Coronavirus: Self-isolation when you are affected by dementia

By Jessica Labhart
Broadcast Journalist, BBC News

  • Published
Mike and Liz BrookesImage source, Liz Brookes
Image caption,
Mike Brookes, an RAF veteran, has been living with dementia for nine years

As people are told to stay at home to stem the spread of coronavirus, some living with dementia are struggling to adapt to the change.

Mike Brookes, 77, was diagnosed nine years ago and his wife Liz worries he will be like a "prisoner... with little understanding of what is happening".

Like other families, they have been cut off from outside support.

The Alzheimer's Society said it was "seriously concerned" about self-isolation, but had plenty of advice.

Mr Brookes, an RAF veteran, has been isolating with his 64-year-old wife for three weeks in their home just outside Manchester.

Image source, Liz Brookes
Image caption,
Liz Brookes said the news had been very distressing for her husband

"Mike was an obsessive watcher of the news, but I've had to limit it now because I went into his room and he was in floods of tears," Mrs Brookes said.

"People with dementia may not always understand what's going on but they understand emotions, and that worry and anxiety has been passed on to Mike."

He struggles to remember to wash his hands and not to open the door, Mrs Brookes said, and has had a difficult time adjusting to his new routine.

"We potter around the garden," she said, which helps keep her husband active. He is building a planter so the couple can grow their own vegetables.

The Alzheimer's Society recommends staying active to "fight off boredom and frustration" during the pandemic.

Image source, Pat Horriben
Image caption,
Ms Horriben (left) has been totally responsible for her friend Ms Roberson's care since the lockdown

Pat Horriben, who cares for her friend Jane Roberson, said the pair had been going on long walks near their home in Bransford, Worcestershire, to keep busy and active.

The 81-year-olds also "keep up our singing", Ms Horriben said, "to The Carpenters and Simon and Garfunkel".

Before the coronavirus outbreak, carers would visit three times a week to wash and dress Ms Roberson, who would also visit a day centre on certain days.

"Now I'm back to doing Jane's personal care full time," Ms Horriben said.

'On your own'

Her friend, a former teacher, was diagnosed with dementia six years ago and has since lost her ability to communicate.

"So in these times of isolation, you really are on your own," Ms Horriben said.

The friends are supported by the Alzheimer's Society, which advises carers and those living with dementia to keep in touch with loved ones over the phone or online to ease feelings of loneliness.

The charity has also set up an online community for people to talk and share experiences as well as "companion phone calls" where volunteers will call people affected by dementia to help them feel connected.

"Many face being completely cut off from the outside world, potentially their carers, friends and family, causing them huge anxiety and distress," Kathryn Smith, from the Alzheimer's Society, said.

Supporting someone with dementia during the lockdown

The Alzheimer's Society has lots of advice for supporting people living with dementia during the coronavirus pandemic:

  • Look after your own mental health
  • Arrange deliveries for food, medicine and other essentials
  • Stay active to stave off boredom and frustration
  • Stay connected to loved ones online or over the phone
  • Develop a simple routine to reduce anxiety
  • Follow good hygiene, particularly when it comes to hand washing

Source: Alzheimer's Society

Feeling cut off was a major concern for Rachel Fearnehough. She moved her 75-year-old mum, Diane McDonald, into her home in Scarborough, so she could self-isolate with her family.

Image source, Rachel Fearnehough
Image caption,
Diane McDonald has moved into her daughter's home to self-isolate

She had encouraged her "fiercely independent" mum to move in when she moved to north Yorkshire from Wolverhampton last year, but the former psychiatric nurse refused.

"Isolation has been a big adjustment for her," Ms Fearnehough said.

She was concerned that if she continued living independently her sociable mum "would have gone into the village as normal".

"We explain to mum why she's here and what the government has said.

"Sometimes she has glimmers of her old self that comes through and she says 'Yes , I see', but then a few minutes later she says, 'Well I'm off to get a paper', and we have to explain again."

Cleaning windows

Ms McDonald, who lives in the Yorkshire village of Cottingham, loves to keep busy and is more used to caring for others.

Her daughter said: "We have to say, 'Well mum you're here to look after us', and find things for her to do like cleaning the windows and knitting to keep her occupied.

"She loves walking the dog, Hector, too, and I think if we didn't have him it would be a lot more difficult."

The Alzheimer's Society has compiled a list of activity ideas to keep people living with dementia active, but said it was always best to base these on their interests and preferences.

Despite the difficulties, the families are keeping positive.

"We were both war babies," Ms Horriben said. "That sense of people getting on with it, of managing and making the best of things has come back to us so that's what we are doing.

"I'm sure we can get through this together."

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