Why 2024 Will Be the Year of the Caregiver

My New Year’s resolution is to work hard at the Canadian Centre for Caregiving Excellence to get a national strategy for caregivers – ALL caregivers, patients and families. 

The third day of the November Canadian Caregiving Summit was all about how we can achieve real change here and worldwide for you, me and the millions of caregivers who need help now. We wanted to know what had been achieved in other countries and how they did it. 

First off, we heard from Allison Barkoff, acting Assistant Secretary for Aging and Principal Deputy Administrator, Administration for Community Living at U.S. Department of Health and Human Services. She declared that her mission was to ensure every person can live and participate in their community, regardless of age or ability. Not just people with Alzheimer’s or childhood disability, EVERYONE. Caregivers included. Allison described a framework for thinking about care infrastructure: that supporting it is a matter of civil and human rights. And that care infrastructure consists of paid care AND families. We cannot support one without the other and expect positive change. A key aspect of the federal “wins” for caregivers that Allison described was in combining issues of aging with disability. Another key element was political will. An executive order by President Joe Biden created the opportunity for a big tent movement culminating in the RAISE Family Caregivers Act. “We must make the business case to support caregivers”, Ms. Barkoff said, “and then we must act with radical incrementalism.” In other words, be visionary, determined, collaborative, strategic and know that small steps on a single path can lead to new territory. 

Greg Link of the US Department for Community Living (Director, Caregiver Support) told us that the RAISE Act includes a list of nearly 350 actions that 15 federal agencies agreed to take. He urged us to adopt a similar big tent approach and then seek elected officials to enact a national strategy. He said, “have a policy that’s big enough that any group that looks at it can think, “there’s something here for us.”” It’s a whole society approach. 

Next, an international panel of caregiver leaders from the USA, UK, Ireland and Brazil compared and contrasted barriers and facilitators for engineering supportive change in their respective countries. One UK example has stayed with me: The Care Act states that caregivers are equal to patients and thus should have equal support from health and social systems. Dr. Nikki Dunne from Family Carers Ireland told us how her organization successfully lobbied to pay family caregivers. 

In keeping with the idea that care provider wellbeing is intertwined with family caregiver wellbeing, I was keen to listen to a panel on just that subject. A number of front line caregivers told us how they felt invisible and under-valued. Their stories of commitment to caring in the face of racism and apathy brought me to tears. 

But we need our elected officials to put skin in the game. We heard from Members of Parliament representing each of the major political parties in Canada. This isn’t just talk – we need our tax dollars to support families because caregivers are in crisis. Thankfully, our message was well received. 

We heard about policy innovations in Canada and how we leveraged terrible pandemic lock-down challenges to achieve the broad acceptance of “essential family caregiver” in hospitals and long term care homes. 

Next, Dr. Brian Goldman interviewed Baroness Jill Pitkeathley, founder of Carers UK and “mother of the caregiving movement” worldwide. It was truly inspiring to hear the sum of her accomplishments over a lifetime of care advocacy. She challenged us, “You can do the same!” 

Finally, it was time to chat amongst ourselves and set policy priorities for caregiver support in Canada. The discussion was passionate and we could tell that change is coming. We ARE a movement and together, we are stronger. I will always remember the words of Allison Barkoff, “Big groups speak with louder voices.” Well, it’s time to be heard. I call for a National Caregiver Strategy in 2024 and I hope you’ll raise your voice with mine.

Happy New Year, everyone!