Burstall: How living with dementia has changed Keith Warren’s day-to-day life
17:28 21 May 2014
“Don’t bottle it up” is the theme of this week’s national Dementia Awareness Week. With new figures revealing there are around 61,000 living with dementia in East Anglia, it is imperative we walk about the disease which affects so many people. Health correspondent Lauren Everitt reports.
Dementia Awareness Week
Dementia Awareness Week is Alzheimer’s Society flagship awareness raising event.
Running from May 18-24, the charity is encouraging people who are concerned about dementia to stop bottling it up.
Erika Aldridge, Alzheimer’s Society regional operations manager for East of England, said: “Dementia has replaced cancer as the health condition people fear most.
“It is therefore no surprise that many people feel confused or even ashamed to talk about it.
“The reality is however that almost half of us know or have known someone directly who is living with dementia so it is an issue we really can’t ignore.
“We all bury our heads in the sand from time to time but if people are worried about dementia in themselves or someone close to them it is important to seek help.
“The sooner you know what you’re dealing with, the sooner you can get on with your life and feel in control again.
“That’s why this Dementia Awareness Week Alzheimer’s Society is encouraging people to stop bottling it up and talk to us about dementia.”
While we can all bury our heads in the sand, it is important that people talk to some-one if they are seriously worried.
As part of the week, an awareness and information event will be held at Ipswich County Library including a dementia friends session on Thursday and an information stand and dementia friends sessions at Ipswich Hospital on Friday.
➔The charity can offer advice and support through its National Dementia Helpline on 0300 222 11 22 or via alzheimers.org.uk/talkingpoin
According to the Alzheimer’s Society, there are around 800,000 people with dementia across the UK – and 11,679 of those live in Suffolk and 20,635 in Essex.
One of those from Suffolk is Keith Warren who was diagnosed with two types of dementia – vascular and Lewy body – last October, aged just 58.
It was only after wife Heather pushed him to go to the doctors in 2011 that the ball started rolling to get his diagnosis.
She said: “He just kept forgetting things and getting into a muddle. He would have phases where he was fine but would then be confused.
“The GP did a memory test but overall the results showed he was borderline but that his age didn’t fit dementia.
“The doctor put it down to stress.”
But the turning point came when Keith, 59, who served as a policeman in Suffolk Constabulary for 32 years, went on a golfing holiday to Spain with friends.
“He was totally out of his comfort zone. He couldn’t remember what he was supposed to be doing or what tablets to take because I did everything for him at home,” Heather, 53, adds. “Suddenly he had to do it all for himself and he couldn’t do it.
“That’s when he realised something was wrong.
“He saw the GP again and we got referred to the Later Life clinic where he underwent a much longer memory test. The consultant said he definitely had a problem although he couldn’t tell us what at that stage.”
A short time later, the test results came in and the couple, who live in Burstall, learned Keith had vascular and Lewy body dementia.
He said: “I didn’t take it in at the time because I don’t think I really understood what dementia was.”
Heather adds: “For me, if anything it was a relief.
“It was a relief that finally someone had actually diagnosed it because at least then we knew what we were dealing with.”
The next step was telling the couple’s three children, twins Katrina and Letitia, 27, and son Shaun, 25.
“The girls were quite matter-of-fact about it,” Heather explained. “Letitia had worked in care homes and people with dementia while Katrina, being a radiographer, had dealt with dementia patients.
“They were obviously upset that their dad had dementia but accepted it while Shaun found it very difficult to get his head round it.
“He had never known anyone with dementia. There’s been no family history and it’s not something he had ever come across before so he didn’t know how to deal with it.
“He was more worried about how it was going to affect me and how I was going to manage looking after his dad.”
Living on a day-to-day basis, Heather admits life has had to change.
“Every day is different. No two days are the same and your expectations have to change.
“If he’s had a good day and you ask him to whizz the vacuum cleaner around and I come back to find it has been done then great, if not, I just have to accept I need to do it myself.
“Things take a long time for him to do. He has no perception of time.
“If I’m out, I have to ring home to remind him to eat his lunch and take his tablets.”
She added: “It’s hard his mood fluctuations – one minute he is fine and the next he can go off on one – and him repeating questions and not remembering the answers.
“It’s the constant repetition 24/7 over and over again. It gets very wearing and you try not to get annoyed but sometimes you can’t help it.”
For Keith, who also worked at Tesco for nine years before retiring, he has accepted that he has dementia and learned to live with it.
“There’s nothing they can do for me. It’s just life. You have to go along with it rather than mope around and get upset about it.
“It took me a while to really start getting a grip of it but when you know your brain is all over the place it’s very hard to focus.
“I just hope I don’t get any worse because I don’t think Heather would cope. Sometimes I do think I give her a merry dance without doing it on purpose.”