Reimagining Dementia: A Creative Coalition for Justice

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A Message from the Reimagining Dementia Coalition

When the founding members of Reimagining Dementia: A Creative Coalition for Justice came together in April 2020, our world was beginning to confront the unprecedented impact COVID-19 was having on our physical, emotional, economic, social and political health and well-being.

Our anger at the toll it was taking on older adults and those living with dementia quickly turned to outrage with the media coverage of the pandemic, given how little mention there has been regarding the role of stigma, racism, poverty, and other social factors, in shaping care practices and public health response strategies to COVID-19 that are having a profound impact on persons living with dementia and their care partners and loved ones.

As people committed, in our respective work, to addressing injustices that people living with dementia face and creating a more inclusive society, we recognized that we had to take immediate action so that people living with dementia can have equal access to health, well-being, privileges, and opportunity. To achieve this justice requires organizing, education, advocacy and innovation at every level of society, and there is no one individual or organization that can achieve this alone.

We felt that a coalition was needed to forge alliances across the globe to work on finally achieving a humanizing vision of care and support that promotes inclusion, relationality, creativity, and the possibility of growth for everyone living with, and who are impacted by, dementia. Unique to this coalition is our belief in the power of creativity – the arts, theater, music, movement, improvisation, performance and much more – to bring us together and innovate new ways to promote personal and social transformation, address social injustices and shift the culture toward relationships, creativity, and human flourishing.

There are, of course, many local, national, and international examples of individuals and organizations making important strides to achieve culture change – our membership powerfully encompasses much of this work. Thus, our aim at Reimagining Dementia is to leverage these and other collective initiatives, resources, expertise, and passion to organize and mobilize strategies, processes, and practices toward the goal of  shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect.

We initiated a call to action and launched Reimagining Dementia in September 2020. As of May 15, 2021, a diverse, grassroots, and international group of 500 people from 23 countries have responded. In October and December 2020 and March 2021 (with new gatherings scheduled for June 8, 9 and 10, 2021), Reimagining Dementia has hosted gatherings in which hundreds of members began exploring how we can creatively come together in ways inseparable from how we can creatively transform the culture of dementia.

Out of one of these gatherings, member Carmela Mulroe wrote a wonderful poem, Yes, Let’s:

Yes, let’s reimagine our way through this tangled mess
that weaves in out of lines that won’t hold still causing us
to chase the clouds, that form pictures of what we left behind.

Yes, let’s reimagine a shift which challenges all the perceptions
of what it means to forget while holding onto the memory of how
you slighted all the wisdom you should have seen reading in between the lines.

Yes, let’s reimagine a new dictionary in which respect, inclusion, and acceptance
are the first words leading down the pathway of revolution armed with love,
compassion and empowerment for me, myself and I decry the idea of a ‘dead man walking’.

Yes, let’s reimagine breaking down the walls which separate you from I
forming the WE needed to create the foundation upon which to
build equality and justice replacing stigma with individuality.

Yes, let’s reimagine giftings shining from the soul which hosts them
under the love and care community brings creating excitement for the dawn of
each new day to reimagine all that life can hold, yes let’s!!

 

We also invite you to read “Separate and Unequal: A Time to Reimagine Dementia,” an article about the Coalition that appears in the April issue of the Journal of Alzheimer’s Disease.

It is our hope that everyone committed to culture change will also join us in reshaping the global conversation on aging and dementia – and have fun doing it! To join the Coalition, click here. If you’re interested in learning more, contact us at reimaginingdementia@gmail.com. We look forward to hearing from you!

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