Dr. Annette Liebing sees a global attitude shift on the prevention front, while Sienna Caspar’s vision of person-centred care is becoming a reality.
The New Dementia
Decades of dedicated research have given medical anthropologist Dr. Annette Leibing a panoramic global view of current attitudes and treatments for dementia. And those attitudes are shifting from a focus on reacting to symptoms to one of prevention.
“There’s been a rather astonishing turn since 2007 that suggests prevention may actually possible,” Leibing says.
On a recent stop in Calgary, Leibing gave a presentation titled Situated Prevention—Studying the New Dementia to medical staff, researchers and students. She told her audience that dementia treatment has shifted globally, from using reactive measures to early detection and prevention.
“As a researcher, one should know about what I call ‘the new dementia’—the turn toward early detection and prevention.”
Leibing’s career has been spent studying how different cultures interpret and use the same medical research on Alzheimer’s. Born and raised in Hamburg, Germany, her first academic position was in the Institute of Psychiatry at Federal University of Rio de Janeiro, Brazil. An interest in the psychiatry of aging brought her to the position in 1995.
Leibing says she quickly realized how different social and political factors were influencing individual dementia treatment outcomes in Brazil.
“We heard terrible stories,” she says. “Stories of families who had to work and could not take care of the older person. At the time, Alzheimer’s disease was still relatively unknown to the general public.”
Leibing founded Brazil’s first public specialized dementia research centre. There, “families could not only get treatment, but they could also leave their elderly during the day so they could go to work,” she says.
Later, after a postdoctoral fellowship at McGill University in Montreal, she became a professor of medical anthropology at the Université de Montréal.
In addition to publishing dozens of papers and several books on the anthropological aspects of treating dementia, she continues to travel the globe, conducting field work and participating in large studies on the subject with international research groups looking at the social aspects of medications, gerontology and public health.
The shift toward proactive treatment changes in meaning and effectiveness from country to country because of the different social and political systems at play, Leibing says. In the United States, for example, treatment has long focused on drug-related intervention, including the recent move toward measuring biomarkers—specific molecules’ concentration in brain or biological fluids—to detect and predict future impairment.
But Leibing says biomarkers are still unreliable, despite years of research.
On the other end of the spectrum, Western European nations have largely adopted an intensive, lifestyle-based approach to dementia prevention, she says. The strategies used include not smoking, avoiding alcohol, maintaining a healthy diet, reducing stress, getting ample exercise and sleep, and interacting socially through activities such as volunteering.
And in developed European jurisdictions including the Netherlands and France, the incidence of dementia has actually decreased among certain privileged groups.
Cultural differences play a role, too, she says. In Brazil, for example, she’s observed a tendency even among doctors to blame people for engaging in unhealthy behaviours that may be related to dementia. This can make access to prevention and treatment difficult. “Some of prevention is individual choice,” Leibing says. “However, a lot of it is very social and political.”
Turning Rhetoric Into Reality
Changing behaviours starts with education—but education alone will rarely produce positive results, says Sienna Caspar, an assistant professor at the University of Lethbridge.
This concept is key to anyone trying for positive change in care facilities, Caspar says. “My entire career has been focused on how to make person-centred care a reality, not just rhetoric, in long-term care facilities,” she says.
Caspar reviewed 87 studies where new practices were introduced to staff working with residents, many of whom had Alzheimer’s and other dementias, at long-term care centres. Goals included improved oral hygiene, bathing, mealtimes and recreation.
In 2016, she co-published a paper concluding that in almost 60 per cent of the studies examined, staff members were given information on new practices, but not the strategies to apply it.
“They’ve been told this is best practice, this is the way you should provide care, this is what we know…and then they get put back out onto the floor with no ability to implement change,” she says. This can create moral distress in the staff.
“The worst thing that can happen is you disempower the people you’re meaning to empower with the education,” Caspar says. “They’ve chosen this job for a reason, and if you galvanize them, they’re unstoppable.”
Education is definitely necessary for change, but it’s most successful when supported by enabling and reinforcing factors, she says.
Enabling factors allow caregivers to put into action the new skills and knowledge they’ve learned, while reinforcing factors support them in keeping the changes in place—follow-up, feedback, rewards and recognition, celebration of successes and peer support.
To test this theory, Caspar and a team of research assistants conducted the Stakeholder Inclusion in Practice Change Project in 2017. The project was funded by an Enhancing Lives of People with Dementia Grant sponsored by the Alberta Health Services: Seniors Health Strategic Clinical Network. The project aimed to improve mealtimes at St. Michael’s Health Centre in Lethbridge.
Work began with a four-hour meeting between health care aides, licensed practical nurses, a recreation therapist, family members of residents, dietary staff and the facility’s administrator. After being presented with information on best practices by Caspar’s team, this group—the process improvement team—determined which strategies were likely to improve mealtimes at the facility.
“We recognized them as the experts,” Caspar says. “I have a PhD after my name, but I’m not the expert in how to improve mealtimes in the facility—they are.”
Staff members were empowered to implement the change, and they quickly set out to adjust the physical and social environment during mealtimes. Adequate lighting was provided, tables were rearranged to allow six residents to a table rather than four, and cafeteria trays were removed in favour of formal table settings.
The staff also sat with residents during mealtimes for the first time.
A second four-hour meeting, which focused on further enabling and reinforcing the change, kept the improvements in place, Caspar says. “We transformed mealtime and sustained it for more than six months.”
Caspar is currently retesting and refining the model, now called the Feasible and Sustainable Culture Change Initiative, or FASCII, with Dr. Shannon Spenceley, an associate professor at the University of Lethbridge. The new study will focus on reducing moral distress in staff at long-term care centres—Spenceley’s area of expertise.
When the model is solidified, Caspar will create a toolkit that will show anyone wanting to implement effective change in centres a more complete way to do it. “It’s really having amazing outcomes,” she says.
“I think this model could be used for any practice change you are looking to implement.” [ ]