Relatives say living with dementia is 'cruel' and 'heartbreaking'

BBC News

28-03-2025

An increasing number of people in the UK are being diagnosed with dementia.According to Alzheimer's UK, 982,000 people are estimated to be living with the condition and as many as 700,000 people are caring for a loved one.Throughout this week, people have been sharing their experiences as part of the BBC's Memories and Dementia project.BBC radio stations in Dorset, Berkshire, Oxford and Hampshire have all being talking about the issue as part of Dementia Awareness Week.
Beverly Randerson's husband Brendon was diagnosed with Lewy body dementia (LBT) in 2019."He used to play golf until one day he came home and said: 'I can't play golf anymore.'"She remembers asking him why, and the answer was because he could not add up, despite previously being "very good with figures".
'You don't just lose them once'
She said the disease "creeps up on you" and at the beginning they managed to find medication that kept it at bay for a while."There were lots of things, small things to begin with, getting really forgetful then he couldn't drive anymore - he didn't like that," she said.She said she had to do all the driving and "there were many times he tried to get out the car while I was driving"."He was getting worse, he kept running off so I would lock the doors and then he would try escaping through windows." Mrs Randerson said eventually Brendon started to become violent, and he now lives at Aranlaw Care Home in Poole.She said: "The worst part is you don't just lose them once. It's a horrible disease and it's so cruel to everybody, not just the people with dementia but the whole family."If I could take it away from him, I would but I can't."
'Football was his passion'
Goff White from Tadley was one of the first non-league footballers to be diagnosed with chronic traumatic encephalopathy, a brain condition thought to be linked to repeated head injuries.His wife Tina said: "He was a very strong character. My son always says: 'they don't make many in that mould any more' and he's right."He was a loving, caring husband, father, son and granddad, always willing to help absolutely anyone."Goff, who loved football and played for Basingstoke and Tadley Calleva, died last year aged 70, after living with Alzheimer's.
Mrs White said her husband played football for roughly 43 years and he would "practise for hours, heading the ball"."He had plenty of concussions in his early life between the age of 18-21 but football was his passion, his whole life," she said.She noticed the difference in her husband in 2012, because "he became paranoid, he started to get very verbally aggressive and very angry about things".Getting a diagnosis was difficult, Mrs White said, as her husband would not accept that there was anything wrong."I became the enemy. He even asked for a divorce, he just wouldn't accept the illness," she said."For two years I went to different doctors and they said they couldn't do anything unless he came in himself."
'I'm grateful she is still here'
Dementia Active is a charity based in Oxfordshire that provides social activity groups for people with dementia.Founder and chief executive Andy Gill said: "We want to help keep someone living with dementia at home for longer and out of a care home."We bring them in for a four-hour session. We'll pick them up from home to give the carers, husbands and wives the break, the respite they need, when they are looking after someone with dementia."It can be intense. The disease is 24 hours, seven days a week, it's not something that goes away at night and some people won't sleep when they've got dementia. "You're on guard 24/7 as a carer to give someone four hours respite in a day can make a lot of difference."
Molly Gill, who runs and manages the activities, said: "We hear the bad stuff about dementia. You hear loss of memory, forgetting people and losing the ability to do things they've previously loved."In this environment with the group, we get all the fun stuff, the innocence and the joy."Belinda Herring is a team leader at the charity and her mother Anne comes three days a week to the group and has "a great time"."Since I lost my dad, my mum was very lonely on her own and had nothing much to do," she said."Mum's made lots of great friends, she does lots of activities. It's a really nice social thing for her, plus she gets a good meal and has entertainment."She said the disease was "very hard and you lose a piece of them each time, it can be heart-breaking, but I'm grateful she is still here".
'The aim is to achieve some hope'
Experts from the University of Southampton have devised a giant floor game of snakes and ladders to teach people about dementia.The game is a 3m-by-3m board, which includes giant foam dice.It is designed to teach people about lifestyle choices that prevent or increase the risk of contracting the condition.About 45% of cases of dementia can potentially be prevented by addressing 14 risk factors during your life, the researchers said.Prof Jessica Teeling, who works in experimental neuroimmunology at the university, said the aim of the games was "to achieve some hope". Risk factors include chronic stress, lack of sleep and not flossing your teeth.
Prof Teeling said: "Chronic stress influences your body which makes you more susceptible to infections."A lot happens when you sleep - there is an area in your brain that is particularly active when you're awake and shuts itself off when you sleep."That part of the brain is called locus coeruleus and it's one of the first affected in dementia."When it's not shut off those processes are exaggerated, so not sleeping eight hours or not sleeping regularly could influence the function."She said there was also evidence that gum disease, left untreated, increases the risk of developing dementia by about four to five times.
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