Breaking New Ground

Two Canadian researchers are challenging stereotypes and offering new innovations in dementia diagnosis and care.

 Dr. Zahinoor Ismail. Photo by Jared Sych.

Dr. Zahinoor Ismail. Photo by Jared Sych.

 Dr. Pia Kontos. Photo by Reynard Li.

Dr. Pia Kontos. Photo by Reynard Li.

Elder-clowns integrate the arts into dementia care

Toronto-based researcher Dr. Pia Kontos is passionate about challenging stereotypes.

Kontos, an associate professor in the Social and Behavioural Sciences Division at the University of Toronto’s Dalla Lana School of Public Health, as well as a senior scientist with the Toronto Rehabilitation Institute - University Health Network, believes that the arts — and, in particular, a unique form of artistic interaction known as elder-clowning — have a powerful role to play in humanizing dementia care.

Elder-clowning can help reduce stigma associated with dementia by highlighting the creative, emotive and deliberative playfulness of older adults living with dementia.
— Dr. Pia Kontos

“Elder-clowning can, I think, help to reduce stigma associated with dementia by highlighting the imaginative, creative, emotive and deliberative playfulness of older adults living with dementia,” she says.

“The more I learned about elder-clowning, the more excited I became about how it resonated with so many aspects of my work and my commitment to making this a better world for older adults living with dementia.”

Between 2012 and 2014, Kontos carried out an evaluation of a 12-week elder-clowning program in a long-term residential care home in urban Ontario. Her research noted that older adults living with dementia who interacted with elder-clowns experienced a significant improvement in their quality of life, as well as a reduction in neuropsychiatric symptoms, such as agitation.

Publications from the study, which were released in 2016 and 2017, showed equally important qualitative findings, she says.

 An elder-clown connection. Photo by True Connections Video/Gilles Gagnon

An elder-clown connection. Photo by True Connections Video/Gilles Gagnon

Kontos observed that older adults living with dementia engaged with the elder-clowns in imaginative and emotive ways, expressing feelings of joy and sadness. 

This, she says, is an extremely important finding regarding the impact of elder-clowning. 

A commonly held misconception about people living with dementia is that they are all unaware of their surroundings and are unable to pursue meaningful activities and relationships, Kontos explains. But watching older adults with dementia being deliberately funny, playful, and creative in their interactions with elder-clowns powerfully challenges this assumption.

Unlike the traditional, heavily made-up clowns that most people are familiar with, elder-clowns work in long-term care, and are specifically trained to interact with older adults living with dementia. 

Although they wear the red noses associated with other types of clowns, elder-clowns usually keep their faces natural, with minimal makeup, and wear clothing that evokes an earlier era, such as 1950s swing dresses, because older-style clothing can be familiar and comforting to older adults living with dementia, Kontos says.

Elder-clowns also use information provided by health care staff or family members to customize their interactions with older adults. “This could include social and familial details, like what their hobbies and preferences are, or what their past vocation was,” Kontos says. 

[They’re] not just responding to the elder-clowns, but are co-constucting beautifully imaginative stories with them.
— Dr. Pia Kontos

She describes the resulting interactions — which can include physical and verbal humour, surprise, dramatic movement, music and storytelling — as tremendously meaningful.

“I found that older adults living with dementia are not just responding to the elder-clowns, but they are co-constructing beautifully imaginative stories with them,” Kontos says. “They’re offering their own moments of fantasy, availability and laughter through reciprocal play.” 

In the long-term, Kontos says that integrating the arts into dementia care can provide enriching experiences for older adults. It can also be part of a broader approach to reducing the stigma associated with dementia, especially surrounding an individual’s emotional responses to arts-based interactions.

“This work, I think, is really well-positioned to respond to urgent calls to address stigma, and to create environments that are more supportive of the rights of older adults living with dementia to live well,” she says.

Kontos is currently looking for funding to support the development of a documentary film about elder-clowning, which would raise awareness of the potential of this art form to enrich lives and foster more humanistic dementia care.

“Not only am I learning more and more about the richness of the lives of older adults living with dementia through my research on elder-clowning, but it’s also helping me to challenge those negative perceptions of dementia, and ultimately to create a more supportive society.”

Early dementia diagnosis and prevention — a comprehensive approach

Behavioral changes — including those involving mood or personality — could be the key to more effective dementia diagnosis and prevention, says Calgary-based clinician scientist Dr. Zahinoor Ismail.

Ismail, an associate professor of psychiatry, neurology and epidemiology at the University of Calgary’s Hotchkiss Brain Institute, believes that the fields of psychiatry and behavioural neurology need to be blended together to create a more effective framework for identifying dementia at earlier stages.

To look at dementia from just a neurological or from just a psychiatric perspective probably isn’t
the whole picture.
— Dr. Zahinoor Ismail

Along with a team of international researchers, Ismail worked to develop criteria for the Mild Behavioural Impairment (MBI) Checklist, which was published
in January 2017 and has been implemented in clinical studies around the world to identify individuals who may be at risk of developing dementia.

“To look at [dementia] from just a neurological or from just a psychiatric perspective probably isn’t the whole picture,” he says. “So this is a way to step back and look at it perhaps more comprehensively.”

Ismail explains that changes in behaviour and personality are
often observed alongside a diagnosis of cognitive impairment. Sometimes, he adds, these changes can even present themselves before cognitive impairment can be detected, as in the case of some of the earliest patients to be diagnosed with Alzheimer’s disease more than a century ago.

“We’re resurrecting that idea and saying, ‘Hey, we should be screening for later-life emergent changes in behaviour and personality,’” Ismail says. “Those [who display such changes] are people who you might then screen more thoroughly.”

The MBI checklist, which has been translated into 14 different languages, assesses a number of behavioural changes that might indicate the need for further testing.

“Historically, people with neuropsychiatric symptoms have been excluded from dementia clinical trials, but in contrast, maybe they are the exact same people who should really be assessed more closely, and enrolled in clinical trials for dementia prevention,” says Ismail.

Changes in drive and motivation, emotional regulation, impulse control, agitation, changes in social cognition or social appropriateness, and changes in strongly held beliefs and perceptions are all criteria screened by the MBI Checklist.

Specialized cognitive neurosciences clinics at the Foothills Hospital and the South Health Campus in Calgary are already using the checklist, and it is also being utilized in a number of longitudinal observational studies. 

While the wide-scale application of this screening tool is still in “early days,” Ismail hopes that one day, the checklist could be routinely completed during primary care visits, preferably by a close family member of a patient experiencing behavioural changes.

“They know the baseline,” he says. “They invariably will describe symptoms long before they ever become apparent in a family doctor’s office.”

He says changes in behaviour, personality and mood emerge in older adults as a “warning sign.”

“What we realize is that other things can happen in advance of this impairment in cognition,” Ismail explains. 

“You can get changes in neurological function, like eye tracking, and hearing, and smell. You can get changes in gait. But those things aren’t really easily measured in a family doctor’s office,” he says. “Cognition alone just isn’t enough to give us the big picture.” [ ]


Quick Peek

The MBI Checklist focuses on five domains:

  1. Interest, motivation and drive

  2. Mood and anxiety symptoms

  3. Control of behaviour

  4. Social graces, tact and empathy

  5. Strongly held beliefs and sensory experiences