A caregiver’s story

Jane, 59 years old, has been a patient of yours for the past nine years. Her mother, Josephine, who has severe dementia, is also your patient. You have supported them both through the diagnosis and progression of Josephine’s dementia. Jane, a nurse at the local emergency department, has had to scale down to part-time status over the past year because of her mom’s increasing care needs. Determined to care for Josephine in her home, Jane has coordinated a schedule of 24-hour care that includes not only hired companion care but also her own time as direct caregiver to her mom.

The issue of caregiving has moved into the public spotlight in the past decade as our country and society grapple with how to care for an aging population. Caregiving is defined as “assistance provided to individuals who are in need of support because of a disability, mental illness, chronic condition, terminal illness or who are frail.”[1] This can include “attention to any of the needs of the person, including hands on care.”[1] This chapter focuses on informal caregivers – friends and family members – who care for chronically ill older adults.

Epidemiology

In 1900, only 4.1% of the population was 65 or older and only 0.2% was 85 or older. By 2050, an estimated 20.2% will be at least 65 years old and 5.0% at least 85.[2] Thus, the population aged 65 or older increased from approximately 3 million in 1900 to nearly 35 million in 2000 and is projected to reach nearly 90 million in the year 2060.[3]

Seventy-three percent of caregivers are spouses or children.[3] Adult daughters make up 29% of caregivers and wives another 23%.[3] Thus, the overwhelming majority of family caregivers are women. Future cohorts of elderly people may have a different experience, based on trends in the structure of the American family. Household structure has been altered especially by trends in marriage and fertility. Divorce is a particular concern because of its potential to undermine effective bonds between parents and children, especially fathers and children.[7] Future cohorts of older adults may therefore be less able to rely on spouses and children.[2]

Chronic conditions increase the risk of functional limitations that threaten independence and increase dependence on family caregivers. In 2000, more than 100 million Americans had a chronic condition, and that number is expected to increase to 158 million by 2040. Chronic conditions are more disabling for the elderly than for younger adults. Nearly 45% of older adults are functionally limited as a result of chronic conditions, the most common being arthritis, hypertension, hearing loss, heart disease, and cataracts.[3]

Trends in disability are encouraging, however. Surveys have consistently documented declines in disability and improvements in instrumental activities of daily living and function in the elderly population.[8] Lower rates of disability portend a better quality of life, greater independence for elders, and lower demands on families and government programs.

Caregiving and caregiver burden

Even in the best-case scenarios of improving health, decreasing disability, and available family caregivers, the projected increase in the older adult population will inevitably place demands on both American families and government programs for the elderly.[3]

The cohort of family caregivers – defined as people who live with and care for a relative with physical or cognitive limitations – in the United States will continue to increase. A wide variety of physical and cognitive disabilities affecting the elderly, including dementias, advanced cancers, and end-stage congestive heart failure, can require the assistance of a caregiver.

The term “caregiver burden” was coined in the early 1980s. It has been defined as the “physical, emotional, social, and financial toll of providing care,”[9] or the extent to which caregivers perceive their emotional or physical health, social life, and financial status as suffering as a result of caring for their relative.[10] The term is used in both the medical and lay communities to describe the stress felt by those in the caregiving role.

Despite the abundant literature on caregiver burden, some authors think that the term too broadly tries to encapsulate the stresses associated with this role. In addition, the degree of physical and emotional stress associated with caregiving is very individualized. Thus, we will outline individual components of health and well-being that are affected by caregiving.

Jane comes to your office today to discuss her worsened back pain. You take note that she is 15 minutes late, which is unusual for her. You notice she seems more distracted than usual as she begins to describe her pain. She attributes it to her sciatica and reports feeling like her back is “acting up” more now that she participates in more of the hands-on care for Josephine.

Impact of caregiving

Family caregiving and its effects on health and well-being have been topics of a large body of research since the caregiving was introduced. Some caregivers report high satisfaction with their role. Work by Donelan found that 89% of caregivers feel appreciated by their care recipient, and 71% report that the relationship between them and their care recipient has improved.[11]

Nevertheless, caregiving has well-documented negative effects on mortality, morbidity, and emotional and financial well-being. Higher caregiver burden has been associated with multiple ill effects on the caregiver, the care recipient, and the family as a whole.

Becoming a caregiver can have a significant economic and lifestyle impact.[12] Many caregivers are forced to leave their jobs to provide adequate care for their relative. This can have far-reaching effects on caregivers’ financial status and sense of worth. Likewise, many caregivers feel a sense of isolation as their new role does not allow them the time to participate in social or self-care activities. Marital and family conflict may also emerge from the stress of providing care.[13]

The health impact of caregiving has been well studied and widely reported. A landmark study documented increased mortality, especially in spousal caregivers.[6] In this study, spousal caregivers who experienced burden had a 63% higher mortality rate compared with caregivers who did not experience burden during a four-year study period.[6] More recent work has determined that mortality rates after the hospitalization of a spouse varied according to the diagnosis requiring admission.[14] The highest mortality rates among both men and women spousal caregivers occurred when hospitalization was for psychiatric disease or dementia.[14]

Many caregivers experience symptoms of depression and anxiety. Studies have found that the incidence of depression among caregivers ranges from 31% to 46%.[15–17] A large epidemiological study in Ontario, California, revealed an increase in any psychiatric diagnosis among caregivers compared with noncaregivers, 20.6% compared with 14.9%. Specifically for anxiety disorders, the increase among caregivers was 17.5% compared with 10.9% for noncaregivers.[18] The only category not higher among caregivers was substance abuse.[18] Two other studies showed equal or less alcohol use among caregivers.[15, 19]

Caregiver burden is also associated with increased risk of institutionalization of the care recipient.[20] Institutional placement is more closely associated with family support system collapse rather than with the patient’s own health deterioration.[21] Also, increased use of formal in-home services is seen in cases of high caregiver burden.[20]

Because caregiving is often a protracted experience, and the health conditions that afflict care-recipients have changing trajectories, caregiving has been conceptualized as a career.[12] Some researcher have investigated psychological trajectories in the caregiving career, documenting decreasing sense of mastery and competence among many family caregivers.[22]

Identifying family caregivers and assessing burden

Family caregivers have long been recognized as “hidden patients.”[24] Assessment of their physical and mental health status represents an emerging topic in health-care literature. It has been suggested that primary care physicians are in the unique position to discover patients who may be in the caregiving role by asking about caregiving while obtaining a social history.[25] Caregivers, however, have multiple other entry points into the health-care community, such as when applying for social services. The best time and place for caregiver assessment has been debated; however, it is universally agreed on that some form of caregiver assessment is a good practice. An expert panel on caregiving at the 2005 National Consensus Development Conference for Caregiver Assessment: Translating Research into Policy and Procedure developed a consensus report on caregiver assessment. Their extensive recommendations included identification, assessment of stressors, and current and needed resources.[26] One author described some of the outcomes of caregiver assessment as maintaining caregivers’ health and well-being, preventing social isolation of caregivers, and providing appropriate support to caregivers.[27]

Researchers have developed several instruments with which to describe and quantify the degree of burden felt by caregivers. One such instrument, the Zarit Burden Interview (ZBI), has become widely used by researchers studying caregivers.[28] The original form of the ZBI has 22 questions (ZBI-22). Researchers have studied several shorter versions of the ZBI.[29] The ZBI-1, which has only one question, has been shown to be effective when rapid screening is needed: “Overall, how burdened do you feel in caring for your relative?” (adapted from reference 29). However, some limitations with cancer caregivers were noted with the ZBI-1. See Table 56.1 for additional screening questions that can be used to better clarify the degree of burden perceived by a caregiver. Although the ZBI questionnaire was developed for research purposes, primary care providers should screen their patients for the overall degree of burden perceived by their patients who are caring for a relative.

Health-care providers should screen patients for depression if they are providing care to a relative. The 15-item Geriatric Depression Scale is a useful clinical tool for elderly caregivers;[30] however, simply asking, “Are you often sad or blue?” is also an effective screening question.

In response to your questioning of how her caregiving has impacted her, Jane confides in you the challenges of witnessing her mom’s decline: “As a health-care provider, I’ve been able to see the toll dementia takes on a patient and their family, but I have a whole new appreciation now that it’s happened to my family.” She says several times, “It is just so hard.” She describes that although she knows she is “doing right by her mom,” it takes away from time she spends with her husband, plus her own health care needs seem to “be on the back burner.” She reports sleeping less and often worrying about what is to come and whether she will have enough finances to support her mom’s continued aging in place.

Caregiving interventions

One of the large caregiving intervention trials in the past decade was the REACH Study.[31] The original study developed and tested two 24-month primary care interventions to alleviate caregiver burden. The interventions were behavior management and the addition of caregiver stress management. Both arms resulted in patient behavior improvement. However, only the stress reduction component helped caregiver burden.[31]

Psychoeducational interventions have been shown to lead to decreased burden and increased overall well-being and satisfaction.[23] Importantly, these effects have only been demonstrated if the intervention includes active participation and skills building for the caregivers.[23] Psychoeducational interventions such as skills training and counseling showed improved burden, but these effects decreased over time.[32] Support groups had modest effect on decreasing burden.[32] Pharmacologic intervention for the patient did help lessen caregiver burden.[32]