Dementia Awareness: ‘Life doesn’t end with diagnosis’

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Ahead of Dementia Awareness Week (May 15-21), a Seaford care home has told the story of one of its residents to show how life doesn’t have to end with a dementia diagnosis.

When Sheila Winterton’s husband Derek developed dementia in 2008, she cared for him at home. However, his increasingly-challenging behaviour meant Shelia had to find help to get her life and their relationship back. Derek has been at Clifden House Dementia Care Centre, in Seaford, for the last 18 months. This is their story.

Sheila Winterton, 76 and her husband Derek, 80, married in 1959. Sheila worked in a care home, Derek worked as lift engineer.

“It was about 2007 when people started noticing a change in Derek,” said Sheila.

“It was small things initially. For example when we went out for a coffee together, he would order two of each, or he’d put the cutlery back in the tray but it would all be the wrong way round. Sometimes he’d make a cup of tea and it would be cold, or he’d make it with milk one day and without the next.

“Getting a diagnosis made it easier in a way because we knew what we were dealing with, but at the same time it was hard to accept as he’d always been very active – mentally and physically.”

The couple had support from family and friends and initially, carried on as before.

“I wanted to keep things as normal as I could, for as long as I could,” she said.

About two years ago, Derek’s behaviour started to change and he became aggressive towards Sheila.

“It was at this point that I started to find it difficult to cope,” she said. “You don’t know anything about dementia until you’ve had to deal with it yourself on a daily basis. You’ve got to be there 24/7. It’s not a straightforward disease.”

Derek had some respite care and it was at that point they decided as a family that Derek needed specialist care on a more permanent basis.

“It was an awful decision – one of the hardest I’ve ever had to make - we’ve been together 60 years,” said Sheila. “A friend recommended Clifden House. It’s big and open, and they allow their residents the freedom to walk around, but the security of someone being with them. Derek is a wanderer so that suits him.

“It’s got a relaxed atmosphere, where the residents live and engage rather than exist. The staff are welcoming and genuinely care. Now when I visit Derek we have quality time together. It is a relief that I am not solely responsible for his wellbeing and safety any more. Of course, as is the nature of dementia, sometimes the visits aren’t always positive - Derek may be having a bad day, but on the good days I make the most of it.

“I wouldn’t want to move him. He’s settled. The staff know him. But more importantly, they treat him with dignity and respect. Although this has been a difficult time for Derek and me, we feel strongly that we have made the best decision for us all as a family.”

Sheila is currently involved with MODEM (modelling outcome and cost impacts of interventions for dementia) - a nationwide study that looks at ways in which society can provide high-quality support and treatment for people with dementia.

Visit www.modem-dementia.org.uk for more information on MODEM, or www.alzheimers.org.uk.

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