Have you ever stopped to wonder why we, as a society and a field, separate and confine people based on a diagnosis of dementia?  Who else in our society is segregated and lives behind locked doors? It’s time to ask whether there’s a better way. Just like we learned the value of moving away from an institutional model of care and restraint use in nursing homes, could we also learn the value of creating inclusive communities where people of all cognitive abilities live together?

We believe people living with dementia thrive in the most inclusive and person-directed settings possible, with open doors and freedom to move about and enjoy community life. Wherever a person living with cognitive change lives, and whatever support they’re receiving, they should remain valued members of their community, where shifting realities are accepted and living well is achievable by all.

To cultivate inspiration and dialogue, we (Jen and Kirsten) co-facilitated a virtual shared learning series called Embracing Dementia Inclusion. During the five-part series in the spring of 2024, we heard from subject matter experts and experts of lived experience. Together, we explored the arguments against locked and segregated dementia care, unpacked the barriers associated with offering inclusive and integrated memory care, and imagined a world without stigma related to dementia.

The Five Arguments

With credit to Jennifer Carson, Ph.D., and Allen Power, M.D., the following five arguments against segregated dementia care offered foundational underpinnings for the series.

1. The Civil Rights/Human Rights Argument: This is the social justice argument that we all have a right to choice in our housing.
2. Locked Doors are the Primary Cause of Distress: Research supports the idea that people try to escape places where they feel trapped.
3. The Fallacy of Homogeneity: There’s so much diversity among people living with dementia, how can one approach work for everyone?
4. The (Lack of) Evidence on Segregated “Memory Care”: There’s no clear evidence in support of locked and segregated memory care. And furthermore there are no standards or benchmarks that define good “memory care.”
5. The Demographic Argument: As the number of people living with dementia increases with the number of older adults, we can’t build enough brick and mortar locked and segregated buildings to support everyone.

Barriers

While the arguments are very compelling, challenges and questions come quickly to mind, as with any culture change or human complexity. The shared learning cohort worked together to uncover the barriers to integrated memory care and ultimately start envisioning ways to overcome the challenges and navigate complexities. We discovered stigma beneath many of the following barriers.

• Residents do not want to live alongside people living with dementia because it is hard to see neighbors experience cognitive change and/or it can be uncomfortable to interact. Family members may also feel the same.
• Team members donʼt want to work with people living with dementia. Sometimes they are uncomfortable or unsure about how to best support them.
• Fears related to safety and associated liability/regulatory consequences. Many feel an overwhelming responsibility to keep people safe from predators, environmental hazards, getting lost, and unintended self-harm.
• Concern about distressing interactions between residents of different cognitive abilities, such as uninvited visits or negative verbal or physical interactions.
• Belief that memory care is the best option for safe, specialized care.

As the series progressed, learning and discussion expanded our thinking about possibilities for enriching well-being and limiting stigma. We reflected on our own definitions of safety and the sources of fear and stigma around dementia, exploring a different way to think about supporting people living with dementia. Passion for inclusion strengthened, fueling the group’s collective commitment to working through challenges. Together, we gathered tangible resources and wisdom aimed at overcoming the barriers, such as:

• Conversation starters
• Educational tools and tactics
• Considerations for operational and environmental changes
• Risk negotiation tools
• Technology options for engagement, autonomy, and safety

Steps Toward Inclusion

During a final session discussion about next steps, participants shared their specific ideas for amplifying the voice of residents living with dementia and care partners and enhancing education to lessen stigma. Both amplifying the voice of lived experience and prioritizing education across communities are vital for opening organizational dialogue about why and how to include people living with dementia and support the well-being of all in a community. These and other ideas to move toward inclusion follow below.

• Seek the insight of lived experience. Invite people living with cognitive change to share their stories and to participate in planning and visioning conversations.
• Offer opportunities to learn about dementia to all stakeholders including current residents, team members, board members, leadership, family members, and the greater community. Because stigma often lies just beneath the barriers to integration and inclusion, learning as a community about the realities of cognitive change is a powerful antidote to fears and negative beliefs. As we witnessed in the shared learning series, people living with dementia are some of the most impactful educators.
• Clarify your organization’s relationship to risk and acknowledge that there is dignity in risk. Risk and safety are complex concepts that hold different meanings for everyone. Consider using risk enablement plans or negotiated risk approaches to decision-making.
• Use technology to help create a sense of belonging through engagement, to monitor the location of residents, and help them stay within a safe walking perimeter, and to foster supportive environments for everyone.
• Educate and collaborate with surveyors and regulators; they are important partners in our work to create systemic support for inclusion.

Other insights from participants point toward resources for inclusion. Within the cohort of shared learners many organizations had both segregated and integrated areas. For example, an organization might offer an assisted living memory care area and integrated skilled nursing. So, we have experience with integration, perhaps more than we realize. How can we learn from and build on these experiences? Also, some participants noted commonalities between our work and efforts to support people living with disabilities and/or neurodiversity.  What potential exists for sharing resources and strategies to support well-being among people of diverse abilities?

As the number of people living with dementia continues to grow alongside the number of older people in our country, we must be more expansive and innovative in our thinking about living well with dementia. Our next Shared Learning Series: Embracing Dementia Inclusion kicks off in February 2025. Register today to be part of this critical conversation and gain tools to make a positive impact in your organization!

Jen Wilson is vice president of well-being at Carol Woods Retirement Community, a LeadingAge member organization in Chapel Hill, NC.

Kirsten Jacobs is vice president of shared learning initiatives at LeadingAge.