Ongoing Projects

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.

PI: 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.

PI: Dr. Lora Appel

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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.

PI: Dr. Matthias Hoben

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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.

PI: 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.

PI: Dr. Hannah Wong, Dr. Tamara Daly and Dr. Liane Ginsburg