Informal Caregiving May Be Stressful, But Offers Rewards

It's no mystery that many informal caregivers — individuals who provide unpaid support to family members or friends with illness or disabilities — often feel stressed. After all, they often provide a wide range of care, including emotional support, physical aid like cleaning or helping a loved one move around their home, and financial assistance. Many caregivers also help with health care-related tasks, including coordinating appointments, calling the insurance company and sometimes even doing medical procedures that would once have taken place in a hospital. On top of all that, life doesn't stop: Caregivers have numerous ongoing responsibilities and roles, like working, parenting or keeping their household running.

All of these commitments can add up to an overwhelming situation. If caregivers don't take care of themselves, they can burn out or develop their own health problems.

At first glance, it might seem like caregiving is itself the problem. However, research suggests that it isn't the act of caregiving that contributes to poor quality of life and other health problems among caregivers; rather, the problem is the stress that can result from the multiple roles they play. This distinction is important, because informal caregiving can confer a lot of benefit on the caregiver on top of the benefits for the care recipient. Caregivers often report that caregiving makes them feel good about themselves and provides a sense of purpose. That sense of purpose and responsibility can in turn contribute to better physical and emotional health for the caregivers themselves, making for a better quality of life.

Even if caregivers have a lot on their plate, that does not automatically mean they will feel stressed or overwhelmed. An important piece of the puzzle is how they appraise or perceive their situation. When they have the resources to deal with the challenges presented by caregiving, they may not feel stressed out.

For caregivers who report low levels of stress, other research shows that they may actually have better outcomes than people who do not provide informal care for other, including a lower mortality risk. The caregivers with high levels of stress are the people who are at higher risk for burnout, extreme fatigue, depression and other health problems.

Researchers with the Survey of the Health of Wisconsin asked informal caregivers how much strain they experienced from caregiving and measured their health-related quality of life. The study found that caregivers with low levels of strain had better mental health-related quality of life than non-caregivers. Caregivers with a moderate amount of strain had roughly equivalent levels of mental and physical quality of life as non-caregivers. Only the caregivers with high levels of strain had worse mental or physical health-related quality of life, compared to non-caregivers.

One important consideration is that caregiving stress alone is not to blame for burnout and poor quality of life among some caregivers. Other sources of stress, including their paid employment, interpersonal relationships or financial difficulties, can accumulate and affect overall quality of life. On top of that, how people feel about their stress — if they see it as harmful, or as beneficial — can affect these outcomes. The good news is this dynamic provides a variety of opportunities for caregivers to help themselves.

What can caregivers do? After all, it's hardly possible to eliminate stress or stop being a caregiver. The good news is, there are a lot of resources — respite care, educational classes, support groups, even financial assistance — for unpaid caregivers. In Wisconsin, most caregivers can get information about which resources they are eligible for by contacting their local aging office. Online resources like the Family Care Navigator or in-person connections with hospital social workers, faith leaders or others, can also point caregivers in the right direction. Accessing these resources early – before burnout or health problems set in – can be critical to keeping caregivers and their families happy and healthy.

Caregivers also benefit from taking time to take care of themselves. Research shows that exercise, mindfulness, and a sense of gratitude are all associated with better well-being in family caregivers. Feeling more in control of any area of life may also help. For example, financial coaching can help one get a handle on balancing retirement saving and medical debt. Friends and family can get organized to help their loved ones  with chores and housework. Caregivers must give themselves permission and receive encouragement from others to help take care of themselves.

Only by caring for themselves can caregivers successfully care for others.

Kristin Litzelman, Ph.D., is a state specialist with the University of Wisconsin-Extension Family Living Programs and an assistant professor with the Department of Human Development and Family Studies at UW-Madison.