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Published: August 2, 2019

 Group of ladies attending dementia conferenceWith book clubs, monthly newsletter articles, a memory enhancement course and dementia awareness training, Kendal at Oberlin residents and staff have been “re-imagining dementia” for some time, which helps explain why they were invited to present at the Dementia Action Alliance’s “Re-Imagining Dementia” conference in Atlanta this summer. 

The invitation was prompted by an article resident Elizabeth Hole wrote last year for the Alliance website about Kendal programs that involve participation from both staff and residents. 

Elizabeth and resident Carol Bojanowski, along with Michele Tarsitano-Amato, director of Creative Arts Therapy, shared stories about how staff and residents at Kendal have helped the community better understand and support those living with dementia. 

Along with the book clubs, the presenters talked about Kendal’s Jameson House, a 12-bedroom community that offers residents with mild to moderate cognitive changes a supportive, warm and creative “small house” environment. The house, which opened in early 2018, is not a “locked” space but rather built to allow residents to come and go freely with safety procedures in place if needed. 

“People were surprised to hear that we have a memory unit that is not locked. The chairman of the board of directors said Kendal was innovative and creative.  I was very proud of Kendal,” Carol says. 

But the conference, which included active participation from people with dementia (some who wore “I’m a person living with dementia” button), has generated lots of ideas and questions for the Kendal presenters.

Related: Dementia advocacy at Kendal >>

Empowering People With Dementia

Upon their return, Carol gave a report to the Kendal at Oberlin Residents Association (KORA), which provided financial support for the women to attend the conference.

“I have a lot of questions,” Carol told KORA: 

  • “How do we change our perceptions of dementia? We tend to view dementia in its later stages and see people as victims and pity them.    
  • How do we empower people in the early stages and help them have a purpose in life? 
  • Should we form peer support groups for people with dementia? 
  • Should we be doing research at Kendal around dementia, especially looking at patient outcomes in the Jameson House?
  • Should we have an advisory council here at Kendal of people with dementia?” 

Related: Retired Episcopal priest speaks about her experiences with dementia >>

Bringing People with Dementia into the Conversation 

The Alliance has an engaged advisory council of people with dementia, many who attended the conference and gave formal and informal presentations.   

“It was so natural and easy interacting with people with dementia. We want to try and come up with some kind of advisory committee at Kendal. We won’t know what authority and power they need until they tell us but want to carve out space for them. Instead of hiding and losing status, we want to help them gain status,” Elizabeth says. 

Elizabeth and Carol plan to work with the Dementia Education Group, comprised of staff and residents, but also other Kendal committees not focused on cognitive issues. 

“What does the woodshop or the art studio need for people with dementia? What navigational aids do we need around campus?” Elizabeth asks. For instance, she recently walked a resident to Bible study, but thought that aids along the hallway would allow the resident to do so alone.  

The Dementia Friendly Discussion Group meets monthly, but almost all of the attendees are people who do not have cognitive decline. 

Last year, Tracey Lind, former dean of Cleveland’s Episcopal Trinity Cathedral, gave a talk at Kendal about her early-onset dementia diagnosis. Her presentation was well-received, but would a resident feel comfortable sharing his or her diagnosis with the community?

“The logical next step is bringing people with dementia into the conversation.” Carol says. 

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In the past, Molly Kavanaugh frequently wrote about Kendal at Oberlin for the Cleveland Plain Dealer, where she was a reporter for 16 years. Now we are happy to have her writing for the Kendal at Oberlin Community.