'Treat us like normal people' - how much do you know about dementia?
PUBLISHED: 13:00 19 May 2018
'We are not broken dolls needing to be fixed' - ahead of Dementia Action Week, a group of people diagnosed with the illness have told the Mercury what it is like.
There are more than 850,000 people across the UK living with dementia, 42,000 of which are under 65 years old.
In North Somerset, there are 2,182 individuals who know they have the condition but an estimated 1,074 people who have yet to be formally diagnosed.
What is dementia?
Dementia describes a set of symptoms which may include memory loss and difficulties with thinking, problem-solving or language. It is caused when the brain is damaged by diseases.
Alzheimer’s disease is the most common cause of dementia but not the only one.
The Alzheimer’s Society in North Somerset hosts weekly meetings and activities for people to get together and discuss their weeks, enjoy each others company and to look at ways to raise awareness in the district.
Reporter Eleanor Young chatted to a group of people from Weston about dementia.
How were you diagnosed?
Sandi Gibbons, aged 53, was diagnosed two years ago with lewy bodies.
She said: “I am supposed to see apparitions but don’t see any yet. You are meant to see people that are not actually there.
“It has been impacting my voice and my balance, which is bad.
“I am young to have dementia and people look at me differently and wonder why I have it.
“I used to ride bikes and take part in amateur dramatic shows and I seemed to keep dropping the bike and losing my lines.”
Marj Malik, aged 74, owned her own business in Weston town centre with her late husband before she was diagnosed about a year ago.
But she told me the ‘turning point’ was after her brother died.
She said: “I could not sort anything out in my head. I used to be a clear thinker and a brilliant planner and then suddenly everything started to close up and I did not know what day or month it wa sometimes.”
Army veteran Ted Wollen, aged 83, was diagnosed at the age of 69 while working at Asda in Weston.
He said: “I went home from work one day and then don’t remember anything after that. I woke up in the morning didn’t know where I was or if I had even slept. I was still in my work clothes.
“My daughter, who lived down the road, called my doctor and he sent me straight to the hospital where they diagnosed me with Alzheimer’s.”
John Stedman, aged 84, said the support of his wife had really helped him since he was diagnosed three years ago.
The former minister spent 28 years in Guyana and 10 years in The Gambia before retiring to Weston.
He said: “My wife knows when she needs to do something and when she needs to let me work it out myself. I have been very fortunate in that respect.”
How do you think people react to you?
Marj said: “ If you say you have broken your arm then they sympathise with you but when you say you have dementia they just do not know how to react.
“All we want is to be treated like normal people. We do not want or need them to go the extra mile for us.
Sandi added: “People treat me differently when they find out I have dementia, they pull out a chair, pat me on the back and think I am fragile. I am still me.”
Dementia Friendly Communities co-ordinator Hayley Pope said: “Awareness is a very good thing as there are a lot of people who feel very isolated and lonely, especially those who don’t have a supportive family or friends behind them.
“People should not be afraid to ask questions about it and find out more.”
Dementia Action Week
An awareness week will be held in Weston and across North Somerset next week to get people talking about the invisible illness.
The society has been inviting people to knit, crochet or sew twiddlemuffs before the event.
The muffs have buttons and other trinkets sewn in to help prevent people living with dementia from injuring themselves through scratching and to offer comfort and distraction.