Meet two researchers who are aiming to make an impact in the ways we deal with dementia — and in the ways we can prevent it
Dr. Jayna Holroyd-Leduc
What if caregivers could access support, 24/7, with the touch of a button?
Dr. Jayna Holroyd-Leduc is an academic geriatrician at the University of Calgary. She is currently leading a study on CARE, a mobile app designed to help caregivers of persons with dementia. The ongoing study, funded by the Canadian Institutes of Health Research (CIHR) and the University of Calgary, is examining whether the app can decrease caregiver burden and improve self-efficacy. The multi-stakeholder team working on this initiative includes researchers and clinicians from various Canadian universities, along with community stakeholders such as the Alzheimer Society of Alberta and NWT.
CARE combines quick, useful, evidence-informed advice with self-management tools. Initially, Holroyd-Leduc’s study focused on adapting and evaluating online “learning modules” from the World Health Organization, but the study shifted gears when user-feedback suggested that caregivers wanted something more interactive and instantaneous. Holroyd-Leduc learned of Shiftology, a psychology group in Calgary that was developing an app using Cognitive Behavioural Therapy (CBT) tools to support people with mood disorders, and she and her team soon partnered with Shiftology developer Kent Wyrostock to develop CARE.
“We thought it would be interesting if we could provide information that caregivers need at the point of care, for instance if they were dealing with an aggressive episode, and combine it with an application where they could monitor how they were feeling,” Holroyd-Leduc says.
Through the CARE app, users can access real-time strategies for specific caregiving issues, such as sleeping patterns, sexual behaviours or eating. What if someone in your care accuses you of stealing something that is lost? The app provides bulleted suggestions, such as, “Don’t deny stealing. Don’t argue. Consider having multiples of important items.”
The app also tracks a caregiver’s ability to cope. Users rate their “energy” on a scale of one to 10, use word clouds to identify issues such as “aggression” or “wandering,” and then identify the emotions behind those issues, like “I feel afraid” or “I feel happy.” Their input is tracked over time. Consistent low energy or recurring issues might trigger a message: “Here are some resources on respite.”
CARE is currently in a controlled trial, which began last fall and will continue over the next year. Primary and secondary caregivers of people with dementia can submit an application on the CARE website to participate in the evaluation of the mobile app. Users complete confidential online surveys throughout the eight-week trial to determine its effectiveness.
Holroyd-Leduc says supporting this “unofficial health-care system” of caregivers is crucial.
“A lot of caregiver literature and resources tend to focus on their role as a caregiver, and not how caregivers can care for themselves,” she says. “We want to help caregivers care for themselves better, and to cope better with the issues they’re dealing with.”
The work involved in researching Alzheimer’s disease and other types of dementia is incredibly complex and, over the last 20 years, much of the effort has gone into finding a cure or treatment. But several researchers of late, including Dr. G. Peggy McFall, a postdoctoral researcher at the University of Alberta, are changing their approach. Instead of treatment, McFall is researching prevention — what factors predict dementia-related changes in the brain, and what factors promote stability and delay decline.
“Can we see signs earlier on that identify people who might be at risk for Alzheimer’s disease?” asks McFall. “And, if we can identify those signs, can we develop compensatory interventions?”
McFall is using data from the Victoria Longitudinal Study (VLS), an ongoing, large-scale investigation into human aging. The VLS started in the late 1980s and operates in Edmonton and Victoria. It has collected data on roughly 2,700 dedicated participants since its beginning. Participants are between the ages of 55 and 100 and do not initially display evidence of dementia, as the study seeks to understand the aging brain before clinical diagnosis.
The data from the VLS has provided McFall with a picture of how our memory changes over time. One study is based on memory testing — participants are categorized into three specific classes of agers: “stable” agers, “normal” agers and “declining” agers.
McFall has identified 17 markers, or risk factors, that distinguish these groups. The markers range from non-modifiable factors such as sex and age, to modifiable ones such as exercise, social connectivity and education. This has helped McFall determine differences between the “stable” agers, whose memory function starts high and remains high, and the “declining” agers, whose memory function starts low and exhibits a rapid decline over the course of the study.
Are there reliable, predictive factors that identify those who are eventually converting to dementia? The research still has a long way to go, but important signs are emerging.
“We know that physical activity is a very important part of cognition, for instance,” says McFall.
She hopes that, eventually, her research will be used to create a tool kit for general practitioners to identify those at greater risk of dementia, recognize early warning signs, and offer evidence-based preventions that could delay impairment or promote memory stability.
“[Our aim is to] somehow find a way to refine [the research], so it’s inexpensive enough and accurate enough to at least put people on the path of what they need to do to try to prevent [dementia], or keep themselves stable,” she says. [ ]