How people with dementia and their carers are coping in the pandemic

A few weeks ago, my 97-year-old granddad tested positive for coronavirus.

After spending a few days in Barnet hospital, being treated by the incredible NHS team, he beat the virus and walked out with his stick in hand and a smile on his face.

But ask him about it now – two weeks on – and he won’t remember a thing. 

My grandad was diagnosed with Alzheimer’s (a type of dementia) back in 2012 and since then my family have watched the disease slowly take the man we once knew away from us. 

It’s hard not to think about how my grandad must have felt in hospital surrounded by doctors and nurses dressed in head-to-toe protective gear, not understanding why he was there or why his family hadn’t visited.

But it’s not just people living with dementia who are struggling with the impact of coronavirus.

The pandemic has presented its own challenges for people caring for loved ones with dementia – from explaining what is happening to making sure they are kept safe.

Perhaps one of the hardest parts is the fact there’s no universal way to explain it. Every person is different, depending on how advanced they are. Some people – like my grandad – will forget about it within minutes.

Different families are having to navigate the pandemic in their own way – often with little support.

Tony Hall cares for his 74-year-old wife Barbara, who has had symptoms of frontotemporal dementia since 1999. Barbara is now in a wheelchair and can no longer talk.

Tony – who is the chairman of charity Bristol Dementia Action Alliance – tells ‘You can explain what COVID-19 is and you can try and explain it in ways they might understand but, of course, they have memory problems – so you’re telling them again 10 minutes later or in the afternoon.

‘They can’t remember why they are so restricted. Some are thinking about why they can’t go outside their care home and why they don’t have visitors anymore.’

Tony says that lockdown has disrupted routines for both him and Barbara – something that can be incredibly unsettling for people living with dementia. 

Barbara usually attends a day centre which gives Tony a chance to run everyday errands. But lockdown has meant that he doesn’t get this all-important respite. 

He adds: ‘I do feel in the current environment we talk about the NHS and people with COVID – which is important, we talk about people who aren’t having their operations (particularly people having treatment for cancer) – again that’s important. But dementia, as usual, seems to come off the list.

‘There’s not a lot of talk about “how are people with dementia” and “how are their carers coping in the current environment?”

‘Carers don’t get the support they need – I mean carers don’t mind caring they just need a few hours off now and again. So the opportunities for respite, in the current environment, aren’t there.

‘Can carers have respite? Well, where do they go? We are in lockdown.’

Emma Price is someone else who is concerned about carers during the pandemic – her father looks after her mother, who has Parkinsons and dementia.

Emma tells ‘I regularly take food over to their door and talk to them from a safe distance. It’s incredibly tough and my dad is exhausted.

‘FaceTime is tricky so we have been recording videos each day of my daughter and I to remind her where we are, what is happening and that we are in lockdown. 

‘While she is still confused we think this helps because it reminds her each day and shows we are also in lockdown.’

Much like Tony, Emma is worried about the lack of support carers are getting at the moment.

She adds: ‘I am so concerned about carers at the moment. My dad is doing a great job caring for mum but he is not what I’d call a natural “carer” it’s not sustainable – mum doesn’t sleep much which means dad gets no rest.’

Amy Thompson’s 66-year-old father Barney was diagnosed with dementia four years ago. He lives in Northern Ireland with Amy’s mother Cath – who is looking after him during lockdown.

Amy tells that while Barney was a little confused at first – especially in regards to the death toll on the news – he now has an understanding of the global pandemic.

She says: ‘He’s aware of it happening and of social distancing and he’s is conscious about not going out.’

Amy says her mum is trying her best to keep his routine as normal as possible.

She says: ‘His normal routine would be to have a list of things that are happening for the day, so she’s kept that up for him as much as possible.

‘She’ll write a list of what’s happening in the day and if he’s got any FaceTimes scheduled in.’

She adds that Barney usually takes part in the Alzheimer’s Society Side by Side scheme, whereby volunteers and people with dementia take part in activities together.

Barney’s volunteer usually takes him bowling but, because of lockdown, they’re having to find new ways of spending time together.

Amy adds: ‘He has a guy who takes him to bowl, so instead they have a coffee over FaceTime.’

How to speak about coronavirus to a loved one with dementia

Bernadette Mossman, healthcare director at Vida Healthcare, tells ‘It’s important to remember that people living with dementia may process information differently.

‘One must never assume the person can’t understand what is said, so start by exploring how much information can be processed and understood, then adapt accordingly.

‘Using a range of ways to communicate can also be very helpful, and more importantly, allow the person living with dementia the time to process information, ask questions and acknowledge their understanding. TV, newspapers, family support and regular conversations are all essential in enabling meaningful conversations and connections.

‘It is also important to consider choosing the right time to have this conversation. A time when the person living with dementia is rested, willing to enter into the conversation and have any devices such as hearing aids turned on will all aid communication.

‘Remember to keep information simple to follow and repeat regularly to support understanding.

‘This can also involve repeating the information throughout the day. The benefits of repetition include being able to adapt the style of sharing information if previous attempts weren’t successful.’

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