Who is a caregiver?

Caregiving can exist as a professional relationship or, more often, as an informal or familial relationship. There are more family caregivers in the United States than there are direct care workers by a factor of ten, according to the National Alliance for Caregiving[1] and AHIP[2]. Generally speaking, a caregiver provides meaningful support to an adult. But what kind of support makes someone a caregiver? A good place to start is assessing whether a possible caregiver is helping someone with their activities of daily living, or ADLs. These include[3]:

  • physically moving around (ambulating)
  • feeding/eating, including shopping and meal preparation
  • getting dressed
  • personal hygiene
  • continence
  • using the restroom
  • transportation and shopping
  • managing finances
  • general housekeeping and maintenance
  • managing communications like phone calls, mail, and email
  • managing medications This does not apply to individuals who voluntarily hire someone, such as a personal assistant, to perform tasks due a reason such as personal preference or time constraint. Identifying whether someone is a caregiver can be a bit like identifying whether someone is a runner: at the bookends it feels obvious, but there’s a wide middle area where things can look a little fuzzy. If you are pondering whether you are a caregiver, here are a few questions you may find it helpful to ask yourself:
  1. Do I make plans based around the needs of the adult I support, whether in small ways like planning grocery trips for when they will be home to receive a drop off or in large ways like scheduling travel when someone else will be around to help?
  2. Does helping out the adult I support impact other areas of my life such as work or recreation?
  3. Do I feel an obligation to make reasons to drop in or avoid a visit, knowing there will be tasks for me to complete when I get there (washing dishes, minor home maintenance, help running an errand)?
  4. Have I considered the schedule of the adult I support when scheduling personal medical appointments, personal care appointments such as haircuts, or work outside of my typical schedule?
  5. How many hours per week do I spend helping out the adult I support?
  6. Do I cook or eat differently as a result of the time or energy I spend on supporting the adult I help out?
  7. Have I incurred expenses I would not normally because of the help I am providing?
  8. Do I “feel” like a caregiver?

Only you can answer this for yourself! However, when considering whether you are a caregiver, it can be helpful to ask people close to you for their opinion. Especially with progressing needs, what used to be a once-in-a-while event may have become a much bigger part of your life. Self-identifying as a caregiver is not always easy,[4] especially if the care needs came on gradually and for a family member. There is absolutely nothing wrong with being or having a caregiver! Caregivers often find both positive and negative aspects[5] to the experience. If you are reading this and wondering if you have a caregiver, welcome! Your possible caregiver may be wondering the same thing. I hope you have found something helpful here.

What about parents of children with special needs?

Absolutely this counts as caregiving[6].

If you have read this and are thinking of someone you know, please consider sharing this. You may be the first one to recognize them as a caregiver, including themself! AARP has a fantastic infographic on caregiving in the United States in 2020 compared to 2015, check it out here.

Citations:

  1. AARP and National Alliance for Caregiving. May 2020. Caregiving in the U.S. (Report 2020). AARP. https://www.caregiving.org/wp-content/uploads/2021/01/full-report-caregiving-in-the-united-states-01-21.pdf
  2. AHIP. November 2020. Caregivers in America: Helping People Live Safety at Home. AHIP. https://ahiporg-production.s3.amazonaws.com/documents/202011-AHIP_1P-Caregivers.pdf
  3. Edemekong PF, Bomgaars DL, Sukumaran S, et al. Activities of Daily Living. [Updated 2023 Jun 26]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. https://www.ncbi.nlm.nih.gov/books/NBK470404/
  4. Carduff, E., Finucane, A., Kendall, M. et al. Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources. BMC Fam Pract 15, 48 (2014). https://doi.org/10.1186/1471-2296-15-48
  5. Barbara Member Jika, Hafiz T.A. Khan, Muili Lawal, Exploring experiences of family caregivers for older adults with chronic illness: A scoping review, Geriatric Nursing, Volume 42, Issue 6, 2021, Pages 1525-1532, ISSN 0197-4572, https://doi.org/10.1016/j.gerinurse.2021.10.010
  6. Redquest, Brianne K. MSc; Reinders, Nicole BSc; Bryden, Pamela J. PhD; Schneider, Margaret PhD; Fletcher, Paula C. PhD. Raising a Child With Special Needs: The Perspective of Caregivers. Clinical Nurse Specialist 29(3):p E8-E15, May/June 2015. https://doi.org/10.1097/nur.0000000000000122