“Caregiver”: What’s in a Name?

Dena Schulman-Green, PhD 

Associate Professor

NYU Rory Meyers College of Nursing



There are many synonyms for “caregiver”: care partner, carer, family caregiver. In my research with caregivers, many have expressed that these terms don’t resonate with them. Some feel these labels artificially characterize or elevate them, when caring for a loved one is something they would obviously do. Others say these terms don’t capture all they do- that “caregiver” implies physical care, like bathing and dressing, when there is often so much more involved. When I have asked caregivers for alternate terms, they suggest, “life coach”, “cheerleader”, “grief counselor”, “interpreter”, “medical advocate”, “warden”, and “right hand”. Some say, “Caregiving is not who I am, it’s what I do.”

In this month of recognizing caregivers, caregiver voices can help us to appreciate more fully the breadth of caregiving activities and experiences. I share a few examples: “It’s providing many different kinds of support: practical support; emotional support; spiritual support.” “I help her to stay focused on staying positive, but also let her experience and feel the things that she needs to feel that go along with this disease.” “If I have to be the person that watches her at her most vulnerable and is there to lift her up, then that’s what I do. If I’m the person that has to listen to her scream because she’s feeling angry, then that’s what I’m going to be. It’s whatever I need to be in that moment.”

For those who have been or are caregivers, these words strike a chord. Whether caring for a child, parent, partner, grandparent, friend, or other relation, caregiving requires many hats and much resilience. It can be overwhelming to be a nurse, chef, and chauffeur on one day, and a therapist, scheduler, and spokesperson the next. Sometimes one wears all these hats and more in a single day. On other days, one’s only hat may be to be present, which can be more difficult than wearing many.

As skilled as caregivers are or learn to become, they are often not as good at caring for themselves. The sound advice to, “put on your own oxygen mask before you help others to put on theirs” can fall short, not because caregivers don’t acknowledge the need to sustain themselves, and not because they relish self-sacrifice, but because their energy for any more caregiving has simply run out. When a loved one has a chronic illness, caregiving is indefinite. Even short-term caregiving is challenging. When a loved one passes, caregivers may wonder for years if they cared well. Caregivers never really cease being caregivers as much as they evolve in the role, hopefully in positive ways. So while some caregivers may get to self-care, they likely need someone to care for them. When you are with a caregiver, put the oxygen mask on them. If you are a caregiver, accept the help. Caregiving necessitates a team effort. Whatever term we use for a caregiver, it should be plural.

Minimum Nursing Home Staff Standards:

A Good Start, But Not Quite There

HIGN Executive Director Prof. Tara Cortes and HIGN Assistant Director Prof. Jasmine Travers wrote a column for the American Journal of Nursing on the proposed minimum staff requirements for long-term care facilities, the importance of these requirements, challenges to its implementation, and the need for further reform to create a better working environment for long-term care staff. Profs. Cortes and Travers also responded on behalf of HIGN/NYU Meyers to the Centers for Medicare and Medicaid Services' request for comments on the minimum nursing home staff proposal.

Click here to read the column.

Moving Forward CNA Wages, Support and Career Pathways

Prof. Jasmine Travers penned a guest column for McKnights Long-Term Care News on the Moving Forward Nursing Home Quality Coalition Workforce Committee's plan for putting two of the nine recommendations in the National Imperative to Improve Nursing Home Quality into action: 1) Ensuring competitive wages and benefits for certified nursing assistants (CNAs) and 2) Advancing the role of and empowering the

CNA. The column provides a summary of what these action plans entail and where help is needed from states, nursing home leaders, policymakers, and providers.

Click here to read more.

Geriatric Surgery Verification Program and the 4Ms Series

The Integrating the Geriatric Surgery Verification (GSV) Program with the 4Ms Series  was created to educate health professionals on how to incorporate the 4Ms (What Matters, Medication, Mentation, and Mobility) and the Geriatric Surgery Verification Program into practice.

This series includes one introductory course and four case studies. The introductory course discusses the perioperative experience as implemented through the GSV standards and the 4Ms framework. Each case study focuses on one phase of the perioperative experience (pre-operative, intra-operative, post-operative, and discharge). Throughout each interactive case study the learner assesses and determines best practices for caring for the older adult patient based on the 4Ms framework and the Geriatric Surgery Verification Program standards. 

Click here to learn more.

HIGN Highlights

Prof. Fidel Lim published an article entitled Placebo, Nocebo, and Nursing Care in the American Nurse Journal.

Prof. Dorothy Wholihan participated in the Edmund J. Safra Visiting Faculty Scholars program, an intensive program at the Muhammad Ali Parkinson's Center in Phoenix, studying how to better educate nurses about symptom management in patients with PD.

Publications and Presentations:

Lim, Fidelindo DNP, CCRN, FAAN; Ozkara San, Eda PhD, MBA, RN, CHSE, CTN-A, FNYAM. Methods of Teaching Transgender Health in Undergraduate Nursing Programs: A Narrative Review. Nurse Educator ():10.1097/NNE.0000000000001558, November 02, 2023. | DOI: 10.1097/NNE.0000000000001558

Prof. Komal Patel Murali gave a presentation “Designing a Health Equity-Focused Hospice Care Transitions Intervention in Home Healthcare for People Living with Dementia” at the 2023 Kathleen Foley Palliative Care Retreat and Research Symposium in Jackson Hole, WY.

Patel, R. V., Murali, K. P., & Patel, V. R. (2023). Clarifying Karma for Culturally Concordant Care. JCO Global Oncology, 9, e2300259. https://doi.org/10.1200/GO.23.00259

Abramsohn EM, De Ornelas M, Borson S, Frazier CRM, Fuller CM, Grana M, Huang ES, Jagai JS, Makelarski JA, Miller D, Schulman-Green D, Shiu E, Thompson K, Winslow V, Wroblewski K, Lindau ST. CommunityRx, a social care assistance intervention for family and friend caregivers delivered at the point of care: two concurrent blinded randomized controlled trials. Trials. 2023 Oct 21;24(1):681. doi: 10.1186/s13063-023-07697-z. PMID: 37864258; PMCID: PMC10624358.