Family and other informal caregivers play a significant role in ensuring the health and well-being of loved ones requiring assistance in managing various aspects of their daily lives. As of 2020, there were an estimated 53 million caregivers in the U.S. . The caregiver population is rapidly growing and shows no signs of stopping. From 2015 to 2020, the caregiver population grew by 9.5 million, a remarkable 21% increase [1]. With an increased need for caregivers throughout the U.S. , it is imperative that the vital roles and responsibilities of caregivers be recognized and supported.
It is estimated that the total value of long-term services and supports (LTSS) that caregivers provided in 2011 was over $200 billion [1]. This is more than half of the LTSS for older adults in 2011. Caregivers are indispensable, as they are accountable for assisting their loved ones with the instrumental activities of daily living– these include helping with bills and paperwork, transportation, medications, personal care, and coordinating with providers. These tasks can vary in complexity depending on a patient’s needs and responses [2]. For instance, administering medication is not always a straightforward and simple task: patients may resist administration, caregivers may have difficulty keeping up with the sheer amount of medications, or caregivers may have trouble understanding the dosages and methods of administration. Most family and other informal caregivers do not expect to become caregivers in the future. Few have any formal training in providing patient care, and must learn all relevant skills, terminology, and much more as their care recipient’s situation progresses.
Caregivers can benefit from sources who will provide them with accurate medical knowledge, refer them to services and support groups, and other resources that will help them best care for their loved ones all the while maintaining their personal health. Providers (physicians, nurses, PAs, etc.) have great potential to reduce the gap between caregiving and the ambiguity of illness. However, fostering a relationship between caregivers and providers can be challenging due to a number of limitations on both ends.
One major barrier to establishing a caregiver-provider relationship is the difficulty providers and care teams can face in working with and identifying caregivers. More than half (54%) of providers reported that the presence of multiple caregivers can prevent them from interacting with family caregivers [3]. Each caregiver may be responsible for certain aspects of their loved one’s life, and it can be difficult for providers to keep up with informing multiple individuals. In addition, 44% reported that they are not aware of who the caregiver is [3]. Sometimes, patients may not think of their loved one as a caregiver. Other times, caregivers themselves are detached from the title– they are performing the responsibilities of a caregiver, but do not selfidentify [4]. This could be due to the fact that some patients and caregivers alike view the care provided as what is simply done for a loved one. Furthermore, using the title “caregiver” may result in a changed dynamic between the caregiver and patient, so it is avoided. The caregiver may also not be providing regular support for their loved one– 44% of providers reported that fluctuations in caregiver involvement have prevented them from interacting with family caregivers, resulting in a missed opportunity for a strong caregiver-provider relationship [3].
Conflicting responsibilities and limitations on time are both obstacles caregivers and providers may face, hindering effective communication between both parties. For caregivers, obligations to their own employment, other family members (including children), and their own health issues may prevent them from attending appointments for their loved one regularly [1]. The burden of these obligations can cause caregivers to feel overwhelmed and unable to commit the time necessary to form a relationship with their loved one’s provider. Additional obstacles for caregivers include unreliable transportation to appointments, language barriers, and a lack of compensation for engaging [5]. Providers most commonly face the burden of time. This has been a long-standing issue, especially prevalent in the U.S. healthcare system– time and cost are often interlinked, and shorter visits are incentivized. In fact, 39% of providers reported that interacting with a family caregiver was too time consuming. Beyond providers, 61% of health professionals including RNs, LPNs, and receptionists cited time as a deterrent to interacting with family caregivers [3]. The lack of time is an issue found at all levels of the healthcare team.
With an aging population and a heightened need for family and informal caregivers, it is essential that both policies and practices aimed to enhance the caregiver-provider relationship be implemented. Providers must be trained and incentivized to form relationships with caregivers, as they can serve as invaluable resources and help mitigate some of the burdens caregivers are currently facing.
References
1. Friedman, Esther M. & Patricia K. Tong (2020), A Framework for Integrating Family Caregivers into the Health Care Team. Retrieved from https://www.rand.org/pubs/research_reports/RRA105-1.html
2. Hughes, R. G. (Ed.). (2008). Patient Safety and Quality: An EvidenceBased Handbook for Nurses. Agency for Healthcare Research and Quality (US).
3. Skufca, Laura. “The Provider–Family Caregiver Relationship: Growth Opportunity.” AARP, https://doi.org/10.26419/res.00273.001. Accessed 3 May 2022.
4. Sperber NR, Boucher NA, Delgado R, Shepherd-Banigan ME, McKenna K, Moore M, Barrett R, Kabat M, Van Houtven CH (2019) Including Family Caregivers In Seriously Ill Veterans’ Care: A Mixed-Methods Study. Health Affairs, 38(6) 957-963. https://doi.org/10.1377/hlthaff.2019.00012
5. Schulz, R., & Czaja, S. J. (2018). Family Caregiving: A Vision for the Future. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry, 26(3), 358–363. https://doi.org/10.1016/j.jagp.2017.06.023