The Identity Question of Family Caregivers

Our actions identify us as family caregivers to the health care systems all the time.

A few weeks ago, a colleague tagged me in a LinkedIn post that asked this question:

“Why don’t family caregivers identify as caregivers?”

My colleague graciously shared that I define a family caregiver as anyone who worries about a family member.

I think it’s important we think through how we define a family caregiver so our support, resources, services and help include anyone who could be a family caregiver. In truth, anyone at any age and at any time can be a family member. When we hold an inclusive definition, we can do better at reaching family caregivers.

What I wish we could stop doing is saying “family caregivers don’t self-identify.”

Our actions identify us every day.

We identify our role through our actions in the doctor’s office and the hospital, at the pharmacy, as we organize and manage providers and in our communities as we assist our carees so they remain engaged and connected.

It’s not a self-identification issue — it’s a reimbursement issue.

We Show That We Are Family Caregivers

The systems see us, direct us to implement and manage care plans, rely us, use us. The systems aren’t reimbursed for supporting and helping us, so they do the bare minimum. (This is changing with Medicare reimbursement for CHI and PIN services.)

It doesn’t matter what we call ourselves and, honestly, it shouldn’t matter whether we call ourselves a family caregivers. The systems interact with us all the time and they know we are a family caregiver! The systems could make our lives better by simply sharing a list of helpful resources on diagnosis day. (We do much more than this with our After the Diagnosis Planning session but a list of resources can be a helpful start.)

I’ve been requesting we let go of the idea that family caregivers don’t self-identify for more than 20 years. I’ve seen so many businesses enter the space with venture capital funding, create a service or product that family caregivers don’t want and then blame their failure on “family caregivers not self-identifying.”

We aren’t hidden. We aren’t unaware of the toll of our caregiving responsibilities. It’s not us. It’s the systems.

The systems see us every day and just don’t help us.

I shared more insights like these during a workshop I held last week called “How Will We Care?” You can watch the workshop, below. You also can join our Learning Opportunities space to receive more insights about the personal caregiving experience; visit the Archives section to watch our recordings.


(Image by Arek Socha from Pixabay.)

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