Abstract
There’s a good chance that a friend, colleague, or loved one in your social or professional circle is providing care for another adult in addition to their day-to-day responsibilities. 1 Maybe you are. Shifting demographic trends are almost guaranteed to increase these odds, adding fuel to the fire of what many have deemed a caregiving crisis. 2,3
The challenges family caregivers face, including sacrifices they make in their own emotional, physical, financial, social, and career well-being 3 have historically been overlooked by employers, policy-makers, and society. 4 And as Steven Cohen and colleagues underscore later in this issue, those challenges were exacerbated by the COVID-19 pandemic. 5 A recent cross-sectional survey of approximately 575 unpaid caregivers indicates that, compared to non-caregivers in the same geographic region, family caregivers experienced higher anxiety, depression, fatigue, sleep disturbance, increased food insecurity, increased financial worries, lower social participation, and lower financial well-being. 6
There is wide variability in the level and types of support provided by states and employers. Courtney Roman and colleagues highlight some notable positive illustrations of steps New York and Texas have taken to support caregivers. All too often, however, the help available is insufficient and difficult to navigate.
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The poignant and compelling personal story from Rebekah Azaylia Alexander in this issue—and recent commentaries from AARP
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—underscore how woefully inadequate long-term care options currently are: Families in search of long-term care enter a world that is fragmented, confusing, costly, under-regulated, and lacking in transparency. Too often, individuals and their loved ones must desperately cobble together a patchwork of ways to get the services they need.
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Fortunately, the needs of caregivers are coming into sharper focus. On the policy front, President Biden’s infrastructure plan includes $400 billion to overhaul home and community-based services for care provision 3 including increased jobs and wages for home health care workers and the expansion of long-term care options under Medicaid. Building the care infrastructure is the proverbial win-win in that caregivers would benefit from additional assistance, which could reduce burnout and improve well-being, and in turn improve care. Furthermore, bolstering at-home care provision can allow seniors to age in place. 4 A broad coalition of organizations and caregiver advocacy groups came together (#CareCantWait) to advocate for an equitable care infrastructure. Their national summit, which convened virtually in April, 2021, can be viewed at: https://www.carecantwait.org/
As all of our contributors to this issue noted, employers have a critical role to play as well. 1 A recent survey indicates that 75% of benefit managers believe that creating a workplace that was more “caregiving friendly” is a factor in attracting and retaining talent. 3 Furthermore, assisting caregivers 50and older to stay in the workforce could increase the GDP in the U.S. by $1.7 trillion by 2030. 7 Through the lens of her own personal caregiving experiences, Jessica Kasten describes how poorly aligned employers offerings for caregiving can be with employees’ needs. She then makes a compelling case for and provides examples of assessments of family caregivers’ needs. Matthew Martin and colleagues provide a detailed rationale and guidance for measuring caregivers’ quality of life. Megan Sowa and Rachel McCann identify several key considerations for employers to support working caregivers, including the need to integrate strategic caregiving programs into corporate diversity, equity, and inclusion and mental health initiatives. Their guidance is particularly relevant given the well-documented inequities in caregiving. 6,8 As is true in most cases, it is critical for leaders and managers to create a culture that supports utilization of caregiver benefits. 1
And if your friend, colleague, loved one, or you are a current or former caregiver, there are opportunities to advance researchers’, employers’, and policy-makers’ understanding of the caregiving experience. The MIT AgeLab has established an online caregiver panel (the CareHive) comprised of approximately 1400 adults who provide or have provided care to another adult. Panel members participate in periodic surveys on a wide range of topics (e.g., technology and caregiver well-being) that the AgeLab is using to advance the evidence-base for the future of care. Current and former caregivers can learn more at agelab.mit.edu/carehive.
Thanks to the outstanding contributions of numerous experts, this issue is brimming with useful and timely data on demographic trends, practical suggestions, and helpful resources for caregivers in organizations of all sizes. Let’s not waste a moment putting them to good use to create more thoughtful and comprehensive policies and programs to support those who so tirelessly care for others.