 people with dementia dead; care home deaths third higher than thought

Worst hit by coronavirus, a staggering 34,000 people with dementia are now estimated to have died from coronavirus since the pandemic hit the UK in full force in March 2020. In addition, new calculations from the ONS reveal that deaths of care home residents (where at least 70% of people have dementia) are 30% higher than previously thought  bringing total deaths to nearly 12,000 (11,624) since January alone.

A coalition of dementia organisations including Alzheimer’s Society, Dementia UK, John’s Campaign and tide (together in dementia everyday), have come together to say never again will those affected and their families face such hardship and loss. Our investigation has shown the pandemic’s toll goes even further than deaths from the virus. In a survey of 1,001 people who care for a family member, partner or someone close to them with dementia, an overwhelming 92% said the pandemic had accelerated their loved one’s dementia symptoms; 28% of family carers said they’d seen an ‘unmanageable decline’ in their loved ones’ health, while Alzheimer’s Society’s support services have been used over 3.6 million times since the pandemic began. Alzheimer’s Society’s support line and Dementia UK’s Helpline have been flooded with calls from relatives telling us how quickly their loved ones are going downhill, losing their abilities to talk or feed themselves.

Nearly a third (32%) of those who lost a loved one during the pandemic thought that isolation/lack of social contact was a significant factor in that loss. People with dementia in care homes have been cut off from their loved ones for almost a year, contributing to a massive deterioration in their health. A third (31%) reported a more rapid increase in loved ones’ difficulty speaking and holding a conversation, and quarter (25%) in eating by themselves. Only 13% of people surveyed have been able to go inside their loved one’s care home since the pandemic began, almost a quarter (24%) haven’t been able to see their loved one at all for over six months.

Family carers are absolutely integral to the care system, and to the people for whom they care - it’s they who know how to get their loved ones to eat, drink, take medicine - and are often the first to know when something is wrong, which is why the coalition is calling for visits, done safely, to be the default position.

Kimberley Peaks (47) is from Leicestershire. Her mum, Janet, (76), has dementia and has lived in a care home for the last three years.

'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 not just hit those in care homes. 470,000 people with dementia live in the community, many reliant on unpaid family carers for support. 42% of these carers say lockdown has caused a rapid increase in feelings of depression in their loved one, while over half (54%) say they’ve seen a rapid loss of memory. Carers themselves have been hugely affected – seven out of ten (73%) say that the last year has negatively impacted their mental and physical health, with anxiety (42%) and exhaustion (34%) the most cited symptoms. Over half (54%) saying that the pandemic has left them feeling less able to care for their loved one.

Liz Brookes (64) cares for husband Mike (78) who has been living with vascular dementia for nine years, but was diagnosed with Alzheimer’s in lockdown, over the phone.

'Winter was so hard, we are so worn out with it all. There were a few weeks recently where Mike couldn’t go to his day care centre which was tough. 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.'

Kate Lee, Chief Executive Officer 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 Admiral Nurse and Chief Executive at Dementia UK, said:

'We have seen first-hand 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.'

Nicci Gerrard, co-founder of John’s Campaign, said:

'During this past terrible year, those living with dementia have endured incalculable damage, loneliness and suffering. People have died of sadness, and those who love them will have to live with the grief and guilt of that. Now we must all come together to say that this is not the kind of society we want to live in and grow old in: it must never happen again.'

Together in dementia everyday Chair Jean Tottie 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.'

Alzheimer’s Society, Dementia UK, John’s Campaign and tide (together in dementia everyday) are calling for:

• Local health and social care providers to develop Recovery Plans with the needs of people affected by dementia at their heart.
• Meaningful – close contact, indoor – visits, done safely, to be the default position from 8 March.
• Local authorities and care providers, as the CQC said recently, to avoid blanket bans, which, where there is no active outbreak, are unacceptable.
• For NHS England and UK equivalents to provide guidance to GP surgeries to enable family carers to register their carer status – and for family carers to do so to ensure they get vaccination priority.
• Universal social care as a legacy of Covid-19, free at point of use, like the NHS, like education – and providing quality care for every person with dementia and in their families who needs it.