Informal Caregivers Need Our Help
How often do you find a large segment of the population critical to society but unaware of their value? Welcome to the most modest group in America: the informal (or family) caregiver.
Me…A Caregiver?
Years ago, I was touched by Alexandra Drane, who spoke about her part-time work at Walmart. While those of us embedded in an industry frequently apply labels such as "informal caregivers," "real people" just think of themselves as fulfilling their obligation to help family or friends. In fact, (pre-COVID-19) research showed that fifty percent of unpaid caregivers had no idea what that meant or were confused by the term.¹ And "[d]espite the integral role that family caregivers play in the care of older adults…they are often marginalized or ignored in the delivery of health care…" ²
Technically, What is an Informal Caregiver?
Informal caregivers help provide a range of care to family or friends. They generally provide this care out of a sense of love, duty, or altruism instead of compensation. This care is typically provided in a home and can range from driving, grocery shopping, housework, and preparing meals to assisting with dressing, eating, bathing, and incontinence. And the role of the informal caregiver frequently evolves into semi-clinical tasks such as administering medication, managing wound dressings, or supporting home dialysis.
The Importance of Informal Caregivers
A recent report published by the National Alliance for Caregiving and the AARP Public Policy Institute estimates that 41.8 million Americans currently provide unpaid care for relatives and friends aged 50 or older. These family caregivers annually provide 34 billion hours of care. The economic value of their unpaid contributions approaches $500 billion.³
The Challenges
While there are many benefits to caregiving⁴, it isn't easy. The informal caregiver is rarely equipped for the job. Approximately 60% of family caregivers have full-time jobs⁵, and 26% indicate they have challenges coordinating this care. Specific survey responses suggest that the challenges are much more significant than acknowledged. The burdens of caregiving are varied.
- Caregiver stress due to caregiving's emotional and physical strain is natural, and caregivers report much higher stress levels than those who do not carry that responsibility. Many caregivers provide help or are "on-call" throughout much of the day. Sometimes, this means there is little time for work or other family members or friends. Many caregivers feel overwhelmed by the amount of care their aging, sick or disabled family member needs.⁷
- Caregivers are at increased risk for having multiple chronic diseases as they may neglect their health needs while providing care to others.⁸ 40.7% of caregivers report having two or more chronic diseases, and 14.5% of caregivers reported experiencing 14 or more mentally unhealthy days in the prior month.⁹
- The financial strains on caregivers can be enormous. Almost 50% of caregivers reported at least one form of financial impact due to caregiving, such as having to stop saving money or taking on more debt.¹⁰
- Finally, responsibilities imposed by the caregiving situation may interrupt social life, activities, or even work, which may be challenging.¹¹
Some Thoughts and Solutions
Given the societal and economic benefits of informal caregiving, it is shocking that caregivers have not yet become a priority within our political and health system. The direct economic value delivered by these caregivers supports investment by society (including the healthcare system and payors), and the positive impact on the emotional, mental and physical health of their loved ones is tremendous.
Although there is no simple solution, recognizing caregiver value and working to reduce their stress can be a great start.
Let's help by allowing caregivers to understand what will need to be done, by whom, and how. While some organizations include caregivers as essential participants in care delivery, most pay lip service but offer little real support.
- The provider or payor should ensure that a resource is available for caregivers to learn how to do what is expected. Possible approaches include:
- Training, initiated by a professional who can explain what to do and the problems likely to be encountered;
- Digital (and paper, if desired) resources with instructions and videos to act as a simple reference to the caregiver;
- A tool allowing for asynchronous communication with someone who can answer questions when they arise; and
- If appropriate, information and progress should be shared with the entire family and informal care team to distribute the burden and ensure that others understand the stress on the primary caregiver(s).
Since we know that financial stress is a significant burden for many, let's ensure we understand whether it is an issue in this particular situation. If so, how can we help?
- Provide resources that help the individual qualify for any financial support that might be available to the caregiver either through their public or private benefits;¹²
- Highlight the vast resources which are available through government and community-based organizations to provide additional support through tools such as FindHelp;¹³ and
- Continue to pressure society to expand financial support for caregivers, as it isn't only the right thing to do but also provides a positive ROI.
Caregiver stress cannot be eliminated, but it can be reduced.
- Allow the caregiver(s) to have occasional assistance or respite service to decompress, take care of themselves, and have some fun.
- Ensure that their caregiving activities are articulated and as predictable as possible so that we minimize the surprises.
- Provide a resource for caregivers to speak with others like them. Although caregiving may be an independent activity, many others are going through the same experience, and simply connecting with them is often helpful.
As a society, we must increase our focus on caregivers and provide them with the tools they need to succeed. Current trends will continue to increase the challenges of caring for an increasingly large aging population, and it is imperative that we look at how to support and engage with these caregivers by providing both formal and informal support.
Endnotes
[1] "Supporting unpaid caregivers in crisis: A talk with Alexandra Drane," McKinsey & Co, October 2021, p. 2.
[2] National Academies of Sciences, Engineering, and Medicine.2016. Families Caring for an Aging America, p4. Washington, DC: The National Academies, Press. DOI: 10.17226/23606.
[3]https://www.aarp.org/ppi/info-2015/valuing-the-invaluable-2015-update.html?cmp=RDRCT-VALUN_JUN23_015
[4] https://thewomensalzheimersmovement.org/benefits-caregiver/
[5] https://www.aarp.org/ppi/info-2020/managing-a-paid-job-and-family-caregiving.html
[6] https://www.aarp.org/ppi/info-2020/caregiving-in-the-united-states.html
[7] American Psychological Association. (2012). Stress in America: Our Health at Risk. APA: Washington, DC.
[8] https://www.cdc.gov/aging/caregiving/index.htm, accessed June 2022
[9] Ibid.
[10] Suk-Young Kang (2021) Financial strain among unpaid family caregivers of frail elders in the community, Journal of Human Behavior in the Social Environment, 31:5, 582–598, DOI: 10.1080/10911359.2020.1799900
[11] Oldenkamp M, Bültmann U, Wittek RPM, Stolk RP, Hagedoorn M, Smidt N. Combining informal care and paid work: the use of work arrangements by working adult-child caregivers in the Netherlands. Heal Soc Care Community. 2018;26:e122–31.
[12] Learn about some of the opportunities provided by Medicaid and the VA https://www.medicaidplanningassistance.org/getting-paid-as-caregiver/ and https://www.va.gov/family-member-benefits/comprehensive-assistance-for-family-caregivers/
[13] https://www.findhelp.org/
#HealthEquity #PatientChoice #CareTransition #SNFs #SkilledNursing #CareManagement #PatientData #Caregiving