An Assistant Professor in the College of Health Sciences, Faculty of Nursing at the University of Alberta, Hannah leads the Connecting for Quality of Life Across the Lifespan program of research to design, evaluate and disseminate interventions to improve social connectedness and quality of life for people living with dementia and their family and friends.
In this week’s spotlight, Hannah invites us to reflect on how research on social connectedness across fields can inspire and advance knowledge on effective, tailored interventions to increase quality of life according to the perspective of people living with dementia, and their family and friends.
How do you describe your work to people who don’t work in your field?
My research program is called Connecting for Quality of Life Across the Lifespan (or CONNECT-QOL, for short). The CONNECT-QOL program is focused on the design and evaluation of approaches (interventions) to address loneliness experienced by people living with dementia in care homes, and their family and friends.
We know that social connectedness, or feeling cared about and belonging, is a basic human need. Conversely, loneliness causes human suffering, and is associated with poor mental health and reduced quality of life. People who are living with dementia, and their family and friends, are at higher risk of loneliness due to influencing factors like social isolation; lack of social support; exclusion from activities and groups; stigma related to ageing, care home environments, and dementia; and changes to communication and relationships.
I have been adapting different types of interventions to promote social connectedness within this population: a music-based group activity (Music Connects Us, funded by CIHR, the Institute for Continuing Care Education and Research, and the University of Alberta), a virtual visiting program (Connecting Today, funded by the Alzheimer Society Research Program), and a web-based psychoeducational intervention for carers (My Tools for Care-In Care, co-lead Dr. Wendy Duggleby, funded by the Public Health Agency of Canada).
The studies then assess the acceptability, feasibility and effectiveness of these interventions to ensure they can be used in practice with people living with dementia and their family and friends, and that they contain the core elements needed to address loneliness in this population.
Ultimately, the aim of CONNECT-QOL is to produce a suite of effective interventions that are grounded in theory and address the complex ways in which loneliness is experienced by diverse individuals.
What’s one big problem you want to solve through your work?
We lack clear understanding of the various ways that loneliness is produced, experienced, perpetuated and effectively addressed over the course of the dementia illness. I want to identify effective, tailored interventions to address loneliness, and advance knowledge about how these interventions actually achieve their effects to promote social connectedness and quality of life.
What does the word “innovation” mean to you?
Looking at a complex problem from many different angles, and careful exploration of creative, practical solutions to address it. Sometimes innovation emerges from working with an idea over many years and finding something unexpected which helps to propel the work forwards.
What’s been your biggest a-ha moment — in life or work — so far?
In my doctoral work (completed 2015), I identified factors that mattered to quality of life from the perspectives of people living with dementia. Feelings of togetherness in relationships — or ‘social connectedness’ — was a core contributor to quality of life, a finding replicated in many qualitative studies over several decades. After this work, I knew that I had observed something that really mattered to people living with dementia which had not been systematically addressed in intervention research or in practice, and which would require focused attention to make real change.
How do you or your team come up with your best ideas? (Do you have any rituals or habits that trigger your creative spark, for example? What do you do to create space for innovation?)
I cannot help but notice the centrality of relationships to my own quality of life. My experiences of relationships in my own life — as a friend, wife, daughter, granddaughter, sister, mother, colleague, etc. — prompts daily reflection upon what we know (and do not know) about effective, accessible opportunities to promote feelings of social connectedness among people living with dementia in care homes. My values influence the ideas tested in my research studies. What I learn from the research also influences my values.
In the CONNECT-QOL research team, we try to learn from each other. We talk a lot about our observations of what seemed promising, what resonated with our own experiences, and to brainstorm how to address challenges that we face in the research. I am inspired by the analysis that CONNECT-QOL trainees and research assistants complete, and what they uncover by engaging with the data.
I try to read widely — there is so much out there about social connectedness from many fields that can be applied to inspire work with people living with dementia in care homes.
Finally, as I am very much a planner by nature, I block time every morning for writing, thinking, and analysis, to make creating a daily habit.
What’s your favourite thing about working at the U of A?
My favourite thing about working at the U of A is the opportunity to build collaborations with experts in gerontological research. The U of A’s Faculty of Nursing is a major national hub for gerontological research, and I am so grateful to work with wonderful colleagues who have deep and diverse expertise who introduce me to their broader networks.
Do you have a role model at the U of A? How have they influenced you
I have many role models but I would be remiss if I did not specifically discuss how Dr. Wendy Duggleby has influenced me! I co-lead a pragmatic trial with Dr. Duggleby, and she has mentored me every step of the way. She developed the My Tools for Care-In Care intervention, and together we wrote the grant application for funding to the Public Health Agency of Canada to test its effectiveness. She supported me to lead the adaptation of this tool to address loneliness and social support, and evaluate its effects in a large national trial. She has shown me how to work productively in a national team; how to support trainees and offer constructive feedback to help them to develop their own passion and direction; and how to pursue highly rigorous research within an honest, collaborative and relational team.
What’s next for you? Do you have any new projects on the horizon?
There are several projects on the horizon in the CONNECT-QOL program, for which we are currently seeking funding. We plan to complete a pragmatic trial to assess the effects of Connecting Today, a virtual visiting program for use with people living in dementia in long-term care and their family and friends; a feasibility study to assess engagement behaviors and key stakeholders’ perspectives of Music Connects Us, a music-based group activity; and are considering future opportunities to adapt My Tools for Care-In Care for use on new groups of carers, such as people caring for a person living with early onset dementia in a care home.
This conversation has been edited for brevity and clarity.
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About Hannah
Dr. O’Rourke is an Assistant Professor in the College of Health Sciences, Faculty of Nursing at the University of Alberta. She leads the Connecting for Quality of Life Across the Lifespan (CONNECT-QOL) program of research to design, evaluate and disseminate interventions to improve social connectedness and quality of life for people living with dementia and their family and friends. She applies systematic and scoping review methodologies, and conducts mixed methods feasibility studies and clinical trials. Her work aims to promote an understanding of quality of life that reflects what matters according to the perspectives of people living with dementia, and to generate knowledge about feasible, effective interventions that can be implemented to address loneliness and improve mental health and quality of life for people living with dementia, and their family and friends.