Queen’s research improving digital home care for dementia patients
A Queen’s researcher is working to help people with cognitive decline benefit from home-monitoring technology.
Technology can play a leading role in helping those with mild cognitive impairment (MCI) or dementia live in their own homes longer – and more comfortably . For example, sensors can be used to monitor physical activity, medication-taking behavior, sleep, and socialization activities.
However, there’s a major challenge to this innovative digital approach: ensuring it is collaborative and respects a patient’s desire for privacy.
“It’s amazing that we are advancing our technological capabilities so quickly, but we need to ensure we make the patient’s perspective the focal point of their treatment plans,” says Dr. Dorothy Kessler, an assistant professor in the School of Rehabilitation Therapy. “Clinicians and researchers sometimes get tunnel vision and focus on solving the specific problem at hand and can lose sight of caring for the patient as a whole person. My team is working to change this.”
Dr. Kessler’s research is evaluating patients’ experiences using Collaborative Aging Research Using Technology (CART) - with the goal of improving compassionate care. The Associated Medical Services (AMS) funded project is a collaboration with Bruyère, a health care facility in Ottawa devoted to the care of elderly and otherwise vulnerable Canadians, and Ohio Health and Science University.
Over 747,000 Canadians are living with mild cognitive impairment (MCI) or dementia. People with MCI can have difficulty with daily activities, affecting their ability to remain safely at home. These difficulties can progress gradually and may not be easily detected during routine care that involves assessment every six to 12 months. Significant decline in functioning can occur before detection and subsequent provision of supports for aging in place.
Providing support services early, when function starts to decline, could delay the need for institutionalization or prevent emergency room visits. That’s where CART home monitoring technologies come in. The CART platform uses sensors throughout the home to continuously track everyday activities: monitoring activity patterns over time. It can thereby detect small changes in activity in real time and be used to trigger provision of supports.
Dr. Kessler is a highly experienced occupational therapist, and her insight as a clinician informs her research work. With her CART study, Dr. Kessler hopes to provide health care providers with the tools necessary to facilitate respectful and truly collaborative partnerships with their clients.
One of the most significant hurdles for patients considering technology like CART is the loss of autonomy and privacy in their day-to-day lives. Although none of the information CART records is visual, patients may struggle to remain comfortable in their living environment with the knowledge that they are under constant evaluation. This is why it is so crucial that researchers and clinicians like Dr. Kessler speak to patients about their unique experiences to develop approaches to cognitive monitoring that involve them in decision-making and seek to preserve both dignity and comfort.
“There is no one size fits all solution when it comes to supporting people with MCI,” says Dr. Kessler.
Unfortunately, the COVID-19 pandemic has significantly impeded Dr. Kessler’s ability to conduct interviews with participants. Despite this, Dr. Kessler has found a silver lining in that having to conduct remote interviews opened the opportunity of speaking to American patients through the Ohio Health and Science University, diversifying her sample population. So far, Dr. Kessler has interviewed six participants and plans to interview another 15 in January.
Once this preliminary stage of her project is complete, the next step is to connect a few of these patients with health care providers and technology developers in a series of working meetings. The goal is to empower the people who create and prescribe home monitoring technologies to do so more compassionately. Following her research, Dr. Kessler plans to devise a framework and toolkit that will guide compassionate care when employing home-monitoring technologies.
“We often diminish our opinion of patients as their cognition declines. It's important to remember these are people who have lived lives and gained wonderful experiences and knowledge along the way,” says Dr. Kessler. “The conversations they have with clinicians absolutely must reflect this.”