For six years, Jan Donnell has helped care for her 90-year-old mother, who is living with dementia at home.
Like many family caregivers, Jan understood that dementia affects memory. She knew the challenges that come with doctor’s appointments, changing routines, and the emotional ups and downs of caring for someone you love.
What she didn’t realize was how differently her mother might actually be experiencing the world.
That changed when Jan and her husband, Bob, participated in Dementia Live®, an immersive simulation that helps participants better understand what life may feel like for someone living with dementia.
Wearing specialized headphones, eyewear, and gloves that altered their senses, the couple was asked to complete simple everyday tasks.
For Bob, the experience was unforgettable.
“It drove me nuts,” he said afterward. “It just kind of blows your mind. Simple instructions—you can’t understand them at all.”
For Jan, the simulation answered questions she hadn’t even known to ask.
“All I knew was it affected her memory,” she said. “But I didn’t realize she had tunnel vision, and that’s why she can’t always see me. I also didn’t know you lose your fine motor skills.”
Those discoveries immediately changed the way Jan thinks about caring for her mother.
“I think it will definitely make it easier communicating with my mom because I know what she’s feeling,” she said. “You can’t get frustrated with them when you realize they just can’t help it.”
Learning to See Through Someone Else’s Eyes
Dementia Live® isn’t designed to replicate dementia. Instead, it helps participants experience some of the sensory changes, confusion, and frustration that many people living with dementia may encounter during everyday activities.
For Jan and Bob, that experience reinforced an important lesson: sometimes the best way to help someone living with dementia is to change your own approach.
Their biggest takeaways?
- Speak more slowly.
- Give fewer instructions at one time.
- Be patient.
- Remember that behaviors often have an underlying cause.
For Jan, the experience was also deeply personal.
“I hope we can find a cure or some medication to help these people, because it’s heartbreaking,” she said, remembering the days when she and her mother loved baking together—a tradition dementia has taken from them.
In the News
Jan and Bob’s experience with Dementia Live® was also covered by local news media.
- TribLive: Hands-on dementia simulation offers perspective for caregivers
- WTAE-TV: Understanding Life with Dementia
You Are Not Alone
Caring for someone living with dementia can be challenging, but you don’t have to navigate the journey alone.
Presbyterian SeniorCare Network offers education, support, and innovative programs like Dementia360 to help families better understand dementia and build confidence in their caregiving journey.
To learn more about Dementia360, caregiver education, or dementia care services, visit SrCare.org/dementia or contact us today with the form below.
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