Finally we are off and running! It took a year of work but, as planned, we launched the Gemini MindPartner® Program at the International Alzheimer’s Association Conference in Washington a couple of weeks ago. Our “launch” was pretty soft since the purpose for having a booth at the conference was not to actually market MindPartner® (since the product is not ready) but to get some feedback on the core ideas behind the program by talking with conference participants.
The two big questions for me were:
1) How will professionals and caregivers react to the idea of using an artificial or “companion” mind (and associated technology from today) based on the history of an individual with Alzheimer’s. Does this sound like a good idea or scary science?
2) What will the reaction be to my new book, “Don’t Rain On My Parade: Living Live To Its Fullest With Alzheimer’s?” The Alzheimer’s Association’s approach to dementia is very negative. Will I be perceived as a complete Pollyanna (which may be valid) for proposing that a person can have a “good life” after this diagnosis?
Before I share the results of what happened at the conference it might be helpful to give you a quick refresher on the MindPartner product and how we are working, not to cure Alzheimer’s but to cure our negative attitude about the disease which impacts the quality of life of over 125 million people, and their caregivers, globally.
The concept is pretty simple. Today we have Google and other search tools plus social media to compliment the way most of us use our memories in everyday life. Google really does offer an alternative “memory” for many dimensions of our life ranging from facts to locations to people to most kinds of intellectual activity. Facebook and other social media offer alternate and real time ways of sharing our history and experiences. Why don’t people who are “memory challenged” have an alternative “memory” and communication channels to provide a similar kind of assistance? And, what if, instead of attempting to cover all kinds of information, this alternative memory focused on the details of an individual’s personal history that is often compromised by dementia? The result is a “companion mind” for individuals with Alzheimer’s that we have called, “MindPartner.” The simple drawing below describes how it works.
At our booth we discussed this idea with approximately 100-150 Alzheimer’s professionals who dropped by during our 4 days (long days) at the conference. I would say that almost everyone was in agreement on three of the core ideas presented:
1. The concept of building a companion mind to store an individual’s personal history for use later.
2. A focus on enhancing the quality of life of people with dementia.
3. Using technology to help. Everyone liked the idea of using technology but the best options to make this friendly for a population of people in their 80’s with dementia remains to be demonstrated.
Two other issues received mixed reviews and some good discussion:
The Negative Perspective That We Communicate to People with Alzheimer’s
While the MindPartner® team would also argue for a big change in perspective within the Alzheimer’s community from a negative “the longest day” approach to more positive approach focused on getting as much out of life as possible, despite living with dementia — this is not the perspective of the Alzheimer’s Association and many of its members. Caregivers, facility managers and others who work directly with people tend to like our approach. Many researchers, physicians, pharma/biotech representatives and others did not, feeling that the negative approach to the disease was honest, helpful and necessary for fund raising given the absence of a cure.
The practical approach versus scientific proof.
There is no research-based proof at the moment for the MindPartner® approach. It is just an idea. As a scientist I must admit I’ve seen this a dozen times in my career in different domains but it always surprises me. The concepts underlying MindPartner® come directly from the histories of individuals with dementia and techniques or wisdom from professional caregivers. Everyone with dementia, for example, is challenged by communication problems and this can be very frustrating. Lots of techniques exist for helping here (and several are used in our app designs) but research on the validity of these techniques is relatively sparse.
As both a researcher and an applied psychologist I saw this schism hundreds of times over the years. It is the classic “meaningfulness versus rigor” conundrum. What matters the most, a rigorous, scientific study in a very narrow area with little probably of producing results that will ever be meaningful — or a wonderful caregiving approach to communication that seems to be well received by patients but is hard to research because of its complexity.
I think that over time, many of the apps in MindPartner® will produce results that can be tested. Many others connected with planning, joy and reducing frustration may be more challenging to validate!
Whew. I’m glad the conference is finished! I doubt that we will return next year but instead will focus on one of the international conferences for professionals who deal with caregiving. In the next post I’ll describe our first version of MindPartner® (MindParter-2016) in more detail. It will designed largely for individuals with early-stage dementia (who can work with family and friends to construct the companion mind); but, we will also a offer free version for later-stage individuals that gives them access to the “Joy Shots” app.