A nurse is caring for a client in a long-term care facility who is receiving enteral feedings

For centuries, family members have provided care and support to each other during times of illness. What makes a family member a “family caregiver”? Who are these family caregivers, what do they do, and what harm do they face? What does the research tell us about ways to assess the needs of these hidden patients and evidence-based interventions to prevent or reduce potential injury and harm? This section answers these questions and highlights the need for nurses to proactively approach family caregivers as clients who need their support in their own right.

The terms family caregiver and informal caregiver refer to an unpaid family member, friend, or neighbor who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks, from bathing, dressing, and taking medications to tube feeding and ventilator care. Recent surveys estimate there are 44 million caregivers over the age of 18 years (approximately one in every five adults).1 The economic value of their unpaid work has been estimated at $257 billion in 2000 dollars.2 Most caregivers are women who handle time-consuming and difficult tasks like personal care.3 But at least 40 percent of caregivers are men,3 a growing trend demonstrated by a 50 percent increase in male caregivers between 1984 and 1994.4 These male caregivers are becoming more involved in complex tasks like managing finances and arranging care, as well as direct assistance with more personal care.5 Nurses are likely to see many of these caregivers, although many of them will not identify themselves as a caregiver.

Those caring for someone 50 years or older are 47 years old—on average—and working at least part-time.1 If they are providing care to an elder who is 65 years or older, they are, on average, 63 years old themselves and caring for a spouse; one-third of these caregivers are in fair to poor health themselves.6 In many cases, they are alone in this work. About two out of three older care recipients get help from only one unpaid caregiver.7 In the last decade, the proportion of older persons with disabilities who rely solely on family care has increased dramatically—nearly two-thirds of older adults who need help get no help from formal sources.4

Caregivers spend a substantial amount of time interacting with their care recipients, while providing care in a wide range of activities. Nurses have a limited view of this interaction. Caregiving can last for a short period of postacute care, especially after a hospitalization, to more than 40 years of ongoing care for a person with chronic care needs. On average, informal caregivers devote 4.3 years to this work.8 Four out of 10 caregivers spend 5 or more years providing support, and 2 out of 10 have spent a decade or more of their lives caring for their family member.9 This is a day-in, day-out responsibility. More than half of family caregivers provide 8 hours of care or more every week, and one in five provides more than 40 hours per week.1

Most researchers in the caregiving field conceptualize the care that family members give as assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). But those concepts do not adequately capture the complexity and stressfulness of caregiving.9 Assistance with bathing does not capture bathing a person who is resisting a bath.10,11 Helping with medications does not adequately capture the hassles of medication administration,12 especially when the care recipient is receiving multiple medications several times a day, including injections, inhalers, eye drops, and crushed tablets. The need to make decisions on behalf of family members who are unable to do so is stressful, as this is contrary to the caregivers’ normal role, and they are concerned that the decisions are correct. Supervising people with dementia and observing for early signs of problems, such as medication side effects, are serious responsibilities as family members are often unable to interpret the meaning or the urgency. The medical technology that is now part of home care and the frustrations of navigating the health care system for help of any kind is not even part of the ADL/IADL measures.13 Being responsible for medical and nursing procedures like managing urinary catheters, skin care around a central line, gastrostomy tube feedings, and ventilators is anxiety provoking for the novice nursing student, but is becoming routine family care of persons with chronic illnesses living at home.

Family caregivers often feel unprepared to provide care, have inadequate knowledge to deliver proper care, and receive little guidance from the formal health care providers.14–16 Nurses and family caregivers rarely agree about specific needs or problems during hospital admission or discharge,17 in part because nurses are often unaware of the strengths and weaknesses of both the patient and caregiver. Due to inadequate knowledge and skill, family caregivers may be unfamiliar with the type of care they must provide or the amount of care needed. Family caregivers may not know when they need community resources, and then may not know how to access and best utilize available resources.18 As a result, caregivers often neglect their own health care needs in order to assist their family member, causing deterioration in the caregiver’s health and well-being.19–21

Caregivers get very little help from health careprofessionals in managi ng their tasks and the emotional demands of caregiving. Among the greatest challenges for family caregivers is interacting with nurses and other professionals in the hospital setting, and a rough crossing back home, as the patient is “discharged to family.”22 Naylor’s review23 of nearly 100 studies published between 1985 and 2001 confirms that breakdowns in care during the transition from hospital to home result in negative outcomes. Health professionals in emergency departments and inpatient hospital settings do not adequately determine the after-care needs of older patients when they are being discharged.

Effective discharge planning is impeded by gaps in communication between the hospital and community interface, such as illegible discharge summaries and delays in sending information to the physician.24 Focus groups of caregivers found that they experience their family member’s discharge from the hospital as an abrupt and upsetting event because the hospital staff did not prepare them for the technical and emotional challenges ahead of them. Many caregivers felt abandoned at a critical time, and none of the focus group participants had been referred by any health care professional in the hospital to community-based organizations for emotional support—or any other kind of support.22

Health professionals’ lack of explicit attention to caregivers is a serious gap in health care in light of the more than two decades of research that documents the potential hazards of family caregiving. Caregivers are hidden patients themselves, with serious adverse physical and mental health consequences from their physically and emotionally demanding work as caregivers and reduced attention to their own health and health care.

Declines in physical health and premature death among caregivers in general have been reported.21, 25 Given and colleagues18, 19 and Kurtz and colleagues26 found that family caregivers experience significant negative physical consequences as the patient’s illness progresses. Elderly spouses who experience stressful caregiving demands have a 63 percent higher mortality rate than their noncaregiver age-peers.21 Most recently, research documents that elderly husbands and wives caring for spouses who have been hospitalized for serious illnesses face an increased risk of dying prematurely themselves.27

Declines in caregiver health have been particularly associated with caregivers who perceive themselves as burdened.21 Caregiver burden and strain have been related to the caregiver’s own poor health status, increased health-risk behaviors (such as smoking), and higher use of prescription drugs.28 Researchers have reported that caregivers are at risk for fatigue and sleep disturbances,29 lower immune functioning,30, 31 altered response to influenza shots,32 slower wound healing,33 increased insulin levels and blood pressure,34, 35 altered lipid profiles, 36 and higher risks for cardiovascular disease.37

Burton and colleagues38 examined the relationships between provision of care by family members and their health behaviors and health maintenance. These researchers found that, with a high level of caregiving activities, the odds of the caregiver not getting rest, not having time to exercise, and actually not recuperating from illness were also high. In addition, caregivers were more likely to forget to take their prescriptions for their own chronic illnesses. Providing care poses a threat to the overall health of caregivers, which can compromise their ability to continue to be caregivers. If caregivers are to continue to be able to provide care, relief from the distress and demands of maintaining the required care must be considered.

Both highly negative and highly positive consequences of providing care may exist simultaneously.39 It is plausible that positive consequences, such as rewards and satisfaction, may buffer the negative effects of caregiving. Positive aspects of caregiving are important,40–42 some researchers are now using a caregiver rewards scale to better understand caregivers’ experiences.41, 42 Other researchers are exploring the positive aspects of care as the mutuality between the patient and caregiver develops.40 Archbold and colleagues40 demonstrated that mutuality and preparedness did reduce some of the strain on the caregiver. Picot and colleagues41, 42 worked primarily with African American caregivers and found that the rewards perceived by caregivers were more important than coping. A specific Picot Caregiver Reward Scale of 25 items exists and has been widely used to show that both rewards and costs can exist in the same care situation.

Caregivers who attempt to balance caregiving with their other activities, such as work, family, and leisure, may find it difficult to focus on the positive aspects of caregiving and often experience more negative reactions, such as an increased sense of burden.43–45 Regardless of amount of care provided, caregivers may become increasingly more distressed if they are unable to participate in valued activities and interests.46 More than half of adult children who provide parent care are employed.7 Caregiving responsibilities can have a negative effect on work roles as caregivers adapt employment obligations to manage and meet care demands.47, 48 Caregivers who are employed report missed days, interruptions at work, leaves of absence, and reduced productivity because of their caregiving obligations. They have difficulty maintaining work roles while assisting family members.46 On the other hand, employment provides some caregivers respite from ongoing care activities and serves as a buffer to distress.49–51

Low personal and household incomes and limited financial resources can result in increased caregiver risk for negative outcomes, particularly if there are substantial out-of-pocket costs for care recipient needs.45 Caregivers who are unemployed or have low incomes may experience more distress because they may have fewer resources to meet care demands. Overall, financial concerns cause particular distress for caregivers during long treatment periods,52, 53 as resources become depleted. Higher-income families, with greater financial resources to purchase needed care, might not become as distressed or burdened as those with limited resources.54

Caregiver burden and depressive symptoms are the most common negative outcomes of providing care for the elderly and chronically ill.20, 55, 56 Caregiver burden is defined as the negative reaction to the impact of providing care on the caregiver’s social, occupational, and personal roles57 and appears to be a precursor to depressive symptoms.58 Whether the caregiver develops negative outcomes seems to be directly related to the care recipient’s inability to perform ADLs, either due to physical limitations or cognitive status.51 If the care recipient wanders (associated with Alzheimer’s disease) or displays unsafe behavior, the caregiver has to be alert and on call for supervision 24 hours per day. The constant concern for managing disruptive behaviors (such as turning on stoves, walking into the street, taking too many pills, yelling, screaming, or cursing) also affects the caregivers negatively.

Care recipients’ functional, cognitive, and emotional status predicts caregiver burden and depression,58–62 which may be manifested in feelings of loneliness and isolation, fearfulness, and being easily bothered, as the demands of caregiving limit their personal time.58 Care recipient behavior such as screaming, yelling, swearing, and threatening are associated with increased caregiver clinical depression.63 Caregiver depression may also have a somatic component, such as anorexia, fatigue, exhaustion, and insomnia.64

Caregivers may suffer severe fluctuations in sleep patterns over time, which may affect depression65 and exacerbate symptoms of chronic illnesses. Pain management is an intractable problem for caregivers that results in substantial caregiver distress, as caregivers assist with both nonpharmacologic and pharmacologic pain-management strategies.66–68