The unknown world of dementia
I recently had the privilege of being a co-convener of an incredible event. Together, with the other leaders of the Dementia Action Alliance, we brought together more than 70 people with unique expertise, experience and perspective for a Thought Leaders Summit. Our charge was to shape a bold new vision for dementia care, one of the most pressing issues of our time.
Instead of addressing the usual overwhelming dementia statistics that scare us all, our focus was on addressing the unknown. We sought to tackle questions like: How do we help those living with dementia to live full lives? How can we de-stigmatize the disease and create living environments in our community where people living with dementia can live as part of the community? How do we make sure that there is equitable access to services and supports for all people who need them?
Key to the success of this event was the wisdom to invite three people living with dementia to join us, so their voices could be heard. They were Myriam Marquez, Michael Ellenbogen and Sandy Halperin. Fortunately, they agreed, and the event would not have been the same without them. Hearing their personal stories and reflections and seeing their passion for helping others living with dementia was inspiring.
But at the same time, it also gave us some very important context for our work.
It helped us to realize the far-reaching implications that a dementia diagnosis has had on their lives. The loss of driving privileges, the loss of control over decision making, the focus on treating their illness versus nurturing their spirit and well-being, and the awkward moments experienced when someone learns that they have dementia. I would boil their message down to: Our focus should be on the people living with the disease, not the disease itself.
It's easy to lose sight of this simple idea in our efforts to help and protect people living with dementia. We want to be good “caregivers” and to take care of them. But taking a step back and listening to their words gave us a different perspective. They don't want to be cared for. They want to live and want others to help them to live the fullest, most meaningful lives possible, in spite of this dread disease.
We worked together over almost two days to begin redefining how we, as a society, can approach dementia in a more person-centered way with a focus on the person, not the disease. We agreed that the core question to be answered is how to help people living with dementia to live life fully. Now the real work begins to build a plan and to use that plan for change. I am very excited about the possibilities, and I know Myriam, Michael and Sandy are too.