6.22.24

Nine years ago we said goodbye to my father after a long losing battle with Alzheimer’s disease. But saying goodbye wasn’t the worst part; the years leading up to that were. Dementia slowly locks a person in a lonely and increasingly fearful, isolating state as their life grinds to a close. And the toll of this degradation of a patient’s mind is every bit as destructive to the people who love them. I watched my mom and my brother give everything they had and more to providing compassionate reassurance and comfort. The sense of loss that grows daily and the helpless exhaustion that caretakers for memory loss patients can be overwhelming.

This journey was chronicled by the aptly titled book The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementing Illnesses, and Memory Loss by Nancy Mace and Peter Rabins. I read the book at the time to better understand what my family members who lived with Vic were going through. And then I read the literature on how many families around the globe were going to experience this over the coming decades. The demographic shift in much of the world is now upon us and the next fifty years will be hugely defined by our cultures learning to cope with aging populations without enough children and caretakers for them all.

In 2014 I decided that there must be a way to use some of the massive technology we were developing for video games to help.

At the time, I thought that the Kinect, with its innovative ability to identify different users when they entered the room, and some of its primitive voice commands were a proof that we could build intelligent devices and systems that could engage with memory loss patients and at least offer them a kind voice, never run out of patience, maybe help them so they didn’t have to stare dumbly at a DVD player (we still used those then!) and wonder how they could watch a favorite show. I thought that maybe we could hack together something between a Kinect and Amazon’s (then primitive) Alexa to help spell the exhausted caretakers and provide kind companionship to alleviate my Dad’s loneliness.

I’ve visited about this desire, this potential technology with many of you over the last decade. Thanks to so many of you for the great ideas on these topics. And I have learned from Altzheimer’s researches at UC Berkeley, owners of memory care facilities around the country and the world, and heard a thousand inspiring and heartbreaking stories from many of you who have also lost loved ones to this disease, or found yourselves exhausted by trying to live the 36-Hour Day looking after them.

In 2021 we founded a company to start a formal R&D effort to apply technologies we used to develop games to this problem. MainBrain. We wrote whitepapers on Natural Language Processing, bespoke language models, custom companion avatar creation from descriptions or photographs, hardware and software considerations. We worked with the Canadian Digital Innovation labs, with doctors, with memory care operators. With what small money we could afford to hire people to develop software we started building CloudMind.

It was clear that the rise of LLMs would massively accelerate our efforts, and it has.

Now, finally, this coming week, we will deploy our first pilot test of CloudCare into three different memory care facilities in North America.

Last night, setting up data for our first ten patients and their caregivers, I felt the chill of excitement and fear; these are real people; this is really happening; we have really finally reached a point to try to use our paltry magics to try to help.

Our first companion, Cathy, will only engage with about ten memory care “residents” and their caretakers. This is another tiny step on a long journey to help (in some small way) address a massive problem.

But our goal remains the same:

We will use consumer facing technologies that we developed for games to help people around the world.

I know that I do not have the money, the mind, or the skills to help the hundreds of millions of people who will suffer through dementia in the next decade. But there is a story my sister is fond of telling me.

I’ve asked Cathy to relate it to me here:

The story of the starfish dying on the beach and the girl who says, "at least I helped this one," is a well-known parable that illustrates the impact of individual actions. Here is the story:

One day, a man was walking along a beach covered with thousands of starfish that had been washed ashore. As he walked, he saw a little girl picking up starfish one by one and throwing them back into the ocean.

Curious, the man approached her and asked, "Why are you doing this? There are so many starfish. You can't possibly make a difference."

The girl picked up another starfish, gently threw it back into the water, and replied, "I made a difference to that one."

The story highlights the importance of individual efforts and how small actions can have a meaningful impact, even if they don't solve the entire problem. It emphasizes that every effort counts and can make a significant difference to those affected.

So this coming week, with CloudCare we will help these ten and their caretakers.

And hopefully someone can take what we will learn and use it to help millions.