System Challenges and Policy Options

A number of system challenges for caregivers have already been identified across the health care system. The list of research articles and other documents below show the work that has been done by reviewing current programs and through listening to patients and caregivers. The list also includes suggestions on how best to address these important issues through policy.



Auditor General Ontario.  2017.  Annual Report of the Office of the Auditor General of Ontario – Chapter 3: Community Care Access Centres Home Care Program

Beed, J. 2017. Expanding Caregiver Supports in Ontario. Advice from Janet Beed to the Honourable Eric Hoskins Minister of Health and Long-Term Care.

Dowdell, B. 2016. Feeling at Home: A survey of Canadians on senior careThe Conference Board of Canada.

Gill, A., Kuluski, K., Jaakkimainen, L, Naganathan, G., Upshur, R., & Wodchis, W. 2014. Where do we go from here?: Health system frustrations expressed by patients with multimorbidity, their caregivers and family physicians. Healthcare Policy, 9(4), 73-89.

Health Council of Canada. 2012. Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada?

Health Quality Ontario. 2016. The reality of caring.

International Alliance of Carer Organizations. (2018). Global State of Care Report.

Stonebridge, C., Hermus, G., Edenhoffer, K. 2015. Future Care for Canadian Seniors: A Status Quo ForecastThe Conference Board of Canada.

The Change Foundation. 2011.  Because this is the rainy day: A discussion paper on home care and informal caregiving for seniors with chronic health conditions.

The Change Foundation. 2012. Loud and Clear: Seniors and caregivers speak out about navigating Ontario’s healthcare system. 

Williams, A. P., Peckham, A., Kuluski, K., Montgomery, R., Morton, F., Watkins, J. 2010. Formal and informal care for older persons: Assessing the balance in Ontario. Balance of Care Research Group, Institute of Health Policy, Management, and Evaluation. Toronto, Ontario.

Williams, A.P., Peckham, A., Watkins, J., Warrick, N., Tam, T., Rudoler, D., & Spalding, K. 2014. Caring for caregivers: Facing up to tough challenges. Healthcare Quarterly, 17(3):20-23.



Canadian Human Rights Commission. (2014). A guide to balancing work and caregiving obligations:  Collaborative approaches for a supportive and well-performing workplace.

Clancy, R.L., Fisher, G.G., Daigle, K.L., Henle, C., McCarthy, J., Fruhauf. (2019). Eldercare and Work Among Informal Caregivers: A Multidisciplinary Review and Recommendations for Future Research.

Duxbury,L., & Higgins, C. (2013). Balancing Work, Childcare And Eldercare: A View From The Trenches – Executive Summary. Home Care Ontario.

Stevenson, M. and Duxbury, L. (2016). 2015-2016 Balancing Work, Family, and Caregiving: National Survey Report. Carleton University.

Employment and Social Development Canada. (2015).  When work and caregiving collide: How employers can support their employees who are caregivers.

Family Caregivers’ Network Society. (2013). Toolkit for employers: Resources for supporting family caregivers in the workplace.

Fast, J. (2015). Caregiving for Older Adults with Disabilities: Present Costs, Future Challenges.

Fast, J., Lero, D., DeMarco, R., Ferreira, H., & Eales, J. (2014). Combining care work and paid work: Is it sustainable? Research on Aging, Policy and Practice.

Fast, J., Dosman, D., Lero, D., Lucas, S. 2013. The Intersection of Caregiving and Employment across the Life Course. University of Alberta, Research on Aging, Policies and Practice, Edmonton, AB.

Government of Canada. 2016. Spotlight on Canadians: Results from the General Social Survey Satisfaction with Work-Life Balance: Fact Sheet.

Griggs, T.L., Lance, C.E., Thrasher, G. et al. J Bus Psychol. (2019). Eldercare and the Psychology of Work Behaviour in the 21st Century.



Canadian Hospice Palliative Care Association. 2013. Valuing caregiving and caregivers: Family caregiver in the integrated approach to palliative care.

Carstairs, S., & Keon, W.J. (2009). Canada’s aging population: Seizing the opportunity.   Ottawa: Special Senate Committee on Aging.

Colombo, F., Llena-Nozal, A., Mercier, J., & Tjadens, F. (2011). Policies to support family carers. In Help Wanted?: Providing and Paying for Long-Term Care. OECD Health Policy Studies, OECD Publishing, Paris.

Glover, B. (2018). The Carers’ Covenant: “A new settlement between carers’ and the state”. London, UK: Demos.

International Alliance of Carer Organizations. (2018). Innovative Carer Practices.

Kuluski, K., Kokorelias, K., Peckham, A., Goldhar, J., & Petrie, J. (2019). Twelve principles to support caregiver engagement in health care systems and health research.

McMaster Health Forum. (2014). Improving care and support for unpaid caregivers in Ontario.

OECD. (2011). Help Wanted? Providing and Paying for Longterm Care – Chapter four: Policies to Support family Carers.

Ontario Ministry of Health and Long Term Care. (2009).  Caring about caregivers: Caregiving for the future of Ontario (long range scenario planning supporting caregiving into 2033).

Ontario Ministry of Health and Long Term Care. (2015).  Patients First: A roadmap to strengthen home and community care.  Toronto, ON.

Ontario Ministry of Health and Long Term Care. (2015). Patients First: A proposal to strengthen patient-centred health care in Ontario. Toronto, ON.

Ontario Ministry of Health and Long Term Care. (2016). Patients First: Reporting back on the proposal to strengthen patient-centred health care in Ontario. Toronto, ON.

Premier’s Council on Improving Healthcare and Ending Hallway Medicine. (2019). A Healthy Ontario: Building a Sustainable Healthcare System.

Torjman, S. (2015).  Policies in Support of Caregivers. Caledon Institute of Social Policy.

Torjman, S. (2011). Policy challenges: The caregiver/care receiver relationship. Caledon Institute of Social Policy.

Torjman, S. (2016). Compassionate Care Benefit within Employment Insurance. Caledon Institute of Social Policy.

Vanier Institute. (2016). Public Policy Brief: Compassionate Care Benefits.

Williams A.P., Peckham A., Kuluski K., Lum J., Warrick N., Spalding K., …, Im J. (2015). Caring for Caregivers: Challenging the AssumptionsHealthcarePapers,15(1); 8-21.



Action Canada Task Force. 2013. Who cares about young carers?: Raising awareness for an invisible population.

Alzheimer Society of York Region. May 2017.  A Planning Framework for Improving Supports to Caregivers.

Canadian Cancer Action Network, Canadian Home Care Association, and Carers Canada. 2017. Advancing collective priorities: A Canadian carer strategy.

Canadian Cancer Action Network. 2013. Canada, a caring society: Action table on family caregivers. 

Carers Canada. 2013. A Canadian caregiver strategy: A Canada that recognizes, respects, and supports the integral role of family caregivers in society.

Carers Canada. 2014. A Canadian caregiver strategy: Are we making progress? 

Carers Canada. 2015. Mobilizing Action: Integrated Action Plan. 

Expert Group of Home and Community Care.  2015.  Bringing Care Home.  Report to the Minister of Health and Long-Term Care.

Family Caregivers Advisory Committee and Mental Health Commission of Canada. 2013. National guidelines for a comprehensive service system to support family caregivers of adults with mental health problems and illnesses.

Ministry of Health and Long-term Care. 2016. Developing Ontario’s Dementia Strategy.: A discussion paper

Ministry of Health and Long-Term Care and Ministry of Seniors Affairs. 2017. Aging with Confidence: Ontario’s Action Plan for Seniors.

Ontario Medical Association. 2014. Home care: Recommendations to support physicians and patients as they access home care services.

Public Health Agency of Canada. 2019. A Dementia Strategy for Canada. 

Regroupement des aidants naturels du Québec (RANQ). 2018. Empower and support caregivers, these indispensable allies for a fair province of Quebec.

Senior Friendly Care and Regional Geriatric Program of Toronto. October 2017. The Senior Friendly Care Framework.

Sinha, S. 2014. Caring for unpaid caregivers: Developing an Ontario caregivers’ strategy.


 Note: Links are provided where possible to articles that are accessible to the public. Sources without links are accessible by purchase or through a subscription to an academic journal.


As we wrap up #CaregiverDay in Ontario, we want to say thank you to all the family #caregivers out there who are doing extraordinary work, we see you and we appreciate you! Thank you for all that you do - year round but also during these unprecedented times!