A staggering 5,200 people with dementia are estimated to have died from coronavirus in the South East of England since the pandemic hit the UK in full force in March 2020.¹

They are among more than 34,000 with the condition to have died in England and Wales from Covid-19, making people with dementia the worst hit by coronavirus.

In addition, new calculations from the Office for National Statistics (ONS) reveal that deaths of care home residents, where at least 70% of people have dementia, are 30% higher than previously thought.

There have been almost 12,000 (11,624) deaths since January 2021, which includes care home residents who have died in hospitals or elsewhere.

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 face such hardship and loss.

Alzheimer’s Society’s 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 dementia³, an overwhelming 92%⁴ said the pandemic had accelerated their loved one’s dementia symptoms; 28% of family carers said they’d seen an ‘unmanageable decline’ in their health⁵, while Alzheimer’s Society’s support services have been used over 3.6 million times since the pandemic began.

Alzheimer’s Society’s Dementia Connect support line has been flooded with calls from relatives revealing 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.⁶

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.⁷

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.⁸

Alzheimer’s Society is calling for meaningful – close contact, indoor – visits to be the default position without delay from 8 March.

Orla Phipps who gave up her studies to live with her Grandmother Agnes said,

“Coronavirus has affected my life and the life of my family immensely. The worry about what could happen to my grandma, if we risked having multiple carers looking after her, is the reason I become her full-time carer and left college.

Just before coronavirus hit my grandma Agnes was in a care home recovering from a hip replacement. We were very lucky that she was able to come home just before the nursing homes closed their doors. If she had been denied visits from our family, her dementia would have progressed much faster and her cognitive function would not be as good as it is today.

I have received so many comments from people who follow our TikTok account, who have lost loved ones too, many of whom had dementia and were in care homes. It breaks my heart to think of those who have died without their loved ones by their side.

We must do better by those with dementia and their families, now more than ever. People with dementia need human connection and visiting restrictions have taken this from them. Moving forward we must make up for lost time and show them the care and dignity that they so greatly deserve.”

There are an estimated 850,000 people living with dementia in the UK, including more than 134,570 in the South East

Dementia organisations, including this coalition, joined forces as One Dementia Voice in July 2020 to call for designated family carers to be given key worker status to enable care home visits to loved ones.

Family carers are 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.

While the Government recently announced that indoor visits will restart for one family member from 8 March, the coalition emphasises that this must be the default position and that blanket bans on visitors (where there is no coronavirus outbreak) are unacceptable.

Jacqui Justice-Chrisp, South East Area Manager 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.”

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

• A Recovery Plan with the needs of people affected by dementia at their heart.
• Meaningful – close contact, indoor – visits to be the default position without delay from 8 March.
• An end to blanket bans on care home visits where there is no active outbreak.
• A recognition that family carers are integral to the care system.
• Family carers to register their carer status with GP surgeries to ensure they get vaccination priority, and call on NHS England to ensure all surgeries enable this
• Universal social care that we can all be proud of, free at point of use, like the NHS, like education – and providing quality care for every person with dementia who needs it.

Alzheimer’s Society’s Dementia Connect Support line – 0333 1503456 – [OK2] is available seven days a week, providing information and practical support for people affected by dementia.