It has been estimated that nearly 50 million people in the United States are acknowledged caregivers and that as many as one in four individuals will be involved in caregiving duties at some point in their adult lives. Given the often cited “Graying of America” phenomenon, the number of caregivers will likely increase during the coming decades.
Of significance for counseling psychologists is the fact that caregiving has been found to be associated with substantial stress and mental health problems, both of which are significant public health concerns that are amenable to counseling interventions. This entry elucidates the following: (a) a definition of caregiving, (b) its association with mental health problems, (c) strategies for coping, and (d) an approach to care-giving that emphasizes positive functioning and possibilities for skill-based strategies to assist caregivers.
Informal caregiving in its most elemental form characterizes a family member, loved one, neighbor, or significant other who provides direct assistance to a person (a care recipient) who, due to disability, is unable to be functionally independent without such assistance. Although the preceding definition is broad, a truly generalized characterization of caregiving is challenging in our multicultural society. This is due primarily to the fact that the manifestations of caregiving differ across cultures and cohort groups. For instance, in some traditional cultures (Asian, Hispanic, New Zealand Maori) it is expected and even common to provide care for family members by taking them into one’s home and providing the necessary instrumental and emotional support to help them maintain functional independence. In contemporary American society (particularly among the White affluent majority culture in the United States), it is less expected that a family member will serve as the sole full-time care-giver, perhaps due to current mobility trends and an increased focus on individual goals and attainments. There are also numerous ways with which people from different contexts provide care. For instance, research has demonstrated that African Americans are more likely to provide care to friends and extended family members, in contrast to White Americans who are more likely to care for a member of their immediate family. These findings suggest that like many social phenomena, defining the nature of caregiving depends to a large extent on contextual factors.
There are, however, some common elements of the caregiver experience that can help to portray, in general, the caretaker role. Caregiving is most often an activity that focuses on providing needed support to another individual who is disabled to the extent that he or she is not capable of independent functioning. Caregiving also includes providing a variety of different types of support, but more often than not includes providing direct care in the service of everyday needs that the care recipient is not capable of performing due to a disease process, an injury, or a life-long disability. With regard to the elderly, the most common problems that result in the need for caregiving stem from senile dementia (Alzheimer’s disease and vascular dementia), stroke, and disorders such as severe arthritis or osteoporosis that markedly limit functional independence. Among children, pervasive developmental disorders such as autism or Rett’s disorder and forms of severe intellectual disability such as Down’s syndrome or fetal alcohol syndrome frequently require a family member to engage in caretaking.
Coping With Caregiving
Caregiving for a significantly disabled individual is arguably one of the more difficult activities that a person undertakes during his or her life span, and it has been shown to have a number of adverse outcomes, including depression, anxiety, and chronic physical health problems. It is likely that the distressing correlates of caregiving, known in the literature as care-giver burden, stem from a number of factors. These might include an often unexpected life change; financial difficulties; a limited amount of time for personal activities such as recreation, exercise, and intimate relationships; and, in some cases, the necessity of ceasing career pursuits due to the competing demands of the caregiver role. In the case of disorders that result in personality change of the care recipient or a progressive loss of cognitive functioning, there is often a corresponding sense of interpersonal loss on the part of the caregiver. Research has identified a number of caregiving variables that are reliably associated with negative outcomes, including problematic behavior of the care recipient and caregiver overload.
Research during the past decade has expanded the knowledge base of caregiver well-being by examining variables that are predictive of mental health outcomes. Most of this research has focused on ways of coping with the stressors of the caregiver role and has identified ways of coping that are reliably associated with negative outcomes. In particular, “emotion-focused” coping strategies, such as escape or avoidance, wishful thinking, and fantasizing have been shown to be associated with high levels of anxiety and depression. These studies have underscored the notion that coping strategies that are based on denial or avoidance tend to result in poor psychological outcomes for caregivers. It’s likely that this type of coping inhibits the caregiver from facing stressors, which reduces the chance of working through the difficult issues the care-giving situation creates. Avoidant coping may also result in reduced health functioning for the care recipient, as this form of coping likely renders the caregiver less psychologically available to the care recipient.
Fortunately, current research not only has examined factors associated with negative mental health outcomes among caregivers but also has widened its lens to examine factors related to positive outcomes. This trend has been influenced by dissatisfaction of professionals in the field with the search for cures to negative mental health outcomes. There is also a growing body of literature that indicates that positive mood can serve to protect individuals from the effects of stressful experiences. Not surprisingly, research has indicated that approach-related coping strategies, such as having a problem-solving orientation, using positive appraisal, and having a high degree of perceived control, are related to enhanced levels of positive mood among caregivers. These results indicate that strategies that enable the caregiver to approach and productively engage in active solution-focused behaviors tend to report better subjective well-being, both during the caregiving experience and after it has ended.
A Positive Approach to Counseling Caregivers
The future trend in research appears to be moving away from strategies designed to ameliorate negative effects and consequences of caregiving in favor of a viewpoint that focuses on building a positive schema for caregiving. For instance, research with caregivers of dementia patients has indicated that providing care for a loved one can result in a sense of being personally fulfilled and a sense that one is engaged in a meaningful duty. Recent studies have also documented that certain personal characteristics such as an orientation to helping others is related to enhanced well-being among caregivers, even with the influence of other coping strategies controlled.
Robert Hill describes a “positive aging” approach to caregiving that construes the provision of care as a life skill not unlike those associated with parenting very young children. Specifically, these skills include (1) control, which involves the degree to which the caregiver feels able to manage the task, (2) competence, which relates to the caregiver’s perceived self-efficacy to perform caregiving tasks, (3) flexibility, which involves the ability to take a larger perspective outside of one’s immediate world purview, (4) a positive orientation, which involves finding meaning in the caregiver role, (5) self-care, or the ability of the caregiver to attend to her or his personal needs, and (6) resource utilization, or the extent to which the caregiver can access external sources of support to deal with issues of caregiving. When the focus of caregiving emphasizes these component skills, then the ability of caregivers to provide not only the assistance needed by care recipients but also to generate their own positive source of meaning is amplified. As a direct outcome of skill mastery, caregivers who can sustain relationship continuity through the provision of caring tend to have better long-term adjustment.
Recent research in informal caregiving has focused on finding ways to identify the benefits or positive outcomes of caring for a disabled loved one.
A contemporary instrument in the scientific literature that emphasizes this approach is the Positive Aspects of Caregiving Scale. This instrument gauges the extent to which a person finds meaning in caregiving along a number of positive dimensions, including sense of usefulness, self-esteem, relationship enhancement, meaning through service to a loved one in need, and a positive attitude toward life even in the presence of caregiving. This scale, as well as other assessment tools and intervention strategies, are the basis of the positive aging approach to caregiving. Such an approach is consistent with the long-standing traditions in counseling and counseling psychology that have emphasized individual strengths and positive coping as variables that facilitate adaptation to challenging life contexts such as caregiving. It is anticipated that a positive aging approach to caregiving will embody the design of therapeutic interventions to improve quality of life among caregivers.
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