Recently, I was giving a talk about what I do at Elder Care Alliance, and I realized that I needed to start with the question: What is a dementia-inclusive community? The answer is simple: A dementia-inclusive society is one in which people living with dementia, care partners and professionals work side by side to make a better world. That’s it. Within this deceptively simple statement, however, is the assumption that we have the tools to support this kind of collaboration.
There is a gap we need to bridge before achieving this seemingly modest goal. People living with dementia and care partners are too often unsupported and unseen, and they can end up trapped in a cycle of scrambling to put together the resources necessary to meet basic needs. Professionals respond to this scarcity as well, working long, stressful hours to address urgent issues that directly affect quality of life for people living with dementia and care partners. Because of this, getting to that next step of collaboration happens only when all the pieces fall into place. In theory, everyone should have a seat at the table. In practice, the table is too often available only to those with enough power and privilege to reach it.
The mission of Erasing Boundaries, which consists of the Dementia-Inclusive Communities Initiative and Erasing Boundaries for Business, is to use creativity to remove barriers to participation for individuals living with dementia, care partners and professionals, especially those providing a direct service. We know we can’t remove all these barriers alone — it will take a concerted, cross-sector, societywide effort to address them all. What we can offer is our expertise in facilitating cross-sector collaborations that prioritize and value lived experience, the use of creativity and the arts to promote problem-solving and nonverbal communication, and best practices in designing for and collaborating with people living with dementia.
In practice, this looks like the development of strategic collaborations that fall broadly into one or more of three themes: inclusion and access; arts, culture and creativity; and eliminating stigma and ageism. We do this by offering training in inclusive communication and consulting in environmental design and collaboration best practices; by helping organizations develop and evaluate innovative programs to better serve people impacted by dementia; and through thought leadership that presents our work in the form of conference presentations, speaking engagements and publications.
Since summer 2018, our work has directly impacted almost 800 people, most of them older adults living with dementia. Erasing Boundaries and Dementia-Inclusive Communities has partnered with multiple aging services, educational and cultural organizations in San Francisco and Alameda counties. Our funding partners include the Ray and Dagmar Dolby Family Foundation, The California Pacific Medical Center Foundation, and the California Arts Council.
In 2020, we are focused on building our capacity and our ability to offer effective, innovative services to a wide variety of partners to advance our vision of a dementia-inclusive society in which all people impacted by dementia, regardless of income, identity or geographic location, are fully supported by their communities to live full lives free from stigma and with meaning and purpose.
*Originally published on ElderCareAlliance.org
Veronica McGee says
As a parent of a 20 year old with multiple challenges including non-verbal communication and physical challenges I see so many parallels that I think,,,, wouldn’t it be great if we could work on a way to share our resources and serve our IDD community of adults also….
I love your blog and read all of them..I am also involved in a grant/pilot funded by the ACL to identify and bring a care team to that family to at home living with an adult with IDD/dementia/risk for dementia.
Thanks for sharing this informative essay about a very interesting project. Appreciate the emphasis on collaboration, communication and creativity. We definitely need more such inclusiveness in efforts to empower healthy and purposeful longevity.