NOT WITHOUT US is a documentary film that centers the voice and experience of people living with dementia. Organizing around the principle “nothing about us, without us” the disability rights movement recognizes that meaningful change cannot begin until people living with disabilities are respected, and centered in those efforts. People living with dementia will be at the forefront of the movement to dismantle the toxic environment in which we think about and treat dementia. People living with dementia will be the leaders of the movement to build supportive cultures around themselves as they live with these devastating diseases. Not Without Us is a film that will begin the process of building the engagement and critical connections to communities of people living with dementia.

My Mom, Joyce, was diagnosed with Vascular Dementia in 2014. Together we struggled, like millions of people in this country, to understand that diagnosis, and to respond as a family. We struggled with the absence of resources available to people diagnosed with dementia. And I experienced the stigma and marginalization that people living with dementia are facing.

As I learned more about dementia, however, and as I began to participate more in the communities that people living with dementia were building, I became deeply impacted by the strength, resiliency, compassion, and power that was being incubated in these groups.

I think the thing I love most in thinking about dementia and engaging with people who think about dementia, is that all conversations that begin with dementia, inevitably finish on something else, something more universal, something powerful, something that you wish everyone would have the opportunity to hear and experience.

Dementia is a difficult topic, but it can also be a path to a more open, more courageous, more caring culture. NOT WITHOUT US builds a framework for engaging with some of the most challenging issues facing the dementia community. The film dismantles the aura of “hopelessness” that discourages the dedication of energy and resources to these areas.

NOT WITHOUT US outlines the foundations for a broad based movement that will begin to agitate for deep changes in how our society thinks about dementia, how we imagine dementia care, and how we can reintegrate people living with dementia back into our society and communities.

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