The Whole Village Feels It

Written by: Matt Tullis

My whole family quickly learned that the damage caused by dementia continues to cascade out into more lives and my desire to do something meaningful about it grew fast.

My mom’s perseverations often are caused by delusions, another constant in the world of dementia. Regularly, my mom thinks her parents are still alive. If my dad isn't around to reorient her, she will call them to check in—miraculously remembering their land line phone number—only to get a disconnected line. (Thank goodness the phone company hasn't given it away to someone else yet!) When this happens, she starts calling us kids. More than once she has called my sister 30 times in 30 minutes. This is perseverating if that word wasn't familiar to you. She will get stuck on something until it gets sorted and she gets successfully redirected. Another time, she got a hold of my sister's office and had her pulled out of a meeting as it was an "emergency".

We started to attend various seminars and workshops for family members and caregivers, looking to the healthcare system for assistance. We learned some useful lessons and felt compassion at caregiver support groups. We hired companions for my mom to help alleviate the stress on my dad and started to take my mom to adult respite centers for “dementia day care”. But it still felt like we were slowly drowning in quicksand and our family was falling apart as the system just tried to help us survive. I knew there had to be a better way as this might destroy my mom’s brain but it shouldn’t destroy our family.

You see, my mom used to be a workhorse. If one of us children had an event at our house, my mom would take half of the workload off our plate by shopping, decorating, prepping meals, and especially cleaning up before & after. This new version of her inverted that dynamic as it required more work to include my parents. Even my nephew stopping by for a casual check in at their house could easily turn into an emotional experience by sharing fun news like plans for an upcoming wedding, hearing the inevitable "Why didn't you tell me that?", and then seeing her process the fact that he had told her already by the look on his face. This is why people stop by less than they used to and dementia can feel increasingly isolating.

Encountering all these things that were terrible for all of us involved really got me thinking about how I could help fix it. I've been fortunate enough to have worked at some really great technology companies that were world leaders in sound, the sense of touch, and computer vision, where I helped them build products that enhanced the lives of billions of people around the world. I knew I should be able to do something with all of the amazing tools out there including harnessing the power of AI to help my own family…

Next: So I Cloned Myself