When Reimagining Dementia: A Creative Coalition for Justice launched “Taking It to the Streets,” a global campaign that took place during the week of Sept. 18 to 24, 2023, one of the first people to sign up was Coalition member Nancy Nelson, who has lived with dementia for a decade.  

“When I first entered the world of dementia in 2013, I quickly realized that ‘what is to be is up to me’ so with the support of friends and community, my diagnosis has not been an ending but a new beginning,” shares Nelson, a co-founder of dangle & dot who has published three books of poetry since being diagnosed. “My life is full of ah-ha moments filled with sprinkles of fun, some laughter and joy amongst serious day-to-day learning about myself and dementia. I urge everyone to join us in taking it to the streets so that everyone affected by dementia can live better, longer and with purpose.”

Nancy is one of 55 million people living with dementia worldwide, a figure the World Health Organization expects to triple by 2025 — and this doesn’t include family, friends and others impacted. And yet, Alzheimer’s disease and other dementias continue to be dominated by a stigma- and shame-filled “tragedy narrative” that has led to this very human condition being surrounded by an isolating “cone of silence.”

As we have learned from those who helped bring AIDS, autism, disability, cancer and into the public space, if this is to change, we need to win the hearts and minds of people across the world so that together we can shatter the silence. That’s why we brought “Taking It to the Streets” into every possible community, including long-term care communities, where a number of our members and supporters live and/or work. 

We did this with creativity and through the arts, play and more because, as the work of our members and so many others powerfully demonstrate, this is how we restore humanity to people impacted by dementia and ensure that diagnosis is a starting point for joy, connection, growth, and new possibilities.

Reimagining Dementia is an international group of people living with dementia, carers/care partners, family and community members, dementia activists and allies, health professionals, advocates, artists, academics, policymakers, and others, who share a vision of care that promotes inclusion, relationships, creativity, joy, and the possibility of growth for everyone. Founded in 2020, the Coalition has over 815 members in 33 countries.

With “Taking It to the Streets,” the Coalition asked members, partner organizations and anyone who wanted to help transform the “tragedy narrative” of dementia to host public-facing events, activities and conversations that present a creative alternative to the fear, stigma and hopelessness surrounding dementia, and then had them share their celebrations and stories on social media using hashtags #reimaginingdementia, #takingittothestreets, #shatteringthesilence.

Another fan of the campaign is Wally Cox, who was diagnosed with dementia at age 62 and actively advocates for others living with the condition. According to Cox, who began painting following his diagnosis, “With a condition like dementia, knowledge about the disease process is not enough. Both the care partner and the person with the condition need connection and community to sustain them. Reimagining Dementia offers just such a thriving, inclusive and safe community. I’ve learned that at some point, you must step off the merry-go-round of dementia and its focus on all that you can’t do anymore. The Coalition helps you rediscover your ‘Can do!’ There’s so much life left and it’s precious, and that’s we all have to be part of taking it to the streets!”

Linked Senior supports the work of Reimagining Dementia and its efforts to ensure inclusion of individuals living with dementia. The adage of “nothing about us without us,” is more appropriate than ever within this context. We should always remember that our society needs to focus on the person and their care partner, and not simply the diagnosis. A diagnosis never removes the person.

For more information — and to access campaign materials — visit the campaign website here or contact the Coalition at [email protected]. 

Mary Fridley is on the faculty at the East Side Institute in NYC, co-creator and leader of The Joy of Dementia (You Gotta Be Kidding!) and leads Reimaging Dementia: A Creative Coalition for Justice. Mary practiced social therapy for 12 years and uses the social therapeutic approach as an experienced teacher and workshop leader. 

Charles de Vilmorin is the CEO and co-founder of Linked Senior.

The opinions expressed in McKnight’s Long-Term Care News guest submissions are the author’s and are not necessarily those of McKnight’s Long-Term Care News or its editors.

Have a column idea? See our submission guidelines here.