What does it feel like to have dementia?
It might upset you to find out.
Lauren Lee | April 2, 2025 - Atlanta, GA
“It feels terrifying—like something is slipping beyond your control, and it seems as though there’s no way out. It’s an experience where the sense of certainty and clarity fades, leaving you in a constant state of confusion and vulnerability.”
That’s Christie George, Program Manager for Tools for Life, Georgia’s Assistive Technology Act Program housed right here on Georgia Tech’s campus. Even with her experience supporting families across Georgia with dementia resources, she found the experience challenging and eye-opening.
The Virtual Dementia Tour, hosted by Tools for Life and CIDI partner the Atlanta Regional Commission, created an experience that mimics dementia with disturbing accuracy. The experience is meant to take something intangible like empathy and transform it into a concrete reality.
Participants donned items meant to simulate the physical experience of dementia. These items included glasses that impair vision, shoe inserts that mimic neuropathy, and gloves that affect fine motor skills.
The participants then put on headphones playing snippets of conversation just out of earshot. They were led to a dark room with bright strobe lights and given five simple tasks to complete in seven minutes.
Easy enough for mentally competent adults, even with the gear. Right?
Wrong. So, so wrong.
“Even though the experience only lasted seven minutes, I found myself feeling overwhelmed, anxious, hot, and mentally exhausted, as if I wanted to give up,” says George. “It was a deeply humbling experience, one that I truly wish no one has to endure, but unfortunately, many do.”
Even the Tools for Life gerontologist was struck by the experience.
“The frustration and the anger I felt stood out to me,” says Sal Kibler. “I was mad at the person who brought me in, because I just couldn’t do anything. I couldn’t even hear what the tasks were. This is reflected in the emotional outbursts that we see with dementia patients.”
Read more: What is the difference between Alzheimer’s and dementia?
For the participants, the frightening reality of dementia—disorienting, confusing, and most of all frustrating—brought home what dementia patients must feel day-in and day-out.
In this experience lies insights into how to help those with dementia. There are eight things the experts—including Kibler and Maria Mayhan from the Atlanta Regional Commission—want you to know.
- If you know one person with dementia, you know one person with dementia. Each person will have unique needs.
- Diagnoses like Alzheimer’s can be very frightening, but there is a lot of valuable living that can still go on even in its latest stages.
- Treat people with the same dignity and respect you would have prior to a dementia diagnosis.
- Be present with them in their reality. Don’t argue with them—which can be easier said than done.
- Try the improv “yes, and” method. For example, if a person is asking for their spouse who died decades ago, don’t disclose that bad news repeatedly. Try saying that they went out somewhere and then redirect the conversation to what they love about their spouse.
- Genetics are not fate. Just because your parents had it does not mean that you will automatically have it.
- Many of the worst effects of dementia and Alzheimer’s can be ameliorated through assistive technology. Simple things like magnetic shirt buttons, elastic shoelaces, and Velcro apron ties can help people age in place with independence.
- Care partners can often neglect their own health to take care of their loved ones. Assistive technology can help ease the caregiving burden by establishing routines and patterns.
The most important tip of all comes from Christie George:
“I urge people to approach those with cognitive disorders, including dementia, with kindness, respect, and patience”.
Are you or a loved one facing an Alzheimer's disease diagnosis? Do you want to help a loved one age in place? Check out the Tools for Life assistive technology lending library.
Curious about the aging research being conducted at CIDI? Learn more here.
