Leading Multi‐level Change to Build a Better System to Support Family Caregivers
Jasneet K Parmar, Sharon Dorothy Anderson, Cheryl Pollard, Lesley Charles, Elisabeth Drance, Jamie Penner, Michelle Lobchuk, Laurie Carforio, Myles Leslie, Tanya L'Hereux, Gwen McGhan, Arlene Huhn, Johnna Lowther, Cecelia Marion, Glenda Tarnowski, Carolyn Weir, Denise Melenberg, Charlotte Pooler- Psychiatry and Mental health
- Cellular and Molecular Neuroscience
- Geriatrics and Gerontology
- Neurology (clinical)
- Developmental Neuroscience
- Health Policy
- Epidemiology
Abstract
Background
Worldwide the care economy is in crisis.[1] The care economy includes both paid and unpaid services provided to populations who are unable to independently support themselves. Family caregivers (FCGs) make up the largest proportion of the care workforce, providing over 90% of care for people with dementia,[2 3] yet they remain marginalized in the existing healthcare systems.[4] While some caregiving scholars call for education to enhance the competencies of health and social care providers to partner effectively with caregivers,[3 4] other stakeholders advocate for broader systemic and policy change.
Objectives
Report on how an academic‐community partnership co‐design group focused on educating about person‐centered supports for FCGs is advocating for systemic change.
Project description
Advocacy is a critical population health strategy that emphasizes collective action to effect systemic change. The essential elements of advocacy includes: clear policy goals, solid evidence‐base, values linked to equity, broad coalition support, framing in mass media, and use of policy for change.[5]
Methods
Drawing on learning health systems and collective impact approaches, we are weaving together the actions of FCGs, researchers, health and social care providers, leaders, and management to build a No Wrong Door, seamless health & social care support system to enable FCGs to maintain their wellbeing & sustain care.
Results
Our goal is for formal recognition of the FCG role within health and social care policy. Broad consultations with stakeholders, then co‐design of the Caregiver‐Centered Care education built a robust collaborative of Caregiver Champions. While educating the health workforce is a population health approach to address known gaps in supporting and working with FCGs across the care trajectory, [3 4 6] such education is also developing FCG champions who can advocate across settings and communities. Within Alberta, this collective voice has resulted in recognition of FCGs in the new Continuing Care Act, Bill 11.
Discussion
An integrated FCG system is still a work in progress. Many FCGs do not connect with services they need until they are in a crisis.
Conclusion
Now we are working on strategy mapping to shift the collective focus from reactive problem solving to co‐creating the future.