Woman helping man in wheelchair at home.

Family Caregivers’ Critical, Overlooked Role in Our Health Care Workforce

By Judith Iwanski and Laurance Stuntz

Family caregivers hold a critical role in the health care system and the overall U.S. economy, but do not receive adequate support and recognition for these contributions.

These interrelated phenomena have been brought to the fore by the COVID-19 pandemic.

According to the 2020 AARP/The National Alliance of Caregivers Report, Caregiving in the U.S. 2020, more than 53 million Americans provide unpaid care to an adult or a child with special needs. The total economic value of this care was estimated at more than $470 billion in 2019.

The sudden onset of the pandemic caused many more people to be thrust into the role of caregiver for newly socially isolated elders whose support structure was disrupted by COVID-19. Others took in family members they felt unsafe leaving in congregate housing, assisted living, and nursing homes.

Since the onset of the COVID-19 pandemic, unpaid adult caregivers reported disproportionately worse mental health outcomes, increased substance use, and elevated suicidal ideation, according to the U.S. Centers for Disease Control and Prevention. During the pandemic, caregivers have reported seriously considering suicide at a rate ten times higher than that of non-caregivers. Additionally, delaying or avoiding urgent or emergency care during the pandemic is five times more common for unpaid caregivers and avoiding routine care is one and a half times more common for unpaid caregivers than non-caregivers.

To help these caregivers, we need a cultural shift that allows us all to recognize, honor, and support the family caregivers in our daily community and work lives. To address these imperatives, we are proud to be working with public and private partners across the state through the activities of the Mass Caregiving Initiative. The Mass Caregiving Initiative is a program of the MassTech Collaborative, a quasi-public state economic development agency here in the Commonwealth.

Through the initiative, we have three focus areas:

Employers: The Caregiving in the U.S. 2020 report found that that six in 10 caregivers report working while caregiving and 61% have experienced at least one work-related impact. One in 10 working caregivers have had to give up work entirely or retire early to fully handle their caregiving responsibilities. The increased turnover, absenteeism, and presenteeism cost employers in Massachusetts an estimated $982 million per year according to a 2017 study.

We need to offer active support to our family caregivers. Many employers do this already through employee assistance programs. In the Commonwealth of Massachusetts, a new Paid Family Leave Act allows caregivers to take paid time off.

We can do better and go further with this effort, by training managers to work closely with caregivers on their teams, by instituting supportive structures through our communities, and by making sure that caregivers are aware of all the state and local resources that are available to them.

A 2019 report from Harvard Business School offers several recommendations for employers about ways that they can develop a culture of caregiving to support their employees and alleviate associated costs. One of the first recommendations on this front is that employers should conduct, and regularly update, a care census of their employees that captures the care needs of their workforce.

In order to educate employers and maximize these recommendations, we launched the Massachusetts Caregiver Coalition in 2019. Together with leaders from business, health care, education, and state government we are assessing – and addressing – the needs of unpaid caregivers who work across the Commonwealth. The Coalition’s mission is to encourage employers to acknowledge family caregiving as a critical workforce opportunity and support their fellow employees with their caregiving responsibilities, and we encourage all employers to join us in this effort.

Community: Family caregivers are not only an essential component of the workforce, they are also an essential component of the health care system. States rely heavily on caregivers and the critical supports they provide to millions of older adults and individuals with disabilities. The HHS Economic Impacts of Programs to Support Caregivers: Final Report states that older adults are less likely to enter nursing facilities when they receive help from supporting unpaid caregivers. Without this support from family caregivers, government programs, such as Medicaid, would have to cover some of the costs of additional paid long term services and support, using state and federal funds.

To support caregivers, many states have established services to provide family caregiver support specialists. For example, Massachusetts’ Aging Services Access Points (ASAPs) provide information to caregivers about available services and assist them in gaining access to the services.

It’s important to raise awareness about these services. In partnership with the state Executive Office of Elder Affairs, Mass Home Care, and others, we are working to conduct webinars in 2021 to educate community members and caregivers about the solutions available to them.

Innovation: The number of people in need of care in the United States is expected to reach 117 million by 2020, according to AARP Caregiving Innovation Frontiers. New methods of providing care and support for elderly family members will be necessary to meet the needs of families in the future.

Innovation that supports family caregiving and caregivers can improve the quality of health and quality of life for both the caregiver and the care recipient by reducing the stress, adverse health effects, and financial burdens associated with caregiving. Additionally, innovation should focus on connecting caregivers to community resources and allowing the caregiver to return more easily to the workforce.

At MassTech, we’ve launched an Innovations in Caregiving webinar series to highlight both “high-tech” and “no-tech” ways that people across the country and across the world are using new solutions to support caregivers. For example, innovators such as Seniorlink, Torchlight and Kinto are building tech-enabled solutions that combine expert advice and a digital platform to quickly connect family caregivers to resources, educate them about new situations and caregiving responsibilities, and smooth some of the daunting communication challenges inherent in caregiving.

There are also many innovative non-technical approaches can support caregivers, such as the statewide MassOptions program that provides free support to older adults, adults with disabilities and their caregivers by connecting callers with local Family Caregiver Specialists to provide unbiased information and decision support.

The COVID-19 pandemic has heightened our awareness of the ways that family caregivers impact the health of our economy. As part of the broad recovery from this crisis, we’re excited to work to support caregivers and the people they care for.

Judith Iwanski is the Program Manager for the Massachusetts eHealth Institute at the MassTech Collaborative.

Laurance Stuntz is the Director of the Massachusetts eHealth Institute at the MassTech Collaborative.

This post is part of our digital symposium, In Their Own Words: COVID-19 and the Future of the Health Care Workforce

The Petrie-Flom Center Staff

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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