This post may only be of interest to those dealing with dementia though certainly a similar “simulation” could be created for the non-dementing types of PSP.
In a British newspaper article from last Sunday, there’s a description of a simulation called the “Alzheimer’s Experience.” The company Care UK runs care facilities in Britain. It requires all of its staff to go through the simulation. The one-day simulation “gives staff direct experience of the dramatic effect that dementia and frailty can have on the senses.” The tasks in the simulated experience include:
* “The training starts with a communication task. [The participant] must read words on a piece of white paper written in a fluorescent yellow highlighter pen, which makes them hard to see.”
“Dementia makes it difficult to read whole words…patients cannot make out what they are seeing.”
* “Next, [the participant] is given a newspaper to read. A machine is switched on that emits a din of ‘white noise’ – a fuzzy hum that permeates the atmosphere among sounds of clattering, scraping chairs and doors opening and closing. [The instructor] constantly walks up to [the participant] and asks her endless, random questions.”
“This task simulates what it is like for someone with dementia who may suffer from a constant noise in their head that they cannot shut out, which is a common symptom… Talking, shouting and asking questions further confuses a sufferer – their brain finds it difficult to differentiate between all the different stimuli.”
* “A third task is called Questions And Answers. [The participant] sits in a chair trying to count from one to ten while [the instructor] bombards her with questions as she tries to keep counting.”
“This helps the carer understand-that it takes people with dementia-longer to process information.”
* “The final task, entitled Physical And Sensory Impairment, involves [the participant] wearing headphones emitting white noise, to emulate loss of hearing, and putting on goggles that blur her vision.”
“This simulates a combination of eye-ageing and dementia.”
Now I know how alzheimer’s trapped dad in its cruel grip: Bucks Fizz’s Jay Aston on how dementia devastated her father
By Bonnie Estridge
Daily Mail (UK)
Last updated at 1:41 AM on 26th June 2011
Alzheimer’s accounts for about 60 per cent of the 750,000 British adults affected by dementia.
The disease attacks nerves, brain cells and neurotransmitters – chemicals that carry messages to and from the brain. It is a progressive condition usually associated with old age, but the cause remains unknown. It is estimated that more than a million people will suffer from it by 2021.
As Jay Aston walked down the aisle on her wedding day, she struggled to hold back tears. Her pleasure at seeing her soon-to-be husband, musician Dave Colquhoun, waiting for her at the altar was tinged with a deep sadness for the man who was about to give her away.
Jay’s father, Ted, looked dignified and handsome but he was lost to the grip of Alzheimer’s disease – the most common form of dementia.
‘Not long before my wedding in August 1999, Dad had swallowed disinfectant, tried to stab my mother and told her, my brother Lance and me that he would shoot us and then shoot himself,’ says Jay, 50, who found fame in the now reformed Eighties pop band Bucks Fizz.
‘When he walked me down the aisle, he had no idea what he was doing or why he was there at all. The disease had made him the opposite of the man he had once been, and to see what he had become was my worst nightmare.
I know it was his, too. He always had a horror of mental illness and, because he was so physically fit when he eventually went into a care home, it took years for his body to decline and he suffered a hideous, drawn-out death.’
Ted had been one half of Fifties husband-and-wife variety act Ted and Hilda Durante and was renowned for his quick wit. But in 1995 he started to display behaviour that was unlike his normal self.
‘He kept forgetting his gags on stage – he’d had the sharpest wit of anyone I’d met so it was really quite worrying,’ says Jay, who has a daughter, Josie, seven.
Jay’s mother put these lapses down to age – he was 70 at the time – but Jay disagreed and she and her mother fell out over Ted’s health. As time went on, Ted forgot that he loved opera and stopped listening to records, and he could not recall which band Jay was once a member of. It reached a point where he became a danger to himself and other members of the family. He started to drink heavily and would then forget that he shouldn’t be driving, so Jay reported him to the police.
‘I felt like a Judas,’ she admits. ‘But I had to do something. We tried to keep Dad at home (in Tatsfield, Surrey) with Mum but he would let himself out in the middle of the night and wander down the road. He’d lost all sense of direction and it soon got to the point when it became impossible to keep him at home.’
On Boxing Day 2004, not long after Ted and Hilda’s 52nd wedding anniversary-Ted was admitted to a care home. Jay says: ‘We were all devastated. I used to visit him and as time went by he got angrier and angrier – frustrated that his life involved just sitting in a room all day. Because he was so fit, it took a long time for him to deteriorate physically. Over five years, he went from being a strapping 13st man to a 7st shadow of his former self.’
Ted died of pneumonia in 2009. Today, Jay remains passionate about learning to understand the disease that tore her father’s life apart – and has agreed to take part in a unique training programme run by residential care specialists Care UK, which has 57 homes across Britain. Dubbed The Alzheimer’s Experience, it involves a series of tasks that simulate the sensory experiences of those suffering from dementia.
Everyone from senior executives to cleaning staff is required to take the innovative course, which aims to improve services by giving them a better understanding of what residents go through.
‘With the help of doctors and other dementia specialists, we have developed a practical, hands-on, oneday course that gives staff direct experience of the dramatic effect that dementia and frailty can have on the senses,’ says Maizie Mears-Owen, service design manager at Care UK.
‘When one’s cognitive ability is impaired, everyday activities such as following instructions can be confusing – and even terrifying. As well as memory loss, dementia can affect motor skills, which means walking and dressing become increasingly difficult. Jay is going to get an idea of what her father went through.’ The training starts with a communication task. Jay must read words on a piece of white paper written in a fluorescent yellow highlighter pen, which makes them hard to see.
Jay spends several minutes trying to decipher the words. ‘This is incredibly demanding,’ she says. ‘I could make out only 25 per cent of the words.’
Maizie explains: ‘Dementia makes it difficult to read whole words – because of deterioration in certain parts of the brain, patients cannot make out what they are seeing.’
Next, Jay is given a newspaper to read. A machine is switched on that emits a din of ‘white noise’ – a fuzzy hum that permeates the atmosphere among sounds of clattering, scraping chairs and doors opening and closing. Maizie constantly walks up to Jay and asks her endless, random questions.
‘This task simulates what it is like for someone with dementia who may suffer from a constant noise in their head that they cannot shut out, which is a common symptom,’ says Maizie. ‘Talking, shouting and asking questions further confuses a sufferer – their brain finds it difficult to differentiate between all the different stimuli.’
Jay remarks: ‘Towards the end, Dad was very frustrated at not being able to read a newspaper easily. He found it impossible, complaining about all the distractions. He would become angry and often started shouting.’
A third task is called Questions And Answers. Jay sits in a chair trying to count from one to ten while Maizie bombards her with questions as she tries to keep counting.
This helps the carer understand-that it takes people with dementia-longer to process information. Jay could also relate to this task.
‘Dad would respond to questions but then lose his train of thought,’ she says. ‘This, again, was frustrating for him so he would shout, get a headache or simply shut down and go to sleep.’
The final task, entitled Physical And Sensory Impairment, involves Jay wearing headphones emitting white noise, to emulate loss of hearing, and putting on goggles that blur her vision. This simulates a combination of eye-ageing and dementia.
She also wears thick gloves to take sensation away from her fingers, which have been taped together to simulate the difficulty sufferers have controlling their limbs and digits.
Dried beans are put in Jay’s shoes, making it difficult and painful for her to walk, similar to the difficulties faced by Alzheimer’s patients who have suffered nerve damage.
When asked to stack plastic cups on the table in front of her, Jay knocks them over and finds the task of pouring water from a jug into one of them virtually impossible, as are tasks such as doing up a button on her dress or brushing her hair.
Jay tearfully removes the goggles, gloves and headphones. Composing herself, she says: ‘It’s so upsetting to know what it was like for Dad living so long in this muffled, confusing world. I remember once he was trying to pour a drink and knocked the cup over. His clothes were wet but he couldn’t understand what had happened or why. It was heartbreaking, as he had been so strong.’
But despite the raw emotions that surfaced during the experience, Jay was pleased she had taken part.
‘It seems to me that this is a very good form of basic training, and any project that would help dementia sufferers be better understood has to be a positive, valuable one.
‘I wish I’d had this experience when Dad was still alive because it would have unlocked the secret of why he – and so many other dementia sufferers – undergo a change of personality. I’m also reassured to know that those caring for dementia patients now have such an insight.’