Taking the Caregiver Guidelines Off the Shelf: Mobilization Toolkit Presenter’s Name City, Province

Welcome and Introduction -Welcome participants to the presentation. -Provide a brief introduction to yourself and why you are there. This slide should be no more than 2-3 min. About the presenter.

Presentation Overview Welcome From Guidelines to Action What’s it like for caregivers these days? Discussion and Questions Wrap–up Guidelines Overview: The why, what, and how? This let’s the audience know what to expect during the meeting. If you plan on incorporating a specific discussion question you should highlight that now. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit 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. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit Do you know…? What percentage of Canadian adults provide care to a family member, friend or neighbour living with a mental illness? 0.5% 1.6% 4.8% Answer: b) 1.6% 1. What percentage of Canadian adults provides care to a family member, friend or neighbour living with mental illness? a) 0.5% b) 1.6% c) 4.8% ASK: Which do you think is the correct answer? (then reveal the correct one by clicking the mouse – the green answer will appear). About 1.6% of all Canadians – nearly 600,000 people– are caregivers to people living with a mental illness, making mental illness the 4th most likely reason for an individual to be providing care in Canada. (Stats Can 2012). 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

The Data on Family Caregivers in Canada – General 28% of Canadians have provided care to a friend or loved one 45% provide care for more than four years 60% must also juggle the demands of paid work 27% lost income due to caregiving responsibilities 55% felt worried or anxious over caregiving duties (Health Canada, 2002 and Stats Can, 2013) This data is based on a 2012 Stats Can survey and applies to all caregivers broadly. The report showed that 8.1 million Canadians provide care to a chronically ill or disabled family member or loved one. Of those surveyed, approximately 45% had provided care for more than four years, 60% had to juggle the demands of work and caregiving, 27% lost income, and 55% felt worried, anxious or tired from providing care. **The above data is meant to provide an idea of what caregivers in Canada experience. You can simply present the data, expand on it or provide your interpretation of what this means for caregivers. More information can be found at: http://www.statcan.gc.ca/daily-quotidien/130910/dq130910a-eng.htm. ** 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

The Data on Family Caregivers in Canada Mental health problems such as depression, schizophrenia, and bipolar disorder are the leading reason for a parent to provide care to a child (23%) 62% of parents providing care for children are caring for adult children with chronic illness or disability, including mental illness (Health Canada, 2002 and Stats Can, 2013) This data is based on a 2012 Stats Can survey and applies to all caregivers broadly. The report showed that 8.1 million Canadians provide care to a chronically ill or disabled family member or loved one. Of those surveyed, approximately 45% had provided care for more than four years, 60% had to juggle the demands of work and caregiving, 27% lost income, and 55% felt worried, anxious or tired from providing care. **The above data is meant to provide an idea of what caregivers in Canada experience. You can simply present the data, expand on it or provide your interpretation of what this means for caregivers. More information can be found at: http://www.statcan.gc.ca/daily-quotidien/130910/dq130910a-eng.htm. ** 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

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 More likely to sustain an injury while providing care Source: Statistics Canada, 2012 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit 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%) were more likely to experience financial difficulties Sources: Statistics Canada, 2012; Tsimicalis, A., 2010 A 1999 estimate of the dollar value of the contribution of family caregivers, including those caring for someone with a mental illness, was 5 billion/year, which could be worth as much as 12. 3 billion/year today (2008). 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

What’s it like for caregivers these days? Factors that affect a caregiver’s experience: historical and current experience of the person they are caring for own age, health, location employment status gender culture language Caregivers are a very diverse group of people, but they are many, and their contribution is valuable! Things are better than they used to be but there is still a long way to go (can use intro from Guidelines if useful). Experience of caregivers depends on (among other factors): -historical and current experience of the person they are caring for -their own age, health, location -employment status -gender -culture, ethnicity -language 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

What’s it like for caregivers these days? Common caregiver priorities and needs: relative’s quality of life recognition and respect for their caregiving role information and opportunities for building skills recognition of personal needs A caregiver usually needs: -to know that their relative is receiving appropriate care and has access to the services and supports that will maximize their potential for quality of life. -to have their relationships and caregiving roles recognized by mental health service providers and to be meaningfully involved in assessment and treatment planning. -to receive information and timely support from knowledgeable mental health service providers, including in enhancing their coping skills, so they can effectively provide care to their relative. - to have their personal needs outside of their caregiving role recognized and supported to sustain their own health and emotional well-being. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Evolution of the Guidelines The Mental Health Strategy for Canada 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 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

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 Based on the presented data, it’s clear that caregivers make up a significant portion of our population. The Guidelines are intended to advise system planners, policy makers and service providers in planning, implementing and evaluating mental health care services that recognize and address the unique needs of family caregivers. Well supported family caregivers are able to provide better care and support for relatives in their recovery journey, generate savings in the system and enhance the benefits of caregiving. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Guidelines Overview: the “How” Led by members of the former Family Caregiver Advisory Committee Development: literature review, consultations with caregivers, people with lived experience and service providers Iterative process among MHCC staff, academic consultant and Committee. The development of these Guidelines was overseen by a steering committee that included members of the Mental Health Commission of Canada’s Family Caregivers Advisory Committee, other stakeholder representatives and Commission staff. In June and July 2012, focus groups were held in six cities (Victoria, Calgary, Thunder Bay, Toronto, Fredericton and Quebec City) across Canada with family caregivers, adults living with mental illness, service providers and representatives from not-for-profit mental health organizations. Participants met to discuss their own caregiving experiences and share feedback about an early proposed draft of these Guidelines; their feedback is an integral component of the Guidelines and quotations from participants have been included. A literature scan was also performed on Canadian academic journals, grey literature and policy documents, as well as literature from Australia, New Zealand, the United Kingdom and the United States, with relevant national and international examples included in the Guidelines. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

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. These National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses present a comprehensive, principle-based and evidence-informed system of care that supports family caregivers so they can provide the best possible care to adults living with mental illness while maintaining their own well-being. Scope: While the recommendations are applicable to family caregivers of anyone with a mental illness, the focus is on those who care for adults; issues specific to seniors or children and youth are discussed within other documents that are available at http://www.mentalhealthcommission.ca/. This document also does not examine specific issues related to family caregivers of adults with acquired brain injury or living with addictions, but many of the recommendations may be relevant to them 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

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 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

For consideration when planning services Family information needs on accessing services Addressing stigma Diversity of families Cultural competency / safety Challenges of rural and remote families Life course, roles and relationships If you feel that your audience does any of the above bullets well, this is a good chance to highlight their strengths. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Factors to facilitate transformation Families participate in reviewing, planning and evaluating services Increase resources for family caregiver support programs Service provider practice guidelines on working with families Increase community capacity to support families Create dedicated family peer support and coordinator roles Refer family caregivers to caregiver support organizations Research effectiveness of family caregiver support and services Strike a cross-sectoral task force to translate Guidelines into action plan Depending on your audience you may want to remove bullets that are not relevant to their work or add bullets based on the recommendations in the Guidelines that are. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Discussion questions: How could these Guidelines be used in your own work? Below are a list of questions for you to consider asking your audience. These questions should be selected based on your intended outcomes from this meeting. Revisit the planning guide to help you clarify your goals. Here you can incorporate your different tools such as Thought Shower, Mindmapping or Dotmocracy. This is also a good time to look at the case studies together. Questions to consider asking: How do your current policies support the Guidelines? Identify your strengths when it comes to supporting family caregivers? Where do you see room for improvement? Based on the handouts, which recommendations can you envision your organization implementing? (brainstorm what that looks like)? 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit The Way Forward Working to improve supports for family caregivers will take a collaborative effort. How can we work together? Next steps Summarize what was said during the discussion. Help the group to identify what they would like their next steps to be. Make a plan. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit Questions? 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit Thank you! Name, title, email address For more information on the Guidelines, you may also contact MHCC at info@mentalhealthcommission.ca This presentation was based on the Guidelines developed by the Mental Health Commission of Canada but does not necessarily present the views of the MHCC. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit More slides on the history of the Guidelines can be inserted in to the presentation if you think your audience will be interested in this information. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Mental Health Strategy for Canada A Strategy for all people in Canada Built on federal/provincial/territorial initiatives Establishes common priorities Ambitious but practical recommendations for action Adaptable in each jurisdiction Input from thousands of Canadians and from governments across the country In understand where the Guidelines came from, we will briefly go back and look at the Mental Health Strategy for Canada which was released in May 2012. It offers recommendations to improve mental health and well-being throughout Canada. The Strategy was designed to establish common priorities and build on federal/provincial and territorial initiatives. What difference does a Strategy make? Raises the profile of mental health issues Encourages public discussion -helps to reduce stigma. Acts as a blueprint for change, places system change and action on everyone’s agenda. Shows that there can be a role for everyone. 12/11/2018 Taking the Guidelines off the Shelf: Toolkit to Mobilization

Six Strategic Directions Promoting mental health and preventing mental illness and suicide Fostering recovery and upholding rights Providing access to the right services, treatments and supports Reducing disparity and addressing diversity Working with First Nations, Inuit and Métis Mobilizing leadership and fostering collaboration To learn more about the Strategy visit: http://strategy.mentalhealthcommission.ca/ These strategic directions are not in order of priority, but it is not by chance that MHCC began with a focus on promoting mental health and preventing mental illness wherever possible, right across the lifespan. In addition to the 6 strategic directions there are: 27 priorities and 109 recommendations for action Illustrative examples of promising practices with links to MHCC initiatives Funding proposal and an initial set of indicators 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Caregivers and the Strategy The Strategy recognizes that caregivers are: Integral to recovery and well-being Central to planning and facilitating care It recommends that service systems: Seek to learn from caregivers to improve service delivery Encourage caregivers to advocate for their loved ones Calls for better supports, increased access to respite care and more flexible work policies Several of the recommendations for action in the Strategy address the role of caregivers and family members of individuals living with mental health problems and illnesses directly. Throughout the document caregivers are recognized as important participants in the recovery journey of their loved ones and as great advocates for care. But there is still a need to strike a balance between caregivers being included in planning and facilitating care, while still respecting the confidentiality of the individual seeking services. The Strategy also recommends that family caregivers be encouraged to take on more actives roles in governance, accreditation, monitoring and advisory bodies within the service system because of their experience and perspective. Finally, the Strategy calls for enhanced support for families to be able to provide care while meeting their own needs, including increased access to respite care and more flexible work policies. These recommendations set the stage for the work that went into the Guidelines. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit

Principles and Values to Help Guide Policies Individual: engagement, respect, choice and self determination, distinct needs, sustainability. System level: caregiver inclusion, accessibility, diversity, sustainability, collaboration, evidence informed, fairness and equity, recovery focused, mental health promotion. Caregiver policy lens to help plan and design services based on these values. On this slide we see the principles and values at the individual and system levels that underlie and should guide policies and systems that value caregiving. One of the first recommendations of the Guidelines is to design policies and programs that encompass these values. Tools such as the caregiver policy lens can be helpful to planners in adopting a value based approach. The caregiver policy lens was designed as a critical lens for assessing policies and programs affecting caregivers of adults. The principles and values identified on this slide are based on the literature and key informant interviews conducted by the MHCC. They include: family engagement in the persons recovery process, respect and dignity, choice, family caregiver needs – etc. You can read more on P. 11-12 of the Guidelines. 12/11/2018 Taking the Caregiver Guidelines off the Shelf: Mobilization Toolkit