"It was like he fell off a cliff" - the devastating effect of lockdown on a Leeds dementia sufferer aged just 57

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A devoted couple have found themselves living 25 miles apart after a 57-year-old's dementia was exacerbated during lockdown.

For the last three years, Jackie Powell had been the carer for her husband Keith who was diagnosed with young onset dementia aged just 53.

They still lived at their marital home at Woodlesford and benefited from the help of local groups but, when lockdown was implemented in March, the condition of the former national account manager for a brewery, took a "rapid" decline - and she ended up having to say a heart-breaking goodbye to him in a care home car park.

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Keith is now living in a care home after suffering several falls at home, and banging his head during one, and Jackie conceded that she could no longer keep Keith safe at home and reluctantly made the decision to find him a care home placement.

Keith and Jackie in Tuscany before he fell ill.Keith and Jackie in Tuscany before he fell ill.
Keith and Jackie in Tuscany before he fell ill.

But, she says, the decline in his condition was caused by a change in routine and no longer being able to attend the Young Dementia Hub in Cottingley, which he used to do five days a week.

She said: "It was like he fell off a cliff. Keith used to love going to the Hub. He struggles with communication and wasn't much of a joiner in, but he liked the hustle and bustle, the music and the food. It got him out the house and gave his day some structure.

"With lockdown and social distancing, the Hub had to close its doors. They took their work online, running quizzes and talking sessions, but Keith's dementia is too advanced and he was not able to engage."

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Jackie says Keith went downhill, spending more time in bed, becoming increasingly repetitive in his actions and starting to have falls.

On holiday in Dubai in happier times.On holiday in Dubai in happier times.
On holiday in Dubai in happier times.

Seven weeks into lockdown he had one particularly bad fall and two days later, he was moved into a care home.

"I had said goodbye to him in a care home car park, as I wasn't allowed inside. I didn't want to put him into care; that was the last thing I wanted. But it was an emergency resort to his changing needs. I really wanted him at home as long as humanly possible but I can't provide 24 care and supervision.

"The good news is that he has settled in OK, the home has had no Covid cases and he is sleeping better than he has in a while. He used to be up between 15 and 40 times a night.

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"But the silence in the house is deafening. I can hear him saying 'take me to the other room, take me to bed, take me to the toilet', which I used to hear 100 times a day. I miss it and I miss him. Things will never be the same again but at least he's safe. Lockdown brought a new way of life for us - it massively exacerbated his dementia and has left him needing 24 hour care."

Keith now at the care home where he is living.Keith now at the care home where he is living.
Keith now at the care home where he is living.

Her story comes as carer support charities fear some local authorities may cite the new Coronavirus Act, which was rushed through in March, to deny carers their rights as it gives local authorities the right to invoke Care Act easements.

Karen Greenhalgh, from charity tide (Together in Dementia Everyday), is project manager for Law For Dementia Carers, a partnership with national charity Making Space, that aims to help carers understand their legal rights.

She said: "The Coronavirus Act gives local authorities the right to invoke Care Act easements where this is considered necessary, which may affect services that have previously been on offer. This could include personal care and support for people living at home. This can have an enormous impact on people with dementia and their carers.”

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An online survey is now open until August 3 and the charity hopes that people will take part in order to influence a review of the Coronavirus Act that is set to take place in September.

Take part in the survey hereKathryn Penrith, consultant Admiral nurse, Making Space, added: "As the Coronavirus Act is up for review in September, we are working with families to ensure their voices are heard in the review process. Our Law for Dementia Carers project invites carers to fill in our online questionnaire so we can share their experiences."

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