Imagine a dementia-inclusive community; a place where each person’s uniqueness is valued, deep relationships flourish and differences are embraced. Imagine a dementia-inclusive community where each person’s perceptions and experience of the world, while often different than our own, are taken into account and honored. Imagine a dementia-inclusive community in which compassionate care partners work proactively to support well-being and uphold each person’s right to live in the least restrictive environment. This is the type of community Carol Woods Retirement Community is fostering on its campus in Chapel Hill, North Carolina.
Carol Woods believes there is an alternative approach to segregated and locked memory care units. While Carol Woods has supported people living with dementia in an inclusive setting since opening its doors in 1979, community members will attest that such an approach is not always easy. In fact, it is full of complex challenges. But those at Carol Woods strongly believe that the benefits are well worth the effort.
Resisting the growing segregated memory care trend, Carol Woods believes each community member has the right to live freely in the manner and place of their choosing. Community members of Carol Woods recently reaffirmed their values and deepened their commitment to inclusion through a new research initiative, The Quest Upstream: Carol Woods’ Journey to Support the Inclusion of People Living with Dementia and the Well-Being of All Community Members. With an intentional turn away from biomedical understandings, reactive interventions and discrete programs, Carol Woods recently launched a project that aims to take the care and support of persons living with dementia upstream – to a place where well-being is proactively nurtured and the right to live freely is protected and maintained. Core to this quest is the understanding that everyone within the circle of care needs to achieve a sense of well-being, and the belief that the distress a person living with dementia might express is not an inherent result of dementia (i.e., so-called “dementia behaviors”) but communication of an unmet need.
Working in partnership with Dr. Jennifer Carson (research assistant professor, University of Nevada, Reno), and guided by participatory action research, The Quest Upstream has two aims:
- to better understand and document the organizational and community requirements of inclusive living, support and care for residents living with dementia; and
- to collaboratively explore and document additional ways to better support the inclusion of residents living with dementia and the well-being and of all community members.
Our goal overall is to raise awareness, challenge traditional thinking and approaches to dementia care and support and offer an alternative that is more humane and life affirming. We invite you to follow our learnings from The Quest Upstream through our monthly blog posts here at ChangingAging. Our next post will describe the community action team guiding our collaborative exploration. We look forward to learning together.