Healthy "U" April Newsletter
Care for the Caregiver
by Dr. Elizabeth MacDougall Assistant Professor of Psychology
When problems with illness and disability arise in our lives, most of us turn to our families and friends for help. According to the National Alliance for Caregiving, 65.7 million of us served as family caregivers during the past year for ill or disabled relatives. That's 29 percent of U.S. adults. Although men do serve as caregivers, the majority of caregivers in this country are women (53 to 68 percent; Family Caregiver Alliance, 2012). Female caregivers also assist with more personal (and arguably difficult) caregiving tasks - such as toileting and bathing - and they spend more time per week providing care than men (21.9 hours versus 17.4 hours; Family Caregiver Alliance, 2012). In addition, over 60 percent of family caregivers continue to work full or part-time.
When taking on the role of caregiver for a loved one, we tend not to formally identify ourselves as caregivers. Rather, we simply view the practical and financial assistance we provide as part of being in a family. It is not uncommon for caregivers to be so focused on taking care of their loved ones that they fail to recognize the emotional and physical toll that caregiving may be taking on them. They might also feel guilty about feeling burdened or distressed, perhaps thinking that this in some way means they are being disloyal to their loved one. They may fear criticism from others for seeking care for themselves - or they may simply believe that they cannot fit any 'care for the caregiver' into their busy schedules.
As population aging occurs, and especially as the proportion of adults over 85 continues to grow, many more of us will find ourselves in the role of caregiver in the near future. Not only is advanced age a significant risk factor for physical disability and serious cognitive impairment, but most older Americans prefer to remain in their homes with assistance from family or professional caregivers rather than transitioning to an institutional setting. This means that many of us will spend at least some portion of our lives caring for aging loved ones who wish to remain at home for as long as possible.
Mental Health and Physical Health Effects of Caregiving
Psychological research on caregiving began in the 1980s (Zarit, Reever, & Bach-Perterson, 1980). A review of the literature reveals that most of this research investigates the burdens and stress associated with caregiving. Comparing caregivers with non-caregivers, meta-analyses have reported higher levels of depression and more physical health problems in caregivers (Pinquart & Sorensen, 2003; Vitaliano, Zhang & Scanlon, 2003). However, most of these studies use convenience samples comprised of individuals at clinics, in support groups, and other volunteers. Studies that use more representative community samples report similar findings, but the magnitude of the findings is not as large/meaningful. So, while our research studies find that caregivers do report more distress than non-caregivers, the magnitude of the distress depends on the groups studied. In addition, while biomarker studies have reported negative changes in endocrine and immune system function for caregivers compared with non-caregivers (Lovell & Wetherell, 2011), most of these studies have also used small convenience samples of dementia caregivers.
In a population based study of spouses serving as caregivers, Schulz and Beach (1999) found a significant association between those who reported 'strain,' and risk for premature mortality. This finding has widely - and incorrectly - been interpreted and reported to suggest that all caregivers are at risk for premature mortality. Indeed, several subsequent population based studies found the opposite effect: caregivers outliving non-caregivers (Brown & Brown, 2014; Roth et al, 2013; Roth et al., 2015). Roth et al (2013) found caregivers to have an 18 percent reduced rate of death compared with non-caregivers over a six-year follow-up period. Further analysis by race, sex, caregiving relationship, and caregiving strain did not alter the findings. Roth et al. (2015, p. 4) conclude, "Caregivers, as a general group, have significantly reduced mortality rates compared to their respective non-caregiving reference groups."
Positive Effects of Caregiving
There are multiple studies now reporting that many caregivers describe little-to-no distress associated with their caregiving role. Roth et al. (2009) reported that 33 percent of the caregivers they surveyed (both spouses and other relatives) actually reported "no strain," associated with their caregiving role, while 50 percent reported "some strain" and 17 percent reported "a lot of strain." In fact, a 2014 survey by the National Opinion Research Center found 83 percent of caregivers to describe their experience as "positive." What specific positive experiences do these caregivers report? (1) Comfort in knowing that they are giving back to someone who previously cared for them; (2) Confidence and satisfaction in knowing that their loved one is receiving the best care they can provide; (3) A sense of increased meaning and purpose in life. Considering all of the complexities of the caregiving role, it is not surprising then that researchers have proposed a two-factor model of the caregiver experience - one that includes both emotional distress and psychological benefit (Beach et al., 2000; Harmell et al., 2012; Lawton et al., 1991). In fact, the positive benefits of caregiving may serve to protect individuals from some of the negative health-related consequences of caregiving.
Of course, there is no doubt that it can be quite stressful to watch a loved one suffer with a serious illness or disability. But this can be stressful for family members regardless of whether or not they are serving in a caregiving role. Lazarus and Folkman's (1984, p. 19) classic definition of stress describes it as a "particular relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering well-being." The vast literature outlining the impact of stress on health leads to the conclusion that when caregiving demands exceed our psychological or social coping resources, it is then that we may be at increased risk for mental and physical health problems.
The research does suggest that those who provide care for loved ones with dementia may experience more problems than other caregivers (Ory et al., 1999). In addition, caregivers who have pre-existing health conditions that negatively affect their physiological response to stress may also be at increased risk. As a result, older adult caregivers may be especially vulnerable to the negative effects of stress associated with caregiving, as they are more likely to have existing chronic health problems (Navaie-Waliser et al., 2002) and may also be at increased risk for falls and other unintentional injuries related to caregiving (Hartke et al., 2006).
Our healthcare system attends to the "identified patient," and tends not to address, educate, or support family caregivers. In addition, the time that caregiving takes may result in caregivers not interacting as often with other support sources, including spouses, children, friends, or other groups/clubs. Caregivers also may feel that they should hide or minimize the effects their caregiving role has on their attendance or productivity at work, as there may be little support for caregivers at their workplace.
If you are aware that you are experiencing distress related to caregiving, seeking help may not only benefit you, it may benefit your ill/disabled loved one as well. A primary risk factor for institutionalization of an ill/disabled individual is the decline in health of that individual's family caregiver. In addition, care recipients are at greater risk for falls, pressure sores, and decreased functioning if their caregivers have ineffective coping skills or problems with depression (Elliott & Pezent, 2008). Finally, when caregivers are depressed, distressed, or in poor physical health, their loved ones may be at increased risk for abuse (Beach et al., 2005; Williamson et al., 2001).
Population based studies show that many caregivers do not report the high levels of distress that we once thought they experienced. In fact, many caregivers cope quite well with their caregiving tasks/role and even report positive psychological benefits from the caregiving experience, such as pride in their caregiving role and a sense of meaning/purpose related to this role. However, there are a few subgroups of caregivers that have more difficulty coping and report a high degree of 'strain,' depression, and negative health effects. Specifically, caring for an individual with dementia, older caregivers, and caregivers without adequate resources (e.g., education, skills, social support, and community services) may be more vulnerable.
Local and national resources for supporting family caregivers' efforts
If you find yourself - now or in the future - feeling overwhelmed by your caregiving role, please reach out for help! In particular, there are many resources available on the internet. The list that follows is not exhaustive but will, hopefully, get you started on the path to finding the resources you need to 'care' for the caregiver.
Frederick County Department of Aging/Caregiver Support Program
Maryland Caregivers Support Coordinating Council
Frederick County Caregiver Support Groups
Alzeheimer's Association - Greater Maryland Chapter Support Groups
Arch National Respite Network and Resource Center
Caregiver Action Network (for cacer caregivers)
Family Caregiver Alliance (FCA)
Family Care Resource Clearinghouse (AXA Foundation & National Alliance for Caregiving)
National Alliance for Caregiving (NAC)
National Caregivers Library (Family/Care America)
Strength for Caring (Johnson & Johnson)
Relax and learn stress reduction techniques by meditating with Beth O'Malley in the McHenry Interfaith Prayer Room, Coffman Chapel basement, Mondays and Thursdays, 1:40-2:10 pm. All are welcome!!
The Dance Studio in Gambrill Gymnasium is reserved for yoga sessions Wednesday nights, 5:15-6:15 pm for the spring semester. The last class ends April 29. Free yoga classes are sponsored by Sol Yoga.
Hood Walking Group
- Still Walking on Tuesdays
Hood's walking group leaves at noon from the fountain at Gearey Alumni Plaza (between Alumnae Hall and Hodson). The
group walks for approximately 30 minutes rain or shine.