A woman flings herself in a glass house, like a puppet whose master has no care for his actions, she desperately tries to break free of her cage and reach us, the audience. This piece of modern dance, is part of the events related to the DementiaDeal, an initiative led by the Province of Brabant, to raise awareness of the impact of early stage dementia and the value of the local grassroots initiatives. It is being held at a local theatre in Breda, a theatre which within its building houses a stage, networking area and three semi-circular corrugated steel tents that make me feel like I’ve accidentally stumbled into Che Guevara's underground revolutionary camp. But a camp that offers plenty of coffee and Dutch pancakes.
At first glance, none of this may sound like neither the setting nor programme for Dementia but that is ok because as with everything creative, impact is relative and dependent heavily on the context of the individuals in the audience. To me, having recently lost someone to a disease, the woman in the glass house is a stark reminder of the isolation a person can experience in real life when they sadly become a statistic on the annual WHO report. She ends up being watched but not helped, heard but not listened to and unable to interact with the outside world.
But this isn’t about pleasing everyone just as much as the realisation for the team behind the Dementia deal that the impact of a product is not its measure of sales across the globe. Like the audience is made of individuals with different backgrounds, the market is made of customers who live in different contexts. Some families are empathetic and open to confront their elderly parent’s problems like disorientation during the day and memory lapses, while other families would prefer to label it as senile behaviour related to old age or “just not that serious".
This is displayed to great effect in the short film produced by Whalebone & Greenstone which was show at short intervals during the program. The film follows a family of four on a holiday trip, cut short at the start when the elderly grandmother gets frustrated and wants to go home. As the film continues, we see the family, each in their own way, coming to terms with their grandmother’s issues which may or not be dementia but is something that has to be confronted nevertheless.
And this of course is what we are terribly good at: the solutions. So concerned are we, the consultants, the experts, the scientists, with finding solutions that we often forget whether the so-called demand is indeed ready to consider their problems and accept that they need to look into it first. Product exhibition stands at the eHealth week in Amsterdam this year, as with other years, are littered with solutions that have been built based on latent demand and views of focus groups, who are hardly representative of personal context and local communities. Driven by a top down approach (healthcare sustainability, cost cutting, the right not to be institutionalised) solutions have been created while leaving the customer behind with glossy product specification leaflets and reports detailing the statistical and medical impact.
So how do we (re-)connect with those we are trying to help in a time when technology is driving us further apart? How can we get back into the trenches and get a feel for whom we are really fighting for? How can we come back down from the top and take a more grassroots and bottom up view? How can we do all this and still increase impact and ensure sustainability?
This has been a key question for the team behind the Dementia Deal, a journey that began almost four years ago and at that time concerned with scaling innovation. The suggestion, then, was to create a global product for a global problem. This kind of strategy may certainly equal income and growth but it may not achieve sustainability. The Province of Brabant who lead the Dementia Deal initiative argue that sustainability comes from building trust in the local community, allowing for diversity in solutions and building on the local infrastructure of each individual.
After years of focusing on the technological aspects of solutions, diversity is something they have learnt to embrace and today’s programme represents this well: it is a pot pourri of conversations from (and at one point between) patients, elderly citizens, technology companies, researchers, care organisations and politicians. At intervals, the event is peppered with sketches from Marie, a patient, and her carer Kees (can’t get more dutch than that) played by Ben and Julie, two improv theatre actors. At various stages through the morning, Marie finds herself in precarious situations of forgetfulness, stress and frustration, and at one point on the verge of tears.
It is clear the different stakeholders in the room have distinct viewpoints on how to approach early stage dementia and improving quality of life: after all, we too have context and background, and that is what makes us individuals.
This is shown to great effect, when, and very naturally, the actors step into the shoes of the health tech professional and traditional carer, each carrying their philosophy: the former believing that health can be taken care of by technology and the latter believing that human contact is vital. They begin their conversation butting heads but end eventually by finding common ground because they realise they want the same thing: better life for the person.
And this, for me, is where the key to change lies: the individual. We all have a purpose in this world that drives us. As Kees Klomp, a mentor to social businesses explains, People, Purpose and Progress are vital today more than any other time in history. However, the majority of the time, when we go about our daily grind, we forget those 3Ps. In the process, our individual selves are hidden behind our organisations, job functions and budgets naturally setting the stage for years of “not seeing eye to eye” which we mistakenly confuse as being a clash of principals. Everyone will agree that the ultimate vision in health of the ageing society is that quality of life is increased as we live longer. Yet, how many of us remember the “why we do it” by the time we get to the “what we do”? The result is duplication of effort and the “people” part of it disappearing between the cracks.
But as Ben and Julie show us, we need to build trust with the people behind mission statements by having a deeper conversations but consciously leaving our egos at home. This is the first step to making change.
Julie Arts, a member of the Presensing institute, tells us we need to search deep within us. what is your purpose? Not your organisation’s but yours. Then the next step is “what you mean to others”. what is the value you give to someone else’s life? That is the “what we do” connected to the “why we do it”.
As the morning comes to a close and we mingle outside for lunch in the pretty Breda sunshine, I wonder how many of us have digested the message, how many will remember after the networking, and how many will live their purpose the next day.
Did I mention by the way that today’s proceedings were all in Dutch? Well, I don’t speak a word and understand even less. Somehow it didn’t matter...
(Originally published on Jun 8, 2016 @ 13:07, on samuhya.com)