‘I started noticing small things’: Caring for someone with dementia

This Dementia Action Week, 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.

Derek, 70, told The Big Issue about life as a carer for his wife Margaret, 81, in North Yorkshire’s Northallerton.

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Each year, Derek and his wife Margaret would holiday in the Costa del Sol.

“We used to go to a hotel there all the time, we were regulars,” says Derek. “We’d visit before Christmas and just after.

“In October 2017, it was another lovely trip, but I started noticing small things. I thought it’s just us getting old. Returning from the second trip after Christmas, that time is something I will never forget. On our way home Margaret turned to me and said: ‘So, are we going on holiday then?’ I still remember the shock from that so clearly.”

Margaret was diagnosed with Alzheimer’s disease six months later, and was cared for by Derek. The couple both benefitted from support groups and activities.

Derek explains: “Margaret used to get a Side by Side volunteer who would take her out singing every fortnight, she absolutely loved it. I had been going to a carers’ group meeting once a month.”

This all stopped with the pandemic.

This #DAW2021 we're calling on the Government to #CureTheCareSystem now, providing quality social care that is free & easy to access no matter where you live.

Read more on how high quality care can help people with dementia stay independent for longer. https://t.co/uNZ9iz2D1z

— Alzheimer's Society (@alzheimerssoc) May 17, 2021

“Life as a carer is difficult and there is so much you have to navigate. It can sometimes leave you feeling a bit low,” Derek says.

“I’ve been logging my experiences and suggestions to other carers on my website, dementiaguidance.co.uk. The Alzheimer’s Society have been a huge help. I get a Companion Call every week. They have heard it all! It’s so important people know these services are there. 

“The carers’ group meeting moved online at the start of the pandemic. We now meet twice a week and it’s still absolutely essential for me. It’s a space where you can support one another and give each other helpful advice.”

Derek is also helped by remembering good times from the past. 

“We’ve shared so many fantastic memories together,” he says. “Margaret used to win slogan-writing competitions all the time, it was a hobby of hers. She was fantastic with words and numbers.

“One time she won a Concorde trip to Barbados for us both! It was the first commercial flight on Concorde to Barbados. Another time she won a week’s stay at a hotel in La Manga, Spain. I keep all her competition entries and congratulation letters in a shoe box, there are so many.”

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.