Miles apart, but more similar than we think

Christa Haanstra, Executive Lead, Strategic Communications

In May 2018, I attended the International Conference on Integrated Care in Utrecht, the Netherlands. While I was there, I met with Dutch organizations and professionals who work with family caregivers.

I quickly learned that the approach and infrastructure to support family caregivers in the Netherlands has many parallels to the system in the UK. Like the UK, there is legislation outlining caregivers’ rights. In addition, the caregiver support movement, in both countries, started as a grassroots movement and is supported by many health-related charities. When legislation was introduced, in both jurisdictions, it gave the efforts a notable boost in working towards having supports and services widely-available throughout their country.

The parallels extend even further – the Netherlands also has a national caregiver organization called Mezzo, and the responsibility for creating caregiver programs and supports resides with local townships and municipalities. 

When The Change Foundation started our journey with family caregivers, we drew clear parameters for our work: to improve the identification, recognition and integration of family caregivers within healthcare settings. However, The Foundation knows all too well that caregiver needs extend far beyond the healthcare system.

Our focus is complementary to the work of other organizations such as the Canadian Association of Retired People (CARP) and The Vanier Institute. We monitor and collaborate with these organizations as they advocate for changes to support caregivers in other aspects of their lives, including the financial implications, and the ability to balance their career and work obligations alongside caregiving responsibilities. Slowly but surely, we are seeing positive changes such as the recent legislative changes to employee leave eligibility and tax credits for caregivers.

Although I didn’t find an equivalent of The Change Foundation in the Netherlands, I found the next best thing – The Expertise Centre on Informal Caregiving. The Centre is led by two organizations: Movisie and Vilans.

I met with a representative from each organization, who were also the co-authors of a 2015 Caregiver Action report commissioned by the Netherlands government. The report title In voor Mantelzorg: samen sterker in zorg en ondersteuning – translates to ‘strengthening the collaboration between care organizations and informal caregivers, resulting in a joint contribution to quality care and client support.’

Co-design and common sense underpinned the approach to this report and its recommendations. It was developed through a collaboration of 80 health and social care agencies, who collectively engaged with more than 6,000 caregivers.

The Netherlands faces similar challenges to Ontario in getting healthcare organizations on board to collaborate with and support caregivers. Challenges in points of transition, use of system language instead of plain language, and systems and reward structures that don’t place value on family caregiver interactions by providers. With so many similarities, there’s a lot that we can learn from their progress.

Through their engagement process, they came to a common agreement on the issues and identified eight areas for change and improvement across the full spectrum of health, social and municipal services. The eight priority areas are:

  • Better collaboration
  • Common understanding of collaboration
  • Improving involvement for informal caregivers
  • Better information for clients and informal caregivers
  • Identifying caregiver burnout earlier
  • Removing prohibitive rules and regulations
  • Equipping informal caregivers
  • Use of digital communication and technology

From the beginning, they were clear that they would not use a ‘one size fits all’ methodology. Using decentralized decision-making meant that each organization could choose what area(s) their efforts would focus on and customize supports to meet the specific needs of caregivers within their setting. With a collective understanding of the needs and priorities, each organization took a different approach to programs and implementation and yet they still achieved broad-scale positive change.

For me, this refreshing thinking was inspiring. And the collective impact was clear.

In my opinion, the most impressive initiative were the partnerships with post-secondary institutions. The goal of these partnerships is to inform the curriculum and equip future healthcare providers to integrate family caregivers into their practices, right from the outset of their career. For those of us working to influence large-scale system change, it is clear that professional education and curriculum play a critical role in changing practice and culture within multiple healthcare disciplines. The ability to collaborate and inform changes to the curriculum is much more elusive. I will be watching with interest as the impact of this foundational component of the Netherlands action plan to improve caregiver experiences becomes evident.

The In voor Mantelzorg report is available online (use Chrome translate browser to read an English version), including some of the factsheets and tools:

  • 3-minute burnout assessment tool
  • Tools and factsheets for each sector of health and social care
  • Approach to post-secondary curriculum influence
  • Workbook for Provider Training   
  • Path to Vitality

The Netherlands’ commitment to co-design and approach to identifying, recognizing and supporting family caregivers is inspiring. It offers hope for a better future for caregivers, and reinforces the importance of The Change Foundation’s multi-partner, co-design and iterative approach. It provides important insights and approaches that health and social care providers, administrators, policy makers, caregivers, patients and researchers can build on as we work towards improving supports and experiences for family caregivers in Ontario.

Integrating the caregiver voice: Reflections on the IFIC Conference

Jodeme Goldhar, Executive Lead, Strategy and Innovation

In May 2018, Carole Ann Alloway, a family caregiver, and I partnered to develop and present a keynote address at the International Foundation for Integrated Care (IFIC) annual conference in Utrecht, The Netherlands. A few months after our presentation – Transformation through integration: The Answer is With Patients and Their Families – I asked Carole Ann to reflect on her experience.   


First of all, Carole Ann, it was an honour to have the opportunity to co-present with you in Utrecht. It truly was a collaborative experience. What was your reaction when you were first asked to co-present at the IFIC conference?

Carole Ann:

It was overwhelming at first because there were so many things I wanted to say. But to get the most value for the audience, I realized we had to choose a key focus. With The Change Foundation’s knowledge, background and guidance, we started brainstorming our message — that the caregiver voice must underpin integration — and the best way to get it across. 


We know that health systems around the world see integration as a major opportunity for transformation. But perspectives on how to go about this transformation vary. Can you share how we approached this?

Carole Ann:

Well, from my point of view, and from The Change Foundation’s point of view, patients and caregivers need to be partners every step of the way as this transformation happens.

Our goal for this presentation was to be provocative and inspire people to truly understand that patients and caregivers are the experts on the physical, emotional and spiritual aspects of their lives. It’s important for healthcare professionals, researchers and policymakers to recognize their value, and to work in partnership with them.IFIC slide

We used this idea, together with The Change Foundation’s expertise on integration and system change around the world, to create a storyline. Within this storyline, we thought about how best to build and think about our presentation to address the topic from many different angles: the system, research, policy and everyday practice.

It was a pleasure working as a true collaborator on this presentation with you.  


On that note, we know the importance of working in partnership with caregivers. As a caregiver involved in this project with us, how did you feel about our partnership?

Carole Ann

I felt heard and valued sharing my lived experience. Together, we were able to help get my message across in a way the audience would understand. I didn’t want to just tell my story, I wanted people to leave with a sense of urgency to truly reflect on their own work habits, cultures and see how they could respond to what was possible by including their own patients and caregivers in the decision-making process and as a member of the team.


It was important to us, as we made this presentation, to give the audience a real sense of the caregiver experience. How did you approach this? 

Carole Ann

I didn’t just give a play-by-play of my caregiver experience. I also told the story of what could have been. I imagined my experience as if my husband’s care had been integrated and if the team was focused on what’s most important to me and my husband. I shared my reflections on the problems that could have been avoided, healthcare dollars saved, outcomes that could have been improved, as well as how the experience for my husband and I would have been so much better. I also believe if my journey had played out in this imaginary way, healthcare professionals would have had more job satisfaction.

It was important to me that the audience leave knowing that it isn’t hard to do. The answer is simple and everyone has a role to play in making a difference, and could start tomorrow. 

For more simple ideas that can make a big difference, watch the Caregivers Wishlist videos created by The Change Foundation in partnership with Carole Ann.

The Change Foundation’s role in Ontario’s caregiver organization

Cathy Fooks, President & CEO

Today – on Family Caregiver Day – Premier Kathleen Wynne announced the Ontario Ministry of Health and Long-Term Care’s intention to provide $6.5 million in funding for the creation of a caregiver organization in our province.

This was a key recommendation in the report Expanding Caregiver Support in Ontario, authored by Janet Beed, which was released publicly in March 2018. Janet has been acting as an external advisor to the Ministry of Health and Long-Term Care to examine gaps in supports for caregivers in Ontario over the past year, and will serve as the organization’s inaugural Chair.

According to today’s announcement, the Ontario Caregiver Organization will be a “resource for caregivers that will make it easier for them to access a range of services and information.” The not-for-profit corporation will receive financial support, but be arms-length, from the government.

A website has been set up for the organization, where you can learn more, and follow their progress over the months to come.

The Change Foundation’s role in the new caregiver organization

The Change Foundation has played an important advisory role in shaping this organization and we will continue to support it as it opens in 2018.

We exist to innovate and shape emerging areas in health care. Since 2015, we’ve been doing just that by focusing squarely on the caregiver experience in Ontario, as we laid out in our strategic plan, Out of the Shadows and Into the Circle.

We are honoured to offer our advice and expertise, as it is rooted in the knowledge and insight we’ve gained these last few years listening to, learning from and collaborating with family caregivers. That’s the foundation for our understanding of what changes will make the biggest difference to caregivers.

We look forward to seeing the impact this new organization will have on the lives and experiences of caregivers in Ontario.


KWynne Announcement

Ontario’s first Young Carers Forum

In November 2017, The Change Foundation hosted Ontario’s first Young Carers Forum – bringing together 20 young carers and over 60 professionals, policy makers and researchers to talk about priority actions needed to support young carers in the important role they play in health care, in society and at home.

Throughout the day young carers were asked to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of the young carers, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.

Through the discussions, the following five priority areas for action were identified and voted on by all participants:

  • Increase awareness and understanding of young carers.
  • Work on better ways to identify young carers and link to the education system
  • Build an alliance of young carers organizations
  • Work with the Ontario government to ensure that young carers are included from the outset of the new caregiver organization
  • Influence an inter-ministerial and inter-governmental collaboration to support young carers

Working in partnership with caregivers and health care providers, our goal at The Foundation is to fundamentally change the way the health care system interacts with caregivers, and shine light on the vital but often unrecognized role of family caregivers, including young carers.

Young Carers Forum


Voices of Ontario’s Young Carers

Highlights from Ontario’s First Young Carers Forum

Abbigail’s Story

Ontario young carer Liam answers –
Why is raising awareness about young carers important?

Ontario young carers Amy & David answer –
What do you want other young carers to know?

Ontario young carer Stephane answers –
What advice do you have for other young carers?

Ontario young carer Alissa answers –
How do you cope with being a young carer?

Media Stories:

  • Metro Morning (Emily’s young carer story)
  • Metro Morning (The Foundation’s Christa Haanstra speak to CBC’s Metro Morning about Young Carers and The Foundation’s role)
  • North (Alissa’s young carer Story)


What are the impacts of being a caregiver on a young person?

Pic of Fitsum Areguy

The opinions expressed in this blog post are those of the author and do not necessarily reflect those of The Change Foundation.

Fitsum Areguy, young carer 

When I talk about the impacts of being a young carer, my lived experience sheds light on how complex it is.

I was 10 years old when I became aware of how different my home life was from my peers’. My parents were refugees who fled war in Ethiopia and Eritrea, and they struggled to adjust to life in Canada. Taking care of my family was not a conscious choice at first, it was just the way things were. I got so used to doing things for my parents that it became baked into my identity.

One memory of caring for my parents that I look fondly back at now was when I was in the sixth grade. My father was attending night school to get his GED, and his English classes were difficult. He came home after class one night and slapped a book and papers onto the kitchen table. “Please my son.” He speaks English mixed with Tigrinya when he’s frustrated. “Aytered’anin (I don’t understand). Read this and tell me what is this.”

The book was Hemingway’s The Old Man and the Sea, along with instructions from his instructor for a 2500-word essay. There was no other choice – I was compelled to help him. I enjoyed the reading, and he got a B+ on that paper.

This was the norm for me – translating for my parents, answering phone calls, writing letters, et cetera. All this extra work came at a cost though. At school, I was exhausted from having spent many nights staying up to help my parents with various things. I dozed off in class which got me in a bit of trouble, but I never explained why I was so tired. I didn’t want anyone to know that I was different; I just wanted to fit in. As far as I knew I was the only one among my mostly homogenous, upper-middle-class classmates who had to do these things for their parents.

As I had already accepted the role of a support person in my family, when my mother was diagnosed with a brain tumor it altered my life course. I was in my first year of university when she received the diagnosis, and my caring responsibilities and coping efforts grew to a point that I could not sustain my studies and also be there for her. I eventually dropped out.

I got through this tough time with support from The Young Carers Project of Waterloo region. Their participatory action research project on young carers’ experiences produced some helpful tips on how to support young carers, which you can check out here. They asked the right questions and supported me in the way that I needed to be supported.

Looking back on my life shows me how positive and negative young carer outcomes can be two sides of the same coin. Sometimes, being a young carer can be lonely and isolating, and at other times it can be a life-giving and affirming experience. Despite the hard times, I was proud of what I could do for my family, and I attribute my greatest strengths to my experience as a young carer.


How is a young carer’s role different than the role of an adult caregiver?

One of the main differences is that it is socially accepted for adults to care for others; as a result, young carers are often overlooked and are far more hidden than their adult counterparts.[1] [2]

There are times when the young carer role blurs parental lines, and there is sometimes a lot of shame and guilt within families who have a young person caring for other members, further masking young carers in the home.[3] [4] In addition, young carers have developmental stages and milestones that can be interrupted, sped up, and/or missed as a result of their caregiving.[5] Dedicating time and energy to caring for family members, especially at a younger age, can mean time away from just growing up and forming an identity and agency that isn’t bound to another person.[6]


How do we build awareness and understanding of young carers?

 I agree with three things that Vivian Stamatopoulos[7] identified as vital for the young carer movement in Canada: (1) targeted young carer legislation, (2) greater public awareness of their existence, and (3) more dedicated young carer programs.

These three things are interrelated and impact one another, but the greatest awareness begins with legislation.

Social policy at the provincial and/or federal level that focuses on young carers would be a game-changing development. Our friends across the pond have The Children and Families Act and Care Act, and it opened up a whole world of support and awareness of young carers in the UK.

There are only a handful of programs and groups in Canada that are directly working with, or are focused on mobilizing supports for, young carers. Groups such as the Powerhouse Project – Young Carers Initiative, the Young Carers Program, and the Young Carers Project have been doing this work in Ontario for a long time (see this inventory for a complete list). These groups are trailblazers in our province, and we need to highlight the work they do so that other groups can follow their lead.


Change is needed. Where do we start?

As we heard in the tweetchat (click to view Storify of tweetchat) some good places to start are within schools, healthcare and social services. Integrating supports and fostering partnerships within and across these systems will be crucial for creating lasting change.

To this end, last year The Change Foundation brought many stakeholders together at their Young Carer forum, and a lot of connections were made. I’d like to see more collaborations between young carers, researchers, policy makers, education and health care providers.

I get really excited when I think about the potential for interdisciplinary efforts that use technology to create accessible and user-friendly projects. Phone based-apps, video games, art installations across various mediums – these are approaches that are modern, creative and unique that have the potential to meaningfully engage young carers, their families and the wider public.

Ideally, future progress will be driven by young carers who self-identify and self-advocate. This is much more likely to happen when there are more effective allies in communities who can empower and uplift young carers to use their voices and create change.


Fitsum Areguy is a young carer who was heavily involved in The Change Foundation’s 2017 Young Carers Forum – the first event of its kind in Ontario – and who co-moderated The Change Foundation’s Young Carer Awareness Day tweetchat in 2018. Fitsum is a graduate of the Recreation and Leisure Studies program (Specialization in Therapeutic Recreation) at the University of Waterloo. He is one of ten recipients of the Ontario Medal for Young Volunteers in 2016 for his work with the Young Carers Project. 



Ali, Lilas, Brit Hedman Ahlström, Barbro Krevers, Nils Sjöström, Ingela Skärsäter (2013), “Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study,” Issues in Mental Health Nursing.

Banks, Pauline, Nicola Cogan, Sheila Riddell, Susan Deeley, Malcolm Hill & Kay Tisdall (2002), “Does the covert nature of caring prohibit the development of effective services for young carers?”, British Journal of Guidance & Counselling.

Charles, Grant, and Tim Stainton and Sheila Marshall (2012), Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving, The Vanier Institute of the Family.

Hamilton, Myra Giselle and Elizabeth Adamson (2013), “Bounded agency in young carers’ Lifecourse-stage domains and transitions”, Journal of Youth Studies.

 Moore, Tim, and Morag McArthur (2007), “We’re all in it together: Supporting young carers and their families in Australia,” Health & social care in the community.

Stamatopoulos, Vivian (2015a), “Supporting young carers: A qualitative review of young carer services in Canada,” International Journal of Adolescence and Youth.


[1] Ali et al. (2013).

[2] Banks et al. (2002).

[3] Moore & McArthur (2007).

[4] Smyth, Blaxland and Cass (2011).

[5] Charles et al. (2012).

[6] Hamilton & Adamson (2013).

[7] Stamatopolous (2015a).

Changing CARE for caregivers

Genevieve Obarski, Executive Lead, Program Implementation

Back in 2015, when we first waded into the unknown waters of the caregiver experience, we weren’t sure what we were getting into. But what we did know was that The Change Foundation, as an independent and unbiased organization, was uniquely placed to explore this issue with both caregivers themselves and the providers who intersect with them in Ontario’s health and community care system. So, while the path forward wasn’t exactly clear, we were confident it was the right time and opportunity for us to lead this necessary provincial conversation.

From our first tentative focus groups, through the hundreds of discussions with caregivers and providers in 2016, to the current engagement now being held with caregivers and providers in our Changing CARE teams, I am convinced we chose the right themes and path to advance this work in Ontario.

We kept all the conversations disease and caregiving situation “agnostic,” and we asked people to tell us what would make a better partnership between families and providers in serving those who are cared for in health and community services. We heard the same things back then as we hear now:

  • Caregivers want to be recognized for the important role they play, included in discussions and decisions about their family member and treated as a partner in their care.
  • Caregivers want respectful timely, accessible and inclusive communication.
  • Caregivers want to be asked how they are doing and what the system and its providers can do to facilitate their “work” of being a caregiver.
  • Caregivers want to have easy access to the knowledge, supports and training that are necessary for them to be the best caregivers they can be.

The Change Foundation is promoting the revolutionary idea that it is the job of the health care system to create the conditions and the culture for partnering with family caregivers. This is the experiment we are conducting with the Changing CARE projects we are supporting.

We believe we have found four partnerships that have the three key components to successful improvement: the will, the ideas and the execution of changes.  

The Foundation has the privilege of providing resources to these four groups to support engagement, co-design, and implementation, which we and the Changing CARE teams believe will lead to significant positive changes in the provider-family caregiver partnership and interactions. 

The observation that these themes remain universal in the engagement we have had, and are continuing to have, with caregivers and providers, is proof to me that we chose the right course. I am convinced that by supporting, highlighting, and teaching others about the work that caregivers and providers are doing together in teams in the Changing CARE projects, that we can make a difference in the experience that Ontario’s caregivers and providers have in partnering to support those receiving health care services.  

“You are not alone” – Advice From One Caregiver to Others

Photo of caregiver James Joyce with his son Brendan
From left to right, Terry Sweitzer, Brendan Joyce, James Joyce.

Rebecca Goss, Communications Assistant

Thirteen years ago, when James’s son was in his second year of university, he was diagnosed with bipolar disorder. This thrust James and his wife, Terry Sweitzer, into the roles of family caregivers, joining 3.3 million others in Ontario.

The role of family caregiver – that is, caring for a friend, family member or neighbour – can be stressful. Nearly half of Ontario caregivers report having somewhat high to high levels of stress, with nearly 10 per cent reporting high stress. This stress stems from balancing caregiving with employment or other responsibilities, the declining health of their loved one, managing their own mental health and emotions and more. Others may also be taking care of children at home, while balancing caregiving needs for others in their family.

Over one third of caregivers report that they are tired, anxious, or both. As these feelings build up over time, caregivers can become physically or mentally exhausted to the point of distress, anger, anxiety or depression—known as caregiver burnout.

Since becoming a caregiver, James has become an advocate for caregiver support with the Cornwall & District Family Support Group. Once per month, he runs a support group to bring caregivers together, discuss their experiences, learn from each other and find help if they need it. It’s his way of helping others in the hopes of preventing or delaying burn out.

“The thing I always tell people is if you can’t take care of yourself, you can’t take care of a loved one,” James says.

Self-care can include things like taking a long, leisurely bath or walk, enjoying a hobby, or maintaining friendships, James says, since these often get lost when someone starts caregiving.

Education is also the key to mitigating stress and avoiding burnout, adds James. He helps run a free 12-week course annually with the Cornwall & District Family Support Group to educate family caregivers on mental health. It’s education sessions like this, and a culture that recognizes family caregivers, that led The Change Foundation to support Embrace, a Changing CARE partnership in Cornwall.  

“The more you know about what you’re dealing with, the better you’ll be able to cope,” James says. He adds that it’s best to go to an association that works with the illness you’re trying to cope with, since the internet may not always have accurate information. Many disease-specific charitable organizations have free resources online for caregivers to view and learn from.

If nothing else, James wants to remind caregivers that “despite how you feel, you are not alone. There are groups across the province. There are people willing to talk, listen and help you.”

For those looking for caregiver support groups or education opportunities, there are a number of websites to help get a search started including The Caregiver Exchange and the Foundation’s own efforts to support family caregivers through research and our Caregiver Resource Hub.  



Stories Shared, Voices Heard: Ontario’s Family Caregivers

When we launched our strategic plan Out of the Shadows and Into the Circle, bringing a new focus to the role of family caregivers in the health care system, we wanted to listen and learn from family caregivers as well as frontline health care providers. To do that effectively, we created The Caring Experience project. The Caring Experience was instrumental in allowing The Change Foundation to better understand the experiences and interactions, as well as the common ground, between family caregivers and those working in Ontario’s health and community care sectors.

With the Ontario Caregiver Coalition, the Foundation met with nearly 300 caregivers across Ontario during The Caring Experience through various engagement methods including caregiver workshops, one-on-one interviews, and journey mapping activities. In addition, the Foundation also reached out to caregivers using short online surveys to broaden our reach provincially.

Stories Shared, Voices Heard: Ontario’s Family Caregivers is an in-depth report that captures what caregivers shared during The Caring Experience about their experiences and interactions with Ontario’s health and community care sectors. Most importantly, the report features key quotes directly from caregivers on what they want, need, and expect from the health and community care sectors to make their role easier. Appendices within the report provide an overview of the main engagement methods as well.

The Change Foundation believes this report provides unprecedented context on how caregivers experience Ontario’s health and community care sectors, providing a boon of insight for those working to improve the system. It also builds on the four major themes outlined in the Foundation’s Out of the Shadows and Into the Circle: From Listening and Learning to Action report.

Report and Related Resources


For more information, please contact:

Communications at

Action through policy: Legislation supporting family caregivers

Cayla Baarda

family caregiver legislationOver the last few years, governments around the world have started taking action to improve legislative and policy supports for caregivers. As part of our research and discovery work, The Change Foundation took a closer look at some of the recent changes in legislation and policy worldwide. Although we found promising policy developments in many jurisdictions, there were three recent changes gaining momentum in the U.S., Canada, and Scotland which were the most relevant for our work, which are summarized below.

The United States: Caregiver Advise, Record, Enable (CARE) Act

In 2014, Oklahoma enacted the Caregiver Advise, Record, Enable (C.A.R.E.) Act, an interesting approach to recognizing the caregiver as part of the care team. The Act requires hospitals and rehabilitation facilities to allow patients to designate a caregiver when the patient is admitted, and hospitals must inform the designated caregiver when a patient is being discharged. As part of the discharge process, hospitals must also consult with the caregiver to describe the patient’s aftercare requirements.  Within the past two years, 21 more states have signed the C.A.R.E. Act into law, six states have passed the bill, and four states have introduced the bill into the legislature, signaling strong support for its measures nationwide.

Canada: Enhancing Support for Working Caregivers

In early 2016, the Canadian Federal Government announced a significant expansion of compassionate care benefits from six weeks to 26 weeks. Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill. The policy change signaled an intention to alleviate the financial burden of taking time off work to provide care or support to family and friends.

Shortly after the announcement, Nova Scotia became the first Canadian province to more than double compassionate care leave from eight weeks to 28 weeks. Compassionate care leave is unpaid leave to provide care or support to a gravely ill family member. Several provinces have followed Nova Scotia’s lead, with Manitoba and New Brunswick already implementing 28 week leave, and Saskatchewan expected to extend their policy by early 2017.

Scotland: Supporting Caregivers’ Health and Well-being

As part of the Scottish Government’s vision of healthier and fairer Scotland, Scotland’s Carer’s Act came into force in 2016. Following the momentum of England’s noteworthy Care Act 2014, the Act will formally give caregivers rights in law for the first time in Scotland. The Act includes provisions for local authorities to involve caregivers in the planning of service delivery, create specific support plans for both adult and young carers, and create an information and advice service for local carers to access. As part of the legislation, carers have expanded rights and control over their health care and that of the person they care for.

Though only three examples among many, these policy development help to illustrate the larger momentum shift towards better supporting family caregivers.

The Change Foundation plans build and drive this moment in Ontario through our Changing CARE initiative which will invest in innovative projects designed to improve the experience of caregivers in Ontario. As we do so, we will continue to track developments in in other jurisdictions as they develop new policies, programs, legislation, and supports that recognize and support caregivers.

To read more about legislation, policies, and programs supporting family caregivers, visit The Change Foundation’s Family Caregiver Overview or Caregiver Resource Hub here.

Cayla Baarda is Research Associate in the City of Toronto’s Urban Fellows Program and holds a Masters in Public Policy from the School of Public Policy and Governance at the University of Toronto. She was hired as a Research Assistant at the Foundation during the summer of 2016.

Partnering with family caregivers essential to Changing CARE

Changing CARE is aimed at addressing caregiver communication, assessment, recognition, and education.

Cathy Fooks, President and CEO

In August, we announced details on our new funding initiative, Changing CARE. Since then, we’ve seen an overwhelming response from every corner of the Ontario health care environment. This is evidenced by the nearly 400 participants in our Changing CARE webinars throughout August and September, and the 70 Expressions of Interest submissions we received last week. Furthermore, this response underscores the fact that family caregivers are being increasingly seen as essential health care stakeholders who have a role and need support.

What we found interesting through our engagement work, however, was the common feeling of helplessness from both caregivers and health care providers. Caregivers often said they didn’t know where to go for information and support and health care providers often said they didn’t know where to send them. Changing CARE aims to change this dynamic as well as others.

As a start, we’ve published a number of key reports that are meant to be resources for the field. This includes A Profile of Family Caregivers in Ontario, our Caregiver Resource Hub, and our Stories Shared, Voices Heard reports which outline findings from both our caregiver and health provider consultations gathered during The Caring Experience Project. These resources on our website provide a concrete starting point for anyone looking to improve the family caregiver experience.

It’s well known that caregiver burden is a real issue facing Ontario and that distress levels are rising. This needs to change.

Through our work leading up to Changing CARE, we discovered four broad themes that caregivers experience – challenges related to communication, recognition, assessment, and education.

We’ll be funding up to three projects in support of innovative ideas to improve the caregiver experience. Future system transformation is clearly predicated on families providing support in all aspects of patient care – if we don’t start building system capacity to partner with them now, no one will be well served. Not patients. Not families. Not providers.


Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers.