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Ongoing Projects

Ongoing major research projects led by YU-CARE members include:

Virtual Reality

These projects evaluate Virtual Reality (VR) usability, safety, and clinical effectiveness for people with various health conditions and in different healthcare settings. Examples include people living with dementia, people with epilepsy, and those in the Intensive Care Unit (ICU).

These projects are also studying potential benefits of VR in alleviating hospital staff burnout, as well as, for nursing and allied health professional training.

Principal Investigator: Dr. Lora Appel

prescribingvr.com/about

Imagining Age-Friendly ‘Communities within Communities’: International Promising Practices

Using two focci: understanding equity, aging and care work in international contexts, and identifying international promising practices and policies to support age- equity and age inclusion. This seven- year SSHRC Partnership Grant has four main themes of investigation: Policies and systems; Environments, designs, and technologies; Approaches to aging and care relationships; and Condition and equity. This project builds on the World Health Organization’s (WHO) ‘Age-Friendly Communities global initiative.

Principal Investigator: Dr. Tamara Daly

imagine-aging.ca

Assessing the Impact of DAy programs on individuals living with Dementia and their family/friend Caregivers (AIDA-DemCare): A prospective, cross-provincial cohort study

Most individuals with dementia and their family/friend caregivers want the person in need of care to remain at home for as long as possible. Health systems also want to reduce costly nursing home care. However, doing so safely and well may become challenging with increasing care needs. Day programs aim to maintain or improve older adults’ health and well-being. They also provide respite to caregivers. However, we lack robust, Canadian research on the effects of day programs on older adults living with dementia and their caregivers, especially those of equity-deserving groups with multiple, intersecting vulnerabilities. Partnering with key experts (those in need of care, their caregivers, advocates, day program staff/managers, and health system policymakers) throughout the study, we will address these important knowledge gaps.

Our team has funding to conduct a prospective cohort study in the York Region, Ontario. Here, we ask for funding to extend this work to three heath regions in Western Canada (Calgary, Alberta; Interior Health, British Columbia; Winnipeg, Manitoba). In collaboration with health systems and regional Alzheimer Societies, we will recruit individuals with dementia newly admitted to day programs, and their primary caregivers. We will compare them to a matched group of clients and caregivers in the community, not using day programs. Combining participants’ health administrative data (e.g. time to nursing home admission) with survey data collected by our team over 2 years (e.g., older adults’ and caregivers’ quality of life), we will compare study outcomes between those who do or do not attend day programs. We will also assess how day program characteristics (e.g., size, staffing, ownership, type of programming), and social identities (e.g., ethno-cultural background) are associated with study outcomes. Finally, to further contextualize our data,we will conduct semi-structured interviews and focus groups with key informants.

Principal Investigator: Dr. Matthias Hoben

VR&R: Providing Respite to Caregivers by Managing Behavioural and Psychological Symptoms in People with Dementia Using Immersive VR-Therapy

Caregivers often describe respite as an internal experience where they can recuperate without removing themselves from a situation. Respite should be ongoing, flexible, and easily implemented and controlled by the caregiver. While home-based respite arguably removes barriers to receiving support for persons with disability and frailty (e.g., transportation, financing), it remains poorly understood how to best deliver effective respite programming. This gap in understanding disproportionately affects essential caregivers (mostly women) of people living with dementia (PwD) who experience high levels of burden. There has been a recent increase in interest in the therapeutic use of Virtual Reality (VR) with older adults, with a number of studies suggesting VR’s potential to manage BPSD and promote quality of life.

VR-based interventions can be tolerated and enjoyed by PwD long enough for caregivers to take a short break. However, VR’s potential to provide caregiver respite at-home has not yet been explored. This will be an open-label, pragmatic effectiveness trial including a four-week home-based intervention and two-week follow-up. Following an initial training and observation usability session, PwD will experience immersive VR stimulation, as frequently as they choose. Caregivers will be able to engage in a desired activity at this time, remaining close by to assist only if needed. Outcomes (caregiver respite, burden, wellbeing, resilience) will be evaluated using mixed methods, including researcher observations and standardized pre/post-session questionnaires, semi-structured interviews, and objective metrics of VR usage. This is the first study to explore how different types of virtual reality experiences (solo and social) can be used to achieve much needed respite time for caregivers, as well as reduce apathy, depression and agitation for PwD, and in turn promote well-being and quality of life for both parties.

Principal Investigator: Dr. Lora Appel

Read Y-File article

Adult DAy Programs and their effects on individuals with Dementia and their Caregivers (ADAPT-DemCare): Developing program theories on the how and why

Most individuals with dementia and their family/friend caregivers want to receive care at home for as long as possible. Health systems also want to minimize costly nursing home care. However, when care needs become more complex, this may be difficult. Adult day programs aim to maintain or improve older adults’ health, wellbeing, social, physical and cognitive functioning, and independence. They also provide respite to caregivers and allow them to continue working a paid job. However, studies on the effects of day programs are inconclusive. Some suggest positive effects on individuals with dementia (i.e., fewer nursing home admissions, less acute/primary care use, slower physical/cognitive decline, better mental health), and better health and wellbeing of their caregivers. Other studies suggest no or even negative effects. Therefore, guided by a realist lens and partnering with experts (individuals with dementia, their caregivers and advocates, day program staff and managers, and healthcare policy makers), we will review the literature on adult day programs and develop program theories that explain how and why these settings lead to positive, negative, or no effects on individuals with dementia and their caregivers.

We identified 14 traditional literature reviews (including 329 references published between 1975 and 2021), that have focused on adult day programs. These reviews and studies plus additional searches and expert input will be the basis for our review. From the included references, we will extract narratives that explain how and why day programs do or do not bring about certain outcomes for whom and under what circumstances. These narratives will be synthesized, transformed into hypotheses, and linked and visualized to form program theories. These theories will be tested and further refined in future studies. They will be essential in guiding future research and improvement of day programs.

Principal Investigator: Dr. Matthias Hoben

Read Y-File article

Neurocognitive aging and decision-making

Every decision involves the choice to either exploit prior knowledge, towards a more predictable outcome; or to explore new sources of information, with less certain returns. This tension between exploitation and exploration is pervasive in everyday life. Do we return to the same vacation rental again next summer, or take that overseas trip? Do we watch our favourite cable news outlet or seek an alternative perspective? Do we rely on stereotypes or actively engage with unfamiliar others? We have shown that in young adults, decisions to explore versus exploit engage discrete brain regions. We have also hypothesized that an exploitation-bias emerges in later life, attributable to normal age-related brain and associated cognitive changes. Here we will directly test this exploitation-bias hypothesis using a series of decision-making tasks, combined with advanced structural and functional brain imaging, and blood-based biomarkers of Alzheimer’s disease pathology. If our hypotheses are supported, the studies proposed here will provide the first evidence that this fundamental aspect of decision-making, arguably the starting point of all goal-directed thought and action, differs between younger and older adults. These discoveries will enhance our understanding of decision-making biases in later life, ultimately informing surveillance and intervention strategies to optimize function and sustain functional independence in older adulthood.

Principal Investigator: Dr. Gary Turner

Retaining and Attracting Workers in Long-Term Care Homes: How System Dynamics Can Help

The COVID-19 pandemic has made clear the dire need to address underlying long-term care (LTC) workforce and workplace issues that affect resident quality of care and quality of life. These issues include insufficient funding, under-staffing, poor working conditions, complacency towards overburdened and undervalued staff, and lack of regulatory enforcement. These issues also contribute to poor job satisfaction among workers. In recent years, there have been policy changes to improve workforce and workplace conditions. But, some of these ‘fixes’ were later shown to be ineffective or even made the problem worse. These ‘fixes that fail’ are not an uncommon occurrence in complex systems like healthcare. The interconnectedness of factors, the nonlinearity of relationships (can’t draw a straight line between two variables), the feedback processes created in response to policy changes, and delayed reactions all make for a complex system that common quantitative tools used in policy design and evaluation, such as spreadsheet models and regression analysis, have difficulty handling. The proposed research uses novel engineering approaches, including group model building, to create a dynamic model of LTC job satisfaction.

Our proposed model relies on quantitative and qualitative data available only from LTC homes. We also rely on the expertise of personal support workers to help specify causal relationships between variables. We will test how well the model replicates historical data from a LTC home. We will then use the model to test ‘what if’ policy scenarios. Policy makers can graphically see how outcomes, like job satisfaction, might respond over time to hypothetical policies. They can also trace the causal pathway between policy and outcome to better understand which variables have most impact. While real world interventions are needed, the proposed research can be a first step to designing and improving the LTC system.

Principal Investigators: Dr. Hannah Wong, Dr. Tamara Daly and Dr. Liane Ginsburg

Exploring Challenges in Identifying homebound Black older adults and understanding what strategies work: a comprehensive scoping review and qualitative case study in the Greater Toronto Area

Older adults who are homebound (HB) tend to stay at home for long periods (like one month), which can lead to declines in physical, mental, social, and emotional well-being. Factors like financial constraints, health issues, disabilities, and the support needed to go out or maintain social ties contribute to homebound status in older adults. These challenges are more common among black older adults due to differences in social and environmental conditions influenced by factors such as residential location, zoning rules, and land-use policies.

In this project, our goals are to: 

a. Collect information on how, where, and when to find homebound Black older adults in the Greater Toronto Area (GTA) by working with various groups like Black individuals (older adults and family members), mail carriers in the Black community, community health and social care workers, and home meal delivery workers. – Through Interviews

b. Work together to come up with culturally sensitive ways to locate homebound Black older adults, talk about difficulties, and suggest solutions. – Through A full-Day Stakeholders Meeting

SSRCH Insight Development project and Black Seed Grant
July 2024 – June 2026

Principal Investigator: Dr. Michael Kalu

Bridging Mobility Gaps: Co-designing Culturally Appropriate Mobility AI-Powered Wearable (CAMAiW) Tool (prototypes) for Black, Indigenous, and People of Color (BIPOC) older adults

Wearable devices, like fitness trackers and watches, are helpful for older adults to move better. These devices check how well older adults move by looking at speed, distance, location and many other things. Our research shows that no tool combines all these things and considers people’s culture. 

Our team is creating a unique tool called Culturally Appropriate Mobility AI-Powered Wearable Tool (CAMAiW) for older adults (55+) from Black, Indigenous, and People of Color (BIPOC) communities in three steps. CAMAiW will be a band with features like speed, distance, and how muscles work—all in one device.

First, we will create a group called the advisory committee. This group will have three older adults and three family members from each group – Black, Indigenous, and People of Color. They will work with researchers to guide the project, recruit people, and make decisions. We will interview 15 older adults and 15 family members from BIOPC communities to hear what they want in CAMAiW and where they would like to wear it. Based on these interviews, we will make the first CAMAiW prototype.  

Second, we will bring the advisory committee and researchers, healthcare workers, and technology experts to a full-day meeting. We will present our interview results and the first CAMAiW version. The older adults in attendance will use the CAMAiW and give us feedback to make the second version.  

Third, the 15 BIPOC older adults will use CAMAiW for two months. We will collect data on how they move, where they go, their walking speed, and muscle activity. Then, they will share their thoughts in interviews or group talks. We will use this data and feedback to improve CAMAiW for the third version, apply for a bigger grant to make many CAMAiW, and test them.

Connected Minds Seed Grant
March 2024 – March 2026

Principal Investigator: Dr. Michael Kalu

Empowering Health Equity Through Prevention and Self-Management: Co-Designing Culturally Tailored Pre-Clinical & Diabetes Education for Black Older Adults in Peel

Diabetes is more prevalent in black population due to genetic dispositions, lifestyle factors, socio-economic disparities and limited access to healthcare. To date, strategies that have been used to prevent, and help older adults with diabetes with self-management have commonly used a European-centric approach “one-size-fits-all” approach, that is proven ineffective when it comes to education. It is of no surprise that uptake of these strategies have been low in ethnically diverse population, including Blacks, highlighting the need to co-design culturally-tailored self-management strategies to prevent or manage diabetes among black older adults.

We have already formed an advisory committee team (n=8) that include 3 researchers, 1 clinician, 2 community care organization for diabetic care in black community in peel region, 2 black older adults living with diabetes and preclinical diabetes, and a family caregiver. This committee will guide the study process including co-creation process and participates in all aspect of the project. We hope to achieve this study’s objectives in three phases. In phase 1, in-depth interviews will be utilized to capture participants’ lived experiences with diabetes self-management. In the second phase, we will host a co-design workshop with older adults from the target population to define the components of the culturally-tailored self-management intervention based on the interview findings. At the end of this phase 2, we will have a co-designed culturally-tailored self-management intervention. In phase 3, we will identify implementation facilitators and challenges. Reflexive thematic analysis is used to analyze focus group data. Additionally, the study employs sociocultural theoretical frameworks to guide data collection and analysis, examining how cultural and social factors influence participants’ experiences and intervention needs. Community engagement is central to the study, with an advisory committee comprising diverse stakeholders, including older adults, caregivers, and community leaders. By amplifying the voices of underrepresented groups and employing culturally-tailored research approaches, this study seeks to reduce diabetes disparities and improve health outcomes among Black older adults in Peel Region.

The Novo Nordisk Network for Healthy Populations
2024 Network Catalyst Grant

NPA: Dr. Kristina Kokorelias & Dr. Michael Kalu