Since opening its doors in 1979, Carol Woods Retirement Community, home to almost 500 residents, has supported people living with dementia in an inclusive setting (i.e., no segregated or locked ‘memory care’). Such an approach is not always easy. In fact, as we describe in our first blog about the Quest Upstream, such an approach is full of challenges. There is a common tendency to address such challenges with simple or complicated solutions more befitting of the inanimate. Instead, embracing the complexity of the human experience, Carol Woods is addressing these challenges through a process for community engagement guided by action research. We call this process the Quest Upstream.
Together, we will find a better way forward. We believe the best solutions, while ever-changing, will come from the community itself, and each community is different. Our aim is to foster Carol Woods’ collective capacity for working through complex issues together. This is how you develop a responsive organization capable of making the most effective and sustainable improvements in dementia support.
This effort is guided by a community action team; a diverse group of 17 Carol Woods community members and one research partner (Jennifer Carson). This group includes employee care partners from different departments and shifts, family care partners and residents living with and without a diagnosis of dementia. The purpose of the community action team is to open a space for all community members to be engaged in the important work of supporting well-being and creating an even more inclusive future for residents living with dementia.
Central to our process is a series of neighborhood retreats developed by the community action team. Four neighborhoods comprise the higher levels of support at Carol Woods, two at the assisted living level and two at the skilled nursing level. Each interactive neighborhood retreat engages community members in thoughtful dialogue and reflection regarding the domains of well-being as described by the Murray Alzheimer Research and Education Program. These domains (originally described as ‘meaningful experiences’), developed in partnership with people living dementia, include: being me; being with; seeking freedom; finding balance; making a difference; growing and developing; and having fun. The idea is to engage neighborhood teams in thinking about and planning what they can do to proactively support each person’s well-being so people do not experience episodes of distress.
Each neighborhood retreat concludes with the collaborative identification of some opportunity areas for improvement. Then, following each retreat, each neighborhood democratically selects a goal related to a domain of well-being and develops an action plan through daily employee shift huddles and weekly neighborhood huddles, inviting all neighborhood members to participate.
Over the course of one year, and after a series of neighborhood retreats, Carol Woods’ community members will have collaboratively advanced, at a minimum, 16 proactive neighborhood well-being goals (4 neighborhoods X 4 retreats = 16 goals). But these neighborhood goals are just the beginning. Through this type of regular reflection and dialogue as neighborhood teams, we aim to cultivate stronger relationships, better teamwork, broader perspectives, deeper understandings, and new paths to effective action.
If the Quest Upstream sounds kind of messy and uncertain, that’s because it is. Dementia support cannot afford rigidity, and it is not a place for control freaks. Uncertainty is just another word for openness – openness to another person’s inner experience, openness to possibilities. We must embrace complexity, and relationships are the key. Everyone’s participation must be valued and incorporated as we seek to create a better tomorrow, because that is the very dream we seek – inclusion, relationships, role, purpose, meaning and well-being.
The Quest Upstream is in full swing at Carol Woods. Next month, we will share the story of our first neighborhood retreats and well-being goals, and some of the lessons we are learning along the way.