Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.
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Family caregivers are relatives, friends, partners, or neighbors who provide assistance, typically unpaid, to someone who has limitations in their physical, mental, or cognitive functioning. Caregivers represent a broad and diverse group of individuals. They span all ages and are heterogeneous across multiple dimensions, including their relationship and geographical proximity to the person for whom they provide care and the nature, duration, and intensity of assistance that they provide. Caregivers also vary in their level of competence, skill, and motivation to provide assistance.
Caregiving is not a new role for family members. People have always provided emotional, physical, and financial support to family members and others that they feel close to; what has changed in the past three decades is the number of individuals who take on this role, the duration and intensity of care provided, and the complexity of the care delivered. The aging of the population, increased longevity of older adults with significant chronic disease and disability, and an underfunded and fragmented health and social support system have all contributed to placing the major burden of care on family members. Caregivers provide a valued service to family members and society, but sometimes at great cost to themselves.
Although the caregiving role varies widely in terms of its inception and progression depending on the type and precipitating cause of disability (e.g., dementia, stroke, cancer), a prototypical longitudinal trajectory for older adult caregivers is illustrated in Figure 1. The trajectory begins with emerging awareness on the part of the caregiver that there is a problem, necessitating sporadic assistance including taking the care recipient to medical appointments, communicating with health care providers, and monitoring care recipient functioning. Over time this evolves into increasing care needs, which require assistance with household tasks (e.g., monitoring symptoms and medications, hiring care providers, coordinating care, providing emotional support) and then self-care tasks (e.g., helping with dressing, ambulating in the home, dealing with insurance, managing symptoms). End-of-life care may involve placement into a long-term care facility or enrollment in a hospice program. Note that the progression of tasks for the caregiver is cumulative. With increasing care recipient disability and need for care, the caregiver’s role becomes more labor and time intensive, more complex, and increasingly stressful. For stroke caregivers, the trajectory may begin with sudden intensity, followed by some recovery and long periods of stability, while for cancer caregivers, transitions may occur in rapid succession, each having its own learning curve as the patient moves from one treatment modality to another.
Caregiver interventions are often designed to address multiple problems, thereby affording the opportunity to achieve outcomes in multiple domains, some of which may be judged more clinically meaningful than others. We would advocate for an outcomes agenda that includes the following criteria: (a) symptomatology, i.e., the extent to which individuals return to normal functioning or experience a meaningful improvement in symptoms; (b) quality of life, i.e., the extent to which interventions broadly improve an individual’s quality of life; (c) social significance, i.e., the extent to which outcomes are important to society (e.g., the impact of the intervention on service utilization of both caregiver and care recipient); and (d) social validity, i.e., the extent to which treatment goals, procedures, and outcomes are acceptable as assessed by the client. This still leaves us with the challenge of defining what is meant by meaningful change or improved quality of life. For caregivers, this might include movement out of a clinically defined state such as major depression; changes in symptomatology equal to one standard deviation or more on a symptom scale; and consistent improvement in multiple indicators such as health, happiness, and social connectedness and engagement, reflecting one’s ability to enjoy a normal life.
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