7th October 2020

People living at home with dementia and their family carers were disproportionately affected by lockdown, according to a survey by Wiltshire charity Alzheimer’s Support.

The charity kept in close touch with all the families it supports throughout lockdown. It says social isolation and loss of routines caused real distress for many, although some couples with strong networks and good physical health were able to create routines that helped.

Lockdown has certainly made living with dementia a challenge, and made us realise how important regular social interactions is.

Overall, symptoms such as memory loss, confusion and anxiety increased as people were cut off from their usual support. And family carers, many of them in older age groups, also struggled to cope with social isolation and in many cases extra workload.

Dementia symptoms worsen

According to the survey, 70 per cent of respondents said symptoms of forgetfulness and confusion worsened during lockdown, and 67 per cent said anxiety and agitation worsened.

One respondent said: “Mum had a great weekly routine. With no routine and no going out she became very confused. There was day and night confusion. And anger at not going out.”

Another, who lives alone with dementia, said she enjoyed going for walks as it was a chance to see other people and animals, but was becoming unsteady on her feet and afraid she would fall. She said: “I spent hours in my house just crying.”

Things that helped

When asked what helped during lockdown, 70 per cent said phone calls from Alzheimer’s Support staff had made a difference. “Keeping in touch lessened our feelings of isolation,” said one, and “Knowing someone cares and receiving a telephone call now and again has been a great support.”

Sixty-six per cent said they were supported by family and friends, and 36% had practical help from neighbours.

Around a quarter were able to use the internet to find activities, including online Zoom sessions run by the charity.

The online music sessions have been a real highlight of the week. They were a happy time to enjoy, as well as useful for giving a routine and to feel part of things. 

But most who responded said they were not able to access the internet.

Babs Harris, Alzheimer’s Support CEO said: “This makes for sobering reading. We knew so much already as we have been in constant contact with the people we support and we witnessed extreme carer fatigue and accelerating cognitive decline.

"We have always known that our services make an enormous difference to people's wellbeing. Sadly lockdown has proved it in a very harsh way. People told us time and again, in the survey but also in our long phone calls and other support situations, how much they missed us and need us back. So we moved heaven and earth to make that happen."

Find our more about living with dementia and Coronavirus

How we reopened community groups, Home Support and day clubs