Coronavirus and dementia: ‘I’m scared to go out after lockdown’

People living with dementia have said they are worried about leaving home, because weeks of the lockdown have had a profound impact on their confidence and abilities.

Teresa Davies, 66, from Flintshire, was diagnosed with early-onset Alzheimer’s disease when she was 59.

She lives alone and has found lockdown has affected her ability to carry out small tasks.

“The other day I put a pair of socks on my hands instead of my feet and put the yogurt back in the knife drawer instead of the fridge,” she said.

“I feel like my dementia is getting worse: I’m doing a lot more random things, like when I popped to the shop and realised I’d put on my blouse inside out – I’d never do things like that before lockdown.”

‘Like being diagnosed all over again’

Ms Davies, a former landscape gardener, usually spends a lot of time on the train travelling around the UK to give talks on dementia.

Now, she said she had concerns about her ability to travel and speak to large groups.

“My biggest worry is that I won’t be able to travel on the train and things because it (lockdown) really has knocked my confidence.

“I’m jumbling up words or forgetting what word I mean because I’m not as social as I was, which means I don’t want to talk as much, I’m nervous about it.

“People are isolated the moment they get diagnosed with dementia and going through lockdown, well it’s like being diagnosed all over again.

“And in Wales we’ve still got a few weeks left so I might be even worse then,” Ms Davies said.

Michelle Nelson-Greensmith, 57, from Merseyside, who has vascular dementia, said she had struggled to think about life outside of lockdown.

“I feel like I’m in an experiment,” she said. “I just don’t get it, I don’t understand why we’re in this situation.

“I just feel scared all the time and scared to go out now and after lockdown.

“I keep worrying I’m going to get the virus and if I see something online or on the news about it, it takes weeks for me to get it out of my head,” Mrs Nelson-Greensmith, who worked for the Environment Agency during the swine and aviation flu outbreaks, said.

She has been able to go to the supermarket with the help of her husband, Richard, but found it difficult.

“I don’t understand what I have to do and I tell myself I’ve got to go one way and keep a distance then someone goes the other way and I have to stop and think whether I’m doing it, then I forget what I’m there for.

“All the new rules make me not want to go out really.”

But for Masood Qureshi, 56, from Stoke-on Trent, who has Alzheimer’s disease and fronto-temporal dementia, the lockdown has been a different experience, as he has been living with his three children and grandson.

“I feel like I’m one of the lucky ones because I have my family around me and it’s given me more time to spend with them and to reflect on this situation,” he said.

“But it has been stressful for them, I sometimes feel like I’m imposing.”

Mr Qureshi, a former factory worker and accountant, said he had been missing his support group and visiting the mosque during Ramadan.

“In my peer support group we’d be able to talk about our deep feelings on how we’re coping and sometimes it’s difficult to do that with your family,” he said.

“I’m missing the mosque a lot because you’ve got your friends there, the whole community is there and it’s a holy time at the moment, so not having chance to meet up there is very difficult.”

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Mr Qureshi said he was not sure how lockdown would affect him in the longer term.

“I’m calling up my friends and I’m finding it’s taking all my energy to just speak to people,” he said.

“And in the back of my mind I’m concerned how people are coping because we’re all dealing with this in different ways, with our own frustrations.

“I’m just reminded, every Thursday (when we all come out for the clap) that we’re not alone even if we do feel lonely.

“I’m hopeful that the world will come out of this in a better place, society will be happier, and no one will take others for granted.”

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