What is On Dying of Dementia in a Capitalist System, and how did it come to be?
On Dying of Dementia in a Capitalist System is a short animated film based on my lived experience and observations while advocating and caring for my partner, Jim, while he was in memory care. It began with a poem I wrote 3 days after my partner died from Lewy Body dementia, 5 years after diagnosis.
I am a recognized documentary filmmaker. My passions run toward labor, human rights, environmental justice, and cultural democracy. I am interested in the lives of ordinary and marginalized Americans. I felt as though I was in a position of witness in a hidden world.
And so, I felt that if I wanted to express an experience—shared by many—that I needed to make a film. The film had to be animation because I was denied access to the facility immediately after Jim’s death. I was fortunate to work with 2 animators from Chile, Sebastián Bisbal and Natalie Johns, who understood magical realism, and a sound designer, Andrew Garrison. The 15-minute film was completed Jan. 25, 2025, and a trailer is viewable here and on my website. The film will be made freely available as part of PBS Shorts this spring.
Soon after its completion, I felt that together with other caregivers, artists, and scholars, I needed to produce more about the subject. Growing from this work is an arts and humanities website exploring what it is to be human and to live with or care for someone who is living with dementia. We hope that this personal and collective space will allow the public to freely explore experiences, art, science, and ideas about dementia. In this way, those most impacted might find comfort and understanding that they are not alone.
Who initially inspired you to grapple with dementia?
My husband, Jim, was diagnosed with Lewy Body dementia in 2014. I became his primary caregiver with increasing difficulty both physically and spiritually. After a violent episode on Memorial Day 2019, we placed my partner in memory care.
I spent the afternoons and evenings with him. Part of the time I was in a state of rage at the facility and in the role of advocate. The rest of the time I was with Jim, the other residents, and direct-care workers. I was deeply moved by the humanity of the people living in the facility and the ones who cared for them.
This short film explores the contradiction between for-profit institutions and the deep humanity of care workers and residents. The piece needed to end in healing, so it took me a number of years. The truth of observation is seared into my heart.
How has working on dementia-related art changed you?
My work has always involved truth telling and experimentation. This is no exception. I wish it was less personal but I suppose that was bound to happen. I felt the demands of a witness.
I think aging beats the alternative. I’m 77 and, unlike most caregivers over 70, (I was primary caregiver for 5 years) I managed to survive—many don’t. I think that part of my survival was the intense joy of making art.
How has On Dying of Dementia in a Capitalist System been received?
The film is currently on tour and is being made available through PBS Shorts with Austin PBS as the presenting station.
The film won best documentary short at the Portland Festival of Cinema, Animation and Technology. Festival director Marisa Cohen says “…stood out for its artfulness, originality, and pure dedication to truth. It was like a punch in the gut and I won’t forget it.”
Find more from Anne Lewis her website and On Dying of Dementia in a Capitalist System on its website andFacebook page.
