Caregiving Crisis: The Financial and Emotional Burden on Families

Caregiving is an experience that many families are facing today, often unexpectedly. For Anita Robinson, a former senior partner at a tech firm in Atlanta, the decision to take early retirement was driven by her commitment to her family. At 57, after dedicating over three decades to her career, she found herself in the role of caregiver for her 83-year-old mother, who is blind, suffers from dementia, and requires full-time care. “I just couldn’t in good conscience leave her,” Robinson shared, highlighting the emotional weight that comes with such responsibilities.

The Rising Tide of Caregiving Responsibilities

Robinson’s experience is not unique. America is facing a caregiving crisis, with an astonishing 63 million Americans—nearly 1 in 4 adults—providing care to an adult with health or functional needs or to a child with a serious medical condition or disability. This represents a significant increase from 53 million in 2020 and 43.5 million a decade ago, according to a new report from AARP and the National Alliance for Caregiving.

The Financial Impact of Caregiving

“What’s even more troubling is what caregiving costs people,” noted AARP CEO Myechia Minter-Jordan. Nearly half of caregivers struggle with significant financial factors. The data reveals the following:

• More than 20% of caregivers have taken on additional debt.
• About a third have depleted short-term savings.
• 30% report stopping their savings altogether.
• Approximately 20% are leaving bills unpaid or paying them late.

Balancing Work and Caregiving

Alongside financial burdens, caregivers face challenges in their professional lives. More than 60% are balancing caregiving responsibilities while still employed. Many report reducing hours, taking unpaid leave, or quitting their jobs entirely, as was the case for Robinson. “There are a number of factors driving the financial strain. It’s increasingly challenging for caregivers to access affordable, quality supports and services that are needed to provide adequate care,” Minter-Jordan explained.

Seeking Support Through Legislation

Robinson initially took advantage of the Family and Medical Leave Act (FMLA), which provides 12 weeks of unpaid, job-protected leave for specified family and medical reasons, along with continued health insurance coverage. However, after her leave, her company required employees to return to the office with limited flexibility. “It was just not an environment conducive for me to continue to work,” she said.

Living Off Savings and Planning for the Future

Currently, Robinson is relying on her savings and has withdrawn a small pension to manage her finances. “That incremental piece has been a big help with no income coming in,” she noted. However, she recognizes that she is too young to retire fully. “I do know that I will have to return to work at some point to keep up with healthcare costs and increasing cost-of-living. I don’t want to deplete my retirement savings,” she said.

Staying Relevant in the Workforce

In preparation for future employment, Robinson is engaging in pro bono projects and has taken on an unpaid board position at a nonprofit that allows her to work remotely. “I’m still active so that it won’t look to a potential employer that I just went off into vacation mode for a few years and didn’t do anything,” she explained.

The Demographics of Caregivers

The average caregiver is 51 years old and often lives with the person they care for. Women represent the majority (61%) of caregivers. “Women face several obstacles that jeopardize their retirement security—they live longer and need more income,” emphasized Cindy Hounsell, founder of the Women’s Institute for a Secure Retirement (WISER). The responsibilities of caregiving often lead to reduced savings, complicating their financial recovery.

The Challenge of Career Advancement

Caregiving responsibilities can hinder career advancement. The unpredictable nature of caregiving often conflicts with the demands of a traditional 9 to 5 job. Many caregivers express a willingness to change jobs for better support, even if it means shifting to less meaningful work or relocating. However, there’s often a reluctance to disclose their caregiver status due to fear of stigma or negative workplace repercussions.

Understanding the Personal and Structural Impact of Caregiving

“Caregiving has emerged as one of the most defining challenges facing families, and one of the most disruptive forces shaping the modern workforce,” stated Lindsay Jurist-Rosner, CEO of a caregiving support firm. The emotional weight and complexity of caregiving continue to grow, affecting employees and families alike.

A Personal Reflection on Caregiving

Personally, I can relate to the struggle of balancing work and caregiving. When I was self-employed a few years ago, I cared for my mother with dementia. The stress was overwhelming, and I often worked late into the night after her needs were met. I never disclosed my situation to clients; I simply focused on my work.

The Future of Caregiving and Employment

As the challenges of caregiving become more universal, it is crucial for employers and policymakers to recognize and address the needs of caregivers. The rising cost, complexity, and emotional strain associated with caregiving require comprehensive support and understanding from the workplace and the wider community.