The term “caregiver” refers to anyone who routinely helps others who are limited by chronic conditions. “Formal caregivers” are volunteers or paid employees connected to the social service or health care systems. The term “informal caregiver” refers to family members and friends, who provide nearly three-quarters of the care currently being provided to impaired older adults living in the community. “Long distance caregivers” refers to people who are involved in providing care to older friends or family members they are geographically separated from. Although people with any type of disability may need assistance, and care can be provided in any number of settings, the literature on caregiving has tended to focus on the challenges of providing care to persons with cognitive impairments, particularly Alzheimer’s disease, in their homes. This may be attributed to the high level of care these patients often require, and the highly stressful nature of caring for people with cognitive impairments (Tennstedt, 1999). The tasks for which assistance is typically needed are classified into two categories. “Activities of Daily Living” (ADLs) include bathing, dressing, getting in and out of bed and chairs, and using the toilet. “Instrumental Activities of Daily Living” (IADLs) include housework, grocery shopping, preparing meals, arranging for outside services, and managing finances and medications. The most frequently provided forms of assistance are household chores, meal preparation, and personal care such as dressing, bathing and toileting. The type and amount of care that caregivers provide is influenced by several factors including the relationship of the caregiver to the care receiver, whether the caregiver and care receiver live together, and the family’s race and ethnicity. Profiles of caregivers have been relatively consistent in the literature (Tennstedt, 1999; National Alliance for Caregiving and the American Association of Retired Persons, 1997). One family member typically serves as the “primary caregiver,” and others serve as “secondary caregivers” (Montgomery and Kosloski, 2000). Spouses are most likely to be primary caregivers (48 percent) and the majority (72 percent) are women. Spousal caregivers also provide the most extensive and comprehensive care (between 40 to 60 hours a week). When a spouse is not available to provide care, the responsibility typically falls to a daughter. In the absence of a daughter, a son may become the primary caregiver, although there is evidence to suggest that sons often pass along caregiving responsibilities to their wives. Caregiving children report that they spend 15 to 30 hours a week providing care, and they tend to concentrate their caregiving hours on managing care and assisting with transportation and shopping. The remaining caregivers include more distant family members and friends. Caregiving responsibilities are also likely to be assumed by family members who have fewer competing demands on their time than others in the family.
Which family members become caregivers and the type of care they provide are also influenced by cultural factors (Montgomery and Kosloski, 2000). Among Blacks and Hispanics, adult children are much more likely to be primary caregivers — 75 percent of caregivers are adult children. This has been attributed to the fact that minority women are more likely to be single. The daughters of minority elders provide more household and personal care than Caucasian daughters. Researchers have noted that care receivers’ needs change as their illnesses or disabilities progress. In the early stages of caring for dementia patients, for example, caregivers take over high-level activities like financial management, driving and shopping. As the disease progresses, they assist with more basic tasks like dressing and eating. As the impairment becomes more severe, caregivers take on heavier nursing care such as managing incontinence and avoiding pressure sores. Care may be needed 24 hours a day.
The concept of a “caregiver trajectory” has been proposed to explain the changing context in which caregiving occurs and caregivers’ changing perceptions about their roles (Montgomery and Kosloski, 2000). According to this explanation, factors such as the type and level of impairment that the care receiver exhibits, the stability of the care receivers’ functioning level, and the physical and social environment all influence caregivers’ needs, their levels of distress, and the likelihood that they will continue to provide care. Seven markers have been identified along the caregiving trajectory. The first is reached when a caregiver initially begins to perform caregiving tasks; subsequent markers include (2) the point at which the individual comes to view himself as a caregiver, (3) the caregiver begins to provide personal care; (4) the caregiver actively seeks out formal support services; (5) the caregiver considers placing the elder into a nursing home; (6) the nursing home placement occurs; and (7) the termination of the caregiver role.
The Negative Consequences of Providing Care
Although many informal caregivers find caregiving to be emotionally satisfying and personally enriching, caregiving has negative consequences for some. In recent years, significant attention has been directed toward understanding the impact of caregiving on caregivers’ personal and social well-being, and their health. Specific factors that have been looked at include the physical and emotional health indicators associated with stress, which include depression, sick days and health care utilization. Although early studies focused on all caregivers, regardless of the disabilities of the patients they cared for, more recent studies have distinguished between the experiences of persons caring for elders with dementing illnesses and elders with other types of disability.
Depression and anxiety appear to be significant problems for all caregivers (Tennstedt, 1999). The rate of depression for non-dementia caregivers is 35.2 percent, which is twice that of the general population. Among dementia caregivers, this rate has been found to be as high as 43 – 46%.
Common physical complaints reported by caregivers include lack of sleep and inadequate exercise and nutrition; these problems are attributed to patients’ (especially dementia patients’) disturbed sleep patterns or their need for constant supervision. Studies to substantiate the impact of caregiving on caregivers’ health have, however, yielded inconsistent findings.
Significant attention in recent years has been directed toward understanding caregivers’ stress. Stress is frequently described as the body’s “fight or flight” response to danger or trauma. According to this explanation, the brain goes on “high alert,” causing respiration and heart rate to speed up in order to provide the body with the extra oxygen and nutrients it needs. Glucose is released into the blood and blood pressure rises as vessels to less critical parts of the body constrict. The immune system shuts down. Cholesterol and triglyceride levels become elevated. Common physical indicators of stress include dry mouth, headache, confusion, nightmares, indigestion, skin problems, clammy hands, tearfulness, feeling faint, eating disorders, diarrhea or constipation, nausea, heart palpitations and fatigue. The term “burnout” describes caregivers’ physical, emotional and mental exhaustion.
Although the stress response is a healthy reaction to danger, the body needs to repair itself once danger is removed. For caregivers, whose stress often results from fatigue and conflicts that never go away, their bodies never get a chance to heal. Because the immune system stays shut down, caregivers are at increased risk for infections and disease. Similarly, their blood pressure may remain high and their arteries constricted. They may experience decreased blood flow to the heart. Stress is believed by some to cause hypertension and to play a role in silent ischemia and coronary disease. The “Caregiver Health Effects Study” (Schulz and Beach, 1999) revealed the shocking finding that caregivers who experienced the greatest levels of stress were 63 percent more likely to die within the next 4 years than non-caregivers.
What Causes Caregiver Stress?
Caregiver stress is a complex phenomenon. Early studies typically explained it in relation to caregivers’ “burden”; burden was defined in terms of patients’ level of disability and the extent of care they required. According to this explanation, the greater the disability, the more care is required and the greater the stress on the caregiver.
It has further been assumed by some that stress is associated with the type of care provided, which varies according to the care receiver’s illness and its progression. As described earlier, in the early stages of caring for dementia patients, caregivers take over high-level activities like financial management, driving and shopping; as the disease progresses, they assist with more basic tasks like dressing and eating. It is during this middle phase that patients engage in potentially dangerous and disruptive behavior such as wandering and combativeness. As the impairment becomes more severe, these problems diminish but caregivers take on heavier nursing care such as managing incontinence and avoiding pressure sores.
Studies that attribute caregiver stress to burden, however, fail to account for the fact that some caregivers with heavy loads experience little stress, while others, with fewer demands, experience high levels of stress. This observation has prompted several researchers to explore subjective factors. Some have looked at caregivers’ personality traits or attitudes, including how they perceive and react to caregiving. Others have looked at the dynamics between caregivers and receivers prior to and subsequent to the onset of disability (often referred to as “premorbid” and “postmorbid” relationships). Still others have focused on specific behaviors or circumstances that cause distress and caregivers’ ways of coping.
It is now known that caregivers’ stress levels are affected, to a great extent, by how they feel about their caregiving responsibilities and the people for whom they provide care (Zarit and Toseland, 1989). Stress levels are greatest for caregivers who report that they feel overwhelmed, guilty, constantly in demand or “out of control.” Those who feel they receive inadequate support from other family members also report higher levels of stress. Caregivers who perceive the patients they care for as manipulative, unappreciative or unreasonable also report higher levels of stress and strain.
Several studies have revealed that caregivers find certain behaviors of care receivers to be particularly stressful (Quayhagen, et al, 1997; Deimling and Bass, 1986; Compton, Flanagan, and Gregg, 1997). These include patients’ lack of impulse control, volatility, anger, self-absorption, inability to show enthusiasm, poor concentration, paranoia, withdrawal, aggression, repetition of words or actions, bizarre behavior resulting from hallucinations, severe mood swings, verbal or physical aggression, combativeness, wandering, incontinence, sleeplessness and “sundowning” (the tendency for patients’ mental functions to decrease through the course of the day). Aggression and violence have emerged as primary causes of stress for caregivers. Researchers have noted that violence and aggression are most likely to occur while caregivers are providing personal care that requires physical contact, such as bathing or dressing ( Ware, Fairburn, and Hope, 1990).
The nature of the premorbid relationship between caregivers and care receivers has also been found to be significant in predicting stress (Hamel et al, 1990). Caregivers who had positive relationships with patients in the past report lower levels of stress even when the demands of caregiving are extremely high.
The likelihood that caregivers will experience stress and their level of stress also depend on caregivers’ coping ability and the types of coping strategies they use (Tennstedt, 1999; Quayhagen, et al; Bendik, 1992 ). A study by the National Alliance for Caregiving and the American Association of Retired Persons (1997) reported that the most common methods of coping used by caregivers were prayer (74 percent), talking with friends of relatives (66 percent), exercise (38 percent), hobbies (36 percent), and seeking professional help or counseling (16 percent). Most caregivers used multiple coping mechanisms. Maladaptive coping includes avoidance, smoking, drinking or over-eating.
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©NCEA National Center on Elder Abuse, Washington, D.C. Produced by the Institute on Aging (formerly Goldman Institute on Aging) San Francisco, California