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.