Imagine looking into the mirror and seeing the face of a stranger.
Imagine you could hear what others had to say, but could make little sense of it.
Imagine if you couldn’t remember to do more than one task in a row.
Now imagine feeling that way every day of your life.
The public got a taste of the physical and mental challenges of those suffering from Alzheimer’s disease and other dementia last Wednesday during a virtual dementia tour held here as part of “Alzheimer Awareness Month.”
“[The tour] is to give people an opportunity to have an experience that would be somewhat similar, as close as we can get, to what a person with dementia might be experiencing,” said Eleanor Barron, the Alzheimer Society of Kenora-Rainy River Districts’ “First Link” and public education co-ordinator for Fort Frances and surrounding area, who, with help from the Rainycrest Family Council, led 19 people through tours at the Super 8 Motel.
“Hopefully, once they’ve done that, they’ll be more empathetic to the needs of persons with dementia,” she added.
Participants first were suited up with shoe inserts, gloves, goggles, and headphones meant to alter their perceptions and simulate not only symptoms of dementia, but other health conditions an older person with dementia may have (e.g., the after-effects of a stroke).
For example, the shoe inserts, with nubs facing upward into the wearer’s soles, were meant to create discomfort and simulate the pain a person with arthritis or poor circulation might experience.
The gloves had nubs on the inside, were bulky, and each hand had several fingers taped together. These were to simulate a loss of fine motor skills and tactile sensitivity.
A person with dementia can lose their ability to will their muscles to do what they want them to do.
The goggles, meanwhile, had yellow lenses to represent the yellowing of the lenses of an older person’s eyes, affecting their ability to see in low-light conditions.
As well, the goggles had a black dot in the centre of them to represent the effects of macular degeneration, which affects vision in the central of the eye.
The nature of the goggles also affected peripheral vision, the loss of which is common with people who are in the middle to late stages of dementia.
Finally, the headphones were meant to simulate hearing loss. Sixty percent of long-term care residents have hearing loss, noted Barron, adding that some have hearing aids while others don’t, and some don’t simply wear them.
But people with Alzheimer’s disease have a higher rate of hearing loss than other people their same age.
Participants then were led into a dimly-lit motel room, with loud and garbled noise (i.e., snippets of conversation, laughing, sirens, static, etc.) playing in the background.
Barron explained the sound increased the sense of confusion a person with dementia would have. They’re unable to process the language, and even though they might hear human voices and recognize them as such, they may not be able to discern what those voices are saying.
This is why they often sit out of conversations in a group of people.
The other noises were added to simulate background noise in a hospital or long-term care facility, where a person with dementia might hear noises or P.A. announcements but not know what it is.
In addition to the low light and ambient noise, the room had other features to simulate aspects of dementia. For instance, a transparency of a human face was posted on the mirror so that if one were to look in the mirror during the tour, they would see the face of a stranger.
“People in later stages of dementia are even confused at who they are, and when they see themselves in the mirror that is a scary thing,” noted Barron.
“They might think there is a stranger in the room.”
As well, lists of the tasks the participants were to carry out were posted on the walls. But if a participant were to notice this and try to read a list, the words would were missing letters or otherwise scrambled.
Barron then asked them to do five different tasks. For example, they might be asked to find a pair of pants and put a belt through its loops; match and roll six pairs of socks; clear a set table; draw a picture of their family and name each family member; and find a necktie and put it on.
They only were told these tasks once.
The participant—with limited vision, hearing, and use of their hands—then would go about trying to do these tasks in the unfamiliar environment, often with limited success.
The overall effect of the tour sheds light on what it might be like to suffer from Alzheimer’s disease or another form of dementia, creating in the participant a sense of confusion, anxiety, and depression.
“Those are things that we need to be able to be understanding towards to see what we can do to change our approach towards these people and maybe even towards how we set up the environment,” said Barron.
Those who went on the tour indicated to Barron that it was a worthwhile learning experience.
Barron said she found many people who did the virtual dementia tour were not aware of the physical disabilities caused by Alzheimer’s disease, only the memory loss.
“Other people said that they found themselves very anxious, and now they would be more understanding with someone with dementia,” she noted.
“Others said they see it is important to speak slower, to remind people because they forgot things.
“Some people said they felt really alone,” Barron recalled. “Even though there were two other people in the room, they felt they were trying to accomplish tasks and there was nobody there for them.
“They sense that feeling of aloneness that a person with dementia might have.”
Participants agreed the tour was very educational and enlightening.
“It was a very eye-opening experience,” said Norman Cain, a member of the Rainycrest Family Council.
“It did give you a very good idea of what people with dementia have to deal with, the frustrations involved,” he added.
Cain said it’s definitely beneficial to have the virtual dementia tour available for health-care workers and family members, but added “it’s good for everyone so they have some idea as to what dementia is about.”
Barb Duguay, who chairs the Rainycrest Family Council, also took the tour and said it provided “total awareness of how you would feel.”
“I felt very alone and scared [during the tour],” she admitted. “When [Barron] listed off the tasks and you had to remember that many tasks, it was impossible.
“I can say that out of five tasks, I only completed 2.5.”
Duguay said she learned from her experience that when one is talking to someone with dementia, it is best to speak slowly and only talk about things—tasks, for example—one at a time.
“And outside noise, while talking to a person with dementia, can really affect the way they respond,” she added.
Duguay said the exercise not only is beneficial for those who care for loved ones with dementia, but also for youth so they truly can understand what older adults may be going through and have more patience with them.
“I think [Barron] should take it to the high school or grade school, even,” she noted.
“Eleanor did a wonderful job of explaining.”
In addition to her other duties as “First Link” and public education co-ordinator, Barron will continue to offer virtual dementia tours to various groups, and is available for bookings.
To contact her, call 1-800-682-0245 or e-mail firstname.lastname@example.org
Meanwhile, Barron said the Rainycrest Family Council was a great help with the virtual dementia tour, and she may work with them again in future.
“They were amazing. I couldn’t have done it on my own,” she stressed. “The things they did to prepare people beforehand, I would’ve had to recruit two or three other people [if it weren’t for them].”
Duguay explained the Rainycrest Family Council has a mandate to offer three educational sessions a year to the public and the virtual dementia tour was a good opportunity to do so.
They will be holding two more later this year—one regarding the transition from home to long-term care; the other regarding depression and the elderly.
Family council volunteers helped participants fill out forms and put on gear prior to each tour last Wednesday. They also promoted the family council and encouraged the public to sign up.
Duguay noted the Rainycrest Family Council currently has 22 members, and always is looking for more family members and friends of Rainycrest residents to join them.
The council’s mission is to be a liaison between the residents’ families and friends and staff to facilitate communication, and to work with staff in the promotion and encouragement of programs and decisions for the ultimate benefit of the residents.
“We’re a positive group working towards different activities to educate the public on the different challenges that are faced in long-term care,” said Duguay.
In the past, the family council has done projects ranging from setting up a computer lab for residents to having doors inside Rainycrest painted with colourful scenes to working very closely with food services at Rainycrest to audit meals.
The council also exists to address a mandate under provincial legislation that all long-term care facilities have a body of friends and families, or those who have a sincere interest in the heath and welfare of residents.
The council meets on the third Tuesday of each month.