Insights from the Rosalynn Carter Institute for Caregivers Convening: Making the Unseen Seen

Energized and excited to share key insights from the Rosalynn Carter Institute for Caregivers Convening in Detroit this past week - Making the Unseen Seen: Transforming Systems to Better Support Family Caregivers.

Some eye-opening statistics:

• We know 53 million Americans are family (or unpaid) caregivers – people supporting a loved one going through a health journey. That number expands to over 100 million when you add those caring for children.
• 61% of employees are caregivers: Employers take note!

Key takeaways, quotes and stories:

“If you’ve met one caregiver, you’ve met one caregiver.”

1. Caregiving is unique – Read that again… I’m often asked to define caregiver personas or moments. While there are moments in the product journey, caregivers feel more isolated when their own unique journey is not honored and seen. RCI unveiled new caregiver profiles to bring greater awareness to the phases of caregiving which we know are episodic not static. These new profiles lean into the fact that trying to create a single journey description for all works against inclusivity, support and progress. Ursulá Garcia-Mayes (EdD Candidate) said it best – “Calling me a ‘breast cancer caregiver’ offends me.” The panel vehemently agreed based on caregiver research and conversations – unpaid caregivers are not only dealing with the diagnosis, but the co-morbidities that exist with any condition and caregiving situation, including one’s own health (physical and mental).”
2. Disease states don't define caregiving which means we need more inclusive language to reflect the richness of the caregiving experience. At CaringBridge ‘family caregiver’ recognizes the contributions of friends, family and neighbors in caregiving roles because we know how those contributions and support improve patient outcomes. But we also know that using the term “family caregiver” could isolate those that are friends and neighbors that are often playing the role of caregiver. And most importantly, people don’t identify with the word ‘caregiver.’ Asking about the tasks associated with caregiving is often the best way to identify caregivers. For example: “Are you someone helping your spouse get dressed every day? Make sure they get their medications on time and at the right time? The sole person getting them to and from medical appointments?” One panelist’s pain stuck with me: the ‘universal goal to age at home’ left him feeling alone, guilty, and isolated for choosing assisted living for his parents’.
3. Data is crucial. The new RCI Data Platform will aggregate shared research, caregiver voices, and RCI data to drive better support and policies, a three-year funded project.

Our goal isn't to make caregiving easy (spoiler alert: it never will be) but to make it less hard.

We can do that by distributing the load. It’s about bringing in community and making asking for help easier. It’s less ‘how can I help?’ and more ‘let me drive you to your next appointment, pick up the next prescription refill, bring a nourishing meal for you and the family or take the children to the park for two hours on Saturday morning’. We must continue to ask caregivers and their loved ones what they need in thoughtful ways that don’t add to overwhelm. And solutions must remember that caregiving is hyper-local. It’s more important than ever to be able to activate a community in support from anywhere but localized. At CaringBridge we know that people will always need different support but that specificity in asking for help goes a long way and allows communities to step in and give what they can.        

Inspired by the collaborative energy and innovative approaches discussed. CaringBridge is looking forward to putting these insights into action to better support caregivers everywhere.

Let’s not forget, it’s not if you will be a caregiver, it’s when.