Christmas can be a stressful time for many, full of social interaction with relatives you may rather not see, and trying to avoid the chaos of the Christmas shopping rush. But for the 3000 people with dementia in Nottingham, Christmas can be more than overwhelming. Ophelia King spoke to one family who the struggles of living with Alzheimer’s all too well…
But Denise’s life took a drastic turn when she started forgetting how to use computer systems that she had been working with for years.
Less than one year later, at just 52-years-old, Denise found out that she had Early-Onset Alzheimer’s.
“I could’ve done the job in my sleep, and that’s why I knew something was wrong. I used to look after the patient registration system and the materials management system, including accounting and finances, but suddenly found myself having to leave ‘cheat sheets’ for myself around the office,” Denise said.
Although often considered a disease of the elderly, roughly four per cent of people with Alzheimer’s are under 65.
Denise continued: “My memory was different and my children saw changes in my language. My manager noticed that my verbal responses to his questions were not always immediate, although he didn’t tell me this until after my diagnosis.”
A diagnosis of dementia can come as a shock, even if you have been half expecting it.
“I wasn’t ever scared,” Denise continued, “I have just learnt to live for the now. Instead of planning for the future, I will plan for next week. I have weekly and monthly diaries and alarms on my iPhone and iPad.
“My children and my husband are my main support, as they always have been.”
Around 21 million people in the UK have a close relative or friend with Alzheimer’s disease.
When Denise was diagnosed in September 2014, her family found it hard to take the news.
Her daughter, Katie, said tha, initially, she found it hard to come to terms with the harsh reality.
“My initial reaction was just shock,” she said, “I knew there was something seriously wrong. We thought it might be a brain tumour, but Alzheimer’s didn’t cross my mind as I thought it was only really elderly people who got it.”
Alzheimer’s remains the only cause of death in the top ten in the UK that cannot be prevented, cured or slowed.
Katie has seen a rapid change in her mother’s health and has had to develop coping mechanisms to help her through the worst of it.
“When we found out what it was, it was like Mum went from bad to worse in a matter of weeks. We have moments where she seems completely lost, and others where you wouldn’t know she even had the disease.
Katie takes care of her mum most of the time, and says that Christmas will be no different.
“We just keep it simple. Our support worker has given us tips to make sure that she doesn’t get overwhelmed.
Generally she copes well with noise as we have a large family, but sometimes she can be confused by conversations that she might not understand, so we just keep her involved and try not to fuss her.”
The Alzheimer’s Society, Nottingham, have released a help guide for people who are expecting guests for Christmas with dementia.
Robbie Barlow, Chief Executive Officer at The Alzheimer’s Society, Nottingham, said that understanding dementia is more crucial at Christmas than any time of year.
“It is important that you introduce Christmas things slowly. People that suffer with dementia tend to struggle with rapid change, so put up a few decorations a day so it doesn’t overwhelm them. They might also be overwhelmed by a lot of noise, so have a quiet room where they can take five.”
Over 60 per cent of people with dementia in the UK asked reported that they had received less invitation to social events since their diagnosis.
“Sometimes dementia can lead to isolation. The most important thing to remember is to not make assumptions with your loved ones; have them help decorate the tree, or take them Christmas shopping somewhere quiet.” According to Robbie, coping with a loved one having dementia requires patience.
After an initiative by The Alzheimer’s Society, there are now well over 1 million Dementia Friends in the UK.
“There are now Dementia Friends working in big retailers such as Argos and M&S around the holiday season. They are trained to help people with dementia have the least stressful shopping experience.”
Robbie continued: “Although short term memory in dementia sufferers is not always great, long term memory can still be very good, so sing Christmas carols from their childhood, watch an old Christmas film or gift them a family photo album.”
As ever, Christmas is the time to share happiness with your family, some might just need a helping hand.
For more information about dementia, and tips on how to care for relatives this Christmas,