In Sickness and in Health: Spousal Caregivers and The Correlates of Caregiver Outcomes

Marriage vows frequently include a promise to take care of each other in sickness. For some, caring for the sick spouse is an integral part of marital life. For others, it is a burden that breaks the marriage. For older couples, who have shared a portion of their life together, caregiving seems to grow into a routine affair. Because of this routineness, partners may not define themselves as caregivers. Although spouses provide a significant amount of caregiving to older adults with functional disability, they have received limited attention from researchers and policy-makers.

In this issue of the American Journal of Geriatric Psychiatry, Polenick, Leggett, and Kales explored correlations between various caregiving activities related to functional decline and caregiver outcomes.¹ Using data from the 2011 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC), the authors conducted cross-sectional analyses to examine two types of medical care activities (health system interaction tasks and medical/ nursing tasks) and their associations with caregiving difficulties and gains. They concluded that 1) interactions with healthcare systems (such as ordering medication, scheduling appointments, speaking to providers, and dealing with health insurance matters) are associated with increased caregiver burden; 2) hands-on caregiving (such as giving shots/injections and caring for skin wounds/sores) are associated with positive aspects of caregiving; and 3) wives and spouses with less education are the two subgroups of spousal caregivers who experience challenges when caring for older adults with functional disability.

OLDER COUPLES LIVING WITH FUNCTIONAL DISABILITY

Functional decline is common among older adults—one of the fastest growing segments of the population. Spouses are an important source of informal care in this population. Older spousal caregivers present unique challenges and opportunities for research and practice, however. First, partners may not identify themselves as caregivers because they consider caring for each other as a marital obligation. Also, spousal caregivers’ responsibilities tend to build up over time, which makes it difficult to recognize that they need additional help. Second, as mentioned previously, because functional decline is common in later life, partners may provide care to and receive care from each other. The ambiguous timeline and the diffused boundary between caregiver and care-receiver make it difficult to measure and track caregiver outcomes among older spousal caregivers.

GENDER VARIATIONS IN SPOUSAL CAREGIVING

Up to 60% of all caregivers of older adults are women (wives and daughters), although the proportion of men providing spousal care for their wives has been steadily increasing.^2,3 The general consensus on gender differences in spousal caregiving activities are: Compared with husbands, wives 1) spend greater time to caregiving, 2) are more likely to provide assistance with tasks related to personal care, 3) are more likely to experience role-strain and role-conflict, and 4) experience a higher prevalence of depression and anxiety related to caregiving.⁴

In addition to the gender variation in how caregiving impacts caregiver outcomes, research studies have documented that men and women approach caregiving responsibilities differently. Men are more likely to focus on tasks and to-do lists, and hire help; women may need more emotional support. Such information is critical in designing interventions geared towards helping spousal caregivers. Yet few practical, actionable information is available to date.

IMPACT OF CAREGIVING ON THE INDIVIDUAL AND THE COUPLE

It is well documented that caregivers experience numerous negative consequences of caregiving: worse personal health, injury, depression, anxiety, fatigue, financial problems, and employment losses. Caregiving is also associated with a sense of satisfaction, and increased self-efficacy among caregivers. A caregiver’s individual characteristics, such as attachment style and personality, impact their experience and health outcomes.⁵ Also, the caregiver’s perception about caregiving demands impacts both individual and relational outcomes.

In addition to its influences on the caregiver and on the care-receiver, caregiving changes the roles and the responsibilities within a couple, and consequently, how a couple relates to one another. Furthermore, couples may have to adapt how they interact with others, such as adult children. Very little is known about how to place caregiving in the context of the couple’s history and how to utilize such understanding in research and in practice with older adults with functional disability.

IMPLICATION FOR RESEARCH AND PRACTICE

In their paper, Polenick, Leggett, and Kales¹ confirm our understanding about gender differences in caregiver experience and outcomes, using nationally representative data. To move the field forward, the following three research areas should be our priority.

First, there is a lack of information about caregiving among nontraditional couples, such as LGBTQ couples, long-term couples without marriage, and those in blended families. These nontraditional couples face unique challenges in caregiving because of social and legal stigma, as well as their complex relationship history. The spousal caregivers in nontraditional couples are, therefore, vulnerable to discrimination and additional caregiver burdens (e.g., interacting with healthcare systems and insurance benefits). Research can increase our understanding of these traditionally marginalized couples by 1) actively including them as research participants, 2) explicitly collecting data regarding different relationship arrangements, and 3) examining how diverse relationship status impacts the individual and the couple’s experience in caregiving.

Second, we may benefit from a more nuanced understanding of how gender and culture impact spousal caregiving practices. Such understanding will enhance our ability to develop and implement interventions geared toward supporting spousal caregivers.

Third, the existing body of research on spousal caregivers comprises cross-sectional studies or longitudinal studies with relatively small sample sizes. Unfortunately, we know very little about how older couples adapt and manage caregiving needs associated with functional decline over time. Therefore, more large-scale longitudinal studies are necessary.

Older spousal caregivers get by with significantly less help in the home than other types of family caregivers, yet their responsibilities often increase over time. We need more information to be able to help spousal caregivers recognize when and where to get the help they need.