1. Family Caregiver Guidelines: Taking the Guidelines Off the Shelf Ella Amir, PhD, MBA June 25, 2015

2. / 2 @mhcc_ #FCguidelines #Caregiving A Family Caregiver Family caregivers provide care and assistance for spouses, children, parents, extended family members and friends who are in need of support because of age, disabling medical conditions, chronic injury, long term illness or disability. Source: Canadian Caregiver Coalition

3. / 3 @mhcc_ #FCguidelines #Caregiving Scope Over 8 million caregivers in Canada and growing - Age related – 28% - Cancer – 11% - Cardio-vascular – 9% - Mental illness – 7% Majority (44%) aged 45 to 64, 54% women 39% caring for their parents, 9% for parents-in-law, 8% for spouses and 5% for children 60% are working (=35% of the workforce) Source: Statistics Canada, 2012; Canadians 15+ who provided care to a family member or friend with a long-term health condition, disability or aging needs in 2012

4. / 4 @mhcc_ #FCguidelines #Caregiving Not If but When Smaller families and more dispersed More women in the formal workforce Marriage and childbearing later Retirement delayed Aging population Increased life expectancy, increased rate of disability Human resource issues in the paid sector

5. / 5 @mhcc_ #FCguidelines #Caregiving Scale of Contribution Caregivers: Contribute up to half of the overall costs of home care Provide >$5 billion/year in unpaid care Economic contribution was estimated at >$25 billion for 2009 Enable individuals to remain at home longer; support the services provided in facilities Sources: Fast et al., 2011; Chappell et al., 2004; Hollander et al., 2009; CHPCA The Way Forward, 2013

6. / 6 @mhcc_ #FCguidelines #Caregiving Intensity More time spent caring for ill or disabled children and spouses 17% of female caregivers devoted 20+ hours/week compared with 11% of men Hours per week

7. / 7 @mhcc_ #FCguidelines #Caregiving Impact: Psychological and Physical Impacts greatest for caregivers of children and spouses 51% of caregivers of children and 46% of spouses reported at least five symptoms of psychological distress This compares with 30% of those caring for their parents and 8% caring for a grandparent Also more likely to sustain an injury while providing care Source: Statistics Canada, 2012

8. / 8 @mhcc_ #FCguidelines #Caregiving Impact: Financial One-in-five caregivers (19%) received financial support in 2012; most common sources were family and friends (12%), government programs (7%) and federal tax credit (5%) Caregivers of children (28%), spouses (20%) and parents (7%) were more likely to experience financial difficulties Sources: Statistics Canada, 2012; Tsimicalis, A., 2010

9. / 9 @mhcc_ #FCguidelines #Caregiving Impact: Employment 60% of caregivers are employed and most work full time Over the course of a year: - 22% took one or more months off work/year - 41% used personal savings while providing care Saskatchewan, Quebec and federally regulated industries offer job protection for leaves of more than 12 days Source: The Financial Hardship of Cancer in Canada: A Call for Action, CCAN/CCS (MB divisions), 2012 (statistics from Health Care in Canada Survey, 2007)

10. / 10 @mhcc_ #FCguidelines #Caregiving Different Caregivers, Different Burdens Dementia: at least 46 hours/week assisting with activities of daily living; high levels of depression Mental illness: more likely to assume long-term, often life- long, caregiving responsibilities; added stigma contributes to caregiving challenges• Sources: Schultz et al., 2003; Veltman et al., 2002

11. / 11 @mhcc_ #FCguidelines #Caregiving Common Hardships Caregivers ‘collateral casualties’ of illness Their physical, mental, emotional and financial health often compromised Well supported caregivers are likely to provide better care and generate savings in the system Source: National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses, MHCC, 2013

12. / 12 @mhcc_ #FCguidelines #Caregiving The Rewards of Caregiving Proper supports can do more than minimize risks; they can enhance the rewards associated with caregiving

13. / 13 @mhcc_ #FCguidelines #Caregiving Evolution of the Guidelines Canada’s Mental Health Strategy called for better supports, increased access to respite care and more flexible work policies for Caregivers It recognized the role of caregivers in facilitating recovery, and their valuable input to care planning The Family Caregivers Advisory Committee (FCAC) was created to provide advice on caregiving-related issues across all areas of the Mental Health Commission’s work The development of the Guidelines was initiated by the FCAC, as a blueprint for caregiver support services across the country

14. / 14 @mhcc_ #FCguidelines #Caregiving Guidelines Overview: the “Why” (Purpose) Guide system planners, policy makers and service providers For planning, implementing and evaluating mental health care services Recognize and address the unique and urgent needs of family caregivers

15. / 15 @mhcc_ #FCguidelines #Caregiving Guidelines Overview: the “What” Released in 2013, the Guidelines present a vision and blueprint for a comprehensive, principle-based, evidence-informed system of care that supports family caregivers to provide the best possible care to adults living with mental illness while maintaining their own well-being.

16. / 16 @mhcc_ #FCguidelines #Caregiving Led by members of the former Family Caregiver Advisory Committee Development: literature review, consultations with caregivers, people with lived experience & service providers Iterative process among MHCC staff, academic consultant & Committee. Guidelines Overview: the “How”

17. / 17 @mhcc_ #FCguidelines #Caregiving 41 recommendations in 5 categories Integrating Family Support into Mental Health Services Training and Support for Mental Health Service Providers Government and Policy Intersectoral Partnerships Public Awareness

18. / 18 @mhcc_ #FCguidelines #Caregiving Taking the Guidelines Off the Shelf: A User’s Toolkit Resource to support uptake and implementation of the Guidelines Aimed at facilitating the process of uptake and implementation Designed for users of all backgrounds Launched June 2015, available at mentalhealthcommission.ca

19. / 19 @mhcc_ #FCguidelines #Caregiving Toolkit Outline Introduction to the Issue Planning Guide Case Studies PowerPoint Presentations Supporting Resources

20. / 20 @mhcc_ #FCguidelines #Caregiving Thank you Contact: ellaamir@amiquebec.org www.amiquebec.org Visit: www.mentalhealthcommission.cawww.mentalhealthcommission.ca