Over the last few years in the United States, nearly one in five adults, or about 45 million, have provided regular care to another adult (from AARP). As the population gets older, the number of caregivers in the US will increase dramatically, and we are wildly unprepared for these changes. Virtually everyone will find themselves in the position of providing care to a loved one for an extended period of time, and yet caregiving is rarely planned for or discussed. In addition, my own research and that of other scholars shows that caregiving, particularly intensive care work like that provided to those with dementia, is associated with accelerated frailty and cognitive decline. Part of our lack of interest in talking about or preparing for caregiving comes from a place of fear – we don’t like to consider the idea that our parents or our spouses/partners might someday become frail and need care. But perhaps more importantly, most people do not really know what caregiving entails.
My own experiences with caregiving occurred at a much younger age than most – I helped care for both of my grandmothers and my mother while also completing my undergraduate degree, two of whom passed away during only a short 13 month stretch — my grandmother on my 20th birthday and my mother just following my 21st. I was lucky. I wasn’t alone in providing this care – my family and I worked together and we had health insurance, and support from hospice services. I only missed a week of college classes. But, most Americans are unable to afford to hire someone to help provide care, and are stuck, often in a crisis situation, doing the best they can to take care of the people they love. A nursing home costs an average of $100,000 per year today, and homecare and other less intensive care options are only marginally less expensive. Given how little the vast majority of Americans have saved for retirement, only a sliver of the US population is able to afford such care, particularly if an individual needs care for several years. Medicaid is playing an increasingly important role in funding formal long-term care, and this bill is only going to increase. Despite these costs, the vast majority of care in the US is provided by unpaid family members, many of whom pay significant out of pocket expenses while also modifying their working lives, and suffering from loss of income in the process. It is no wonder extensive caregiving is associated with accelerated mortality, and increased morbidity and mental health problems.
A group that faces some of the greatest challenges are African Americans, who provide care to sicker relatives, for longer periods, face more health problems themselves while doing so, and have less wealth to draw on for supports than their white counterparts. Despite these statistics, there is little research examining the unique problems they face, or how to narrow these disparities. In the Spring of 2018, I began a pilot study on African American caregivers in Tallahassee, focusing on those with the greatest potential challenges – those caring for someone with Alzheimer’s Disease/Dementia or other major health problems. Several students have collected data, and we will conclude data collection and reveal preliminary results in 2019. Although I cannot share any major findings yet, it is clear that the unpaid work our African American community is providing to very frail members of our society is significant and often invisible.
In the Spring semester of 2018, I also taught a class to a mix of undergraduate and graduate students in the Sociology department called “Caregiving in Later Life.” Although a few of the students in the class had experienced caregiving in their families first-hand, most came to the class with little information or experiences to draw from. However, the students read three to four research studies a week and we discussed them together in class, they completed interviews with older adult caregivers, and they developed research papers. At the conclusion of the course, they had all become frustrated by the systems in place making things so difficult for our nation’s caregivers. During our final class, I decided to ask them a question: “If you had a magic wand that could be used to improve the world with respect to caregiving, what would you do?” My students offered such insight, with similar observations as many leading caregiving researchers, and I provide a selection of their paraphrased comments here (with their permission):
- All caregivers should have access to respite care and other supportive services. Currently only the very wealthy and the very poor have access, and if caregivers have resources they need to manage the constant stress of caregiving, they are less likely to experience such significant health problems.
- Work environments need to support workers that are providing care to a loved one, such as flexible hours, reduced hours, or options to take leaves of absence.
- We need a new model for healthcare that allows not only patients to be supported, but ways for caregivers to receive care as well. Insurance companies reimburse for treatment of those insured, and yet there is solid evidence showing that the health of the caregiver plays a critical role in the wellbeing of the care recipient.
- We need to appropriately compensate and value those who serve and care for elderly members of society – social workers, geriatricians, geriatric nurses, formal care providers. Without major changes that entice people to go into these professions, we have no chance of supporting the future needs of our aging population.
Those who study aging have known for decades that the effects of population aging are most visible in the growing proportion of the population requiring everyday care and assistance, usually by family members. If we aspire to be a society that values families, we need to do a better job supporting the needs of caregivers, particularly those who are the most vulnerable. I hope my own research will help reveal some of the most important ways that we can help caregivers continue to do the important work of caring for our nation’s elders, without experiencing major financial and health set-backs in the process.
Dr. Dawn Carr is an assistant professor in the Department of Sociology and a research associate in the Pepper Institute on Aging and Public Policy. She researches health and aging, volunteering, and caregiving.
The feature image is from the AARP website.