I was born a person and just because I have this thing called Alzheimer’s does not make me any other person, and I have rights and if I have a memory loss and people can’t understand me I will accept the help they give me but it does not make me any different than anyone else I know. I am still me and I will remain me until forever.
— Monica Stannard
What will the future look like with shifting age demographics and staggering increases in the prevalence of dementia? Everyone seems to be talking about it but few bother to ask the true experts (people living with dementia) about what that future can and should look like. If they did, the answer might surprise them.
On Day Two of our Seattle Disrupt Dementia Script Development Workshop we asked the experts and they emphatically declared they desire and deserve a future with opportunities for meaning, purpose and enjoyment, just like anyone else.
Drawing on the “discovery themes” developed on Day One of the workshop, participants worked collaboratively to create a series of improv skits exploring images of our ideal future. One skit showed a world where people living with dementia were valued neighbors, recognized for their unique gifts and talents, and had a place and purpose in their community. Another skit demonstrated the power of self-advocacy and showed fruitful intergenerational interactions. One particularly dynamic skit took us on a musical train ride through the vistas of a dementia-inclusive world, where elders living with dementia were safe to come out of the ‘dementia closet’ without fear of shame and stigma; where meals, rooted in convivium, were shared across generations; where elder’s rights took center stage at a public demonstration and was heard by a just and compassionate society; and finally, where life was celebrated, including life with dementia. By the end of this train ride, we were all dancing for joy, basking in the possibilities.
Personal transformation began to take root.
“I’ve learned that dementia has so much to teach me so that I can speak wisely as a humanitarian and use my music as a platform to advocate,” said Musicians for World Harmony founder Samite Mulondo, a member of the Disrupt Dementia cast. “This has been one of the most beautiful experiences in my life, it has been very special for me to learn from everyone and to share stories.”
The shared experience helped create a space for all involved (participants and tour cast members alike) to feel safe to be themselves. Cast member and recent college graduate Namarah McCall said the experience had given her “the opportunity to learn that it’s okay to be all that I am and in being all that I am I am vulnerable, I can grow, I can learn, I can communicate and I can forge new and intimate relationships with new people.”
We all learned from the disinhibition that accompanies older age and dementia. Forgetfulness was present, but not focused on. The focus shifted from what wasn’t there to what was. Workshop participant, Tim Harmon, summed up this feeling: “The greatest gift dementia has given me is to release me from life-long inhibitions and fears of myself, it has made me honest with myself, given me the ability to look at myself and others and see them as they really are and love them for who they are.”
Each and every one of us has the power to create the frame for our future. After this workshop, we were all left in awe of how much we wanted to live in a dementia-inclusive world. The message written on our hearts is that ‘dementia friendly’ is ‘human friendly.’ As we weave what we learned in Seattle into the script for Disrupt Dementia 2017, we hit the road with the goal to inspire the creation of inclusive and kind communities by sharing what is possible when we learn from elders.
Who’s with us?
Thanks again to all ChangingAging Tour sponsors, and to Momentia Seattle for being an ongoing inspiration! Special thanks to The Hearthstone retirement community for hosting our retreat.