Family Caregiving: An Essential Resource for Older Adults

It is estimated that somewhere between 18 million (Schulz & Eden, 2016) and 53 million (AARP, 2020) Americans provide care to an older adult with a disability who needs some type of help with basic living needs.  This care can include help with grooming, bathing, or dressing; assistance with mobility or preparing meals, or help with managing finances or medical appointments.  Most older adults with dementia, limited physical capabilities, or major sensory problems depend on family members or close friends for this kind help on a regular basis.

Substantial research over the past 30+ years has examined the health and well-being of family caregivers.  Many of these studies have been inspired by a stress process model of caregiving (Pearlin et al., 1990), which emphasizes that caregiving can lead to both primary stressors that are directly associated with care delivery and secondary stressors that are indirect consequences of caregiving, such as reduced opportunities for leisure activities.  This model is frequently invoked as part of an advisory narrative – that the stress of caregiving can be substantial and can lead to health problems for the caregivers (Pinquart & Sörensen, 2003).

More recently, however, researchers have countered this stress process narrative with alternative perspectives that emphasize the potential health benefits of prosocial helping behaviors.  Research on volunteerism and social support has shown that people who help others are generally healthier themselves (Brown and Brown, 2015; Okun et al., 2013), remaining more active in their lives and finding purpose in the positive influences they have on others.  Perhaps caregiving can also have this beneficial effect, much like volunteering within one’s own family or social circle.

These competing narratives may both be true to some extent.  Most caregivers do report positive benefits associated with their caregiving experiences (Roth et al., 2015), but a small minority of caregivers also find the stress of caregiving to be quite high.  A prominent early study concluded that the stress of caregiving may even be associated with higher mortality rates for caregivers (Schulz and Beach, 1999), but at least eight subsequent studies, with larger samples and longer follow-up periods, have found just the opposite pattern — that caregivers live longer or have lower mortality rates than several non-caregiving comparison samples (Roth et al., 2015; Mehri et al., 2021).  In one follow-up study, caregivers were found to have higher rates of depressive symptoms than non-caregivers, but lived longer anyway (Roth et al., 2018), suggesting the caregivers benefitted from a resilience to stress due to their prosocial helping activities, similar to resilience benefits of older adults who are active in volunteer organizations.

Caregiving, therefore, can be stressful, but that stress is usually not dangerous or leading to life-threatening illnesses.  Caregiving, like parenting, is a normal and usually healthy relationship within families – sometimes stressful, but more often rewarding and fulfilling, and something that should be encouraged.  More evidence is needed to understand how frailty might impact caregiving burden (Ringer et al., 2017), but even for highly vulnerable “frail” persons, the benefits of providing support may likely outweigh any detrimental effects.

The real threat to the caregiving resource for older adults in the years to come is a looming shortage in number of traditional family caregivers.  In the past, older adults have typically depended on spouses or adult children for this type of care, but, because marriage rates and birth rates have steadily declined over the past several decades, there are now fewer spouses and fewer adult children available to take on these roles.  Caregiving networks, organized through faith-based groups and other community organizations, may be part of the solution.  We should all start looking around for family members and friends whom we can help, even if they might be outside of our own traditional nuclear families.  If anything, the research convincingly shows that this type of helping behavior is not only good for those who are receiving care, but also for the helper as well.    

Intergenerational African American Family

Self-Efficacy as a Tool for Older Adults to Cope with Coronavirus

JS is a 72 year-old caregiver to her 75 year-old husband with advanced heart failure.  She usually brings him in to clinic every 3 months.  In April, she was able to conduct a telemedicine visit with the heart failure clinic. She said her grand-daughter had face-timed with her from out of state and talked her through using the computer to connect to the electronic record, but she had to search for her glasses to read the weight chart to the provider, as she could not scan and upload it. And she got flustered manipulating the camera to show his degree of edema. She requested refills but, she expressed a sincere fear of going to the pharmacy to pick-up the medications, where there may be sick people.  JS is not alone in the adaptations she is making or the stress she feels from having to do so.  Even formerly routine activities of daily living like grocery shopping feel oddly intense, full of new rules and routines. This is not normal time; this is pandemic time, and the impacts on health are likely to be significant even in those who never get COVID-19.

How do we as clinicians help older adults manage the stress arising from this pandemic?  Researchers have shown that improving “self-efficacy” may help. Self-efficacy is confidence to perform well at specific tasks or in specific domains (Bandura, 2001). No one has any experience mastering the adaptations to stay-at-home orders, but it is not surprising that people with better personal resources and confidence are more likely to successfully solve new problems.  Self-efficacy has been studied extensively as a mechanism to improve health outcomes and well-being (Marks et al., 2005). For example, Lorig and colleagues designed a self-management program for those with chronic disease built on self-efficacy principles and showed 6 month improvements in exercise, well-being, fatigue, pain and provider communication (Lorig et al., 1999). In a sample of 831 participants who completed the Lorig self-management program, there was a 2-year reduction healthcare utilization and health distress (Lorig et al., 2001). Unfortunately, at the same time that disruptions are requiring high levels of self-efficacy, the social isolation, financial stresses, lack of access to fresh food and medicine and exercise, are all working against the easy adaptation to new conditions.

There are four ways clinicians can work with patients to build more self-efficacy:

  1. Personal Mastery.  Past experiences influence confidence to perform the same task successfully today. One such task is coping with sorrow and stress.  Clinicians can reflect on the past with patients, help them recall their prior positive ways of coping and apply them to today’s situation. In addition, a sense of mastery can be built for a new task by finding parallels with old tasks. Ms. Julia has always been a strong advocate for her husband. She asks questions, takes notes, brings everything in a binder with her to the clinic. Reminding her that she figured out what was needed in clinic and that next time she will know what she needs for the telemedicine visit reassured her. We planned another visit in a short time interval so that she could practice.   Everyone has mastery in their lives. Find it, remember it and apply it now.
  2. Positive Modeling. This is the observation of how other people have performed a task well. This is particularly difficult for older adults who are frequently further isolated during the stay-at-home conditions by their lack of facility with the technology that would allow them to stay connected to their social network. It is exactly the ability to master technology that is the skill which they need help (and coaching will help)!  But people stayed in touch before there were iPads, or even phones. My teenager got a letter, on real stationary, from a friend the other day, and felt so connected by that, she even wrote back! JS and her husband have an active local church group, and talking about those friends she realized that many might be able to help her figure out how to go to the pharmacy and grocery store safely. Modeling expands personal mastery through social learning.
  3. Coaching.  Coaches inspire and encourage and for older adults trying to use technology, some of the best coaches will be from younger generations, just as JS’s grand-daughter who helped her, with the added benefit of decreasing the social isolation during the coaching session. This coaching can go both ways in such situations. The act of coaching will also improve self-efficacy and reinforce the sense of self-mastery discussed above.  Although knowledge about coronavirus is evolving, the stress induced by the presence of a pandemic- the social isolation, the financial strain, the health fears- are not new and many older adults will have guidance to offer younger family members coping with losses like sports seasons and school graduations, the social fun of being a kid. Asking older adults about their families and experiences can help them recognize the support they have to offer as well as receive.
  4. Listening to the Body. The body itself provides feedback via the stress response networks, reflecting the confidence a person has to positively address a stress experience.  Sometimes simply acknowledging the body’s own contribution to emotions and self-efficacy is enough to release the physical sensation (like stomach pain) and move on.  Tools to help acknowledge and integrate the body’s sensations include a good cry, sleep, meditation and prayer, journaling, talking it out and exercise.

Improving self-efficacy will look different for each person. And this pandemic is not fair. Structural changes are needed to address all the inequities and challenges of this pandemic that are not impacted by our individual or collective agency and ability to cope.

The good news is that increasing self-efficacy is possible at any age. Spending a little time during clinical visits acknowledging each patients’ strengths and masteries and help identify sources for modeling and coaching, can go a long way toward improving well-being and maintaining health status for older adults during this crisis.

Melissa deCardi Hladek is an Assistant Professor at Johns Hopkins University who studies stress and resilience in the context of aging.


Bandura, A. (2001). Social cognitive theory: an agentic perspective. Annual Review of Psychology, 52, 1–26. 

Lorig, K. R., Ritter, P., Stewart, A. L., Sobel, D. S., Brown, B. W., Bandura, A., Gonzalez, V. M., Laurent, D. D., & Holman, H. R. (2001). Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical Care, 39(11), 1217–1223. 

Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, B. W., Bandura, A., Ritter, P., Gonzalez, V. M., Laurent, D. D., & Holman, H. R. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Medical Care, 37(1), 5–14. 

Marks, R., Allegrante, J. P., & Lorig, K. (2005). A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part II). Health Promotion Practice, 6(2), 148–156.