4.2 What are the roles of family caregivers and direct care workers?


Family caregivers provide voluntary and unpaid services for frail Medicare beneficiaries. But relying heavily on family caregivers is already difficult, and will become much more so as the numbers of elders needing LTSS doubles in the next quarter century, and the number and availability of family caregivers declines steeply. PBS NewsHour released a telling infographic: “The $234 billion job that goes unpaid,” which characterizes the context of family caregiving to older adults. If family caregiving were a federal agency, it would be the fifth largest.[121] An AARP report tallied unpaid caregiving as being worth $470 billion in 2013.[122] In the U.S., family and friends continue to provide most LTSS, providing more than three-quarters of the overall caregiving time for older adults living in the community.[123] The availability of family caregivers is projected to decrease rapidly as the Boomer generation ages into the years of having a high likelihood of being frail.[124] Not only are families small and dispersed, but also spouses and children of the Boomers generally do not have adequate retirement security for themselves and must keep working if they can, and some will themselves be old enough to have limitations in their capabilities to provide heavy care. Any plan for the future care of frail elderly people is going to have to consider the prospects for making it easier for family members to serve and also for encouraging neighborly volunteering to help with socialization, minor home repairs, and food delivery and preparation.[125],[126]

Although caregivers often find the experience of helping others to be a rewarding one, most pay a substantial physical, emotional and financial toll for their effort. Although men increasingly serve as caregivers, most caregivers are midlife and older women. Anyone who takes on substantial volunteer caregiving can compromise their own well-being. For example, those who leave the workforce to care for another adult lose hundreds of thousands of dollars in income, retirement contributions, and Social Security. One estimate calculated that the average sum is $303,880 per person.[127] The work includes the stress of making decisions that have substantial effects on the lives of loved ones, and it includes taking responsibility for intimate and technical services that are ordinarily relegated to persons who are trained and licensed. More than half of family caregivers to persons over age 65 have to provide complex medical care to loved ones–usually, with little or no training as they try to manage medications, clean wounds, change IVs, replace catheters, and more.[128]

Despite their tremendous responsibility for making the plan work, caregivers are seldom integrated into the care plan itself. The MediCaring approach aims to change that dynamic, by identifying, recognizing, and supporting caregivers, and engaging them in development of a comprehensive care plan with the frail elder they serve. Care teams in MediCaring communities will set out to understand the caregiver’s situation and their skills and capacity to provide needed services. Among the services that many communities may come to prioritize will be easier access to respite care, so that family caregivers can have a break and take care of health or personal matters.

The investment in community needs that a MediCaring Community will provide will shape the roles of family and friend caregivers. For example, when a MediCaring Community decides to supplement personal care for frail elders in their own homes with paid caregiving and part-day congregate services, family and friend caregivers will face fewer physically taxing tasks such as bathing and assistance with eating. Freeing up family and friends from some often difficult and contentious daily care demands will allow them to focus on providing affection and life satisfaction activities. Support from others can be important in reducing stress, increasing functioning, mitigating isolation and loneliness, and reducing depression and anxiety.[129] Perceived positive support from family and friends is important to everyone, but especially to a frail elder with limited options.[130] Strong social support helps a frail elder still feel valued and appreciated as a human being. Essentially, social support protects or “buffers” the elder from the stressful vicissitudes of frailty. Furthermore, being in a supportive and well-designed care delivery system would relieve the elder and the family caregiver of the constant anxiety and need to sort out and navigate the uncertain availability and suitability of supportive programs in the area.

Not only will MediCaring Communities provide supports to family caregivers, but the local advocacy that will arise to gather the evidence for enhanced investment in caregiver support could be part of a larger effort to generate political action on behalf of family caregiving. Local groups that self-organize and develop agendas will likely converge upon a few key issues and take them to state and federal levels for backing as well as to the MediCaring Community locally. This would be a major step forward for eldercare, since advocacy on behalf of the needs of frail elders has mostly focused on nursing home shortcomings and Medicare coverage rules, rather than on broader issues necessary to ensure reliably high-quality and affordable services.

Providing personal care to millions of frail elders is going to require major changes in society’s institutions and expectations. Not only will family and friend caregiving change, but so will the paid personal care workforce. This large cadre of (mostly) women working at low-paying and low-prestige jobs has historically been thoroughly ignored and marginalized by having few career opportunities, and until recently, none of the usual labor protections such as minimum wage, overtime, sick leave, and paid vacations.[131] Yet, the numbers of direct care workers will have to grow dramatically with the rise in the numbers of frail elders and the paucity of family caregivers. Already, the personal care workforce includes more than three million people, more than half of whom are women of color.[132],[133] With needs for that workforce set to double in the next dozen years—and requiring training and support in order to offer good-quality, consistent care—social policy must require that these workers earn reasonable wages and benefits and be able to provide for their own retirement and to recover from injuries at work. Recently, the Department of Labor issued its regulatory revision of the companionship exemption, which had previously excluded these workers from the basic labor protections provided by the Fair Labor Standards Act. After being held up by litigation for nearly a year, the Department of Labor began full enforcement of the regulation in January of 2016.[134]

Policymakers have been quite concerned with the risks of fraud and abuse (mainly billing for services not provided) in home care, where direct supervision and monitoring is challenging. Video surveillance and other monitoring and accountability techniques are increasingly available (e.g., video clocking in and out on the internet for each visit made by an aide). These techniques may make concerns for fraud and abuse less prominent over time. The family or an agency could check on the presence and many of the activities of the home health aide to detect non-attendance, troubling interpersonal relationships, and other problems. Then, public attention could focus on recruiting people with helpful skills and attitudes, giving them support and decent wages, and making it possible for people to be proud to be in this line of work.

[121] (Shell 2013)

[122] (Reinhard, et al. 2015)

[123] (Freedman and Spillman 2014)

[124] (Redfoot, Feinberg and Houser 2013)

[125] (National Care Corps Act of 2015, H.R.2668 2015)

[126] (Caregiver Corps Act of 2014, S.2842 2014)

[127] (MetLife Mature Market Institute 2011)

[128] (Spillman, et al. 2014)

[129] (Nicholson 2012)

[130] (Potts 1997)

[131] (Marquand 2015)

[132] (Marquand 2015)

[133] (PHI National 2013)

[134] (Department of Labor n.d.)

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