This is what lockdown has been like for some of those living with dementia

Michael Andrews describes how he feels when ‘the fog’ descends. “I get this funny feeling in my head,” he says. “It’s hard to describe, it’s like a foggy feeling...If I don’t go and get somewhere where there’s no noise, where it’s quiet, and lie there for about fifteen minutes until I come back to normal, I go into total confusion.”

Michael lives with Posterior Cortical Atrophy (PCA), a rare form of dementia which affects his eyesight, visual perception and memory. When what he calls ‘the fog’ sets in, he struggles to remember where he is or what he is doing - and when lockdown started, he found he was getting those episode more and more.

“Before the lockdown, I could go a month. With the lockdown, I was getting it every day, sometimes two or three times a day. I think it was because I always worked on a routine. I’ve got to keep a routine to keep me sane and active. With the lockdown, all my routine vanished.”

The 60-year-old, who lives in Bradford, has written a blog on his experiences during lockdown as part of a series by the University of Bradford’s Centre for Applied Dementia Studies. The centre has been sharing moving accounts of people living with dementia or caring for someone with dementia, with the insights viewed more than 2,500 times in April alone.

Michael, who works closely with the university as what it calls an ‘expert by experience’, struggled at first to deal with the PCA diagnosis in 2017. “I didn’t want to see anybody, I didn’t want to tell anyone that I had dementia. But I think that was because I didn’t understand it. I was still working age and I thought dementia was an old person’s thing. I became like a hermit.”

In time, Michael, who joined the British Army at 16, later becoming a lorry driver after he left, came to better understand the PCA and focus on what he was able to do. “When I was in the Army, they used to say there’s no obstacle you can’t overcome,” he recalls. He soon found that a routine of getting out of the house and spending time with others helped him.

“Basically I would go out in the morning and I wouldn’t come back until 6 or 7 at night. I was out all day and that kept the dementia at bay for me, that kept me going. But with the lockdown, all that has been taken off me. I can’t see anybody.”

“At the start, I wanted this to end so I could get out,” he reflects. “Now I really don’t. I don’t want to go out. I think because now I’ve got used to being at home...“I know I’m safe at home. And I don’t understand what’s happening outside of my door.”

For Frances Isaacs, who also lives with PCA, being at home helps her to feel safe, secure and “relatively in control of my dementia”. “For me going out was always when everything really showed up,” she explains. “Being able to not go out if I don’t want to and not having to do some of the things I used to do has been less stressful.”

Frances, 74, who lives in the Brecon Beacons with her family, has been spending her days walking, painting and writing and has also been doing a degree course in fine art. “I’m very very happy at home. I know it sounds a bit boring, but I do love it here. I have my hobbies,” she says.

In her blog shared by Bradford University, the former fundraising consultant says she is grateful for technology. She’s been able to have a virtual consultation with a memory clinic and has continued to chat to those who normally attend her dementia group using media such as Zoom and Whatsapp. “I live in an isolated area so the only thing I miss is seeing my friends.

However, Zoom has been a huge gift in that respect and I now know my neighbours far better than I did.”

Michael has struggled with Zoom at times - “if there’s a lot of people, it started becoming confusing for me because I couldn’t work out what was happening. I can only do Zoom if there’s only a couple on it” - but he’s benefitting from technology of a different kind.

Before the lockdown, he would buy ready prepared potatoes and vegetables when cooking, but when he started having food delivered, he found himself needing to chop and peel them, a skill he struggled with - until he purchased an electric device that does it for him.

“I found that I’d forgotten how to use a potato peeler. I was chopping all the tops of my fingers and had to go on Amazon and buy a load of dressings and plasters,” he says. “There’s a thing with dementia - you either use it lose it. You’ve got to keep doing things otherwise you forget how to and I think that’s what’s happened with me.”

In a similar vein, fellow ‘expert by experience’ Wendy Mitchell, who also holds an honorary doctorate from the university, says her opportunities for social interaction “have disappeared” and as a result, she’s noticed she has struggled more with her speech.

In her own personal blog, Which me am I today?, she writes: “Talking to others is now a luxury. No longer am I starting off my day chatting to my taxi driver, chatting to fellow commuters, chatting to people at events and then all the way home in reverse.

“Sadly this isn’t working in my favour as I’ve found myself having to concentrate so much when I do talk; have more problems word finding; find myself stuttering and grappling with words, my speech slowing down...I’m not talking anywhere near as much, so when I do, I struggle more than before.”

Wakefield-born Wendy was diagnosed with young-onset dementia in 2014 and later wrote a book called Somebody I Used to Know about her experiences. The 64-year-old says to begin with, lockdown felt like she was being diagnosed all over again, “feeling abandoned, isolated”.

“I thought straight to the end of this when life would get back to normal and whether I would have forgotten how to travel, forgotten how to do all the things I did,” she says. “We were missed off so many lists needing help, like supermarket priority lists.

“But just like when I was diagnosed, I realised that the only person that was going to help me was me. So I started to adapt. I started to concentrate on today once more and enjoying today, just like I did back then.”

In one blog entry, Liz Jones, who lives in Leeds, talks about her experience of supporting her mother, who is 94 and has severe Alzheimer’s.

Before lockdown, Liz and her three siblings would regularly visit her mum, who lives in extra care housing, but one brother, who works in the NHS, has had to stop going completely and the others each now bob in with shopping once every three weeks.

“We’ve gone from seeing her very regularly, taking her out, going on day trips, having picnics to just seeing her once every three weeks for each of us and it’s been quite tough. It’s tough for her too. To be honest, she doesn’t remember whether we’ve been or not so in some ways it’s no different for her in that when we go she loves to see us, she’s delighted."

Sadly, her mum often feels lonely. And now her social activities and daycare service are on hold.

“Because she forgets we’ve been, she feels lonely all the time. When there’s nobody there she feels lonely and it doesn’t matter if we’ve just left, she feels lonely the second we’ve gone.

“She no longer has the cognitive ability to do the things she used to - she can’t watch television because she can’t remember the plot, she can’t read a book because by the time she gets to the bottom of the page, she can’t remember what’s happened, she can knit but she can no longer follow a knitting pattern.

"She’s lost her capacity to do all the things she used to do to keep her entertained. And the people who helped her with the loneliness and boredom, her family and her friends, we can’t go.”

Liz and her family have put up notices in her mother's home to help her understand what is going on with the coronavirus.

“When you’re there and she’s reading the notices, she understands them. She’s very respectful of them," Liz explains. "But she doesn’t always read them. There’s one on the front door saying please don’t go out, there’s a very severe virus, the Government have asked us to stay indoors.

"She’s not bothered about whether she gets coronavirus or not but she is very big on civic responsibility and not spreading it so she totally understands that - whilst you’re there and if she reads the notice, she will follow what’s on it. The thing is that it’s become something that’s just there and she doesn’t read it anymore so you have to draw her attention to it so she will understand and obey it.”

In the blog, Liz praises care staff, saying they have “become her family as well as being professionals; their cheerful courage is remarkable”.

“We try to do the things that they need us to do and they reciprocate that and I would say that’s the most important thing. The care staff are absolutely fantastic, so loving and strong and brave to do what they do.”

For many of those writing the blogs, as well as people reading them, the outpourings are offering hope and comfort and the catharsis which comes through shared experience. “In times of crisis, people seek personal connections,” explains Dr Ana Barbosa, interim leader on Bradford University’s MSc Advanced Dementia Studies Programme.

“We can look at this from two different perspectives. From the person writing the blog, I think that gives that person a voice and it is also a way of expressing feelings. It allows the person to connect to others and helps them to reduce feelings of isolation and improve wellbeing.

“The other perspective is of the person that reads the blog. We are increasing people’s knowledge and awareness of people having dementia. And some of the people that read the blogs may also face the same challenges and difficulties and may identify with the person that is writing the blog. It helps people to feel they are not alone.”

The centre has been running blogs for four years but until lockdown began, they were predominantly focused on sharing its work. They’re now being published more regularly, with a focus on the varied experiences of dementia during the pandemic.

“What I hope comes out of it is that it makes people more aware of people with dementia,” Michael says. “That’s one of the biggest things that I think needs to be improved... That’s why the blogs are good, they’re letting people see what people’s different views and experiences are.”

Wendy agrees. “It’s important that all voices are heard from people with dementia,” she says. “All our experiences are different so one voice will never give a full account of the picture.”

Visit blogs.brad.ac.uk/dementia

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