Caregiving terminology

By Yiqing Qian, MPH

 

Informal caregiver/family caregiver

Informal or family caregivers are individuals who provide care and assistance for their family members or friends (care recipients) who are chronically ill, disabled, frail, or elderly. Family caregiving is typically uncompensated, takes place in the home setting, involves significant efforts for an extended time, and requires the performance of various tasks, which are often physically, emotionally, socially, and financially demanding. Although the definition of family caregiver seems objective and common-sense, the operationalization of this term lacks consistency in research. More importantly, even individuals that meet the objective standards set by researchers do not always self-identify as caregivers. Some view their “caregiving” as a simple extension of their relational roles as family members.

 

Caregiving activities

In general, there are five categories of activities that caregivers typically perform:

  • Help with Activities of Daily Living (ADLs). Examples include getting in and out of beds and chairs, getting dressed, getting to and from the toilet, showing, and feeding.
  • Help with instrumental activities of daily living (IADLs). Examples include helping with transportation, shopping for groceries or other supplies, housework, cooking, and managing finance.
  • Assistance with medical/nursing tasks. Examples include injections, tube feeding, catheter, and monitoring blood pressure. These tasks are more complex and often require certain skills and/or training.
  • Help with other key activities. Caregivers often need to navigate the healthcare systems on the behalf of their care recipient. Thus, they also involve with communication with health care professionals, monitoring their care recipient’s condition to adjust care accordingly, and advocating with providers, services, and agencies.
  • Providing emotional support, comfort, and companionship.

 

Caregiver burden

Caregiver burden is a term to denote the multi-dimensional toll that family caregivers may experience. Although there is no standardized definition of caregiver burden, one useful definition from Zarit et al. is: “The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.”

 

Caregiver role strain

A caregiver role comes with many required caregiving tasks. Individuals may perceive different levels of difficulties in performing caregiving tasks even faced with similar requests. Caregiver role strain is defined as family caregivers’ perceived difficulties in performing required caregiving tasks or in doing caregiver roles.

 

Sandwich generation caregiver/sandwich caregivers

Sandwich generation caregivers provide care for generations above (parents) and below (children or grandchildren). Juggling competing caregiving responsibilities, they often feel being squeezed between two caregiving situations and over-stressed.

 

References

Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: a clinical review. Jama, 311(10), 1052-1060.

Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in nursing & health, 13(6), 375-384.

Eldredge, D. H., Nail, L. M., Maziarz, R. T., Hansen, L. K., Ewing, D., & Archbold, P. G. (2006). Explaining family caregiver role strain following autologous blood and marrow transplantation. Journal of psychosocial oncology, 24(3), 53-74.

Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20(8), 423-428.

Gaugler, J. E., Kane, R. L., & Kane, R. A. (2002). Family care for older adults with disabilities: Toward more targeted and interpretable research. The International Journal of Aging and Human Development, 54(3), 205-231.

Kent, E. E., Rowland, J. H., Northouse, L., Litzelman, K., Chou, W. Y. S., Shelburne, N., … & Huss, K. (2016). Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer, 122(13), 1987-1995.

National Alliance for Caregiving. Caregiving in the U.S. Retrieved July 20, 2021, from https://www.caregiving.org/caregiving-in-the-us-2020/

O’Connor, D. L. (2007). Self-identifying as a caregiver: Exploring the positioning process. Journal of Aging Studies, 21(2), 165-174.

Jacobs, B. J. (2020, January 03). The sandwich generation feels the caregiving crunch. AARP. Retrieved July 20, 2021, from https://www.aarp.org/caregiving/life-balance/info-2020/sandwich-generation-caregivers.html

Family Caregiver Alliance. The Sandwich Generation: When Caregiver Seems to Be Your Only Role. Retrieved July 20, 2021, from https://www.caregiver.org/news/sandwich-generation-when-caregiver-seems-be-your-only-role/