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FAMILY CAREGIVERS: Caring for older adults, working with their families.

Schumacher, Karen PhD, RN; Beck, Claudia A. MS, ANP, RN; Marren, Joan M. MEd, MA, RN

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Author Information

Karen Schumacher is an associate professor at the University of Nebraska Medical Center College of Nursing, Omaha; she was previously the Beatrice Renfield Visiting Nurse Scholar at the Visiting Nurse Service of New York. Claudia A. Beck is a geriatric clinical services manager and Joan M. Marren is the chief operating officer at the Visiting Nurse Service of New York, New York City. This article is 13th in a series that's supported in part by a grant from the Atlantic Philanthropies to the Gerontological Society of America. Nancy A. Stotts, EdD, RN, FAAN (nancy.stotts@nursing.ucsf.edu), a John A. Hartford scholar, and Carole E. Deitrich, MS, GNP, RN (carole.deitrich@nusing.ucsf.edu), are the series editors. Preparation of this article was supported by the Beatrice Renfield Visiting Nurse Scholar Program, Visiting Nurse Service of New York. The authors of this article have no significant ties, financial or otherwise, to any company that might have an interest in the publication of this educational activity.

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Abstract

As the U.S. population ages and health care costs soar, family and friends are called upon increasingly to provide care. While the typical caregiver is a 46-year-old woman with at least some college education, anyone in the infirm person's circle may be called upon to provide care. The kind of care provided varies greatly—from managing treatment and medication regimens to driving in from out of town to help with shopping—as does each caregiver's reaction to providing such care. While some find caregiving terribly stressful, others find it rewarding. Nurses need to know how to identify the primary caregiver, discern the level of strain caused by caregiving, and create a partnership with the caregiver to help ease the burden. Accompanying text explores one caregiver's experience.

Old age and infirmity do not always coexist. But when they do—when an older adult's health slowly or rapidly declines and frailty threatens independence—a family member is often the primary provider of care, at least for a time. And nurses are witness to the many manifestations of this increasingly common phenomenon: a daughter's worried phone call, a son's sudden appearance at his mother's office visits, a wife's determined organization of her husband's complex drug regimen. Sometimes families have discussed the many financial, legal, and personal issues surrounding caregiving before the need arises, but often that is not the case.

The current trend toward a community-based health care system means that when an older adult requires care, much of it will be provided at home. Estimates of the prevalence of family caregiving vary, depending on the way it's defined; there is no universally accepted definition. In general, the term family caregiving refers to care that is provided in response to illness or functional impairment that exceeds the “normal” care or help provided within families. For the purposes of this article, the term refers to care provided by caregivers who are related to an older adult through birth, marriage, or other long-term relationship, such as a life partner. Informal caregiving is a more inclusive term that refers to help provided by all nonprofessional providers of care, including family members, friends, neighbors, or members of a religious or other type of community.

In a 1996 survey sponsored by the National Alliance for Caregiving (NAC) and AARP, caregiving was defined as the provision of unpaid care to a relative or friend 50 years of age or older in order to help him take care of himself.1 Using this broad definition, the researchers estimated that around 23% of all U.S. households contained at least one person who was providing care currently or had done so in the previous 12 months.1 This caregiving took place in 22.4 million households nationwide. The survey further indicated that caregivers provided an average of 17.9 hours of care per week, with more than 4 million providing more than 40 hours of care per week. When the survey was updated in 2004 (this time, looking at care given to people 18 years of age and older), researchers again found that one in five caregivers reported providing “more than 40 hours of care per week.”2

Were families not so involved in caring for their older members, the cost of providing care would stagger the health care system. Researchers estimate that family caregiving for adults in 2000 had an economic value of $257 billion. That number represents a significant increase in just three years; the 1997 estimate was $196 billion.3, 4 As family caregivers have become an integral part of our health care system, attending to their needs has become a crucial nursing responsibility, one that can improve outcomes for both the patient and his caregiver.

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IT'S IMPORTANT TO IDENTIFY ALL CAREGIVERS

Figure. Julie Winoku...
Figure. Julie Winoku...
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He sits by his wife's hospital bed every day of her stay. Upon discharge, the day nurse assumes her husband is the sole caregiver and instructs him on appropriate medication administration. In fact, the couple's daughter is responsible for this task. A week later the patient is readmitted because of an inadvertent medication error; her husband had been unable to clearly relate the nurse's instructions to his daughter. Had the discharge nurse asked, “Who will be responsible for administering your wife's medication?” and contacted the daughter directly to provide instruction, this outcome might have been avoided.

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WHAT IS INVISIBLE CAREGIVING?

The patient has advanced prostate cancer and severe pain from bone metastasis. Despite the severity of his pain, he doesn't like to mention it, and he's mostly independent. Even so, his wife is involved in his care. She has learned to recognize his subtle, nonverbal signs of pain. She knows that he doesn't like to take pain medication, so when she sees that he's in pain, she urges him to use the medication as prescribed. On visits to the oncologist's office, she sometimes interjects “the truth” when her husband plays down the severity of his pain. This irritates him, but she reminds him that she's concerned about him and that he's able to do more of the things he enjoys when he takes the pain medication regularly. Although she doesn't provide hands-on care, she's a caregiver in a situation in which the cognitive, problem-solving, and interpersonal aspects of the role are paramount.

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WHO ARE THESE CAREGIVERS?

By providing a snapshot of caregivers, demographic data can be used in patient advocacy and in determining the allocation of resources. They also can be of use in abolishing stereotypes. What do the data tell us? According to a 2004 study by the NAC and AARP, the “typical caregiver is a 46-year-old woman who has at least some college experience and provides more than 20 hours of care each week to her mother.”2 Eighty-three percent of caregivers were providing care to a family member.

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The majority are women

Sixty-one percent of the caregivers in the study were women.2 Because women have a longer life expectancy than men, husbands are likely to be cared for by their wives, whereas older widows are likely to be cared for by adult daughters. And because many still view family caregiving as “women's work,” aging parents are more likely to receive caregiving assistance from adult daughters.5 But this fact should not crystallize into stereotype; family roles are more flexible than they once were, and the role of men in caregiving of the elderly has been changing,6 as has their role in child care.

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They can be of any age

While the average age of a caregiver is 46 (and 13% of caregivers were 65 years of age or older), a person may become a caregiver at any age, and each stage of life presents particular challenges.2 Among children and adolescents, caregiving responsibilities may affect their achievement of developmental tasks. Middle-aged caregivers, often called “the sandwich generation,”7 may already have extensive employment and parenting responsibilities. Older caregivers may have chronic health conditions themselves; in fact, among older couples, caregiving may be reciprocal.

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They can be of any racial or ethnic background

In working with family caregivers, it's important for the nurse to acknowledge the influence of race or ethnicity. The 2004 NAC–AARP study examined caregiving in different racial and ethnic groups.2 The researchers found that 17% of white households and 15% of African American households contain at least one person providing care to an adult 50 years of age or older. The proportions are somewhat lower among Asian American and Hispanic American households, at 14% and 13%, respectively. Cultural factors can also play a part. For example, in cultures in which respect for the elderly is important, “caring for one's own” or caring for parents in exchange for care received as a child may be a normal and valued part of adult life.8 In contrast, in cultures that emphasize individual achievement, family caregiving may be perceived as disruptive. One study found that African American caregivers were less likely than white caregivers to say that providing end-of-life caregiving had been “completely overwhelming”9 (although the authors surmised that white caregivers might have been “more forthcoming in their responses to the interview questions”). Cultural practices also influence who is most likely to be designated the caregiver. For example, in some Asian cultures, the tradition of filial piety dictates that eldest sons are responsible for their aging parents, and day-to-day caregiving often is provided by the son's wife.10, 11

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A CAREGIVER'S ASSESSMENT OF ASSESSMENTS

Accused, tried, and convicted of unspecified crimes against authority.

By Carol Levine

Carol Levine is director of the Families and Health Care Project at the United Hospital Fund in New York City. This article is adapted from a presentation at the Consensus Conference on Family Caregiver Assessments, sponsored by the Family Caregiver Alliance and funded by the Robert Wood Johnson Foundation, held in San Francisco on September 8, 2005. A complete report from the conference is available at www.caregiver.org.

Martin Luther King, Jr., and Henry James are forever linked in my life. On January 15, 1990—King's birthday—while driving and listening to James's Aspern Papers on tape, my husband and I were in a horrific accident. He was grievously injured in body and mind, and I was thrown immediately into the black hole of providing long-term, chronic care—where I remain today.

However, it is Franz Kafka who defined my initiation into caregiving. I've never had a formal caregiver assessment, but I've had lots of informal ones. In these assessments, like Josef K. in The Trial, I stand accused of unspecified crimes against authority.

Throughout the many months my husband was in a rehabilitation facility, I repeatedly asked to attend the regular meetings of his health care team. I was never allowed to do so. But I know I was discussed—soon after each meeting, a nurse on the case would inform me of my shortcomings. Because I continued to work, I wasn't present all day on weekdays (although I hired a “companion” to be with him when I couldn't be). I asked too many questions. I was unable to calm my husband when, because of the damage to his brain, he became delusional and enraged.

I was made to feel that nothing I did was good enough. Although I left my office every weekday to sit at his bedside from 4 PM to 10 PM (and spent all day each weekend), although I communicated daily with his therapists, although I brought music, pictures, calendars, and videos to orient him and stimulate his thinking, I was often told how other wives had sacrificed. Good wives was the message, those unlike me.

Sometimes the treatment I received as a caregiver was overtly hostile. Early in my husband's several-month stay at the rehabilitation facility, one nurse decided it was time to teach me how to put a condom catheter on my husband. I told her I wasn't ready to take this step, which carried so much emotional resonance, but that I would certainly learn before he was discharged. She forcibly put the condom catheter in my hand, pulled down the sheet, and said, “No, you have to learn now. He will always have to use one of these.” (At that point I still had every reason to believe that he would be able to overcome his incontinence.) I burst into tears; my husband started to cry, and she smiled and said, “Now see what you've done.”

At other times, nurses blithely overlooked the difficulties of my complicated caregiving situation. One visiting nurse, on her first trip to our home, took a quick look around my pleasant apartment, noted the books on the shelves, the clean kitchen and bathrooms. I could sense her thinking, “No problems here.” I was left to continue coping on my own with feelings of anxiety, exhaustion, and isolation.

Of course, many of the nurses involved in my husband's care have been skillful and kind; in my experience the two characteristics go together. Unfortunately, I remember the difficult ones most vividly (just as I'm sure that nurses remember the difficult families more readily than the easy ones). But I understand why some make quick judgments. Although they have intuition and experience, nurses and other health care professionals may lack the instruments to perform appropriate assessments.

At the United Hospital Fund, where I work, we recently completed a major study of caregivers' transitions when formal home care services are terminated. In a series of focus groups, nurses, social workers, and physical and occupational therapists all said things like, “As soon as I open the door, I can tell what this family is going to be like—cooperative and nice or hostile and dysfunctional.” And, they reported, their instincts were usually right—although I suspect that the magic of self-fulfilling prophecy was at work.

Staff need better tools to assess, systematically and without stereotypes, each caregiver's strengths and limitations. They need tools to help caregivers find resources and plan for services that will compensate for limitations. Developing these tools is the focus of one of our projects at the United Hospital Fund. Finding ways to relieve a caregiver of aspects of caregiving she finds most onerous would go a long way toward preventing exhaustion and burnout. But first, someone has to ask the right questions. Someone has to recognize that the family caregiver is an individual with independent needs and concerns. That someone could be, should be, a nurse.

These days I'm reading P.D. James instead of Henry. Kafka, however, is still on my bookshelf and in my life.

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ILLUMINATING INVISIBLE CARE

When the outpatient oncology nurse asks the elderly woman what she does as a caregiver to her husband, she answers, “Not much—he pretty much takes care of himself.” When the nurse asks more specific questions, such as, “What do you do to help your husband manage his pain?” and “How do you know when he is having pain?” the woman begins to relate her experience as a caregiver. Her story provides important information to the nurse, who responds by validating the significance of the caregiver's role and coaching her on how to tailor her husband's analgesia regimen to the situation, to make it more effective.

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WHAT DO CAREGIVERS DO?

Caregivers can play primary or secondary roles, and they may also perform their role from a distance. (See Is There Anybody Out There? on page 46.) Assessment of a caregiver's role is important; the following breakdown is a place to start.

* Primary caregivers. Typically, one person takes on the role of the primary caregiver, providing most of the day-to-day aspects of care. Spouses who are able are the most common primary caregivers, followed by adult daughters, adult sons, distant relatives, and friends.12, 13

* Secondary caregivers tend to help with intermittent activities, such as shopping, transportation, and home repairs. For example, when a spouse is the primary caregiver, adult children may be the secondary caregivers, providing emotional support and helping in emergencies.13, 14

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Activities of daily living

Family caregiving is often categorized as assistance with activities of daily living, such as eating, bathing, walking, and using the toilet, as well as assistance with “instrumental” activities of daily living, such as driving, household tasks, and managing personal finances.1, 5

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Activities requiring problem-solving skills and clinical judgment

Illness-related caregiving activities include managing symptoms of acute and chronic illnesses, coping with behaviors caused by illness, carrying out treatment regimens, and performing medical or nursing procedures—including in-home management of IV infusions, dialysis, and respiratory support.1, 15, 16 Family caregivers today are expected to monitor the patient's condition, recognize abnormalities, and know how to respond.17

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Activities requiring organizational and communication skills

Caregivers are also often responsible for navigating the health care and social services systems, accessing resources, communicating with providers and insurers, being the patient's advocate, and arranging for community services.17

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Invisible aspects of care

One study found that in addition to hands-on assistance, intergenerational caregivers (such as adult children providing care to elderly parents) engaged in “invisible” work. This is defined as (to paraphrase the study authors) “anticipatory” caregiving (care provided in anticipation of the sick person's needs), “preventive” caregiving (care provided in the hope of preventing illness, injury, or mental deterioration, for example), and “supervisory” caregiving (active and direct involvement of the offspring, such as arranging for care, checking up on the parent, making sure care has been provided, setting up appointments, and so on).18 But the caregivers in that study placed particular importance on trying to protect the older adult's self-image by shielding the older family member from the awareness that he is in need of care. For example, a daughter might begin to make more frequent “social visits” to her elderly father, remaining silent about her real desire to check on his health status. It's important that nurses recognize the impact of invisible aspects of caregiving (although it can be easy to overlook). Without such understanding, it's impossible to acknowledge the full scope of the caregiver's role.

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TIPS FOR NURSES BY HEALTH CARE SETTING

Hospital

Wait until the primary caregiver arrives to provide discharge instructions, or if someone other than the primary caregiver is picking the patient up, offer to call the primary caregiver with discharge instructions.

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Nursing home

Express appreciation for the caregiver's efforts to visit and do “little extras” for their family member. (Family caregiving doesn't end when an older adult goes to a nursing home.)

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Ambulatory care

After obtaining permission, invite the patient's caregiver in from the waiting room to participate in a post-examination review of the patient's health status and to hear any new instructions.

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Home care

Ascertain the patient's and caregiver's preferences for communication—the best day, time, and method (phone, e-mail, in person.) This will help manage expectations from the beginning of the relationship. Suggest periodic family meetings to review how the home care plan is working for the family.

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HOW DO CAREGIVERS LEARN TO PROVIDE CARE?

In the NAC–AARP study published in 1997, only 41% of caregivers reported that someone had instructed them in how to perform at least one caregiving activity.1 This is important because in the care of older adults, everyday skills may not be as straightforward as they are in other situations. For example, transporting a frail older adult is more complex than simply driving; it requires the caregiver to take into account possible environmental hazards as well as the older adult's functional abilities and stamina. It requires skill in the use of assistive devices and positioning a person for comfort.

Stewart and colleagues, in a 1993 study, asked caregivers: Who helped you learn to be a caregiver?19 Respondents said that health care professionals were their primary source for learning about physical care and setting up formal services. But they said they learned only a little from health care professionals about caring for the patient emotionally or dealing with the stresses of caregiving. Previous jobs and caregiving were the primary sources of information on those aspects of the caregiving role.

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CAREGIVING: STRESS OR SATISFACTION?

Theories of stress and coping suggest that the meaning of caregiving, or the way in which a caregiver perceives the situation, may influence some outcomes even more than the care provided.20, 21 For example, consider two middle-aged women, both caregivers for aging mothers with Alzheimer disease. One woman finds caregiving to be a burden; the other considers it a source of pride. The former is at higher risk for depression and is more likely to place her mother in a nursing home.

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Caregiver strain

Archbold and colleagues studied ways in which the caregiver's preparedness and the quality of the relationship between the giver and receiver of care influence a caregiver's “role strain”—the caregiver's perceptions of strain related to providing care, a lack of resources, worrying, role conflict (such as caregiver versus spouse), economic burden, mismatched expectations, tension in relationships, and feeling manipulated.”22 They found a correlation between these two factors and different aspects of strain six weeks after patients' hospital discharge. By nine months after the hospitalization, the relationships between preparedness and every aspect of strain had diminished, but a poor relationship with the receiver of care was still strongly related to strain. This research demonstrates the ways that a caregiver's strain can change over time.

The rewards and satisfactions of caregiving have received increased attention recently.23, 24 Caregiving may be a source of pride, in the fulfillment of an important commitment, the mastery of new skills, or the feeling of being appreciated. For some, caregiving provides a way to express love or to repay a family member who needs care. In interviews with family caregivers, Nolan and colleagues identified three major sources of satisfaction derived from caregiving24:

* interpersonal satisfaction, such as the satisfaction derived from sharing pleasure or feeling closer or appreciated

* personal satisfaction, such as that derived from finding meaning, developing competence, or fulfilling duty

* satisfaction from promoting positive or avoiding negative consequences, such as the satisfaction derived from the caregiver's belief that only she can provide the best possible care to the family member

Caregiver strain and caregiver satisfaction may be experienced simultaneously.

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Implications

Research on caregivers' strain and satisfaction has a number of clinical implications for nurses. First, nurses should assess the meaning of the caregiving to each individual caregiver; situations that appear to be similar may have very different meanings for those involved. Referral to an appropriate specialist is indicated when a caregiver is found to be at risk for poor health outcomes because of negative feelings about caregiving responsibilities. Second, nurses should assess the potential rewards and sources of strain for the caregiver25; the latter may indicate the need for intervention. Third, nursing assessment should be conducted periodically, as situations evolve.

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Interventions

According to Srensen and colleagues, interventions on behalf of caregivers can be attempts either to reduce demands on the caregiver (by providing respite and training) or improve the caregiver's sense of well being and ability to cope (through support groups).26 In that metaanalysis, researchers evaluated the effects of 78 caregiver intervention studies and found that the most significant improvements resulted from interventions aimed at caregivers' knowledge and abilities.26 Psychotherapy and psychoeducational interventions had the broadest positive effects.

Nurses are tailoring interventions to the needs of specific patient populations.27–30 Otswald and colleagues developed a seven-week interdisciplinary training program for caregivers of people with dementia.29, 30 Education included topics such as dementia, helping caregivers develop caregiving skills and build confidence, and improving communication among family members. Caregivers in the intervention group were significantly less distressed about the disruptive behaviors of their care receivers, even though the frequency of disruptive behaviors did not decrease.

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IS THERE ANYBODY OUT THERE?

Communicating with long-distance caregivers.

Long-distance caregiving has been defined as care provided by those “living one hour or more away.”1 Although those providing such care may be present only intermittently, they can play an important role by becoming involved in problem solving, decision making, and advocacy. A survey of 1,130 caregivers found that “long-distance caregivers reported substantial regular personal contact with the person they were helping; 51% reported visiting at least a few times a month.”1 Interestingly, 58% of long-distance caregivers in the survey were men. The following are a few tips to establish better communication with long-distance caregivers.

* Conduct a family assessment with the older adult. Identify long-distance caregivers and assess whether their availability meets the needs of the older adult. Ask the patient for approval to contact the long-distance caregiver.

* Agree upon a plan for communication. For example, one sibling might be designated the primary contact person. Likewise, if possible, identify a nurse case manager who can serve as the caregiver's primary contact.

* Give the caregiver contact information for every health care provider involved in the older adult's care and inform her of the most effective way to communicate with each person on the list. (For example, some may prefer e-mail messages to telephone calls.)

* Capitalize on available technology to enhance communication. For example, using a speaker phone can enable long-distance caregivers to participate in patient consultations.

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REFERENCE

1. MetLife Mature Market Institute, National Alliance for Caregiving. Miles away: the MetLife study of long-distance caregiving. Westport, CT: The Institute; 2004 Jul. http://www.caregiving.org/data/milesaway.pdf. Cited Here...

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HEALTH RISKS RELATED TO CAREGIVING?

Caregivers' burden can lead to a chronic stress response that can worsen health. A recent study concluded that “the two greatest predictors of caregiver's physical strain” are poor health and the feeling that there is no choice but to take on additional responsibilities.2

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Psychological outcomes

Studies have demonstrated that caregivers have higher levels of depressive symptoms, clinical depression, and anxiety than the general population or controls (who were not caregivers).31, 32 Women, caregivers of older adults with dementia, and caregivers of functionally impaired older adults appear to be at higher risk. 32–34 Schulz and colleagues found that “the evidence linking psychiatric health effects and dementia caregiving is robust.”32

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Physical outcomes

Research indicates that caregiving is associated with biomarkers of chronic stress (elevated levels of hormones such as cortisol) and that caregivers' immune function tends to be lower than that of controls (who were not caregivers).35–37 In 1999, Schulz and Beach identified caregiving as an independent risk factor for death (it was the first study to make this correlation, the authors believe).38 Caregivers who were experiencing strain were 63% more likely to die during a four-year period than those in a control group, even after controlling for sociodemographic and health variables.

The caregiver tends to have a more negative perception of her own health than one who isn't a caregiver.31, 32, 35, 39 Self-care is compromised; common complaints include insomnia; forgetting to take medications; and having no time to exercise, see a doctor, or rest when ill.39, 40 Burton and colleagues found that spouse caregivers providing a high level of care (care provided to a person with at least one “[activities of daily living] impairment”) had a “stronger association with poor preventative health behaviors.”40 The results of this study underscore the importance of understanding the intensity of caregiving, especially when planning interventions.

Caregivers in poor health are particularly vulnerable. One study found that 36% of family and informal caregivers “reported being in fair to poor health or having a serious health condition.”41 They were providing a higher intensity of care (more hours per week, assistance with a higher number of activities of daily living and instrumental activities) and were more likely to have difficulty doing so than their less vulnerable counterparts. They were also more likely to “believe that their physical health suffered as a result of caregiving.” But they were no more likely to be receiving formal services from professional or nonprofessional caregivers.

Abuse and neglect may take the form of inadequate provision of care, an unhealthy environment, inappropriate management of finances, or a lack of respect for the rights of the older adult.42 Even when poor care does not meet the criteria for neglect or abuse, it can be a detriment to an older adult's health and well-being. For example, if a caregiver is unable to understand or administer a complex medication regimen, the older adult may become under- or overmedicated. If the caregiver is unable to recognize and correct safety risks, the older adult may experience falls or other injuries. Assessment of the quality of family caregiving is essential; ideally, it will include an in-home component. Nurses in hospital or clinic settings should initiate referrals to home care services if concerns arise about the quality of family caregiving.

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A PARTNERSHIP BETWEEN PROVIDER AND CAREGIVER

The essential role of the family caregiver is best fulfilled when providers work with her in partnership—by blending the professional's expertise in health care with the caregiver's knowledge of the family member.43 Relationship building is often overlooked in health care today, but it's time well spent. It's important that nurses reach out to caregivers (who may be reluctant to assert themselves in clinical situations)—by expressing, for example, their desire to work with both the older adult and family caregiver.

Once a patient has given approval to clinicians to communicate with the caregiver, nurses can make suggestions, “If you'd like, I'd be happy to call your wife and go over these instructions with her when she gets home from work,” or “People often say that two sets of ears are better than one. Would you like to invite your sister to join us while we go over this information on low-sodium diets?”

Assessing the caregiver involves observing the interaction between the giver and the receiver of care, as well as addressing the following topics:44

* the caregiver's roles and responsibilities

* caregiving difficulties

* the caregiver's preparedness

* the quality of care

* the caregiver's physical and mental health and self-care activities

* the existence and involvement of extended family and social support

* the relationship between the caregiver and care receiver

* the family's cultural background

Assessment may include the use of validated assessment tools, such as the Preparedness for Caregiving Scale and the Mutuality Scale45 or the Caregiver Strain Index.46 (These tools can be found under “Family Caregiving” at the Nurse Competence in Aging Web site: www.geronurseonline.org.) An individualized plan of care will follow the assessment.

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Establishing a partnership

A recent qualitative study identified seven nursing actions that help in creating and sustaining a partnership with caregivers: surveillance (ongoing monitoring), teaching (providing information and instruction), coaching (helping caregivers apply knowledge and develop skills), fostering partnership (fostering communication and collaboration between the caregiver and care receiver and between them and the nurse), providing psychosocial support (attending to psycho-social well-being), rescuing (providing a safety net by stepping in to provide direct care and making clinical decisions), and coordinating (orchestrating the work of other health care team members and the activities of the caregiver).47 This research-based model is relevant for both acute care and community health care settings.

The guiding principle of the partnership model is that family caregivers must not be allowed to “fail” while providing care; a nurse should be available to step in when the demands of the situation exceed family members' capabilities. And the nurse should be prepared to step back when the family's support is what's needed.

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“A NEW LOOK AT THE OLD” ONLINE

A series of Webcasts designed to improve multidisciplinary care.

Further explore the topics presented in the series A New Look at the Old by going online; over the course of the series 15 free Webcasts will run, created through a collaboration of AJN, the Gerontological Society of America, and Trinity Healthforce Learning and sponsored in part through a grant from Atlantic Philanthropies. The Webcast “Staffing Matters” first aired in January, and a new program premiered in May on depression in older adults. For information on the schedule or to view an archive of previous Webcasts, go to www.nursingcenter.com/AJNolderadults. This Web site includes a forum for comments and questions about the Webcasts or articles in this series.

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REFERENCES

1. National Alliance for Caregiving, American Association of Retired Persons. Family caregiving in the U.S.: findings from a national survey. Washington, DC: The Association; 1997 Jun.

2. National Alliance for Caregiving, American Association of Retired Persons. Caregiving in the U.S. 2004 Apr. http://www.caregiving.org/data/04finalreport.pdf.

3. Arno PS, et al. The economic value of informal caregiving. Health Aff (Millwood) 1999;18(2):182–8.

4. Arno PS. Economic value of informal caregiving: 2000. American Association of Geriatric Psychiatry conference; 2002 February 24; Orlando, FL. http://www.thefamilycaregiver.org/pdfs/pa2000.ppt.

5. Walker A, et al. Informal caregiving to aging family members: a critical review. Fam Relat 1995;44:404–11.

6. Kaye LW, Applegate JS. Men as elder caregivers: a response to changing families. Am J Orthopsychiatry 1990;60(1):86–95.

7. Spillman BC, Pezzin LE. Potential and active family caregivers: changing networks and the “sandwich generation.” Milbank Q 2000;78(3):347–74.

8. Dilworth-Anderson P, et al. Issues of race, ethnicity, and culture in caregiving research: a 20-year review (1980–2000). Gerontologist 2002;42(2):237–72.

9. Phipps E, et al. Family care giving for patients at life's end: report from the cultural variations study (CVAS). Palliat Support Care 2003;1(2):165–70.

10. Jones P. Asian American Women Caring for Elderly Parents. J Fam Nurs 1996;2(1):56–75.

11. Chao SY, Roth P. The experiences of Taiwanese women caring for parents-in-law. J Adv Nurs 2000;31(3):631–8.

12. Cantor MH, Little V. Aging and social care. In: Binstock RH, Shanas E, editors. Handbook of aging and the social sciences. 2nd ed. [The handbooks of aging]. New York: Van Nostrand Reinhold; 1985. p. 745–81.

13. Penning MJ. Receipt of assistance by elderly people: hierarchical selection and task specificity. Gerontologist 1990;30(2):220–7.

14. Tennstedt SL, et al. Informal care for frail elders: the role of secondary caregivers. Gerontologist 1989;29(5):677–83.

15. Scott LD. Technological caregiving: a qualitative perspective. Home Health Care Management and Practice 2001;13(3):227–35.

16. Smith CE. A model of caregiving effectiveness for technologically dependent adults residing at home. ANS Adv Nurs Sci 1994;17(2):27–40.

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