By Kirsten Jacobs, MSW
“At what point in history has segregation ever worked?” This provocative question was posed 10 years ago by Pat Sprigg, then the CEO of Carol Woods Retirement Community, a LeadingAge member. On that day, a room full of participants gathered to explore the best and promising practices in dementia care, and Pat challenged us to reflect deeply on the practice of separating individuals living with dementia — and to consider whether a more inclusive, compassionate approach might be possible.
Today, I find myself among a growing community of professionals, advocates and care providers who continue to ask bold and necessary questions about how we support people living with dementia. What began as a small group of passionate voices has evolved into a burgeoning movement — one that champions inclusive residential environments for older adults, where individuals experiencing cognitive change are embraced as full participants in community life.
Isolation Isn’t the Answer
It’s natural to assume that locked and separate memory care settings, or specialty care units (SCUs), are the safest and most supportive environments for people living with dementia. While in some situations that may be true, research isn’t broadly conclusive. Beyond the lack of evidence in support of separate memory care units, there are no established standards or benchmarks that define good memory care. Often, the locked door is the only consistent feature.
For some organizations, like Carol Woods in North Carolina, creating an inclusive environment that doesn’t separate people living with dementia is not a new way; it has been the only way. From its founding in 1979, Carol Woods has always supported people living with dementia throughout their campus, choosing not to have separate memory care.
“Living (and working) in a cognitively diverse community helps all of us to appreciate that everyone has strengths, and it’s possible to live well with dementia,” explains Jen Wilson, vice president of well-being at the community. “Ultimately, our goal is to support the dignity and well-being of all residents.”
For other organizations, preparation for the growing population of people living with dementia has prompted reflection and reevaluation. “Recognizing the growing number of seniors diagnosed with dementia, we began exploring the creation of a secure dementia unit,” says Sue Verdegem, president and CEO of United Zion in Pennsylvania. “After engaging in conversations with families of current and former residents, a question emerged: Could we continue to deliver dementia care in the same inclusive, nonsecure environment, fostering dignity and community?”
After deep consideration, conversations and research, United Zion created “Better Together,” a tailored program designed to serve residents with dementia across all levels of care without the isolation and constraints of locked units.
Landis Communities in Pennsylvania has been on a similar journey. Evon Bergey, vice president of operations and COO explains that “instead of defaulting to traditional locked dementia units, Landis Communities began by listening, gathering insights from residents, team members, families and national thought leaders. A central question surfaced. ‘Can we provide excellent dementia care in an inclusive environment that honors dignity and fosters community, without resorting to secure units?’”
Guided by the five strategic pillars of research, education, environment, programming and technology, Landis Communities is working to create a vibrant, inclusive environment where those living with dementia can thrive without isolation or unnecessary restrictions. “This inclusive model is not only about innovation; it’s about living out the organization’s value of community,” says Bergey. “Landis Communities continues to advance a future where all residents, including those living with dementia, flourish together.”
The idea of supporting people living with dementia outside of locked areas is often met with fear rooted in potential worst-case scenarios. These concerns are valid. Yet, when we take a closer look at long-held assumptions about safety, we begin to see that eliminating all risk from the lives of those living with dementia carries its own risks, like the risk of diminishing autonomy, dignity and meaningful engagement.
Dignity at Risk
Some aging services providers are starting to explore the concept of the dignity of risk, a theme frequently embraced by the disability-rights community. For United Zion, that means balancing safety with autonomy, which poses an ongoing challenge it is approaching with compassion and intentionality. United Zion takes a collaborative, ‘all hands on deck’ approach to addressing the common safety concern of exploratory walking, often referred to as wandering. Team members from every department accompany residents living with dementia on outdoor walks, ensuring both supervision and the preservation of dignity.
Loomis Communities, based in Massachusetts, has developed a dementia philosophy in collaboration with senior leadership and its board of directors. Lori Todd, the executive director of Loomis Lakeside at Reeds Landing, shares the Loomis philosophy: “Locked doors and rigid protocols may keep residents living with dementia ‘safe’ and provide a measure of comfort to professionals, family caregivers and neighbors, but they deprive the individuals living with dementia of their enduring personhood and value.”
That Loomis philosophy is woven into the daily life of the community. Residents are not confined to designated neighborhoods. Instead, they are encouraged to dine communally and engage in campus-wide activities and events based on their personal interests and strengths. To cultivate a supportive and inclusive environment, all team members receive dementia training, and residents learn how to be a good neighbor to someone living with dementia.
As a social worker, my own education and training are grounded in the person-in-environment (PIE) framework. PIE is a way of understanding the interconnectedness of the individual and their environment. For those of us who have worked in residential care, or even just lived and worked in different spaces, it is clear that our environment impacts our feelings and our behavior in a visceral way.
Asking difficult questions about how we support people living with dementia means reflecting on whether locked and separate environments themselves are in fact the cause of distressed behavioral expressions in people living with dementia, often referred to with the term ‘behaviors.’
While I believe strongly that providers like Carol Woods, Landis and Loomis are offering a possible path toward a more inclusive approach to supporting people living with cognitive change, I’ve also grown to understand there’s no one right way. Instead, as the number of people living with dementia continues to grow, we have a unique opportunity to ask difficult questions, reexamine our approach and reimagine how we support people living with dementia.
For some organizations, removing locks or getting rid of separate memory care areas may not be feasible. However, meaningful steps toward a more inclusive approach are possible. Whether it’s blurring the lines between levels of care and living, integrating activities and meals or addressing stigma through community-wide education, both small and large actions can significantly transform how people living with dementia experience daily life in senior living communities.
As Mary Beth Wighton, author and advocate living with dementia once said to me, “segregation and community don’t go together.” Embracing Wighton’s wisdom and lived experience, we can all work to foster residential communities where everyone feels a sense of belonging.
Kirsten Jacobs, MSW is vice president of shared learning initiatives at LeadingAge, the association of nonprofit provider of aging services. In her role, she leads and manages the organization’s wellness and dementia education strategy and other shared learning activities.