MINNEAPOLIS (WCCO) — Caregivers consider it a wake-up call: experiencing for themselves what it’s like to live with dementia.
The Virtual Dementia Tour recently made a stop in western Wisconsin. WCCO signed up two sisters we’ve been following as their father deals with the first stages of Alzheimer’s disease.
We discovered how a small room and a table of tasks can quickly lead to frustration and heartbreak.
Caregivers and family members crowd around a table to tackle an uncomfortable reality for too many.
Paula Gibson, regional director of communications and engagement for Azura Memory Care, led the Virtual Dementia Tour by Second Wind Dreams.
“Dementia isn’t just losing people, places and things, its losing functions of the body,” Gibson said.
It’s those functions that became the focus of the virtual dementia tour. Shoe inserts, special gloves, and glasses help us see for ourselves what patients with memory loss live with.
Two Twin Cites sisters hoped to learn more about how to help their dad. WCCO has been documenting Paul Quinn’s diagnosis with mild cognitive impairment, the earliest stages of Alzheimer’s, for three years.
We’ve watched the retired family physician from Stillwater struggle to remember family members’ names and trips he’s recently taken.
Memory loss runs in the family. Quinn’s daughters — Katie Mack and Ann Vance — worry what their own futures may hold.
“I think that’s what makes me nervous to do this but also interested to see what could this be like for my dad and possibly for us, yeah,” Mack said.
Headphones completed the kit, simulating the sounds patients with Alzheimer’s experience. Noise will often register at the same level, which overstimulates the senses.
“Which is exactly what happens with the disease process,” Gibson said.
A series of tasks was given to each person to complete in 10 minutes.
WCCO watched the confusion quickly settle in.
“I thought I was supposed to write something,” Mack said.
“I thought that’s what I was supposed to do,” Vance said.
When WCCO’s Liz Collin went through the tour, she felt disoriented trying to complete the checklist.
“You get to come out. People with dementia don’t get to,” Gibson reminded us.
Paula Gibson lost her grandmother and father to the disease. By the time she took the tour it was too late to change her interactions with them.
“That hit me when I just wanted to shut down and wait it out. That is how he acts sometimes when there’s too many people in our house, if we’re out at a restaurant and it’s loud or he’ll say, ‘I’ll follow you because it’s just too much,'” Mack said.
Mack and Quinn now plan to do things differently with their father moving forward. They realize now he’s dealing with much more than a memory problem.
“You’re not going to succeed in the tour, but you are going to succeed in having your heart and mind opened up to what they’re going through and hopefully it will allow you to walk in their world,” Gibson said.
WCCO wasn’t allowed to say just what those tasks were to be completed; organizers don’t want people to study for this dementia test beforehand.
The Quinn family said the biggest takeaway from them will be the way they approach their father, from the front now as not to startle him since his peripheral vision is affected by his disease.
To find out more about the virtual dementia tour, click here.