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Dementia in lockdown: ‘When someone knocked, he forgot to social distance’

This is Dementia Action Week, raising awareness of those affected by the disease. During a year that put a huge strain on many, how did they manage?

Around 850,000 people are living with dementia in the UK, and with an ageing population somebody is diagnosed every three minutes. But it doesn’t just affect the person with the condition, it can take a toll on those caring for a loved one.

Now well over a year into the pandemic, people with dementia and their families are still getting to grips with how lockdown impacted their wellbeing.

The Big Issue spoke to Sheffield-based Ann, 75, whose husband John, 77, has Alzheimer’s disease about their experiences and how it feels to be emerging from Covid-19 restrictions.

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“We have been shielding together,” says Ann. “Before coronavirus we were going out quite a bit. John went to Singing for the Brain and a group we set up in the church, and we also did other activities regularly.”

The pandemic forced these groups online, but for John it wasn’t the same. 

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Ann says: “John’s very much a people person and really enjoys being around others, so when these sessions are moved virtually we felt it was a different dynamic and we didn’t enjoy it as much.”

Has being isolated from family and friends over the last year impacted on John’s condition?

“It certainly didn’t do anything to help. He didn’t understand about the virus at first but sometimes now he does remember. He would open the door when someone knocked, forgetting to social distance. He misses talking to people face-to-face.

“We’ve seen a few people since and John has been taken aback by how long it’s taken him to recognise people’s faces. We are really looking forward to spending more time with family and friends.”

During lockdown, Ann and John’s grandchildren would visit and talk to them through a window, no matter the weather. “One day they got soaked through bringing us doughnuts,” Ann says.

How do the kids understand what their grandfather is going through?

“Right from the start, when John received his diagnosis four years ago, our son always wanted to involve the grandchildren in a way they could understand John’s condition.

“They treat John exactly the same, and have given him the nickname ‘Tata’. When they play football with him, they call it ‘Tataball’, often because John has his own rules! But it’s a way to help them understand his condition.”

Ann and John are enjoying a bit more freedom themselves too, recently taking their first drive since the start of lockdown. “Our first trip wasn’t very exciting, only to the doctor’s! Actually everything seemed very fast. Driving was quite difficult, I found everything on the road going very quick, which made me feel old. I hadn’t really felt like that before.”

A dementia support worker has been vital through the pandemic. The couple had never claimed benefits before, but Ann was told what they were entitled to and within a fortnight they received support. She says many in their position may not be aware of the financial assistance that’s on offer to them.

“When you’ve got dementia you really need people to help you navigate your way around and prompt you to do certain things. Doing things on your own is difficult. Our dementia support worker helped us find out about Attendance Allowance, which we didn’t know about before. This kind of support, although it’s small, helps massively.

“The Companion Calls by Alzheimer’s Society have also been brilliant. She calls every week. It’s great to have someone to talk to, about anything! It’s the kind of conversations we’ve lacked because of lockdown, but you really need them. John and I enjoy them so much.”

For more information this Dementia Action Week visit the Alzheimer’s Society website: alzheimers.org.uk/get-support. You can also access these Alzheimer’s Society documents: Carers: Looking after yourself factsheet, Communicating factsheet and the Carers Guide on their website.

To sign the petition to #CureTheCareSystem and support Dementia Action Week (17-23 May 2021) visit alzheimers.org.uk/DAW. And for information, advice and support call Alzheimer’s Society Dementia Connect support line (0333 150 345) or visit our website.

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