Christmas is a special celebration for the Burton family from Stretton in Derbyshire. But the day has taken on a different feel since dad, Ian, was diagnosed with young onset dementia.
Ian, a former solider and a technical support worker for Derbyshire Police, has lived with us for the last three years. His wife Wendy says staff always make the day as special for them as they can.
How Christmas used to be
“Christmas was always a big affair in our house,” she remembered. “We would have Bucks Fizz and croissants in the morning and then we’d open presents with our three daughters, Emma, Rachel and Sophie.
“Ian would always put a lot of energy into playing with them and their new toys! We’d all go for a walk with the dogs and then spend the afternoon watching telly. It was lovely.”
But the last Christmas Ian had at home was a very different experience. Diagnosed with behavioural variant fronto-temporal dementia (bvFTD) at the age of 50, three years in his symptoms had become more pronounced.
“He wanted to walk all the time and we couldn’t keep him indoors,” said Wendy. “He was in and out of other people’s houses and the whole experience was very stressful.
“Ian went to Barrowhill Hall for respite in October 2016 and spent his first Christmas there that year. Much as we missed him it was a relief to know he was safe and well-cared for.”
More than 42,000 people in the UK are estimated to have young onset dementia. The term is used to describe dementia that starts before the age of 65. It is also described as ‘early-onset dementia’ and ‘working-age dementia’.
A home that meets Ian’s needs
Ian’s behavioural variant fronto-temporal dementia affects the parts of the brain responsible for complex thinking, personality and behaviour. One of the greatest changes it has brought about in him is that he is constantly on the move. Wendy says Barrowhill Hall is ideally suited to his needs.
“He lives in Churnet Lodge which has wide corridors and plenty of space so he can roam around. We always visit him on Christmas Day and if he decides not to sit with us for long, that’s ok.”
Staff do their best to keep the quiet lounge at Churnet Lodge free on Christmas morning so Ian can spend time with his three children and two grandchildren, who make the 44 mile round trip to see him.
“Ian doesn’t always recognize us as his family and he’s non-verbal now. But we can see he still gets pleasure out of the little ones. We keep back some of the grandchildren’s presents so they can open them with him and he does seem to enjoy that.
“We always bring him gifts. His Scottish heritage has become increasingly important to him, as has his military career. We’ve bought him cushions for his room with Highland cows on and photographs for his wall.
“There’s still room for humour too – his nickname at home was always Mr Grumpy and he’s got a bedding set of his namesake from the Seven Dwarves!”
Wendy works as a dementia advisor for the charity Making Space in Derby. She finds it comforting spending time with the other residents and chatting to staff who she’s got to know well.
“Families are always welcome as this is home for their loved ones,” said home manager, Matthew Whitfield.
“We always try to make Christmas as enjoyable as possible, whatever form that might take for them.
“For Wendy, Ian and the family, it’s giving them some quiet time together and being there when Ian gets to his feet so the family can relax and wait for him to go back to them again.”
The Burtons head home just before Christmas lunch is served at Churnet Lodge.
“It’s horrible to go away from him,” said Wendy, “but the Christmas before he moved into Barrowhill Hall was so difficult. It’s a much calmer celebration now.
“The girls know their dad is in the best place and he’s well-cared for. We love seeing the other residents enjoying Christmas – the staff really do make it as nice as it can be.”