The UMBC Erickson School’s 7th Annual Memory Care Summit in Orlando delivered on i`ts promise “to transform thinking about memory care.” This year’s program theme of “connections,” was inspired by Dr. Judah Ronch’s presentation surrounding brain science and neural network mapping. His message was clear. Each of us are entirely unique by virtue of both the memory formation and retrieval processes. In fact, even a singular memory becomes layered with individuality as it is compounded by recollection. We left the conference focused less on the hard science of 3D brain scan imagery and more on the natural rhythms of engagement – and how active awareness and recognition of this process can lead to higher states of order. Whether we are talking about people, projects or memes themselves – multiple associations will always create resiliency. This continuously programmable framework helps to either sustain or redefine our elusive and ever-changing concepts of “self” and “other.”
While recapping the conference in prior years, we have always emphasized the intentional bookends crafted by The Erickson School. Dr. Ronch launched the first day by reflecting upon the concept of the “connectome” and how its lessons can help us to improve and expand upon the culture change movement that is still underway. In essence, person-centered or person-directed care is not just a good idea – it is an elevated approach that honors the power and persuasiveness of partnership.
If you are not familiar, the Human Connectome Project represents the scientific moonshot of mapping the neural pathways in the brain of healthy adults. Sebastian Seung’s popular 2010 Ted Talk, “I am my connectome” introduced this concept to a mainstream audience:
Did you know that our connectome is presumed to be as individual as our genome? If you want to learn about the staggering complexity of this mapping project and where we are collectively in the research process, please find time to view the “Cartographers of the Brain” panel from 2017’s World Science Festival:
Our biology is so incredibly (and infinitely) complex, as each of the panelists attest, that any expert worth their salt is humbled by its study. Nothing we have created to date can compete with the technology of nature. In a time where man-made technology is revered, it is important to acknowledge how little we know about everything.
Designing with Intention
The Disney Institute’s Program Facilitator, Mark Matheis conducted a behind the scenes tour of the Magic Kingdom for us after an introductory presentation. When you learn about the Disney Culture, it is always emphasized that they have “learned to be intentional where others are not.” While walking down Main Street, we were educated on how this philosophy manifests in practice. All design elements work together to reinforce a positive experience for guests of all ages and backgrounds.
At the surface level of Main Street, every architectural and operational detail influences our behavior and engagement with the environment. Literally, just beneath the surface, a vast network of infrastructure sustains the quality and nature of that street-level experience. Disney understands what people of all ages hold in common, but they also strive to capture and account for our uniqueness. This is accomplished by combining cultural and psychological influences and establishing something that appears to be uniform but has been aggregated from the broadest spectrum. For example, the building facades borrow something from architectural styles around the world. Wherever you’re from, it is possible for you to feel at home on Main Street.
In a standout session led by Erickson graduate Donna Poole and her daughter Jessie, we were introduced to their personal experience connecting caregivers with the lessons of improvisational theater. If you are already familiar with this coupling, please share it broadly. We would also recommend reading Yes, And, and viewing the 2018 NIC Talk by Kelly Leonard:
There was a palpable change in the audience during this particular session because of how impactful it was. We were all intensely moved by their story and its delivery. The quality of observations from attendees during the Q&A seemed to affirm that we had all literally been uplifted – especially in our collective thinking. When we first started talking about the “connectome”, we were looking at images of the brain alone. Someone suddenly made a loose (almost transcendent) comment about the presence of memory outside of the brain for the first time since the Summit began. As Deepak Chopra consistently relays,
“Instead of conceiving reality from the bottom up, moving from tiny building blocks to larger and larger structures, one could do the reverse and create a top-down model. In other words, the starting point would be the whole, not the parts. So what do we know about reality as a whole?  ”
It is legitimate to focus on the brain and its immediate connectome, because we must start somewhere. Let’s just not forget that we have mountains to climb! There is a larger question about consciousness and the nature of “mind” that needs to be addressed.
A Call to Mind
We view the founding Erickson mission of combining aging, management and policy as being more timely now than ever before. Recalling that enduring progress does take time, there is finally a clear opportunity emerging from the groundswell of interest and legislative traction related to the Age-Friendly Movement. Whenever keywords surrounding the World Health Organization’s Network, Livability or up and coming building/occupant performance standards like, WELL or Fitwel surface, we are both excited and disheartened. Excitement exists because we believe in the power of shared and comprehensive frameworks to transform culture. We are disheartened because we also recognize the power of babel. There are so many competing standards and movements in our industry alone – let alone in and across other sectors and geographic boundaries. If we really want to “connect,” a unifying banner is imperative.
For the first half of the Summit, the Age-Friendly movement surfaced a few times as a talking-point. After Donna’s session, we started to make open reference to its all-inclusive nature. Just as the mind, memories and our personal identity transcend the physical brain, Age-friendly is not about “Older Americans” alone. It is (at least we hope) about being “mindful” of how to integrate everyone within an intentionally supportive community infrastructure. As the lead for WHO’s network in the United States, we commend AARP for positioning this standard as “livability” – with relevance to all ages. We should not have to visit Disney World to experience the magic of Placemaking or Building Healthy Places!
The State of Emergency
On day two, newly appointed Secretary of Elder Affairs, Richard Prudom, enlightened us about the scope of planning and coordination undertaken by the State of Florida for disaster planning. Together with Kathryn Hyer, Ph.D., representing the Florida Exchange Center on Aging, we witnessed a compelling case study surrounding the state and local collaboration responsive to recent hurricane disasters.
Emergencies are local and so too are the resource needs responsive to them. While considering the relevance of this program to the Memory Care Summit, the analogy emerges. Our industry is replete with diverse and disparate resource outlets represented by a myriad of constituents. Leadership influences are required to “connect the dots” and marshal alignment responsive to our own State of Emergency – the Future of Aging. If we want to support and augment critical public services, we should strive to become more familiar with their delivery frameworks and actively seek opportunities to leverage common language and structure.
A Quixotic Quest
A Hallmark of the Memory Care Summit is the final book-end of a human interest story – typically a first-person account from someone living with a Memory disorder. These stories are often heart wrenching and reinforce why we are in the business we are in. More importantly, the heart strings pulled remind us that this is not really a business alone – but more of a societal journey where we are all on a heroes’ quest of sorts together.
Brian LeBlanc is an International Dementia Advocate. In his own words, his personal mission is to act as a voice for those who are no longer able to speak. Brian allowed us to look inside his own experience with early-onset of dementia. He juxtaposed the active eloquence of his delivery and poise in speaking to us with a recent and personal video recording that captured an airport episode of what he characterizes as a fog – when the symptoms of his dis-ease are being expressed. The contrast between the energy of the gentleman presenting to us and the man we could observe being lost on screen was stark beyond words. In his closing, Brian read the Impossible Dream to us and asked that we listen through a particular lens – What if a Cure for Alzheimer’s was the Impossible Dream?
The Impossible Dream lyrics by Man of La Mancha from Best of Broadway – American Musical soundtrack.
The Impossible Dream lyrics: Lyrics by Joe Darion In this song, Quixote explains his quest and the reasons behind it … in doing so, he captures the essence of the play and its philosophical underpinnings. (For me, it
Catalyst for Convergence
In reflecting upon the theme of the Memory Care Summit, we consider the broad implications this has on our industry at large. The Summit, with its diversity of program content and participants, proves a stellar example of research, education and practitioners coming together and making connections. This seemingly proves the formulary for moving forward – where we recognize and embrace the individuality of all stakeholders in this journey and the value proposition represented by all knowledge and experiences – taken together and appropriately combined. While connecting the dots seems daunting, coming together and collaborating on the opportunities and obstacles ahead is undoubtedly the prudent path of achievement. This is the essence of integrative thinking that is championed by the Erickson School and its programming. The Memory Care Summit is perhaps the microcosm illustration of this universal solution. As before, the Summit fuels our own thinking and continues to inform our own direction.
Systems and processes that we design with creative intention are the true enablers of engagement and progress – but they don’t create impact overnight. The Disney Organization and its Institute have been fine-tuning and memorializing their own leadership best practices and operational expertise for decades. Any attempt to model the end-result of all their learning would be quixotic absent a commitment to do the work!
What would the world look like if we could live, work, play, stay and age well in States of America that were truly United? The first step is to embrace a “Yes, And” mentality. The gears of policy, management and aging will not turn on their own – and certainly not in isolation. The Memory Care Summit induces our thinking about the value not just of creating relationships but also on cultivating them with purpose and humility. Connections – like the teeth in a cogwheel – make forward motion possible one increment at a time. Programs like The Memory Care Summit help to pave the way!
 Chopra, D. (2019). Can There Be a Science of Consciousness?. [online] Deepakchopra.com. Available at: https://www.deepakchopra.com/blog/article/5791 [Accessed 4 Feb. 2019].