Eight in 10 people living alone with dementia completely isolated since March

Eight in 10 people living alone with dementia have seen no family or friends since March, while tens of thousands more regularly spend up to a week without having a single in-depth conversation, research has found.

The largest ever survey by the Alzheimer’s Society reveals that about 56% (510,000) of those with dementia, and 80% (96,000) of those who live alone with the condition have been completely isolated since the coronavirus lockdown began.

As a result, the survey of 1,831 people affected by dementia found, a third of those living with the condition now feel like “giving up”.

Kate Lee, chief executive at the Alzheimer’s Society, said: “As lockdown begins to lift and the true extent of its knock-on effect to the health and wellbeing of people with dementia becomes evident, we’ve heard from people up and down the UK who are scared, lonely and struggling to cope.

“Thousands of people with dementia, worst hit by the virus, have tragically died. Additionally, the dreadful deterioration of their mental health risks scarring thousands more in the long term,” she said.

Chris Maddocks, who lives with dementia, said: “My mental health and state of mind has taken a hit because of coronavirus and I know I’m not alone. I have been much more depressed and anxious. You can never underestimate the power of social contact and being around loved ones, particularly for people living with dementia.

“I hit a down point. It’s like a bereavement because it happened so quickly and I felt like there were no alternatives. You’re left without a routine and stuck in limbo. I can’t help but feel hopeless and helpless as I look to the future.”

There are currently about 850,000 people with dementia in the UK, about 120,000 of whom live alone. The number of those living with dementia is projected to rise to 1.6 million by 2040.

More than a third of people living with dementia who answered the survey said they had lost the confidence to leave their homes since the pandemic outbreak, despite the loosening of some lockdown rules.

Related: How did we end up turning our care homes into jails of enforced loneliness?

Lee said the neglect of the social care sector during coronavirus has significantly affected people with dementia, who are the main recipients of social care: 70% of people in care homes and 60% of those reliant on home care have dementia.

“Previous surveys have found that over a quarter of those who have died with coronavirus had dementia, making it the most common pre-existing condition for deaths,” she said.

“Aside from coronavirus, ‘unexplained excess’ deaths from dementia were 83% higher in England in April and 54% higher in Wales, with nearly 10,000 deaths in total,” she said. “The evidence is clear between loneliness or depression and premature death, and we know that around half of those living with dementia are struggling to cope in the current crisis with over three-quarters feeling more lonely or isolated than before.”

Caroline Abrahams, Age UK’s charity director, said: “This new research confirms our worst fears about the catastrophic psychological impact of lockdown on many older people living with dementia – huge collateral damage from this terrible pandemic.

“This survey is also a reminder of the importance of ensuring those living alone with dementia in their own homes are not forgotten to.”