About 20 years ago, I had a conversation with a family caregiver that remains with me.
The family caregiver read an article about caregiving that referenced “caring for a loved one.” She told me: “I don’t love my family member so I didn’t think that article was for me.” (We use the term “caree” for this very reason.)
Words matter. When we use words that aren’t relatable, then we don’t reach family caregivers. When we don’t reach family caregivers, we risk leaving them without help and support they need and want.
Research recently released about the challenges faced by family caregivers garnered lots of press coverage. I did my best to read as much coverage as I could.
In the articles I read, both the researchers and the media regularly refer to “unpaid” family caregivers. (They also keep calling family caregivers invisible.)
I think the word “unpaid” misses the mark. Unpaid could mean we choose to do the work without getting paid. Unpaid also could make someone wonder: Who would pay family caregivers?
I don’t think it’s about being unpaid. It’s about not being reimbursed.
Family caregivers aren’t reimbursed for the work they provide on behalf of the systems. Family caregivers provide care 24/7; the systems provide once-in-awhile care. The systems receive reimbursements when they provide care. Family caregivers don’t.
If we use the term non-reimbursed family caregivers then we can draw a direct line to family caregivers doing the work of The 19 Caregiving Systems without receiving compensation. Family caregivers are the only system that isn’t reimbursed for providing care.
What do you think? How do you feel about using "non-reimbursed family caregivers” rather than “unpaid family caregivers”?
Resources
We want to fund family caregivers which is why we’re raising money to send funds directly to family caregivers. Purchase a t-shirt for $20 to help fund our initiative.
Join me August 20 at 1 p.m. ET (Noon CT, 10 a.m. PT) for “The Workshop Blueprint: Turn Your Caregiving Wisdom Into Your Signature Workshop.” I’ll help you develop your workshop that’s inspired by your caregiving experience. It’s free!
I agree that the label 'unpaid carer' is not 'relateable'. However, here in the UK it is the specific label that the government and census data have given family caregivers* to differentiate us from those who are paid. Hence, why the media and many of us feel 'invisible' because 'paid care' is 'acknowledged' but unpaid care is 'assumed'.
We are marginalised, outside the 'economic definitions' and thus not seen as contributing (economic) value to the economy. Of course, I don't agree, and many other organisations, charities and media try to keep the struggles of 'unpaid carers' and our value to society, in mainstream discussions.
Further friction is being created with recent proposed changes to the NHS and the lack of social care reforms (delayed to 2008). Emily Kenway wrote an excellent article that sums this up extremely well 'Carers like me connect patients and doctors – so why are we so often made to feel invisible?' : https://www.theguardian.com/commentisfree/2025/jun/30/carers-patients-doctors-feel-invisible-health?CMP=Share_iOSApp_Other
So, I agree that Words matter, and how we're labelled in the UK undermines our role as the scaffolding and glue sustaining the care within a fragmented system.
(*https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/socialcare/bulletins/unpaidcareexpectancyandhealthoutcomesofunpaidcarersengland/april2024)