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)


Raising awareness for young carers in Ontario

Catherine Monk-Saigal, Program and Communications Associate

When we hosted Ontario’s first ever young carers forum in late November, 2017, we shined a long overdue spotlight on Ontario’s young carers. We asked the young carers present—a group that is too often overlooked— to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of them, 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.

We asked them what action was needed around awareness, identification of young carers, advocacy, and cultural considerations. And what do we need to do to make change happen?

Throughout the day, the most pressing issue became clear: there is a profound and universal lack of understanding and awareness around the role of young carers.

And this lack of understanding is not system agnostic. Young carers experience it throughout the healthcare and education systems. Often, this lack of understanding and awareness translates into stigma and fear. 

What’s surprising about this? And how do we tackle it?

There are very few of us who will never wear the caregiver hat. However, for young carers, this hat is worn at a much earlier age than most.

There is an underlying fear among many young carers about the stigma and misunderstanding of their role. The young carers at the Forum said that often, friends and schoolmates have a hard time understanding that their caregiving role is not a choice–that they have a duty and a responsibility that many of their peers simply cannot understand or relate to. This is largely due to this lack of understanding.

To combat the issue of awareness, one suggestion from the Young Carers Forum was that we celebrate Young Carers Awareness Day on January 25, 2018, like they do in the UK. So that’s exactly what we are doing: a simple social media blitz that we hope will contribute to the growing awareness throughout the province.

We hope we won’t be alone in this. We want you to join the conversation we’re helping to spark online.  

Follow #YCAD on Twitter throughout the month and join the conversation on January 25th at 4 p.m., as we host a tweetchat on young carer awareness co-moderated by Fitsum Areguy, an Ontario Young Carer (see below for more information on the tweetchat).

As we work through our “next steps” as an organization, it is very clear just how valuable and meaningful the act of coming together with a common experience was for these incredible young people. We just need to listen to and read the comments from young carers to realize how important this is.

One young carer said: “This was life-changing. I’ve never talked about my experience before. It’s always about my sister.” Another stated: “I feel like I have made a big influence on the future of young carers and no longer feel alone in my situation.”

We’ve often tweeted and blogged about the lack of supports available to Ontario’s young carers. We are now moving forward with the first step to increase awareness and understanding in the hopes that this will lead to better and more widely accessible supports.

 YCAD tweetchat info

About the tweetchat:

We’re pleased to be hosting our first-ever tweetchat at 4 p.m. EST on Thursday, January 25, 2018—Young Carer Awareness Day.

Here are the questions we’ll be asking:

  1. What are the impacts of being a caregiver on a young person?
  2. How is a young carer’s role different than the role of an adult caregiver?
  3. How do we build awareness and understanding of young carers?
  4. Change is needed. Where do we start?

The tweetchat will be co-moderated by young carer Fitsum Areguy and Christa Haanstra, The Change Foundation’s Executive Lead, Young Carers.

Follow #YCAD, as well as @TheChangeFdn, @fitsumareguy and @C_Hanstra to participate. 

Click to download our Young Carers Awareness Day toolkit 

Click to view full Storify of YCAD tweetchat

This needs to spread like wildfire: A path forward for young carers in Ontario

Christa Haanstra, Executive Lead, Strategic Communications and Young Carers

“As a young caregiver, you often feel like you’re on your own.”

Those are Emily’s words, but they may as well have been spoken by any of the 20 other young carers we had in the room at our recent Young Carers Forum, the first time in Ontario that young carers, researchers and policy makers were brought together to start planning a way forward for young carers.

As the caregiver conversation gains momentum in Ontario, it’s important for us to not allow our province’s half a million young carers to be left behind. Too often, this sub-population of family caregivers – which has its own issues and needs related to schooling and age and just being a kid – is forgotten.

“No one should ever have to make the choice between their family and their future,” said another young carer at the forum. He’s right—we’re asking too much of young carers without giving them anything in return. 

The Forum was an opportunity to start changing that.

We wanted to hear directly from young carers, and we most certainly did. In fact, I think we all learned something valuable that day: Don’t underestimate young carers because of their age. These children and youth are wise beyond their years, and they will be the change they want to see in the world. We just need to listen.

And we did, and it was a privilege to hear these mature and articulate young carers tell their stories, and it was a privilege to hear their ideas for change. Theirs are stories that need to be told, and theirs are ideas that need to be implemented.

We can’t be cynical about this. We need to start with the knowledge that we weren’t wasting our time at the Forum. There are too many people listening—Ontario’s Premier Kathleen Wynne told us as much in a welcome video and Ontario’s Patient Ombudsman Christine Elliott attended the entire Forum, and even spent her lunch hour with the 20 young carers, hearing their stories in more detail. There are too many young carers who shared their experiences and who demand to be heard.

It’s time for change.

But what should that change look like? Here’s what we heard from the young carers at the forum:

  • We need to build awareness that young carers are everywhere. They should be recognized and valued. This is where we need to start.
  • We need more supports for young carers in the worlds of education, health care and social services, and they need to be available, reliable and consistent. In the words of young carer Emily, “don’t make me go find them.”
  • We need to create safe places for young carers, but we need to think about how to create these places and where. We need to realize we can’t just wave a magic wand and make something “safe.”
  • We need more programs for young carers. We heard from some of the programs that already exist in Ontario at the forum, and they’re mostly organizations with small budgets and large results.
  • Young carers need more resources. And by that, I mean money. Health care spending is directed at current priorities. We need to all work together to make young carers a provincial and national priority.
  • Collaboration is crucial here—young carer issues cross a variety of sectors: education, health care, social services, community care. We need an integrated approach. This will be a challenge because that’s not how government is used to functioning.

How do we get all this done? For me, that means listening to the words of 14-year old Abbigail, and her advice to young carers:

  • Don’t be afraid of telling people about your life
  • Talk to people you trust
  • Do things you normally enjoy to keep your self-esteem up
  • Stay true to yourself
  • Don’t let others bring you down

Let’s start there, and let’s keep moving this forward. We have a job to do to make young carers a priority now – and we need to grab some attention. So let’s go. This is just the beginning.

To quote a speaker at the forum: “This needs to spread like wildfire.”

Making Privacy and Consent Rules Work for Family Caregivers

In 2015-16, we engaged with family caregivers, and health and community care providers across Ontario through our Caring Experience initiative, to understand the breadth and depth of caregiving in Ontario from both perspectives.

Family caregivers told us:

  • They want more formal recognition of, and respect for, their caregiving role, and in some cases, they want to be part of a circle of care.
  • They are concerned that they can’t access the information they need to support the person they are caring for.
  • That providers often told them that they couldn’t share health information for privacy reasons.

We also engaged with health care providers to understand what got in the way of their efforts to work effectively with family caregivers. These providers told us:

  • They were uncertain about privacy requirements.
  • They were unclear whether they had the legal right to speak with caregivers to collect personal health information.
  • They weren’t sure whether or when they are allowed to share personal health information with family caregivers.

It was clear that both caregivers and providers could benefit from a resource that would set the record straight about how Ontario’s privacy and consent rules apply to them. In this report, The Change Foundation set out to address these concerns by:

  • Explaining the legal framework that applies to caregivers and providers under Ontario’s health privacy legislation—the Personal Health Information Protection Act, 2004 (PHIPA);
  • Explaining the consent requirements outlined in the Health Care Consent Act, 1996 (HCCA);
  • Summarizing what caregivers need to know about the legal frameworks in order to get the information they are entitled to in order to serve and support patients, as well as providers’ legal responsibilities about consent and disclosure; and
  • Describing how some common scenarios play out under Ontario’s privacy and consent legislation.


Report and Related Resources


Report: Making Privacy and Consent Rules Work for Family Caregivers (pdf)

Privacy and Consent for Caregivers: What Healthcare Providers Need to Know (pdf)

Privacy and Consent for Caregivers: What Family Caregivers Need to Know (pdf)

Making Privacy and Consent Rules Work for Family Caregivers – webinar slides (pdf)

Questions & Answers on Patient Privacy and Consent in The Addiction and Mental Health System in Ontario (pdf)

Shortly after their project focused webinar in late Fall 2017, our Embrace Changing CARE team acknowledged the need for an additional knowledge product tailored specifically to the questions that would help both caregivers and health care providers working within Ontario’s mental health and addictions system.

Webinar: Making Privacy and Consent Rules Work for Family Caregivers Webinar – March 8th, 2018

 *all questions received during the webinar have been answered either in the webinar recording or the slide deck available for download above*

For more information, please contact:

Communications at

Unearthing the organizations that support young carers

Christal Huang, Research Intern

In the spring of 2017, I joined The Change Foundation as an intern. Although I had always had a passion for healthcare, and I had worked in the field before, I had never been involved in work focused on the experience of family caregivers.

Upon my arrival, I was tasked with creating a comprehensive list of the programs and services that exist in Ontario that support young carers. This inventory, which we hope will help guide young carers, their families and healthcare providers, is nearly complete, and we hope to have it released in November. 

Here are some of the things I learned through the process of building this resource and speaking with leading organizations across Ontario:

  • All across Ontario, organizations are quietly and independently doing bits and pieces of work that have the potential to make a large and meaningful difference in the lives of young carers. Each organization I spoke with shared the unique work they are doing to support young carers. But they were often unaware of other organizations who are doing similar work or work that would complement theirs. It surprised me as I imagined the impact that they could make for young carers by simply being informed about each other’s work, and then of course by working together.     
  • Ontario does not have a universal understanding and definition of young carer. After meeting with a few of The Foundation’s existing young carer partners, I turned to the internet to further my search. The results for ‘young carer support in Ontario’ were few, with only the organizations that we had already worked with showing up. But when I combined other relevant terms, such as sibling, child, youth, young adult, and caregiver, a slew of other organizations popped up. Although many programs and organizations were not specifically labeled as young carer supports, many were actually supporting this population. Without a universal definition and understanding, it is difficult to be on the same page in terms of how the work from each of our organizations can fit together to ultimately support young carers in the different ways they need. We cannot have a clear direction and create common goals if we do not agree on the problem we are trying to solve.
  • Most of the existing resources I found are in the Greater Toronto and Hamilton Area (GTHA). As with many other healthcare services, supports for the health and well-being of young carers are concentrated in GTHA, or other metropolitan areas like Ottawa and London. While many of these organizations open their doors to young carers coming from anywhere in Ontario, the reality is that these services and programs are likely out of reach for many young carers. This highlights just how crucial it is that we work together to build capacity and deliver meaningful programs and services to young carers wherever they are. Ultimately, given that nearly a quarter of Ontario’s youth aged 15 to 24 are in a caregiving role, there are simply not enough resources available.

Going through this process really opened my eyes to the knowledge gaps that exist when it comes to young carers. There’s a lot of work that needs to be done to create awareness of, and support for, all caregivers. I was proud to be a part of it at The Change Foundation. It’s also the driver behind the upcoming forum that The Change Foundation is hosting to tackle this issue head on, the first of its kind in Ontario. 

If you know of an organization that works with young carers that we haven’t spoken to yet, or to learn more about the upcoming Young Carers Forum, please contact Catherine Monk-Saigal at

The State of Caring: UK & Ontario caregivers struggling with similar issues

Lori Hale, Executive Lead, Research & Policy

In July, Carers UK released their annual State of Caring report, which is based on the results of surveys with over 6,600 carers in the UK, and is meant to serve as a snapshot of life for carers in 2017. As I read through the report, I couldn’t help but notice the similarities between the carer experience in the UK, and the family caregiver experience in Ontario.

But before I get into it, I want to take a second to explain the terminology: the people we refer to here in Ontario as family caregivers, or sometimes just caregivers, are referred to as carers in the UK. But really, both terms are referring to the same people. And just to add an added layer of complexity, when family caregivers in Ontario are under 25 years old, we refer to them as young carers, not as young caregivers.

At The Change Foundation, we’ve done some research of our own into the caregiver experience in Ontario. As we presented in our 2016 report, A Profile of Family Caregivers in Ontario, we analyzed responses from 2,200 caregivers who participated in a 2012 Statistics Canada survey.

We also heard from 300 caregivers as part of our Caring Experience project, which we reported on in our Stories Shared, Voices Heard: Ontario’s Family Caregivers report.

While our surveys and Carers UK’s survey can’t be compared as apples to apples, due to many differences in terms of design, population surveyed and time period studied, there are nevertheless many common themes that emerged.

For example, the State of Caring report highlights the following themes:

  • Carers don’t feel valued or recognized. Three quarters (73%) of carers felt that their contribution was not understood or valued by the Government, and a majority felt that the public does not value their contribution.
  • Carers consistently aren’t being properly assessed and supports aren’t being put in place. Of the 68% of carers who said they had received a carer’s assessment, over half said their ability and willingness to provide care was not properly considered in the assessment and in the support they received; and only a third felt that the support needed to look after their own mental and physical health alongside caring was thoroughly considered and reflected in the assessment process. The Care Act in England defines new rights around assessments for carers, but as the State of Caring report points out “responses from carers show that this does not necessarily mean carers are getting the support the assessment identified them needing.”
  • Carers lack access to practical support and respite. A quarter of carers said they receive no practical support to help them with caring; for those who are caring 50 hours or more a week, 20% receive no practical support to help them. A quarter of carers said they hadn’t had a day off from caring for more than five years, and four out of ten said they hadn’t had a day off for more than a year. Without proper support, including respite, “carers are pushed to the breaking point and have to give up work, stop caring, or even go into hospital themselves.”

We heard very similar things from caregivers in Ontario. In fact, our Changing CARE project, which emerged from our Caring Experience work, is built around very similar themes: 

  • Communication: better communication and information exchange between health care providers, and between caregivers and health care providers.
  • Assessment: more identification and assessment of family caregivers to determine their needs, abilities and expectations.
  • Recognition: formal recognition of the role caregivers play in our system by the patient’s care teams and by caregivers themselves.
  • Education and supports: more opportunities for caregiver support and education to develop key care skills and knowledge.

Our commitment to family caregivers goes beyond the boundaries of Changing CARE—We are also committed to further engaging with family caregivers in Ontario to truly understand their experience as they interact with health and community care providers. We applaud Carers UK for their commitment to getting to the root of the carer experience in their jurisdiction. We plan to keep doing the same in ours.

Changing CARE update: Summer 2017

Christa Haanstra, Executive Lead, Strategic Communications 

Following the launch of the Changing CARE projects in early 2017, followed by a two-day intensive training on co-design by the UK’s Point of Care Foundation in late March, the teams have been working away, in partnership with caregivers, to build the foundation for change.

All four projects have convened a Steering Committee and have established a structure for governing the project and operationalizing the project work. The Change Foundation is actively participating on each of the Steering Committees, to bring our knowledge, insights and expertise, gained through our caregiver and provider engagement work, and our previous patient engagement work through PATH and PANORAMA.

From full-day planning retreats, to contributing to discovery work, to participation on committees, to being on hiring committees, to hiring caregivers in paid project roles, the caregiver voice is being given a stage through our Changing CARE partnerships across Ontario.

The Change Foundation and our Changing CARE projects are guided by our Compensation framework, outlined in our 2015 report Should Money Come Into It?, in helping to decide whether to pay patient and caregiver engagement participants.

A natural consequence of working in an emerging area is collaboration. We’re already seeing the collaboration happening between the four teams, despite their geographic spread, and their unique clinical priorities. From sharing resources, to creating opportunities to learn from each other, to building on each other’s’ ideas, the partnerships are growing strong.

A great example of this is the creation of three Coordinating Groups looking at three common issues across the Changing CARE projects—a formal caregiver ID and recognition program; a caregiver assessment process; and, a common evaluation and outcome measurement strategy. Each of these groups is chaired by an Executive Lead from The Change Foundation, and has caregiver participants, along with representation from each of the Changing CARE partnerships. They’ve each had their initial meetings, and will be working through the summer and into the fall. The goal is to lead a shared development approach that can be implemented at each of the four project sites, with the intent to share the model so that it can be spread across the province in the longer term. Stay tuned for their progress!

Even at this early stage, we can clearly say that the Changing CARE partnerships are poised to be leaders in caregiver recognition, support and integration in the Ontario health care system. Together, they will change the way health care organizations, providers, and caregivers work together.

Changing CARE update

Three provincial caregiver organizations and another on the way

Pierre Lachaine, Senior Communications Associate

As Ontario’s own caregiver organization comes closer to becoming reality (more on that below), and as recognition of the plight of the caregiver builds momentum in our province, it’s more important than ever for us to learn from those who have blazed the trails we are riding on.

Sharing what we know, and what we’ve learned through personal, hard-fought experience, is the best way for us to collectively make change for caregivers, and improve their experiences. When we stop thinking in terms of us vs. them, my jurisdictions vs. your jurisdiction and my project vs. your project, and start thinking in terms of collaboration and building on each others’ successes and failures, then that’s when a groundswell of change can really start to make an impact.   

A national perspective on caregiving 

On June 16, 2017, our CEO Cathy Fooks facilitated a session at Health Shared Services Ontario’s Achieving Excellence Together Conference called Strengthening Community Care Systems: A National Perspective on Caregiving.

We heard from Canada’s three trailblazing provincial caregiver organizations—Family Caregivers of BC, Caregivers Alberta, and Caregivers Nova Scotia—as well as from Janet Beed, the advisor to Ontario’s  Ministry of Health and Long-Term Care on caregiver issues.

Caregiver organizations can play a vital role in not only the lives of caregivers, but also in the healthcare system as a whole. Angus Campbell, Executive Director of Caregivers Nova Scotia, gave us an alarming statistic: “If care givers were to go on strike tomorrow, it would cost the Canadian healthcare system $66 billion per year.” These caregivers are at their breaking point, and need the support that caregiver organizations can give them—“30 per cent of caregivers are in distress,” Barbara MacLean, Executive Director of Family Caregivers of BC said.

The executive directors of each organization told the crowd about their organizations, and the supports they provide to caregivers in their provinces:

Caregivers Nova Scotia

Caregivers Nova Scotia is dedicated to supporting unpaid caregivers with free programs, one-on-one and peer support, information and educational workshops. Resources include Caregiver Tele-Connect, educational workshops, and The Caregiver’s Handbook, which is filled with tools, tips and resources to support caregivers.

Family Caregivers of BC

Their goal is to improve the quality of life for family caregivers through information, support and education. They provide leadership to strengthen the voice of family caregivers and the significance of their role. Family Caregivers of BC’s work falls under three pillars: education (e.g., webinars, workshops, presentations and resource development), caregiver support (e.g., one on one support and caregiver coaching, information, referral and navigation, support groups, online resource centre) and collaboration & engagement (e.g., health system improvement, participation in research, condition-specific organizations)

Caregivers Alberta

Caregivers Alberta provides resources and programs for caregivers, including COMPASS, a program that includes modules such as putting yourself first, managing stress and navigating the system. They also provide resources for providers, such as the Navigator workshop one-day training for health professionals, service providers and community agency staff to help them better support caregivers.

Ontario’s caregiver organization

Hearing from these organizations was particularly timely for us to hear in Ontario, since Janet Beed told the crowd that she had just recently submitted her recommendations to Health Minister Dr. Eric Hoskins about a new caregiver organization in our province, which she confirmed is in the pipeline. She reminded the crowd that Patients First: A Roadmap to Strengthen Home and Community Care (May 2015) included 10 steps to improve and expand home and community care. One of those steps is to expand caregiver supports.

Although the detail about her recommendations to Dr. Hoskins remain confidential, Ms. Beed did talk about the characteristics that she believes the caregiver organization should have:

  • Evolve over time
  • “By caregivers but not on the back of caregivers?”
  • Focus on general supports
  • Partner with others: reduce silos, minimize duplication, maximize support and expand what exists
  • Recognize unique needs
  • Be cost effective

For those in the room, the sense of momentum, and the sense that the caregiver experience is on the cusp of improving dramatically in Ontario, was palpable. And when it happens, it won’t be in a silo. It will be thanks to those who shared their learnings. 

Young Carers – The Invisible Population

TCF response to Kielburger article in the Huffington Post

Christa Haanstra, Executive Lead, Young Carers

To see Craig and Marc Kielburger shine a large spotlight on young carers, in their recent Huffington Post article, “Forced to Grow Up Too Fast, Canada’s Young Carers Face Trauma,” is extremely encouraging. This invisible population which makes up 28% of 15 to 24 year olds in Canada, has gone unnoticed for far too long. It becomes even more urgent when you consider there are many more youth left out of these statistics, as there is no data on caregivers under 15 years old. The sad reality is that caregiving responsibilities can start in children as young as five.

The Change Foundation is working in partnership with caregivers and health care providers 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. This includes young carers.

It’s much easier to explain young carers when we talk about it in the context of siblings living in, and helping out, in a household where one of their brothers or sisters has an illness – usually a chronic illness, disability or a serious health condition. But the truth is there are many young carers who play a notable role in supporting a parent or grandparent with a health issue. Those stories are harder to tell.

The Change Foundation has seen the impact of caregiving on young carers firsthand. Last year, we spent a week with eight young carers between 10 and 18 years old, who used photos, video and storytelling to bring a voice to their own personal stories. Six of them have bravely agreed to share their stories publicly.

There’s no question that there are two sides to the young carer coin. As poignantly stated in the article, “Panic attacks. Depression. Exhaustion. Social isolation. Poor academic performance and absenteeism. Behavioural issues,” happen as a result of their caregiver responsibilities. The other side was very apparent when I worked at Holland Bloorview, Canada’s leading pediatric rehabilitation hospital. I always knew there was something about the siblings of the children that we served. That something was usually a level of empathy beyond what most adults have, a degree of maturity well beyond their years, and a very high-achieving attitude.

As the article highlights, we know from the UK experience that young carers benefit greatly from both peer and professional support, as well as socializing with other young carers.

In the UK, under the Carers Act 2014, all caregivers, including young carers, are entitled to an assessment, followed by supports. Moreover, the onus is on health and social providers to identify young carers. Once a young carer is identified, they are assessed, and often the first step is to ‘right size’ their responsibility, by advocating for added services for the ‘cared for’ and for supports for the young carer.

Clearly, this doesn’t happen in Ontario. Not only is there a lack of awareness or understanding of young carers, there is an abject lack of supports and resources. Where can they turn for support? As a professional, where would you refer them? There are three small trailblazing organizations that offer some supports–Powerhouse Project (Niagara and Haldimand/Norfolk regions), Young Carers Program (offered by Hospice Toronto) and Young Carers Project (Kitchener Waterloo)–as well as a handful of researchers budding in academic centres. This is a start, but doesn’t even reach the tip of the iceberg.

At a provincial level, we’ve started to see more discussion and focus on the needs of family caregivers. As the momentum builds, let’s not forget about young carers.

At the 2017 international conference on Young Carers held in Sweden, the needs of young carers were highlighted on a global stage. For me, a slide from a presentation by Ingvar Nilsson, National Economist (Sweden) summed up the call to action well. “It might look expensive to support young carers…but it is almost always more expensive not to do it.” Known as the “silent population” we all have a role to play in giving young carers the attention and support they deserve.



Moving beyond caregiver recognition

In April, the spotlight was shining on family caregivers more than ever before. April 4 was Family Caregiver Day and a number of appreciation events were held to recognize the vital role families play in caring for a family member, friend or neighbour. In fact, for the first time ever, this day was recognized at the national, provincial and municipal level. Later in the month, the Ontario government announced new supports for family caregivers through increased funding for respite services, more education and training programs for family caregivers, a new Ontario tax credit, as well as the creation of a new organization to coordinate supports and resources for caregivers.

These initiatives are definitely welcome. They represent a step forward in recognizing this vital role, giving caregivers a bit more time away from their caregiver responsibilities, and providing needed and necessary information and training. 

But, is it enough? We don’t think so. Our direct engagement with family caregivers, and health care providers and staff tell us a more fundamental shift in thinking is required. Caregivers spend a lot of their caregiving time interacting with the health care system on behalf of their family member. Whether it’s chasing down information, coordinating appointments, or trying to convey vital information about the patient or the patient’s wishes, it can be time-consuming, frustrating and stressful. More access to respite or offering of education to caregivers, while important, does not change the fact that the system itself does not, by and large, value or acknowledge the caregiver role. Policies and practices in health care organizations often actually preclude caregiver involvement in patient care planning. To add insult to injury, busy staff often make assumptions about a family’s capacity to provide support without having a discussion with the caregiver to assess their willingness, ability and availability. And the evidence shows, when caregivers are not valued and supported, they burn out, become isolated, or they themselves become ill.

We are setting out to see if things can be done differently–we believe they can. Our Changing CARE work intends to do just that–change care and the caring experience for the caregiver. Since late January, we’ve announced four Changing CARE projects:

Connecting the Dots…Smoothing Transitions for Family Caregivers (Huron and Perth counties)

Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network

 Embrace (Cornwall)

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

 Improving CARE Together (London)

Partner Organization: St. Joseph’s Health Care London 

Cultivating Change: The Caregiver Friendly Hospital and Community (Toronto)

Partner Organizations: Sinai Health System and WoodGreen Community Services

Through these projects, we are working directly with eleven partner organizations, but the reach is much broader when we look at all the collaborative work planned as part of each project. You can read more about the projects, and what they hope to achieve in the coming years, in Genevieve Obarski’s article Creating New Linkages

April was also a busy month at The Change Foundation, as we welcomed Jodeme Goldhar, Executive Lead, Strategy and Innovation to our small but mighty team. In this role Jodeme will focus on expanding the Foundation’s international and national profile, as well as linking strategy to the execution of the Foundation’s projects. Stay tuned for her reflections on her trip abroad meeting with international colleagues, in our next issue of Top of Mind. 

As always, I’m excited to continue to share the Foundation’s activities with you and I sincerely hope you’ll continue to engage with us on this important shift in the health care system. A shift to recognizing family caregivers, and supporting them in the important role they play as key partners in our health care system.


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.