Kendal at Oberlin, a continuing care community, opened in the fall of 1993. One of its founding principles was:
To enhance the quality of life and vitality of those we serve and to foster a sense of community, treating each person as a valued individual and in an atmosphere of mutual respect and caring.” Values and Practices, p. 3
By the winter of 2017, our community was 24 years old with residents living with dementia at all care levels. There was increasing confusion and fear about dementia and how to interact with and support those living with it. In addition, the administration was building a memory care unit, and residents were concerned about its philosophy and implementation in the community.
As a result, a resident committee, Thoughtful Health Conversations, (THC) was looking for ways to help the community learn more about dementia, about its nature compared to our society’s stereotypes of it and about how to continue relating with “respect and caring” for our friends and fellow residents living with it.
We decided that a book group format would give residents a chance to read, think and discuss our experiences over time and so provide a chance to internalize our learning. After wide reading, we selected two books on dementia. We chose Dancing with Dementia by Christine Bryden because Christine has dementia and writes about what it feels like to live with it. Especially in chapter 3, she describes her particular challenges and how hard she is always working to maintain friendships and communication. We hoped it would help the participants develop a more intuitive understanding of our fellow residents living with dementia.
We were very pleased to find that the participants developed a very personal understanding of Christine’s life with dementia. Staff and residents liked the book because “it felt like real life.” One of the care partners said, “I am more patient with those living with dementia, and I don’t avoid them, when before I did.” Another said, “My attitude and demeanor toward people living with dementia were changed. I felt closer to the staff particularly. The residents and staff weren’t expecting to share a common experience about dementia, but we did.” A staff member said, “ It heightened my awareness of seeing a person living with dementia as a whole person.” Another said, “Reading Dancing with Dementiahelped me understand how hard the person living with it is working to stay connected.”
We also selected Dementia Beyond Disease: Enhancing Well-Beingby G. Allen Power because it presents a philosophy of dementia care based on supporting the sense of well-being for those living with it. For Dr. Power, the elements of well-being are identity, connectedness, security, autonomy, meaning, and growth building to a sense of joy. Each chapter addresses one of these domains, and it describes how dementia undermines that aspect of well-being. Then, the author suggests ways to support that domain. Through this book, we hoped that the participants, and the community, would develop a clearer philosophy of dementia care.
We were pleased to find that these staff/resident groups built a more mutual understanding of our philosophy of dementia care. Participants said, “Staff were re-charged to look for non-pharmacological ways to improve well-being.” “I loved the pyramid of well-being with joy at the top.” “We greatly appreciated the emphasis on person-centered care.” “Learning about the residents’ feelings about the memory care unit changed our original intention so that we want it to be both a family community and a part of the larger community.” “As we talked, we learned how much the staff already know about dementia and about how much they already do to provide person-centered care.”
At the same time that THC was planning its book groups, the Kendal administration, accredited by CARF since 2012 with a “Dementia-Care Specialty,” was seeking fresh ways to provide their annual dementia training. In a moment of insight, we combined our efforts. We decided that each book group would be a partnership with half staff members and half residents. A resident and a staff member would share each facilitation. It turned out to be the best idea we could have had.
Staff were given the choice of refreshing their dementia training with a new choice of a book group along with the usual online and group education. The administration felt that staff might enjoy participating in a book group, and they hoped that the book discussions would promote a more intuitive understanding of dementia for staff, care partners and residents in general. Staff in housekeeping, dining services and nursing chose to read Dancing with Dementiawith residents while medical administrative staff and other residents read Dementia Beyond Disease.
In addition, a low vision book group was developed, reading aloud and then discussing both of these books over time. At the same time, we also established a staff/resident care partner book group. It was also very powerful, but we were unable to find a book that was worthy of recommendation. However, it was so successful that it has now become a permanent support group.
The shared book group composition turned out to be surprisingly successful. Residents and staff later said, “When we closed the door, and we shared our experiences, we found we were all equal. We discovered that we all had the same fears and anxieties, and so we learned that we could trust each other – we were one community.” Residents learned to see staff members as mothers and children, and so had a whole new respect for them. Staff felt trusted and valued in a new way. “We stopped being us and them, and we became one community working together.”
This staff/resident process created a new understanding and compassion for those living with dementia throughout our community, and it helped develop a new philosophy of dementia care. It also built a new level of trust and community between staff and residents. It worked very well with this topic because staff needed the training time, residents were seeking a better understanding of dementia and we were able to find important books on the topic. This same process could be equally effective with other topics where staff and residents need to build a new community understanding in areas such as political beliefs, cultural diversity and gay, lesbian and transgender issues. This is a powerful tool, which can be employed to build understanding around many different topics. It also has the additional advantage of just being fun.
These book groups could not have happened without the creativity, hard work and the determination of staff and residents to work together and create a community of mutual respect, caring and support for all of us and especially for those living with dementia. Thank you for all of your unstinting hard work.
For questions, comments or more detailed information about how we implemented the book groups, contact Elizabeth Hole at firstname.lastname@example.org