Family Caregiving: Many Rewards But High Costs

In the United States, researchers estimated that about 44 million people (age 18 or older) were unpaid caregivers to an adult family member or friend (age 50 years or older). Seventy percent of these caregivers are women. Daughters and wives (or partners) are the most important helpers, although other family caregiving members—husbands, daughters-in-law, sons, and grandchildren—can play significant roles.

About 9 out of 10 married frail older adults receive help from a spouse, and more than 50% of unmarried frail older adults receive help from their daughters. The average U.S. caregiver is a White, married, and employed woman in her 50s or early 60s who has provided 19 hours of care weekly to one relative for an average of 4 years. The caregiving experiences of women are often repeated throughout their lifetimes, as they care for a parent, then their older husbands, and then themselves (Figure 7.1).

It bears repeating that caregiving is tough work, both physically and emotionally. It is easy for family caregivers to become overwhelmed with the sheer number of responsibilities, especially when they lack emotional support or financial resources, insurance coverage, or government assistance to get help from professionals. A good deal of caregiving involves physically exhausting and strenuous hands-on care. When compared with non-caregivers with the same demographics, caregivers consistently score lower on a variety of physical health indicators. They are more likely to incur physical injuries (e.g., muscle and ligament strains), have higher blood pressure, use more medications, show symptoms of poorer eating habits, be more sleep deprived, and exercise less frequently. Men caring for their wives have a higher stroke risk, particularly African-Americans. 

Caregivers fear that they will miss seeing danger signs of their loved one’s decline or will be absent when an emergency happens (e.g., a fall or onset of a stroke). Especially when they are providing more complex health-related services, they are on call several times a day, and because of their inexperience and lack of training, they are always afraid of making mistakes and harming their loved ones.

Caregivers generally rate their own health as poor and report feeling burned out, emotionally drained, and with little free time for themselves. They are more likely to report these symptoms the longer they provide care, particularly when they assist older people with dementia. They have a higher emergency room and hospital utilization rates and see doctors more frequently. As one commentator put it, “A family caregiver may ultimately become sicker than the person they are caring for.” One study even found that caregivers have elevated mortality rates.

Adult children get worn down for another reason. Because less than 15% live with their impaired parents, they must travel significant distances to reach their dwellings. This is especially true for caregivers helping loved ones in rural areas. They initially believe, somewhat naively, that they can make these visits at regular times that fit their schedules. They quickly learn that they cannot neatly compartmentalize their caring duties into a one-time slot of the day or certain days of the week. Dear Abby letter says it all:

Dear Abby: My beautiful, loving mother is now in the middle stages of Alzheimer’s disease. This cruel disease has robbed her of her memories as well as the ability to reason and function. She held my hand through every trial and triumph in my life, and I want to support her the way she has always supported me. But caring for Mama is becoming more and more difficult as she drifts further and further away. Not only am I caring for my mother, but I also have a career and three children. I have so little time to myself. From the financial considerations to the behavioral challenges to safety concerns, I can’t keep my head above water. Please tell me what to do.

—Overwhelmed in Cincinnati

Excerpts from Stephen M. Golant, Aging in the Right Place. Health Professions Press, 2015, p. 150, pp.160-161.

Stephen M. Golant, Ph.D., is a professor at the University of Florida (Gainesville). His research focuses on the housing, community, mobility, transportation, and long-term care needs of older adult populations and he writes and lectures extensively on these topics.