Socioeconomic and demographic factors modify observed relationship between caregiving intensity and three dimensions of quality of life in informal adult children caregivers

In 2014, nearly 34.2 million American adults provided informal care to an adult age 50 years of age or older within the last 12 months, representing approximately 12.4% of the U.S. adult population [1]. Informal caregiving is the unpaid care and support family members and friends voluntarily provide individuals who are unable to function independently. Informal caregivers are estimated to have spent over 30 billion hours a year providing care to disabled or chronically ill individuals, with an opportunity cost of $522 billion per year [2]. These figures are expected to rise as the number of Americans over 65 years of age grows to 72 million by the year 2030 [3].

The need to provide care for this growing segment of the population is a major public health challenge. Numerous studies have shown any type of informal caregiving can result in negative physical and emotional health consequences for the caregiver, often referred to as caregiving-related stress or burden [1, 4‐8]. Nearly half of all caregivers who provide care to an older adult over the age of 50 report their caregiving situation is highly stressful [1]. Additionally, caregivers providing high intensity care differ in substantial ways from those providing less care, such as their employment status, the type of caregiving duties they provide, and the impact caregiving has on them [1, 9]. They may be particularly vulnerable to experiencing higher emotional stress, financial strain, and declining health, and quality of life (QOL) [1, 4, 10‐16]. With increasing caregiving intensity, the percentages of caregivers reporting fair or poor general health also increases [1]. Higher levels of informal caregiving intensity have specific, negative impacts on aspects of QOL, including emotional health [10, 11, 13] and increase social strain [16].

Additionally, caregiving duties and caregiver health varies by caregiver sociodemographic factors. Differences exist in both the care provided and caregiver QOL among male and female caregivers [11]. Females provide higher levels of informal caregiving than their male counterparts [17], and this disparity has important implications for the health and QOL of female informal caregivers [18‐20]. There are also notable disparities in caregiving intensity among caregivers of different racial and ethnic groups [21], ages [10, 22, 23], and income levels [24]. However, it is not well known how associations between caregiving intensity and caregiver QOL vary by these sociodemographic factors. Caregiver race/ethnicity, gender, age, and income may strengthen or weaken this relationship, such that certain caregivers are more or less vulnerable to QOL challenges when providing high intensity care.

Furthermore, “adult child caregivers”, defined as caregivers to a parent or step-parent, are an important subset of caregivers to investigate. They differ from other types of caregivers (i.e. spousal caregivers) in important and distinct ways, such as how they experience the burden of caregiving [7, 25‐28]. They may also be particularly prone to strain due to competing responsibilities of employment and providing care for children of their own. As a result of these differences, it has been recommended that adult child caregivers should be examined separately from spousal caregivers, due to significant differences in caregiver characteristics and needs [7, 25].

Therefore it is imperative to better understand how caregiving impacts QOL for different types of adult children caregivers, in order to help guide policies and programs aimed at improving the caregiving experience, ameliorating the associated impact, and improving QOL among this large, important part of the U.S. health care system. To that end, the objective of this exploratory study is to describe and assess the relationship between caregiving intensity and three domains of caregiver QOL (social strain, negative emotional, and positive emotional) in adult children caregivers to older adult parents, and to determine how key sociodemographic variables modify this association. We hypothesize that sociodemographics plays a role in modifying the relationship of caregiving intensity and caregiver QOL.

The findings of this study suggest that caregiver demographics substantially change the nature of the association between caregiving intensity and caregiver quality of life. These results provide insight into how informal adult-children caregivers are affected by the caregiving experience, and suggestive evidence for intentionally tailoring policies and programs to the needs and values of specific caregiver groups involved in different manifestations of high intensity caregiving. Our findings indicate that the experience of providing informal care to an adult parent is often complex and multidimensional, affecting people in distinct ways. This ‘unique caregiving fingerprint’ demonstrates how socioeconomic and demographic characteristics of the caregiver has critical implications for how their caregiving responsibilities impact them.

Our results indicate that older caregivers (45 years of age or older) are more likely to experience negative consequences of caregiving – especially social burden – than their younger caregiving counterparts (less than 45 years of age). Younger caregivers are also more likely to experience the positive emotional aspects of caregiving, when providing both high ADL and high number of monthly hours of care. Additionally, the results suggest that younger caregivers may be more emotionally and psychologically resilient than older caregivers, as younger caregivers were less vulnerable to negative emotional burden while simultaneously more likely to experience the positive emotions associated with providing care. This finding is counter to previous studies that have noted worse physical and mental health in younger caregivers.

One study examining data from the 2000 Behavioral Risk Factor Surveillance System noted that younger caregivers were at an increased risk for experiencing fair or poor health compared to their non-caregiving counterparts, while older caregivers had a decreased risk [22]. These younger caregivers also showed larger deficits in both mental and physical health and QOL measures compared to older caregivers. A second study by Anderson et al. [23] found that younger caregivers were significantly more likely to report experiencing mental distress and being dissatisfied with life compared to older caregivers, but were less likely to report fair or poor health or physical distress. Other studies have found younger age independently predicts depression among caregivers [10]. Classification of younger and older caregiver groups varied, making it difficult to compare and interpret results across studies. Nevertheless, our findings are in contrast to prior research and suggest that the youngest informal caregivers may be especially psychologically resilient and less likely to experience emotional caregiver burden.

Differences in emotional well-being that varied across racial/ethnic groups were also observed. Consistent with previous studies, White caregivers were more likely to report negative emotional burden from high intensity caregiving than caregivers of other race/ethnicities. African American caregivers were not at an increased risk for negative emotional burden, but were more likely to experience the positive emotional aspects of caregiving. This adds to the growing body of literature noting racial differences in emotional adaptation of informal caregivers, with White caregivers being particularly vulnerable to reporting emotional distress, and African American caregivers demonstrating emotional resilience, despite both groups providing highly involved care. Several studies have observed lower levels of psychological distress among African American caregivers, highlighting their increased ability to emotionally adapt to the stresses of providing care for family members [33‐35]. It is speculated that the positive perceptions associated with caregiving, combined with one’s own resourcefulness may buffer against the impact of negative emotional distress, such as anxiety, depression, and hostility [36]. A meta-analysis examining the ethnic differences in psychological outcomes of family caregivers found that some ethnic minority caregivers were at an advantage with regard to psychological health, but disadvantaged in physical health outcomes [17]. This was primarily observed in African Americans, with inconsistent findings among Hispanics, and worse psychological outcomes in Asian-American caregivers. While our study did not assess physical health outcomes, Pinquart and Sörensen note their findings may be due to caregiving’s relatively small impact on overall physical health, and more of a reflection of the social conditions and determinants of health that often vary along racial lines, including health insurance coverage, health care access, and racial discrimination [17].

While our findings reveal patterns in caregiver burden across certain age and racial/ethnic groups, it is difficult to discern any overarching themes across other demographics. Parsing out patterns in caregiving burden are especially difficult when stratified by caregiver income, as there appear to be few that are distinguishable, and even conflicting results. For instance, caregivers providing high ADL caregiving were more likely to experience social strain than their low-intensity caregiving counterparts in all income brackets except $50,000-74,999. Previous research has noted higher degrees of burnout among lower income caregivers [37, 38], and we would anticipate this same pattern across all income categories in this domain.

Our results also demonstrate to some degree, the high prevalence and commonly shared experience of social strain among all caregivers – the act of providing care and caregiving responsibilities impacting one’s ability to engage and participate in social activities. This finding is consistent with other studies. Haley et al. note that both African American and Caucasian caregivers experience similar social consequences, with restrictions of social activities as a result of caregiving duties [37]. While our findings do indicate that certain groups of caregivers may be at an even heightened risk, the vast majority of all high intensity caregivers reported experiencing social strain as a result of their care responsibilities. This finding alone may indicate the need to find solutions in helping to alleviate high intensity caregiving’s impact on caregivers’ ability to engage socially within society. Interestingly, duration (years) of caregiving was the only caregiving intensity measure that was protective of experiencing social strain, significant in both 55–64 year old caregivers and caregivers in the lowest income bracket (less than $25,000/year).

Lastly, our findings demonstrate that the measurement of caregiving intensity matters. Different measures of intensity and ways people provide care (ADL, IADL, Hours, and Years providing care) impact the observed associations between caregiving intensity and QOL outcomes. If caregiving intensity is measured by the number of hours spent providing care, we find a substantial amount of negative emotional burden among caregivers. However, if intensity is measured by IADLs performed, only a weak association between caregiving intensity and negative emotional aspects of caregiving is observed. Likewise, duration of caregiving demonstrated to be a relatively poor predictor of caregiver emotional burden. Therefore, associations between intensity and caregiver quality of life vary substantially based on the measurement of caregiving intensity used, and should be taken into account in future studies. Such findings are consistent with previous research suggesting that the choice of caregiving intensity measure changes its association with health and QOL outcomes. Few studies have directly compared measures of caregiving intensity and the potential for differences in aspects of caregiving intensity to impact health. One study found that household income was associated with hours per month spent caregiving, but not associated with number of ADLs or IADLs with which the caregiver provided care [39]. A study of caregiving intensity and fall risk used individual ADL or IADL tasks and found that the performing housework or other home maintenance work was protective against falls, while no other ADL or IADL was significantly associated with fall risk. The same study found that daily or more frequent caregiving was associated with an increased fall risk [40]. Other studies have assessed caregiving intensity using number of ADLs caregivers performed for their care recipient [41, 42].

Our findings from this study indicate that demographic characteristics of informal adult-children caregivers have an important impact on the caregiver experience. By changing the nature of how caregivers are affected by their caregiver responsibilities (here, defined as ‘caregiving intensity’), sociodemographic information helps us to better understand how different groups of caregivers may be disproportionately impacted and vulnerable to experiencing various types of caregiving stress.

While this exploratory study’s findings draw important associations, more research is needed to delve deeper into better understanding the needs of different caregivers, as well as elucidate the relationships and often inconsistent findings that were observed. Qualitative methods of inquiry may be useful in explaining the ‘hows’ and ‘whys’ behind these findings, as well as help to gain a better understanding of the specific needs, values, and ways to effectively intervene in order to improve caregiver health. These findings may be valuable for those in a position to develop programs, policies, and interventions that are appropriately aligned with the specific needs of individual groups of informal caregivers. These strategies should be informed by research and rigorously tested and evaluated to insure they are effective at meeting the needs of the caregivers they are intended to serve.