Building Relationships was an obvious thematic choice for the third incarnation of the RIA and Schlegel Centre for Learning, Research and Innovation in Long-Term Care’s Culture Change Exchange (CCE), not only because the event drew presenters from Australia, Scotland, the U.S. and Canada, but also because of the content presented.
There was a true sense of collaboration among change agents on a provincial and global scale during the March 16, 2017 event, contributing to a growing network of people around the world who are pushing the boundaries of innovation to reshape societal attitudes toward aging. This is a primary focus of the RIA and the key reason the organization will continue to promote ongoing opportunities for idea sharing and knowledge exchange.
In terms of the content offered by a range of presenters, a full room of in-house attendees and many more following online heard different perspectives on the importance of relationships in the quest to change the culture of aging. For older adults, especially those living with the cognitive and sensory changes associated with dementia, strong, positive relationships with family members, care partners and the community at large can make all the difference in finding meaning in life.
The power of language
Consider the language one uses in addressing an older adult. During her keynote, Daniella Greenwood, Strategy and Innovation Manager with Arcare in Australia, asked the audience to imagine what it must feel like when someone uses childish language to address their elders.
Daniella told the audience about her mother, a caring, generous woman with a gentle spirit and a kind heart. She returned home from her local bakery one day completely out of character; this kind woman who always lived with a positive outlook on life looked into her daughter’s eyes through tears and said: “I’m old.”
“What on earth could’ve happened at the bakery to make you so upset?” Daniella asked.
A simple action and phrase uttered by the bakery cashier as she handed Daniella’s mother her change had unintended consequences. “Here you go, Sweetie,” the cashier said. A simple enough phrase, yet one that would never be offered to a 35-year-old woman in a power suit. It’s a phrase and a tone reserved for children and ‘cute, little old ladies’ and however unintended, when a phrase such as this is offered to an older adult it can be incredibly demeaning.
Language is powerful, whether through tone, gestures or word choice, Daniella encouraged attendees to take ownership of how they speak and act as they build relationships with the elders they serve.
“We can talk about culture change,” Daniella said. “We can have an organization that’s got really lovely values and a glossy magazine and beautiful buildings and a fantastic leadership program . . . but where the rubber meets the road is when there’s a human being interacting with a resident in the real world.”
“This is where culture change lives or dies.”
Dementia and sensory changes
Agnes Houston was another key speaker among the 17 CCE presenters. Diagnosed with early onset Alzheimer’s disease in 2006 at the age of 57, Agnes offers a unique perspective as she travels the world from her home in Glasgow, Scotland seeking information and fellowship while advocating for a better standard of support for those who live with dementia.
Agnes spoke about the often-forgotten sensory changes that affect those living with dementia. Most people equate such a diagnosis with memory loss, but the changing brain can affect the senses as well. When she was diagnosed, Agnes explained, all the focus was on memory and none on her changing tastes, her heightened awareness of sound or the confusion a loud room creates. Nobody explained that hallucinations both in sight and scent could be a reality for a person living with dementia. Coping strategies weren’t offered.
Each sensory change can add another barrier to the relationships that are so necessary in the life of a person living with dementia.
“If you woke up tomorrow and you suddenly couldn’t see, you’d be a bit emotional wouldn’t you?” Agnes asked through her thick Scottish accent. “Just to get a pat on the back and an ‘Aye, that’ll be your dementia, off you go.’ You’re supposed to be able to cope with that?”
Agnes says she’ll never stop advocating for a greater awareness and understanding of these challenges. She helped create a guidebook, Dementia and Sensory Challenges: Dementia can be more than memory, and the insights she shared had a lasting impact on the CCE audience.
If society as a whole can begin to understand the sensory changes facing some older adults while shifting the language of daily interactions to create a more respectful tone that doesn’t diminish the status or experience of elders, then relationships are bound to grow stronger.
Balancing autonomy with risk
Dr. Allen Power, who recently joined the RIA as the Schlegel Chair in Aging and Dementia Innovation, spoke of a third angle to the relationship dynamic that can either enhance or diminish quality of life for older adults, especially when they’re living in a long-term care (LTC) or retirement setting. He spoke of surplus safety and balancing autonomy with risk through a relational approach.
Conventional wisdom today suggests the moment a person moves into LTC they are at greater risk of everything from infections to falls to heart failure. Every team member must remember that these are grown adults capable in many ways of assessing risk and making their own choices. All too often in LTC settings, residents are told ‘no.’ They’ve lived long lives, survived unknown challenges and weathered countless hardships, yet in their latest years, they’re denied the ability to choose to take risk.
“Locked doors erode autonomy,” Al told the audience before borrowing a phrase from his Eden Alternative colleague, Dr. Bill Thomas, who once said: “The only risk-free environment is a coffin.”
Each person’s tolerance and desire for risk is as varied as their DNA, and the only way to truly know what a person is capable of is to develop a strong relationship with them. A blanket policy serving all residents in a LTC setting can sever each individual from what matters most to her or him.
There is risk in all aspects of life and care partners who have strong relationships with those they serve should ask themselves not so much what the risk is but instead, what is the downside risk of doing nothing? To be clear, Al wasn’t advocating for the elimination of safety measures, but was instead suggesting that through relationships, care partners can support residents to weigh the benefits and drawbacks of all decisions to help them make the most out of every day.
Moving forward together
The March 2017 CCE was focused on relationships, not only between care partners and elders but among the people who are working around the world to affect meaningful change. Team members and leaders from several organizations in Ontario offered additional insights beyond what the three keynote presenters shared, and collectively the group reiterated that exchanging ideas is the best way for culture change to advance in Canada and around the world.
This CCE, like others before, was a small sample of what will happen when the RIA co-hosts Walk with Me: Changing the Culture of Aging in Canada on March 5 and 6, 2018.
For more details about the March 2017 Culture Change Exchange, including online videos from each presentation, visit: www.the-ria.ca/cce-march-2017
Written by Kristian Partington