When my dad was diagnosed with frontotemporal degeneration (or bvFTD/ALS specifically), it was easy to fall into a depression. The dominant culture, all I had learned while volunteering in hospice and assisted living, and my own youthful imagination all led me to believe his fate as a person with early onset dementia was a "nightmare," "tragedy" and (as a daddy's girl) "my greatest fear." In our death-denying society, so addicted to productivity, there didn't seem to be spaciousness for a dynamic and life-affirming portrait of dementia. Folks simply weren't talking about how to have a life well-lived with neurocognitive change, or if they were, I had not been exposed to them.

These days, Reimagining Dementia: A Creative Coalition for Justice is taking it to the streets to help change the dementia narrative. They understand that talking about people with dementia as if they are "zombies" or "gone" robs the patient and their caregivers of autonomy, kindness, humanity, and creativity and leads to real, preventable negative outcomes (check out "Separate and Unequal: A Time to Reimagine Dementia" and the AMA Journal of Ethics article, "Transcending the Tragedy Discourse of Dementia" for more info). This coalition is composed of actual people living with various dementia diagnoses and people like myself who have lived experience and know that we as a society can do better to preserve personhood and well-being for all.

I am supporting Reimagining Dementia's Taking It To The Streets campaign this year by sharing their story here and on my social media, in honor of my dad. He was always an advocate for the underdog and would be so tickled to know that I now have a child of my own that we've named "Johnny Lee Sunshine" as an homage to nickname that he self-assigned when he had FTD, "Johnny Thunder." We are seeing the light now about the harms of ableism and the trappings of dysfunctional and outdated medicalized systems, where dementia is seen as a personal failing and an excuse to strip a person of their choices and joy. We - as a family and as coalition members - are ready to build a world where Johnny Lee and all beings are valued for their whole humanity, their whole life through. Will you join us in Reimagining Dementia yourself this month?

Read the Reimagining Dementia Call to Action and reach out to discuss more!