Family caregivers have been called the "Invisible Workforce" and the "Backbone of the Healthcare System," yet family caregivers are not recognized in policy nor as partners in care by health and social care providers. The lack of recognition of the family caregiver role was particularly evident during the COVID-19 pandemic, as family caregivers were referred to as 'visitors.' This conversation aims to answer the question, "How do we improve recognition of family caregivers and the importance of the family caregiver role?"
Speaker: Dr. Richard Schulz - Why Should Healthcare Providers have a Role in Supporting Family Caregivers?
Dr. Richard Schulz is a Distinguished Service Professor of Psychiatry, the Director of Gerontology, and the Associate Director of the Aging Institute of UPMC Senior Services at the University of Pittsburgh. This American caregiving scholar also chaired The National Academies of Sciences, Engineering, and Medicine’s landmark study, Families Caring for an Aging America. The report outlined the prevalence and nature of caregiving, as well as its impact on the caregiver’s health, employment, and overall wellbeing; it examined the effectiveness of programs and supports aimed at supporting caregivers, and lastly assessed and recommended policies to address the needs of family caregivers and minimize barriers.
Speaker: Andre Picard - Supporting Family Caregivers: What Needs to Change?
Andre Picard is the Globe and Mails Health Columnist. He is also the author of five best-selling books including his latest Neglected No More: The Urgent Need to Improve the Lives of Canada's Elders in the Wake of a Pandemic. André is an eight-time nominee for the National Newspaper Awards, Canada’s top journalism prize, and past winner of the prestigious Michener Award for Meritorious Public Service Journalism. He was named Canada’s first "Public Health Hero" by the Canadian Public Health Association, as a "Champion of Mental Health" by the Canadian Alliance on Mental Illness and Mental Health and received the Queen Elizabeth II, Diamond Jubilee Medal, for his dedication to improving healthcare.
Amy Coupal is the CEO of the Ontario Caregiver Organization, a non-profit funded by the Ministry of Health that was formed in 2018 to support Ontario's 4 million caregivers. A visionary leader with 15 years of experience in the not-for-profit sector, Amy has extensive experience building organizations from the ground up and is excited to be leading the Ontario Caregiver Organization through its early days of growth.
Speaker: Maggie Keresteci - Healthcare Transformation: Family Caregivers' Role
Maggie Keresteci, Executive Director at Canadian Association for Health Services & Policy Research, is a caregiver to her sibling who lives with a life-altering disease. She is passionate about enhancing health for all, while at the same time pursuing system excellence. Whether in a healthcare non-profit, a matrixed corporation, or a politically-charged government agency, Maggie harnesses the power of collaboration and partnerships to drive change through influence. When it comes to developing policies aimed at improving healthcare quality that move seamlessly to practice and programs, Maggie develops roadmaps that articulate value and build trust.
Family caregivers want empathy, compassion, and respect. Communication and information sharing need to be improved. Family caregivers are looking to be included as partners in care. Assessment of family caregivers' needs, system navigation, and access to resources is needed to help them sustain care and maintain their own wellbeing. Though communication and person-centered care skills are taught in under and post-graduate health workforce training, family caregivers and other stakeholders emphasize that healthcare providers need person-centered education that recognizes the family caregiver role. This webinar aims to answer the question, "How do we educate the health workforce effectively, so family caregivers receive timely and effective support?"
Speaker: Dr. Claire Surr - Best Practices in Designing and Evaluating Healthcare Workforce Education to Support Family Caregivers
Dr. Claire Surr, Professor of Dementia Studies and Director of the Centre for Dementia Research at Leeds Beckett University, led the national United Kingdom study examining the factors associated with effective health and social care workforce training design, delivery, and implementation. As well as being embedded across the United Kingdom in the design and delivery of health and social care providers' dementia education and training, Dr. Surr’s best practices in dementia education findings are being implemented globally. See: Tool to reduce 'variability' in dementia training quality
Speaker: Dr. Rhoda MacRae, Reader, Alzheimer Scotland Centre for Policy and Practice at the University of West Scotland
Rhoda, a dementia educator and researcher, is a core member of the Scottish National Dementia Champions faculty where she takes a lead role in the pedagogical design, educational delivery and the evaluation of the programme. She was coordinator of the Palliare Project, a multi-disciplinary project that designed educational solutions to support advanced dementia care practice across Europe. In Canada, Dr. MacRae was a visiting scholar in Faculty of Nursing, University of Saskatchewan and a popular keynote speaker at the Canadian Institutes of Health Research/Covenant Health Network of Excellence in Seniors’ Health and Wellness 2019 work to validate the Caregiver Centered Care Competency Framework.
Speaker: Dr. Jasneet Parmar - Caregiver-Centered Care Education and Practice
Dr. Jasneet Parmar is a Care of the Elderly Physician and Professor, Department of Family Medicine at the University of Alberta has worked for the Specialized Geriatrics Program since 1992. Jasneet spent more than a decade developing the Decision-Making Capacity Assessment Model Toolkit (DMCA) which is endorsed by Alberta Health Services and Covenant Health and is used in hospitals, medical clinics, nursing homes and supportive living communities across Alberta. Dr. Parmar now leads the Caregiver Centered Care Program of Applied Research & Innovation in Health Services Delivery in Family Caregiving, Caregivercare.ca.
Speaker: Donna Thomson - The Family Engagement in Research McMaster University’s Continuing Education Program
Donna Thomson facilitates two free online courses. These include Caregiving Essentials (for caregivers), and The Family Engagement in Research Certificate of Completion Program (for researchers and families who have an interest in child neuro developmental research). Both are offered through McMaster University Continuing Education. Donna is the co-author of the book titled The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver and the author of The Four Walls of My Freedom. Donna is also a consultant, blogger, and speaker on issues relating to family caregiving, disability, aging, and patient and family advisor on health research and policy.
Family caregivers want to establish meaningful relationships with all health and social care providers and advocate for the uniqueness of the people they care for. Being consulted about the care-receiver’s history, preferences, and care needs, being invited to participate in care, and being provided with regular updates help to develop more positive relationships with healthcare providers AND better care for the Canadian receiving care. While family caregivers want to be respected as team members, the desired level of involvement depends on the caregiver. It is therefore important for healthcare providers to be able to discuss role expectations. This webinar aims to answer the question, "What approach should we be using to build partnerships between healthcare providers and family caregivers?"
Speaker: Dr. Yona Lunsky - Healthcare Providers and Family Caregivers as Partners in Care
Dr. Yona Lunsky is a Senior Scientist and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at CAMH (the Centre for Addiction and Mental Health). She is also a Professor in the Department of Psychiatry at the University of Toronto and director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health. Dr. Lunsky's work focuses on the emotional health of people with developmental disabilities and their families. See: "This is About my Health."
Speaker: Barb Maclean “Strengthening Family Partnerships in the Care Team”
Barb Maclean, Executive Director of Family Caregivers of British Columbia, is the driving force behind what makes the Family Caregivers of British Columbia a leader in supporting and partnering with family caregivers. She learned first-hand what it’s like to juggle work, a young family and caregiving when she supported her family during her mother's fight with cancer. Two innovative ways in which Family Caregivers of British Columbia is working toward family caregiver and health provider partnerships can be read about in Strengthening Family Partnerships in the Care Team and "Circle of Care: Supporting Family Caregivers in BC."
Speaker: Jaime Winkler, Family Caregivers Partnering with Health Providers.
Jaime Winkler is the mom to Neurodiverse twins Bella and Mila. Jaime’s key methodology as a mom and family caregiver is equalitarian, individualized, and family-centered.
Resilience is "the capacity to adapt successfully when faced with adversity." In developing the Caregiver-Centered Care Competency Framework, our stakeholders favored the use of a socio-ecological model of the resilience of building a better system of support around family caregivers so that they can adapt to all of those caregiving challenges along the care trajectory. A socio-ecological model of resilience will address the emotional, informational, and instrumental needs of family caregivers and will assist them as they adapt to the demands of their caregiving role. This webinar aims to answer the question, "What should a“better system” to support family caregivers include? Who needs to be involved?”
Speaker: Dr. Amélie Quesnel-Vallée, Why do we need "a better system" to foster family caregiver resilience? The Structural Burden of Care
Amélie Quesnel-Vallée is a professor with joint appointments in the Departments of Sociology and Epidemiology, Biostatistics, and Occupational Health. She is the Canada Research Chair in Policies and Health Inequalities at McGill University in Montreal, Quebec, Canada. Dr. Quesnel-Vallée will speak to her experience as a caregiver, and will discuss her work: The Structural Burden of Caregiving: Shared Challenges in the United States and Canada and research "Caregiving is like on the job training but nobody has the manual."
Speaker: Nancy Mannix, There is More to Resilience Than Being Told to ”Take Care of Yourself”: The Alberta Family Wellness Resiliency Scale
Nancy Mannix is the Chair and Patron of the Palix Foundation. This private foundation's philanthropy aims are to support improved health and wellness outcomes for all children and families. As resilience is a complex life outcome that is commonly misunderstood, a program of the Palix Foundation, the Alberta Family Wellness Initiative (AFWI) ), has developed a Resilience Scale metaphor. This scale demonstrates how resilience is not simply "pulling yourself up by your bootstraps," but rather, "how to build a better socio-ecological system to support resilience." Health Care providers are encouraged to use this tool to support family caregivers and families by building resilience. Importantly, this resilience is gained by supportive environments rich in serve-and-return interactions and by preventing experiences that may cause toxic stress.
Speaker: Liv Mendelsohn The Canadian Centre for Caregiving Excellence: A Vision for a Better Canadian System
Liv Mendelsohn, MA, MEd, is the executive director of the Canadian Centre for Caregiving Excellence. Over the course of her career, Liv has founded and helmed several organizations in the disability and caregiving space, including the Wagner Green Centre for Accessibility and Inclusion at the Miles Nadal JCC. In addition, she served as the founding artistic director at the Reel Abilities Toronto Film Festival and serves as the chair of the City of Toronto Accessibility Advisory Committee. In 2019 she was recognized as a recipient of the City of Toronto Equity Award and is a senior fellow at Massey College. Liv has been a lifelong caregiver and has the lived experience of disability.
Navigating our often fragmented systems of support and care in Canada can be an arduous task. On their own, many caregivers struggle to find and access services. Family caregivers spend 15%–50% of their time on the structural burden of care, trying to access to needed services, and then to coordinate and manage these services over time. Dr. Laura Funkargues argues that Canadians vastly underestimate the economic and social costs involved — including the stress and frustration generated, and for caregivers, the time spent taking care of themselves and their loved ones, or in paid employment. While more integrated health and community services grounded in the preferences and needs of both frontline service providers, clients, and family caregivers (reduced silos) would be ideal, progress on integration has been slow. This webinar aims to answer the question, “What is needed to help family caregivers navigate our systems of support and care?”
Speaker: Dr. Barb Pesut – NAV-Care TrainingVolunteers to Assist Family Caregivers to Navigate Health and Community/Social Care Systems
Dr. Barb Pesut, Professor, University of British Columbia, is a Tier1 Principal Research Chair in Palliative and End-of-Life Care. She leads Nav-CARE, an intervention in which volunteers, who are trained in navigation, provide services for older persons living at home with chronic illnesses to improve their quality of life.
Speakers: Dr.Anthony Levitt and Sugy Kodeeswaran - The Family Navigation Project at Sunnybrook Health Sciences Centre
Dr. Anthony Levitt, MD, FRCP(C), is Chief of the Hurvitz Brain Sciences Centre and the Medical Director of the Family NavigationProject at Sunnybrook Health Sciences Centre. Sugy Kodeeswaran is the Executive Director of the Family Navigation Project at Sunnybrook. The Family Navigation Project (FNP) is a team of experts that helps teens, young adults and/or their families navigate the system more easily to find and gain access to resources (e.g. service providers and treatment centers).
Speaker: Sonia Hsiung - Canadian Directions in Social Prescribing
Sonia Hsiung is Director at the Canadian Institute for Social Prescribing at Canadian Red Cross. Sonia Managed the successful completion of social prescribing research pilot in Community Health Centres across Ontario. This aims to implement a structured way of connecting clinical care and community-based social supports to address the social determinants of health, with a particular focus on loneliness and social isolation. The asset-based and equity-focused pilot showed promising results in decreased loneliness, improved mental health, and an increased sense of connectedness, purpose, and belonging. Fostered engagement and partnership across diverse health, community, social service, and arts and culture sectors to deepen and scale this work.
The culture and context of health and community care systems to support family caregivers must be improved. Our consultations, and those of other caregiving scholars, found ingrained practices, attitudes, policies, and traditions do not support consideration of the family caregiver's own needs, nor do they enable support provision to family caregivers. Culture is deeply embedded in people’s values, assumptions, behaviors, and attitudes. In essence, culture develops in the context of everyday practice. Helen Bevan (Chief Change Officer in the UK Health System) said that to transform the culture and context of care, we need to change hearts and minds at scale. This webinar aims to answer the question, “What strategies and policies are needed to change the culture and context of care to support family caregivers?”
Speaker: Emily Holzhausen, Policies to support family carers in the UK and Advice for Canadians
Emily Holzhausen is the OBE Director of Policy and Public Affairs Carers UK, and leads on Carers UK policy, parliamentary, research and media work, encompassing many issues relating to caring including employment. She was responsible for Carers UK’s Advice and Information services for 15 years, transforming the service into a wider digital offer. She has worked on two successful Private Members Bills and numerous pieces of legislation which have introduced carer’s rights. She leads Carers Week, one of the UK’s biggest awareness weeks, that involves thousands of local events and established Carers Rights Day now in its 19th year. Research and evidence have been at the heart of her work in order to demonstrate how change and practice can benefit carers. She has undertaken over 40 pieces of original research into carers and caring, most recently with her team delivering Caring Behind Closed Doors, (April 2020) . This is one of the first major pieces of research on carers globally, with Caring behind closed doors: six months on (October 2020).
Speaker: Dr. Susan C. Reinhard, Policy Work to Support American Family Caregivers and Advice for Canadians.
Susan C. Reinhard, RN, PhD, FAAN is senior vice president and director of the AARP Public Policy Institute and chief strategist for both the Center to Champion Nursing in America (CCNA) and family caregiving initiatives. CCNA (an initiative of AARP Foundation), AARP and the Robert Wood Johnson Foundation, are national initiatives to ensure America has the nurses it needs to provide care in the future.
Susan is a nationally recognized expert in health and long-term care policy, with extensive experience in conducting, directing, and translating research to promote policy change. Previously, she served as professor and co-director of Rutgers Center for State Health Policy, directing several national initiatives who aim to help people with disabilities of all ages live in their communities. See: RAISE Family Caregivers Act Initial Report to Congress and Social WOrkers Supporting Family Caregivers. On September 22, 2021, the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council delivered its initial report to Congress .Carol Fancott, “Co-designing policy guidance with and for essential care partners: Moving policy into action”
Speaker: Carol Fancott,“Co-designing policy guidance with and for essential care partners: Moving policy into action”
Carol Fancott, PT, PhD, Director, Patient Engagement and Partnerships Healthcare Excellence Canada has a unique mix of skills and experience in the healthcare system, spanning front-line clinician, educator, academic, leader and caregiver. She seeks to build and strengthen relationships, and engagement and partnership are central to her work. Carol has led the co-development and co-delivery of programs and activities that focus on the needs and priorities of patients, caregivers, and communities. A physical therapist by training, Carol also obtained a PhD at the Institute of Health Policy, Management, and Evaluation at the University of Toronto focused on patient engagement and storytelling for organizational learning and improvement.
Speaker: James Janeiro
James Janeiro is a Policy Director at the Canadian Centre for Caregiving Excellence and is a public policy and advocacy professional with over a decade of experience in politics, policy and government relations. He began his career in the Ontario public service working on disability legislation. He then transitioned to the political policy space and served two successive Ontario ministers of community and social services as a senior policy advisor on social assistance, poverty, and veterans' issues. In 2014, James assumed a new role serving Premier Kathleen Wynne as her social policy advisor. In this position, he was responsible for a diverse array of policy areas, including poverty reduction, housing, the basic Income Pilot, disability issues, autism services and municipal affairs. In 2018, James left the public sector for a role in the not-for-profit sector. He was director of community engagement and policy at Community Living Toronto from 2018 to 2022. In this role, James led an ambitious advocacy agenda focused on housing, income security, and service improvement.
A curated collection of resources for healthcare providers, family caregivers, and beyond.