Family Caregiving   11  

Deborah C. Messecar

OVERVIEW

Family caregivers are a key link in providing safe and effective transitional care to frail older adults as they move across levels of care (e.g., acute to subacute) or across settings (e.g., hospital to home; Bauer, Fitzgerald, Haesler, & Manfrin, 2009; Coleman & Boult, 2003; Naylor, 2003; Naylor & Keating, 2008; Naylor, Kurtzman, & Pauly, 2009). Frail older adults coping with complex chronic conditions are vulnerable to problems with care as they typically have multiple providers and move frequently between and among health care settings. Incomplete communication among providers and across health care agencies is linked to high-risk care transitions with adverse outcomes and an increased risk of hospital readmission and or length of hospital stay (Bauer et al., 2009; Geary & Schumacher, 2012; Jencks, Williams, & Coleman, 2009). Nurses in collaboration with family caregivers can bridge the gap between the care provided in hospital and other settings and the care needed in the community. Transitional care for frail older people can be improved if interventions address family inclusion and education, communication exists between health care workers and family, and interprofessional communication and ongoing support after the transition.

Helping Caregivers Take on the Caregiving Role

Helping the caregiver with the role-acquisition process is a critical nursing function that facilitates good transitional care. Indicators of a healthy assumption of the caregiving role are those factors that either indicate a robust and positive role-acquisition process or signal potential difficulty with assuming the caregiver role. When trying to ascertain what those indicators might be, the following questions about the caregiver role-acquisition process can be posed: What constitutes health during the role-acquisition process? What indicates a positive state of health during this process? and What threats to health may occur as the process unfolds? (Schumacher, 1995, p. 219). Because the role-transition process unfolds over time, identifying process indicators that move patient and family members either in the direction of health or on the way to vulnerability and risk allows early assessment and intervention to facilitate healthy outcomes of the caregiving role acquisition (Schumacher, Beck, & Marren, 2006). If unhealthy role-taking transitions can be identified, then they can either be prevented or ameliorated.

Who Is Likely to Be or Become a Caregiver?

Being a family caregiver is a widespread experience in the United States. Depending on how family caregiving is defined, national surveys estimate that up to 65 million people or 29% of the U.S. population provide care for a chronically ill, disabled family member or friend during any given year (National Alliance for Caregiving [NAC] & AARP, 2009). Reflecting an increasing trend, 38% of all family caregivers of adults older than 18 years are men, 62% are women, and the majority is older than 48 years (NAC & AARP, 2009). Among the primary family caregivers of disabled or ill adults older than 65 years, the proportion of male caregivers is lower (about 32%), but this number has increased from prior years (Wolff & Kasper, 2006). Primary family caregivers usually take care of relatives (86%), and of these, most care for a parent (36%), an in-law (8%), or grandparent or grandparent-in-law (7%; NAC & AARP, 2009). Older caregivers who are 65 years or older are more likely to be caring for a spouse than younger caregivers (19% vs. 3%), whereas younger caregivers are more likely to be caring for a parent or parent-in-law (48% vs. 23%). For frail older adults, it is estimated that 41.3% of caregivers are adult children and 38.4% are spouses (Wolff & Kasper, 2006). The most common caregiver arrangement remains that of an adult female child providing care to an elderly female parent (NAC & AARP, 2009). Many caregivers are older and are at risk of chronic illness themselves. In addition, national surveys indicate a trend in the United States of care recipients being older and more disabled, and more caregivers acting as the primary source of care (NAC & AARP, 2009; Wolff & Kasper, 2006). Family and friends continue to provide more than 80% of all long-term care services in the country.

Impact of Unhealthy Caregiving Transitions on Caregiver

Caregiving has documented negative consequences for the caregiver’s physical and emotional health. Caregiving-related stress in a chronically ill spouse results in a 63% higher mortality rate than their noncaregiving peers (Schulz & Beach, 1999). The impact of caregiving on health increases over time. Among caregivers providing care for 5 years or more, 23% report that their health is fair or poor (NAC & AARP, 2009). Stress from caring for an older adult with dementia has been shown to impact the caregiver’s immune system for up to 3 years after their caregiving ends (Kiecolt-Glaser et al., 2003). Caregivers who live with their care recipients report poorer health (28%) versus 13% for those who live apart. Caregivers who report high burden and/or provide more hours of care per week say their health has suffered (NAC & AARP, 2009). Spouse caregivers who provide heavy care (36 or more hours per week) are six times more likely than noncaregivers to experience symptoms of depression or anxiety; for child caregivers, the rate is twice as high (Cannuscio et al., 2002). In addition to mental health morbidity, family caregivers also experience physical health deterioration. Family caregivers have chronic conditions at more than twice the rate of noncaregivers (NAC & AARP, 2009). Family caregivers experiencing extreme stress have also been shown to age prematurely. It is estimated that this stress can take as much as 10 years off a family caregiver’s life (Arno, 2006).

BACKGROUND AND STATEMENT OF PROBLEM

Definitions

Family Caregiving

Family caregiving is broadly defined and refers to a broad range of unpaid care provided in response to illness or functional impairment to a chronically ill or functionally impaired older family member, partner, friend, or neighbor that exceeds the support usually provided in family relationships (Arno, 2006; Schumacher, Beck, et al., 2006).

Caregiving Roles

Caregiving roles can be classified into a hierarchy according to who takes on the bulk of responsibilities versus only intermittent supportive assistance. Historically, primary caregivers have been defined as those caregivers who tend to provide most of the everyday aspects of care, whereas secondary caregivers were defined as those who help out as needed to fill the gaps (Cantor & Little, 1985; Penning, 1990; Tennstedt, McKinlay, & Sullivan, 1989). Among caregivers who live with their care recipients, spouses account for the bulk of primary caregivers, whereas adult children are more likely to be secondary caregivers. The range of the family caregiving role includes protective caregiving, like “keeping an eye on” an older adult who is currently independent but at risk, to full-time, round-the-clock care for a severely impaired family member. Health care providers may fail to assess the full scope of the family caregiving role if they associate family caregiving only with the performance of tasks.

Caregiver Role Transition

Caregiver role acquisition is a family role transition that occurs through situated interaction as part of a role-making process (Schumacher, 1995). This is the process of taking on the caregiving role at the beginning of caregiving or when a significant change in the caregiving context occurs. Role transitions occur when a role is added to or deleted from the role set of a person—or when the behavioral expectations for an established role change significantly. Role transitions involve changes in the behavior expectations along with the acquisition of new knowledge and skills (Schumacher, Beidler, Beeber, & Gambino, 2006; Schumacher, Stewart, Archbold, Dodd, & Dibble, 2000). Examples of major role transitions are becoming a new parent, getting a divorce, and changing careers. The acquisition of the family caregiving role is a specific type of role transition that occurs within families in response to the changes in health of a family member who has suffered a decline in his or her self-care ability or health.

Indicators of Healthy Caregiver Role Transitions

The broad categories of indicators of healthy transitions include subjective well-being, role mastery, and well-being of relationships. These are the subjective, behavioral, and interpersonal parameters of health most likely to be associated with healthy role transitions (Schumacher, 1995). Subjective well-being is defined as “subjective responses to caregiving role transition” (Schumacher, 1995, p. 219). Subjective well-being includes any pattern of subjective reactions that arise from assuming the caregiver role within the boundary of the caregiving situation. Examples of some of the more important possible threats to subjective well-being could include role strain and depression. Role mastery is associated with accomplishment of skilled role performance and comfort with the behavior required in a new health-related care situation. Examples of threats to role mastery, which indicate a vulnerability and risk of unhealthy transitions, are role insufficiency and lack of preparedness. Well-being of relationships refers to the quality of the relationship between the caregiver and older adult. Examples of threats to well-being of relationships are family conflict or a poor quality of relationship with the care receiver.

Family Caregiving Activities

Family caregiving activities include assistance with day-to-day activities, illness-related care, care management, and invisible aspects of care. Day-to-day activities include personal care activities (bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet) and instrumental activities of daily living (IADL; meal preparation, grocery shopping, making telephone calls, and money management; NAC & AARP, 2009; Walker, Pratt, & Eddy, 1995). Illness-related activities include managing symptoms, coping with illness behaviors, carrying out treatments, and performing medical or nursing procedures that include an array of medical technologies (Schumacher, Beidler, et al., 2006; Schumacher et al., 2000). Care management activities include accessing resources, communicating with and navigating the health care and social services systems, and acting as an advocate (Schumacher, Beidler, et al., 2006; Schumacher et al., 2000). Invisible aspects of care have been defined as protective actions the caregiver takes to ensure the older adult’s safety and well-being without his or her knowledge (Bowers, 1987).

Caregiver Assessment

Caregiver assessment refers to an ongoing iterative process of gathering information that describes a family caregiving situation and identifies the particular issues, needs, resources, and strengths of the family caregiver.

Risk Factors for Unhealthy Caregiving Transitions

Gender

Female caregivers are more likely to provide a higher level of care than men, which is defined as helping with at least two activities of daily living (ADL) and providing more than 40 care hours per week. Male caregivers are more likely to provide care at the lowest level, which is defined as no ADL and devoting very few hours of care per week (NAC & AARP, 2009; Pinquart & Sörensen, 2006a). A number of studies have found that female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress caused by caregiving (Davies, Sridhar, Newkirk, Beaudreau, & O’Hara, 2012; Mahoney, Regan, Katona, & Livingston, 2005; Yee & Schulz, 2000); lower levels of physical health and subjective well-being than caregiving men (Pinquart & Sörensen, 2006a); and are at a higher risk of adverse outcomes (Schulz, Martire, & Klinger, 2005). In the pooled analysis from the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) trials, females had higher initial levels of burden and depression (Gitlin et al., 2003). However, Freedman, Cornman, and Carr (2014) found that there are positive aspects of spousal caregiving for older wives that offset other unpleasant aspects of the role. Female spouse caregivers responded to nursing home placement of their care recipient with decreased burden and depression compared with their male counterparts in the New York University caregiver intervention (Gaugler, Roth, Haley, & Mittelman, 2011).

Ethnicity

Rates of caregiving vary somewhat by ethnicity. Among the U.S. adult population older than 18 years, 17% of White and 15% of African American families provide informal care, whereas a slightly lower percentage of Asian Americans (14%) and Hispanic Americans (13%) are engaged in caregiving for persons older than 50 years (NAC & AARP, 2009). These prevalence rates are not significantly different from those seen in 2004. However, in another national survey, which looked only at people older than 70 years, 44% of Latinos were found to receive informal home care compared with 34% of African Americans and 25% of non-Hispanic Whites (Weiss, González, Kabeto, & Langa, 2005). Ethnic differences are also found regarding the care recipient. Among people aged older than 70 years who require care, Whites are the most likely to receive help from their spouses, Hispanics are the most likely to receive help from their adult children, and African Americans are the most likely to receive help from a nonfamily member (National Academy on an Aging Society, 2000).

Studies show that ethnic minority caregivers provide more care (Pinquart & Sörenson, 2005) and report worse physical health than White caregivers (Dilworth-Anderson, Williams, & Gibson, 2002; Pinquart & Sörenson, 2005). African American caregivers experience less stress and depression and get more rewards related to caregiving when compared with White caregivers (Cuellar, 2002; Dilworth-Anderson et al., 2002; Gitlin et al., 2003; Haley et al., 2004; Pinquart & Sörenson, 2005). However, the interaction between minority status and relationship to the care receiver on caregiving responses in a recent study on impact of attachment and model of self indicates the possibility that interaction moderates the relation between relationship factors and caregiving responses in African American caregivers (Morse, Shaffer, Williamson, Dooley, & Schulz, 2012). Other trials have reported similar differential effects for African American, Hispanic or Latino, and White caregivers (Belle et al., 2006; Lee, Czaja, & Schulz, 2010). Hispanic and Asian American caregivers exhibit more depression than White caregivers (Gitlin et al., 2003; Pinquart & Sörensen, 2005). In addition, formal services are rarely used by ethnic minorities, which puts them at further risk of negative outcomes (Dilworth-Anderson et al., 2002; Pinquart & Sörensen, 2005). A meta-analysis of three qualitative studies examined African American, Chinese, and Latino caregiver impressions of their clinical encounters around their care receiver’s diagnosis of Alzheimer’s disease (Mahoney, Cloutterbuck, Neary, & Zhan, 2005). The primary issues identified in the analysis by Mahoney, Cloutterbuck, et al. (2005) were disrespect for concerns as noted by African American caregivers, stigmatization of persons with dementia as noted by Chinese caregivers, and fear that home care would not be supported as noted by Latino caregivers. Goins et al. (2011) found among American Indian adults that greater cultural identity and engagement in traditional healing practices are associated with greater likelihood of taking on the caregiving role. These findings indicate a need for greater culturally sensitive communications from health care providers.

Age

Several recent studies have found that younger age caregivers compared with their older counterparts are more prone to depressive symptoms and burden from caregiving (Morse et al., 2012; Shankar, Hirschmanm, Hanlon, & Naylorm, 2014). In a subsequent analysis from the REACH I trials, being younger was associated with higher levels of depression for Black and White caregivers but not for Hispanic caregivers (Sörensen & Pinquart, 2005). In the 2009 California Health Interview Survey, self-identified baby boomer caregivers reported engaging in poor health behaviors due to the demands of providing care (Hoffman, Lee, & Mendez-Luck, 2012). These findings are in contrast to past research that has indicated that spouse caregivers, who tend to be older, have more burden. In REACH II subgroup follow-up analyses of minority caregivers, older Black caregivers experienced a decrease in burden with the intervention compared with younger Black caregivers (Lee et al., 2010), a finding that could be a result of the fact that older caregivers were more likely to be spouses.

Income and Educational Level

Low income is also related to being an ethnic minority and being “non-White,” and the latter are risk factors for poorer health outcomes. Persons who become caregivers may be more likely to have incomes below the poverty level and be in poorer health, independent of caregiving (Vitaliano, Zhang, & Scanlan, 2003). Usually, educational level has been combined with income in most caregiving studies, so there is a lack of data on this variable. One study (Buckwalter et al., 1999) reported that caregivers who were less educated tended to report as slightly more depressed than those who were better educated. This is consistent with the findings from the REACH trial meta-analysis (Gitlin et al., 2003). In the meta-analysis completed by Schulz et al. (2005), caregivers with low incomes and low levels of education were more at risk of adverse outcomes. In one recent study, limited finances were associated with greater burden among caregivers of cognitively impaired elderly adults at the time of hospitalization (Shankar et al., 2014).

Relationship (Spouse, Nonspouse)

Past research conducted primarily among non-Hispanic White samples has shown that caregiving outcomes differ between nonspouse (who are mostly adult children) and spouse caregivers (Morse et al., 2012; Pinquart & Sörensen, 2004; Shankar et al., 2014). In a meta-analytic comparison study of differences in spouse, adult children, and children-in-law as caregivers of older adults, spouses had more depression, greater burden, and lower well-being. Greater psychological distress among spouses was explained primarily by higher levels of providing care (Pinquart & Sörensen, 2011). Children-in-law viewed the caregiving relationship less positively and had fewer rewards from caregiving (Pinquart & Sörensen, 2011). In other reviews of the literature, authors noted that spousal caregivers have reported higher levels of depression than nonspouses (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001; Pruchno & Resch, 1989) and that spouses reported less “upset” with the care receiver’s behavior than non-spouses, who showed no decrease in “upset.” A prior meta-analysis of caregiving studies found that spousal caregivers benefited less from existing interventions than adult children (Sörensen, Pinquart, & Duberstein, 2002).

Quality of Caregiver–Care Receiver Relationship

Disruption in the caregiver and care receiver relationship (Croog, Burleson, Sudilovsky, & Baume, 2006; Flannery, 2002) and/or a poor quality of relationship (Archbold, Stewart, Greenlick, & Harvath, 1990, 1992; Shim, Landerman, & Davis, 2011) can make caregiving seem more difficult even if the objective caregiving situation (e.g., hours devoted to caregiving and number of tasks performed) does not seem to be too demanding. Archbold et al. (1992) reported that the deleterious effects of the lack of preparedness on caregiver strain faded after 9 months; however, a poor relationship with the care receiver remained strongly related to caregiver strain. Reporting a poorer quality of relationship with the care receiver was associated with a 23.5% prevalence of anxiety and 10% prevalence of depression in the Mahoney, Regan, et al. (2005) descriptive study.

Lack of Preparedness

Most caregivers are not prepared for the many responsibilities they face and receive no formal instruction in caregiving activities (NAC & AARP, 2009). New duties can include complex tasks such as administering medications, managing side effects, monitoring complex chronic conditions, and/or assuming responsibility for new tasks like handling insurance claims and doing personal care. Moorman and Macdonald (2013) found that medical complexity of the care recipients’ care is an important contributor to caregiving strain. Yet, although caregivers are called on to take on these many new responsibilities, they often lack the skills needed to do so (Schumacher, Beck, et al., 2006). Stewart, Archbold, Harvath, and Nkongho (1993) reported that although health care professionals were a caregiver’s main source of information on providing physical care, the caregiver received no preparation on how to care for the patient emotionally or deal with the stresses of caregiving. Lack of preparedness can significantly increase the caregiver’s perceptions of strain, especially during times of transition from hospital to home (Archbold et al., 1990, 1992).

Baseline Levels of Burden and Depressive Scores

In a meta-analysis of 84 caregiving studies, Pinquart and Sörensen (2003) found that caregivers have higher levels of stress and depression as well as lower levels of subjective well-being, physical health, and self-efficacy than noncaregivers. The strongest negative effects of caregiving were observed for clinician-rated depression. Differences in perceived stress and depression between caregivers and noncaregivers were larger in spouses than in adult children (Pinquart & Sörensen, 2003). Caregivers of care receivers who have dementia (Pinquart & Sörensen, 2006a) have more problems with symptom management (Butler et al., 2005; Grande, Farquhar, Barclay, & Todd, 2004) and problematic communication (Tolson, Swan, & Knussen, 2002) and have also reported increased burden, strain, and depression across studies.

Physical Health Problems

Vitaliano et al.’s (2003) quantitative review of 23 studies from North America, Europe, and Australia examined relationships of caregiving with several health outcomes. They found that caregivers are at greater risk of health problems than are noncaregivers. These studies included 1,594 caregivers of persons with dementia and 1,478 noncaregivers who were similar in age (mean: 65.6 years old) and sex ratio (65% women, 35% men). In this review, six physiological and five self-reported categories were examined that are indicators of illness risk and illness. The physiological categories included level of stress hormones, antibodies, immune counts/functioning, and cardiovascular and metabolic variables. Caregivers had a 23% higher level of stress hormones (adrenocorticotropic hormone, catecholamines, cortisol, etc.) and a 15% lower level of antibodies (Epstein–Barr virus, herpes simplex, immunoglobulin G test) than did noncaregivers. Comorbid medical illnesses are important because many caregivers are middle-aged to older adults, and they may be ill before they become caregivers. It is interesting to note that the relationship between caregiver status and physiological risk was stronger for men than women (Vitaliano et al., 2003). High perceived strain was associated with increased mortality, which did not differ by race, gender, or type of caregiving relationship (i.e., child, spouse; Perkins et al., 2013). Zarit et al. found that how caregivers who managed their own health poorly were at greater risk of increased stress-related caregiving outcomes (Zarit, Femia, Kim, & Whitlatch, 2010).

ASSESSMENT OF THE PROBLEM

Although systematic assessment of the patient is a routine element of clinical practice, assessment of the family caregiver is rarely carried out to determine what help the caregiver may need. Effective intervention strategies for caregivers should be based on an accurate assessment of caregiver risk and strengths. According to a broad consensus of researchers and family caregiving organizations (Schumacher, Beck, et al., 2006; Stewart et al., 1993), assessing the caregiver should involve addressing the following topics. These are applicable across settings (e.g., home, hospital) but may not need to be measured in every assessment.

Caregiving Context

The caregiving context includes the background on the caregiver and the caregiving situation. The caregiver’s relationship to the care recipient (spouse or nonspouse) is important because spouse and nonspouse caregivers have different risks and needs (Gitlin et al., 2003; Pinquart & Sörensen, 2011; Sörensen et al., 2002). The caregiver’s various roles and responsibilities can either take away from or enhance his or her ability to provide care. For example, working caregivers may have to develop strategies to juggle family and work responsibilities, so we need to know what their employment status is (work/home/volunteer; Pinquart & Sörensen, 2006a). The duration of caregiving (Sörensen et al., 2002) can give the clinician clues about how new caregiving is for the caregiver, or alert the clinician to possibility of caregiver exhaustion with the role. Questions about household status, such as how many people are in the home and the existence and involvement of extended family and social support (Pinquart & Sörensen, 2006a), can give the clinician clues about how much support the caregiver has readily available. Depending on the type of impairment of the care receiver, the physical environment of the home or facility where care takes place can be very important (Vitaliano et al., 2003). Determine what the caregiver’s financial status is; for example, is he or she getting by, or is the caregiver short of funds to provide for everyday necessities (Vitaliano et al., 2003)? Ask about potential resources that the caregiver could choose to use and list these (Pinquart & Sörensen, 2006a). Explore the family’s cultural background (Dilworth-Anderson et al., 2002; Goins et al., 2011) and look for clues on how to use this as a resource.

Caregiver’s Perception of Recipient’s Health and Functional Status

List activities the care receiver needs help with; include both ADL and IADL (Pinquart & Sörensen, 2003, 2006a). Determine whether the care recipient has any cognitive impairment. If the answer to this question is “yes,” ask whether there are any behavioral problems (Gitlin et al., 2003; Sörensen et al., 2002). The presence of mobility problems can also make caregiving more difficult. Assess this by simply asking whether the care recipient has problems with getting around (Archbold et al., 1990; see Chapter 7, “Assessment of Physical Function”).

Lack of Caregiver Preparedness

Does the caregiver have the skills, abilities, or knowledge to provide the care recipient with needed care? To assess preparedness, use questions from the Preparedness for Caregiving Scale (PCGS) (see consultgerirn.org/resources). The PCGS was developed by Archbold et al. (1990, 1993). The concept of preparedness derives from role theory, in which socialization to a role is assumed to be important for role enactment and performance. The questions prompt caregivers to rate how well prepared they think they are for caregiving in four perspectives of domain-specific preparedness: physical needs, emotional needs, resources, and stress. The clinician can interview the caregiver or ask the caregiver to complete the scale like a survey. The responses to the scale items can also be tallied and averaged for an overall score. If pressed for time, the clinician can simply ask, overall, how well prepared the caregiver thinks he or she is to care for a family member, and then follow this with more specific questions if the response indicates preparedness is low. The PCGS was evaluated in a longitudinal correlational study of family caregivers (N = 103) of older patients with chronic diseases (Archbold et al., 1990, 1992). The scale has five Likert-type items with possible responses ranging from 1 (not at all prepared) to 4 (very well prepared). Overall scores are computed by averaging responses to the five items. Scores range from 1.00 to 4.00; the lowest score correlating with least preparedness. Archbold et al. (1992) reported internal reliability (Cronbach’s alpha) of 0.72 at 6 weeks and 0.71 at the 9-month interview.

Quality of Family Relationships

The caregiver’s perception of the quality of the relationship with the care receiver is a key predictor of the presence or absence of strain from caregiving (Archbold et al., 1990). The quality of the relationship can be assessed using the Mutuality scale (Messecar, Parker-Walsch, & Lindauer, 2011) developed by Archbold et al. (1990, 1992). Mutuality is defined as the caregiver’s perceived quality of the relationship with the care receiver. Questions include: How close do you feel to him or her? and How much does he or she express feelings of appreciation for you and the things you do? An overall score can be obtained by calculating the mean across all items—or the questions can be used in an open-ended interview format in which the clinician then probes for more information and history about the relationship. This scale can also be completed via self-administration and then reviewed by the clinician with the caregiver (interview the caregiver apart from the care receiver). For this scale, there is no item that asks about the relationship overall; instead, the items explore several key features of the relationship such as conflict, shared positive past memories, felt positive regard, and positive reciprocity between the caregiver and the care receiver. The questions open the door for the clinician to probe in a gentle way the quality of the relationship. Caregivers rate how they feel about the care recipient with possible responses ranging from 0 (not at all) to 4 (a great deal). The caregiver’s mutuality score is computed by taking the average of the scores on the 15 items. Internal reliability and consistency (Cronbach’s alpha) of the scale was 0.91 at both 6 weeks and 9 months from discharge from the hospital (Archbold et al., 1990).

Indicators of Problems With Quality of Care

In Cooper, Selwood, and Livingston’s (2008) systematic review of the prevalence of elder abuse and neglect, they concluded that one in four vulnerable elders are at risk of abuse and only a small percentage of these cases are detected. Indicators of problems with the quality of care can include the following: evidence of an unhealthy environment, inappropriate management of finances, and demonstration of a lack of respect for older adult. The nurse’s observations can be guided by the Elder Mistreatment Assessment (Fulmer, 2002), which helps the nurse identify elder abuse and neglect issues (see Elder Mistreatment Assessment instrument at consultgerirn.org/resources). This assessment instrument comprised seven sections that reviews signs, symptoms, and subjective complaints of elder abuse, neglect, exploitation, and abandonment (Fulmer, Paveza, Abraham, & Fairchild, 2000; Fulmer, Street, & Carr, 1984; Fulmer & Wetle, 1986). There is no “score,” but the older adult should be referred to social services if there is evidence of mistreatment, a complaint by the older adult, or if there is high risk or probable abuse, neglect, exploitation, or abandonment of the older adult. Please also refer to Chapter 13, “Mistreatment Detection.”

Caregiver’s Physical and Mental Health Status

The caregiver’s perception of his or her own health (Pinquart & Sörensen, 2006a, 2007) is one of the most reliable indicators of a physical health problem. Depression or other emotional distress (e.g., anxiety) can be assessed using the Center for Epidemiological Studies—Depression Scale Revised (CESD-R; see cesd-r.com/about-cesdr/; Eaton, Muntaner, Smith, Tien, & Ybarra, 2004; Pinquart & Sörensen, 2006a, 2007; Sörensen et al., 2002). The CESD-R was initially designed as a screen for the community dwelling at risk for developing major depressive symptomatology. It has been used widely in intervention studies with family caregivers, where it has been self-administered. In 2004, the tool was revised; however, the revised scale has been scored so that the same range of values still applies. The CESD-R website contains all the information needed to use the tool, which is in the public domain. For each of the 20 items, participants rate frequency of occurrence during the past week on a 4-point scale from 0 (not at all or less than 1 day) to 3 (nearly every day for 2 weeks). In order to have the same range as the original, the values for the top two responses (5–7 days and nearly every day) give the same value of 3. Scores range from 0 to 60, with a higher score indicating the presence of a greater number and frequency of depressive symptoms. A score of 16 or higher has been identified as discriminatory between groups with clinically relevant and nonrelevant depressive symptoms (Fulmer et al., 2000; Radloff, 1977).

Burden or strain can be assessed using the modified Caregiver Strain Index (CSI; see consultgerirn.org/resources, Family Caregiving; Sullivan, 2002). Preexisting burden or strain places caregivers at greater risk for poor outcomes, such as depression and poor health, and may prevent them from benefiting from interventions (Perkins et al., 2013; Schulz & Beach, 1999; Sullivan, 2002; Vitaliano et al., 2003). The modified CSI is a tool that can be used to quickly identify families with potential caregiving concerns. It is a 13-question tool that measures strain related to care provision. There is at least one item for each of the following major domains: financial, physical, psychological, and social and personal. Positive responses to seven or more items on the index indicate a greater level of strain. Internal consistency reliability is high (Cronbach’s alpha = 0.86) and construct validity is supported by correlations with the physical and emotional health of the caregiver and with subjective views of the caregiving situation. A positive screen (seven or more items positive) on the CSI indicates a need for more in-depth assessment to facilitate appropriate intervention.

Rewards of Caregiving

Although early family caregiving research focused almost exclusively on negative outcomes of caregiving, clearly, there are many positive aspects of providing care. Spouses can be drawn closer together by caregiving, which can be an expression of love. Caregivers caring for a parent with Parkinson’s or Alzheimer’s who had positive experiences in caregiving reported fewer feelings of being overwhelmed or distressed by their situations (Habermann, Hines, & Davis, 2013) Child caregivers can feel a sense of accomplishment from helping their adult parents. Caregivers should be encouraged to explore and list their perceived benefits of caregiving (Archbold et al., 1995). These can include the satisfaction of helping a family member, developing new skills and competencies, and/or improved family relationships.

Self-Care Activities for the Caregiver

Self-care activities can include things like setting aside time to exercise, having time for oneself, and obtaining respite. Even if the caregiver does not use this strategy, ask him or her think about strategies that would work for him or her. Caregivers need to be reminded that self-care is not a luxury; it is a necessity. At a minimum, caregivers need to learn how to put themselves first, manage stress, socialize, and get help.

INTERVENTIONS AND CARE STATEGIES

Definitions

Psychoeducational Interventions

Psychoeducational interventions involve a structured program geared toward providing information about the care receiver’s disease process and about resources and services, and training caregivers to respond effectively to disease-related problems, such as memory and behavior problems in patients with dementia or depression and anger in patients with cancer. Use of lectures, group discussions, and written materials is always led by a trained leader. Support may be part of a psychoeducational group, but it is secondary to the educational content. Use of technology such as phones, Internet, video contact, and interactive voice recognition to support caregivers as they take on new caregiving responsibilities is included in this category.

Supportive Interventions

This category subsumes both professionally led and peer-led unstructured support groups focused on building rapport among participants and creating a space in which to discuss problems, successes, and feelings regarding caregiving.

Respite or Adult Day Care

Respite care is given either in-home or as site-specific supervision, assistance with ADL, or skilled nursing care designed to give the caregiver time off.

Psychotherapy

This type of intervention involves a therapeutic relationship between the caregiver and a trained professional. Most psychotherapeutic interventions with caregivers follow a cognitive behavioral approach.

Interventions to Improve Care Receiver Competence

These interventions include memory clinics for patients with dementia and activity therapy programs designed to improve affect and everyday competence.

Multicomponent Interventions

Interventions in this group included various combinations of educational interventions, support, psychotherapy, and respite in Sörensen et al.’s (2002) and Pinquart and Sörensen’s (2006a) meta-analyses. Individual studies carried out after the 2002 meta-analysis include nursing management and interprofessional care interventions and REACH II.

Overview

Past reviews of caregiver interventions, such as support groups, individual counseling, and education confirm that there is no single, easily implemented, and consistently effective method for eliminating the stresses and/or strain of being a caregiver (Knight, Lutzky, & Macofsky-Urban, 1993; Toseland & Rossiter, 1989). In 2002, SÖrensen and colleagues performed a meta-analysis on the effects of a second generation of 78 caregiver intervention studies. The most consistent significant improvements in all outcome domains (burden, depression, well-being, ability and knowledge, and care receiver symptoms) assessed in the meta-analysis resulted from psychotherapy and caregiver psychoeducational interventions aimed at improving caregiver knowledge and abilities or skill building. They followed this up with a meta-analysis of 127 studies with 5,930 participants to examine what works in caregiving interventions (Pinquart & Sörensen, 2006b) and found significant effects for psychoeducational, supportive and counseling, and multicomponent interventions. Another systematic review of respite interventions demonstrated only small effects on caregivers with clear benefits for only certain subgroups (Mason et al., 2007). Multicomponent interventions, which combined features of psychotherapy and knowledge or skill building, had the largest effect on burden and, in addition, were effective in improving well-being, ability, and knowledge. The effects of different types of interventions on selected indicators of unhealthy caregiver transitions from the meta-analyses and studies completed since 2002 are presented in Table 11.1.

Other studies of psychotherapy and psychoeducational interventions fit the same pattern of results (Akkerman & Ostwald, 2004; Berry, Grant, Elliott, Edwards, & Fine, 2012; Bishop et al., 2014; Burns et al., 2005; Coon, Thompson, Steffen, Sorocco, & Gallagher-Thompson, 2003; Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010; Harris, Durkin, Allen, DeCoster, & Burgio, 2011; Hébert et al., 2003; Hepburn et al., 2005; Judge, Yarry, Looman, & Bass, 2013; Lavretsky et al., 2013; Martire et al., 2010; Mittelman, Roth, Clay, & Haley, 2007; Mittelman, Roth, Coon, & Haley, 2004; Mittelman, Roth, Haley, & Zarit, 2004; Rodriguez-Sanchez et al., 2013; Zarit et al., 2011). All of these interventions address key negative aspects of caregiving: being overwhelmed with the physical demands of care, feeling isolated, not having time for oneself, having difficulties with the care recipient’s behavior, and dealing with one’s own negative responses.

There are several characteristics across interventions that seem to have a moderating effect on caregiving outcomes. Focusing the caregiver training exclusively on the care receiver to alter his or her symptoms has almost no effect on the caregiver (Agren, Evangelista, Hjelm, & Stromberg, 2012; Flynn Longmire et al., 2014; Pinquart & Sörensen, 2006b; Sörensen et al., 2002; Sherwood et al., 2012). Agren et al.’s (2012) psychoeducation intervention had no impact on caregiver’s perceived control, health, depression, or burden. In the SÖrensen (2002) meta-analysis, group interventions were less effective in improving caregiver burden than individual and mixed interventions, which is consistent with Knight et al. (1993) but inconsistent with the meta-analysis performed by Yin, Zhou, and Bashford (2002). Length of an intervention appears to be important in alleviating caregiver depression and care receiver symptoms. Caregivers do less well with shorter interventions regarding depression because they lose the supportive aspects of prolonged contact with a group or a professional before they can benefit.

Characteristics of the caregiver are also associated with intervention effectiveness. Some caregivers benefit less from interventions than others do. For example, Sörensen et al. (2002) found that spouse caregivers benefited less from interventions than did adult children. Table 11.2 presents caregiver characteristics associated with various indicators of unhealthy caregiver transitions.

Interventions With Little Effect

Some intervention approaches have been consistently disappointing, showing either no significant effects or limited responses. In Lee and Cameron’s (2004) update of the Cochrane Database Review, reanalysis of three trials of respite care found no significant effects of respite on any outcome variable. Interventions focused on medication management of the care receiver’s dementing condition (Lingler, Martire, & Schulz, 2005) and/or targeted to managing problematic behavior (Livingston, Johnston, Katona, Paton, & Lyketsos, 2005) were similarly disappointing. A meta-analysis of habit training for the management of urinary incontinence interventions showed that not only were there no significant differences in incontinence between the intervention and control groups, but that caregivers found the intervention labor intensive (Ostaszkiewicz, Johnston, & Roe, 2004).

TABLE 11.1

Effects of Different Types of Interventions on Indicators of Unhealthy Caregiver Transitions

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