Epidemiologist on Being Her Father’s Caregiver

When most people are asked to identify a celebration that takes place in November, they usually reply, “Thanksgiving!” Few people know that November is National Family Caregivers Month. In fact, most people are unaware of what caregiving entails, unless they are caregivers themselves or know someone who is. This lack of recognition prompted researchers in the 1970s and 1980s to call caregivers “the hidden patients.” They are defined by the assistance they provide to family members and friends with disabilities and health problems, but they are unpaid for this assistance (this is what distinguishes caregivers from home health aides and others who are paid for helping someone with instrumental and basic activities of daily living, or I/ADLs, such as transportation or bathing). Most importantly, caregivers are termed “hidden patients” because their distress related to caregiving is ignored by the physicians who are treating their care recipients.

Despite the public’s general lack of awareness of caregivers, an estimated 39.8 million adults, or 16.6 percent of the US adult population, provided unpaid help with I/ADLs to a family member, neighbor, or friend in 2015. Of these caregivers, 34.2 million provided assistance to someone over age 50, and 22 percent of those were caring for someone with dementia. The common perception is that caregiving is stressful and will have deleterious effects on the caregiver’s mental and physical health. As someone who was a caregiver for many years, I can attest that caregiving can be very stressful. This is because of the physical and emotional aspects of caregiving tasks, neurodegenerative disorders such as dementia that require caregiving and the unpredictable nature of these diseases, and the time commitment (22 percent of caregivers reported doing caregiving activities at least 40 hours a week, and 25 percent had been in the role for at least five years). As a researcher in the field of caregiving, I consistently find that caregivers are more stressed than non-caregivers, scoring higher on self-reported measures and stress-related biomarkers. Yet, there is no epidemiologic evidence that caregiving increases the risk of health decline. In fact, virtually all population-based studies, including ours, have found better health outcomes in caregivers than non-caregivers on a variety of indicators, including mortality, cognitive performance, and incidence of frailty.

How do I reconcile the epidemiologic evidence that caregivers have better health outcomes with my experience as a caregiver? Do the results of epidemiologic studies imply that we should devote fewer resources to help caregivers deal with their psychological stress?

The epidemiologic evidence probably reflects the “Healthy Caregiver Hypothesis” as well as rigorous study designs. That is, caregivers are likely healthier than non-caregivers because they have to be healthy enough to take on caregiving responsibilities. Caregiving activities may keep them physically and cognitively fit. Those caregivers whose health suffers may stop caregiving and are therefore not included in study samples or are categorized as “non-caregivers” (we exclude persons who have stopped caregiving in the past two years in order to prevent potential bias). In contrast to early studies that used convenience samples, often recruiting caregivers from Alzheimer’s disease associations and non-caregivers from community volunteers, recent studies have recruited caregivers and non-caregivers from the same source, used operational definitions to categorize participants as caregivers or non-caregivers, and paid more attention to adjusting for confounders. These studies still find higher stress in caregivers, which is important to address because of its adverse effects on health.

My personal experience showed me the disconnect between being a caregiver and doing epidemiologic research on caregiving. It opened my eyes to the inadequacies of the health care system in dealing with family caregivers, to caregiving-related stresses that are not addressed by epidemiologic studies, and to appreciating relationships with my family that I would not have had if my sister and I had not been caregivers to our father. As a researcher, I focus on the caregiver’s stress associated with performing I/ADL tasks for the care recipient. But the most stressful parts of caregiving for me and my sister were our interactions with the health care system, such as difficulties bringing my father to a doctor’s appointment as his dementia progressed, and not being able to substitute for my sister when she needed a break because the personal care agency’s computer system allowed for only one caregiver to be on record. In our research, we use a standardized measure to assess how much the care recipient’s dementia symptoms disturb the caregiver. While my dad’s symptoms were certainly upsetting to me and my sister, it was far more stressful for us when we faced moving my dad to a dementia unit because we disagreed on what to do. I subsequently learned that conflict among siblings is a major source of stress for caregivers to a parent, and that siblings experience less stress if the family has discussed caregiving preferences before the parent needs help. Epidemiologic studies do not address these aspects of caregiving. To my knowledge, families get little help to guide them through these conversations. Studies as well as education in these areas might improve the lives of caregivers and their care recipients.

Our experience as caregivers brought my sister and me closer, introduced us to some of the most generous people we have ever known, and taught us about compassion. Instead of placing my dad in a dementia unit, we arranged for home hospice. For the last three months of my dad’s life, our hospice team ensured that he had all the care he needed. They always asked how my sister and I were doing; we were never “hidden patients.” These positive aspects of caregiving are seldom addressed in research studies, yet many people find them equally important as the negative aspects of caregiving.

The caregiver as “hidden patient” will probably diminish as increasingly more people become caregivers due to the aging of the population and the increasing prevalence of conditions such as Alzheimer’s disease. Resources will be needed to help this growing population deal with caregiving stress, get respite, and become educated about their care recipient’s condition so that they can better predict what is needed. Which interventions will work? Randomized trials of caregiving interventions find small–medium effects. Internet-based interventions hold promise because they are easy for caregivers to access. General stress-reduction programs, such as Mindfulness-Based Stress Reduction, have resulted in improved psychological well-being in caregivers. Such resources may make it easier for future caregivers. Meanwhile, as Thanksgiving approaches and people gather with family and friends, it may be a good time to acknowledge the work of caregivers, and perhaps plan our conversations about caregiving within our own families.

Lisa Fredman is professor and associate chair of epidemiology at Boston University’s School of Public Health.