Caregiver survival: Self-awareness and advocacy
advocating for caregivers

Highly focused and capable caregiving families will be a force to reckon with. -NFCA

If you are reading this, it’s likely you already identify as a caregiver.

Good! That’s the first step to becoming a self-aware caregiver advocate. However, many still don’t assume the identity. In fact, the AARP Caregiver Identification Study found that 15% of respondents did not consider themselves to be caregivers, even when they performed all of the responsibilities of one. So ask yourself: “Do you currently provide or have you provided in the last year unpaid help to a relative or friend who has a disability or chronic disease? This kind of help includes assistance with health or personal needs or household chores. It might be taking care of finances, arranging for outside services, or visiting regularly to see how they are doing. The relative or friend you are helping may be someone who lives with you or somewhere else including another city.”

With an affirmative answer to any of these statements, you are a caregiver. Your job cuts across all racial, economic, religious, and occupational backgrounds. Family caregiving is becoming more important every day, but also more difficult, thus imperative that you know your rights as a caregiver.


Some of us don’t identify as a caregiver for conscious reasons.

Self-identified caregivers face discrimination at work, isolation from friends, and unease with stereotypes. However, the majority of caregivers do not self-identify because they are unaware of the progressive nature of the role, misunderstand the definition of caregiver, or don’t realize the benefits of identification. Commonly caregivers begin their journey with “this is what a good daughter/son/sibling/spouse would do” and eventually they find themselves with an unpaid full-time job. Without an understanding and acceptance of the caregiver label, an individual will be blind to the community ready to offer their support.

According to reports, caregivers immediately became more proactive about research and care for their loved one only after they had assumed the caregiver identity.

Unfortunately, self-care only improves “a little” according to self-identified caregiver respondents. However, these caregivers note that their confidence and feelings of empowerment increase “a lot.” Also, it is easier to recognize feelings of isolation, depression, and stress once an individual accepts their caregiver identity.

Almost all of today’s caregiver advocates are, or once were, caregivers themselves.

Self-identification as a caregiver is the “single most significant variable in determining to what extent a respondent took … self-help or self-advocacy actions” (Self-Awareness in Family Caregiving). We are our best advocates because we know what it takes! But we can only become a voice for caregivers once we have joined the community of self-identified caregivers. We find that there are others just like us who understand the frustration, resentment, and loneliness. They also experience the kind of love, compassion, and tenderness that caregivers bring to the world.

Self-awareness is the cornerstone of advocacy.

This idea is basis of The Caregiver Community Action Network (CCAN), a volunteer organization striving to improve caregivers’ lives in the community. CCAN is “comprised of current or former family caregivers so you can be assured they understand as only a caregiver can, what you are experiencing. In addition to their caregiving experience many of them work in caregiving-related agencies and businesses.” The Caregiver Action Network (CAN, formerly the NFCA) is an organization championing for caregiver’s rights. They publish materials on self-advocacy and represent caregivers on the state and federal levels.

When you identify as a caregiver seeking resources, you are sending a message to healthcare companies, medical professionals and federal institutions that you are one of many. America will respond to the caregiving community’s demand for rights and our country will recognize the caregiver’s struggle is not just a familial but societal issue.

Stand up for your loved one, yourself, and caregivers worldwide—become a self-aware caregiver.

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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  1. Please try to correct the numerical error on the graphic. Is it 65,700,000 or 6,570,000?

    • Nice catch– working on a fix! There are 65.7 million caregivers in the US according to a National Alliance for Caregiving in 2009. Today’s estimates are up to 90 million…

      • wow, did not realize the numbers were that high, but then again, if we are not a caregiver for someone in the family, it is likely some one is a caregiver for us.

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