Caregiving As a Human Rights Issue

By Carol Zernial
WellMed Charitable Foundation Executive Director

Caring for a family member or friend is an act of love and giving back. But the cost to the family caregiver, the person providing the care, can be high. In October 2016, Lucy Barylak and Nancy Guberman raised questions about the human rights of caregivers in Canada compared to the Universal Declaration of Human rights, passed by the United Nations in 1948.

At the 2017 Aging in America Conference in Chicago, the WellMed Charitable Foundation raised this issue for caregivers in the United States joined by our colleagues, Lucy Barylak from Montreal, and Dr. Lyda Arrevelo-Flechas from the University of Texas Health Science Center at San Antonio.

Caregiver rights, which tend to focus on giving ourselves permission to take care of ourselves, are not the same thing as human rights. What are the human rights not guaranteed to family caregivers?

» The right to work

» The right to rest and leisure

» The right to an adequate standard of living for the caregiver and her family

Holding down a job becomes difficult when caregiving stretches five to ten years, and becomes increasingly demanding. Today, the primary mechanism for the protection of working caregivers is the Family Medical Leave Act. It provides up to 12 weeks of unpaid leave for the care of immediate family members, but 88% of workers aren’t covered under the law. Working caregivers can’t afford time off with no pay.

Due to lack of job flexibility, almost 40% of caregivers quit their jobs to provide care.

Sixty percent of family caregivers who are working full or part-time provide up to 62 hours of caregiving each week. Not much leisure time is left.

Caregivers can spend almost half their income on expenses related to care of their loved one. AARP reports nearly 70% of family caregivers use their own money to care for loved ones, and many feel financially strained. MetLife estimates a caregiver who leaves the work force loses an average of $303,800 in wages and retirement.

What are some of the root causes that drive up the need for family caregiving?

Americans lack universal health care coverage, meaning that not everyone in the United States is guaranteed access to basic medical care. Because so many of us have to wait for coverage under Medicare at age 65, we reach old age in poorer health than necessary.

We also lack a comprehensive system of long-term services and supports. Currently, our system is basically 100% private pay or 100% public pay. Individuals are required to spend down to poverty, often pulling the caregiving family down with it.

For the first time in history, we have an aging boom combined with a longevity boom.

Unfortunately, age is the single biggest risk factor for a myriad of chronic diseases, including Alzheimer’s disease. The 5.5 million people with Alzheimer’s today will ultimately grow to 16 million by 2050. This means that someone will be diagnosed with Alzheimer’s every 66 seconds. Because there is no cure or effective treatment for Alzheimer’s, this disease alone could overwhelm the fragile system of family caregiving.

As we move ahead, it is important to reframe caregiving in the U.S. as a human rights issue. We must evaluate if proposed policies for health and human services go far enough to protect the right to work, right to leisure and right to a standard of living.

Most Americans are proud to have a role in returning the care that parents once provided to them. However, caregivers should not be expected to jeopardize their health, the welfare of their families, or their own financial solvency in old age.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.