These two Canadian researchers are improving quality of life for people living with dementia

Dr. Carole Estabrooks

Dr. Carole Estabrooks, professor in the faculty of nursing at the University of Alberta and the scientific director of Translating Research in Elder Care (TREC) program, is passionate about improving the quality of long-term care in Canadian nursing homes with a focus on the four western provinces.

“Nursing homes, I would argue, have probably the most vulnerable citizens in society — even more vulnerable than children, because, in many ways, they often don’t have their advocates anymore,” says Estabrooks.

An increasing number of older adults enter a care facility later than they may have 10 or 20 years ago, and this creates an increasingly complex and dependent population living in long-term care.

“People are coming later and later into nursing homes,” Estabrooks says. “They are coming further along in their journey, their dementia is more severe and other chronic illnesses are taking their toll.”

Adding to that complexity is the fact that many care aides also constitute a vulnerable population. In urban areas, more than half of care aides have immigrated to Canada and speak English as a second language. The workforce is predominantly female and, on average, is older than in other health-care settings. Also, almost 30 per cent of the care aides in Alberta specifically hold more than one job.

“You have this highly vulnerable population of people in nursing homes being looked after by another potentially vulnerable population,” Estabrooks says.

Created in 2007, TREC is an ongoing multidisciplinary, multi-site research program situated in Alberta, B.C. and Manitoba, but with individual studies in a number of provinces and team members from across the world.

The program explores how to improve quality of care and quality of life for long-term care residents, enrich the work life of care aides and enhance efficiency. As part of its research, TREC is involved in multiple projects, including a large observational and longitudinal study, randomized controlled trials, and network studies. It also has a number of advisory committees.

To gain insight into ensuring resident and care-aide well-being, TREC’s longitudinal TREC Measurement System (TMS) has been collecting data on residents, staff, care units and facilities since 2007. In addition to quarterly standardized observations on functional and clinical outcomes for nursing home residents, regular surveys and interviews are carried out with front-line staff to assess their general physical and mental health, as well as the quality of their work life and work environment. The data collected from TMS is being used to continue to understand and improve the long-term care sector, create best strategies and inform policy.

Many front-line staff members have valuable experiential knowledge that is not always utilized to its full potential, which is where TREC’s randomized controlled trials, such as Safer Care for Older Persons (in residential) Environments (SCOPE), can provide a useful framework for support.

To participate in SCOPE, units appoint care aides to lead local improvement teams, and provide them with support as they work with the research team and other local teams over a 12-month period to implement local quality-improvement initiatives, learn about measuring progress, etc. A SCOPE pilot study (phase one of a larger trial), that concluded in February 2017, involved care aides from seven different nursing homes in Manitoba. Participants worked in teams to make improvements in the areas related to residents’ mobility, pain or responsive behaviours of dementia. The pilot study indicated that care home residents benefited from initiatives that encouraged them to move more, and that care aides gained greater confidence in their work.

“We’ve had astonishing success with it,” says Estabrooks. “We observe improvements in empowerment and engagement, and [care aides] start to solve problems that are meaningful to them and the residents.”

Dr. Thomas Hadjistavropoulos

F or Dr. Thomas Hadjistavropoulos, improving the quality of life for people living with dementia has long been a priority — and the key, he says, may lie in more effective management of pain.

Hadjistavropoulos, who is a registered doctoral psychologist and the Research Chair in Aging and Health at the University of Regina, where he is also a professor of psychology, says that when individuals living with severe dementia experience pain, it is often missed or undertreated.

Further complicating the issue, he adds, is the fact many consider the self-report of pain to be the “gold standard” for making decisions about pain management.

“Dementia, when it progresses, leads to a decline in both cognitive and linguistic abilities,” he explains.“ People cannot report the pain, and the signs of pain can be misattributed to other causes, then we have unnecessary suffering.”

Hadjistavropoulos has focused his research primarily on pain assessment, and his research team developed the Pain Assessment Checklist for Seniors With Limited Ability to Communicate (PACSLAC). The specialized assessment tool, which is now in its second version, has been utilized by professional caregivers of older adults living with severe dementia for more than a decade.

“We have shown that when [a pain-assessment tool] is used regularly by staff, pain levels go down in the residents because pain is identified and presumably treated,” he says.

The team also developed several guidelines about the frequency of pain assessment and the timelines of treatment. Assessments should be carried out a minimum of once per week by caregivers, and more frequently if pain is suspected.

Hadjistavropoulos says that while caregivers in long-term care understand the benefits of regular assessments, they have also expressed challenges in carrying them out at the recommended frequency.

“They say, ‘We’d love to do it a minimum of once a week, but we don’t have the resources to do it. We don’t have the nursing staff to do it,’” Hadjistavropoulos says.

The notion that resources can be an obstacle to carrying out regular pain assessments was the inspiration for his current project, an automated pain-detection system.

The plan is that the vision system will be positioned in a care home resident’s room and use an artificial-intelligence system programmed to recognize common behaviours in people who are experiencing severe pain.

Because a person living with severe dementia may not be able to communicate the pain they are experiencing verbally, the vision system will be able to recognize grimaces and other facial expressions associated with pain. It will then alert the nursing station to check on the resident when those behaviours are identified.

Although the idea of using computer vision to identify pain behaviours is not a new one, Hadjistavropoulos says researchers in the past have struggled to create an algorithm that works in less-than-ideal conditions, such as when patients may not be facing the camera directly.

“We wanted something that would work as people go about their daily routines,” he explains, adding that his partner and co-lead on the project, Toronto Rehabilitation Institute scientist Dr. Babak Taati, is making further calibrations to the algorithm so that it is better able to distinguish between facial expressions, such as grimaces or frowning, and the features of older patients, such as wrinkles.

Although the system will involve cameras, it will not record the patients as they go about their regular activities. Instead, it will process the images as they are captured by the camera and will analyze them for signs of pain.

“It will be very similar to a heart rate monitor that keeps track of how often your heart is beating, but does not keep any information about what you were doing while your heart rate was increasing or decreasing,” he says.

The work is supported by the AGE-WELL Network of Centres of Excellence. Hadjistavropoulos hopes that a prototype of the pain- recognition technology will be ready for field testing within the next year.

As part of his work toward improving pain care for seniors with dementia, Hadjistavropoulos has also launched a campaign aimed at sharing evidence-based information about pain assessment. [ ]

More information can be found at seepainmoreclearly.org or on Twitter using the hashtag #SeePainMoreClearly