"I felt helpless and frustrated." How does the "Dementia Tour" help you understand what your loved ones with dementia or Alzheimer's are experiencing?
Alzheimer's disease and dementia
Alzheimer's disease is an imaginary "bogeyman" that frightens many aging people, as well as their loved ones. It is a disease of the brain that causes relatively rapid cognitive deterioration and eventually leads to dementia. It should be added that, although Alzheimer's disease is the most common cause of dementia, it can also be caused by other diseases that adversely affect the brain. Symptoms of dementia then classically include memory loss (difficulty remembering events that have happened recently), confusion and the need for help with everyday tasks, problems with speech and comprehension, as well as behavioural changes (e.g. increased irritability or sadness) - although these always vary from person to person.
On a purely informational level, most of us are at least basically clear about the existence and manifestations of Alzheimer's disease and dementia. However, once the associated problems start to manifest themselves in a loved one, we often don't really know how to deal with the situation. And how to react to the completely unusual behaviour of grandparents/parents. That's why psychologists have developed a special program - the Dementia Tour. And this experience of the world seen through the eyes of a person struggling with dementia is truly transformative.
How does the Dementia Tour work?
Thinking about their own old age is something that most young people don't want to do. After all, ageing in general is still problematised in society. And if health problems are added to it, many seniors end up facing exclusion, but perhaps also the disinterest of their own family. Often because of a misunderstanding of ageing as such. But the dementia tour can open the eyes of many. "Before I started, I was given a pair of insoles with rounded spikes in my shoes, which cause discomfort from neuropathy - pain, weakness, numbness and tingling due to nerve damage. This is a problem that many people with dementia face," is how Melanie Bishop, whose mother struggles with dementia and who had the opportunity to try the "Dementia Tour",describes it. "I was then given special dark glasses, headphones, one large uncomfortable glove for my dominant hand and a less uncomfortable one for my non-dominant hand," she added. She was then led into a crowded, very dimly lit room where, without the help of others, she began bumping into walls and objects because the glasses obstructed her vision. And every step hurt because of the aforementioned inserts.
Does such an "experience" seem really extreme to you? For a healthy person, maybe so. And that's not all. From the headphones comes a cacophony of noise, alternating between static, other people's conversations, a loudly ringing phone, a siren. And in all this chaos, Melanie was still receiving instructions like "Find your jacket and put it on" and other "easy" tasks. Well, tasks that are easy for a person who is healthy. However, with all the "equipment" simulating the world as experienced by a person with dementia, they were practically impossible (after all, just try zipping up your jacket in ordinary mittens...).
Zdroj: Giphy
Although this special tour lasts only a few minutes, all those who had the opportunity to take it agreed that it felt like an eternity. Afterwards, they also described how they felt - and words like "frustration", "defeated", "angry " were heard ... "I never had a problem imagining the horror of my brain betraying me. I believed my mother had every reason to be cranky. But it wasn't until I had the opportunity to experience dementia and for five minutes I experienced pure confusion, helplessness, frustration, invisibility and pain that I was able to truly empathise," Melanie described. And that is the main purpose of the tour, which is also aimed at social services and specialist healthcare workers with a clear goal: to understand what their clients are experiencing and to better understand their behaviour and needs.
25 years ago...
The Dementia Tour is far from being a novelty. As early as 25 years ago, the American psychologist P.K. Beville had the idea to simulate the experience of dementia and, as early as 2000, began to look closely at the behaviour associated with each part of the brain affected by dementia and tried to replicate it. And she initially targeted medical staff. "People are afraid of something they don't understand. Dementia is not something to be afraid of. It is something we can take care of because there is no magic pill on the horizon," she summarized, adding that developing a cure for Alzheimer's disease is at least for now miles away.
The dementia tour has since transformed in various ways and spread around the world. It can also be taken in virtual form in the Czech Republic. According to information from the Institute of Education of the Association of Social Service Providers of the Czech Republic, these courses are predominantly intended for workers in specialised facilities (homes for the elderly, employees of care services, etc.), but many of them can also be attended by members of the public - those who care for their loved ones suffering from Alzheimer's disease, dementia and other cognitive disorders.
