Skip to main content
NCBI home page
NIHPA Author Manuscripts logoLink to NIHPA Author Manuscripts
. Author manuscript; available in PMC: 2015 Nov 1.
Published in final edited form as: Nurs Forum. 2014 May 1;51(1):21–31. doi: 10.1111/nuf.12090

Concept Analysis: Alzheimer’s Caregiver Stress

Sarah Llanque 1, Lynette Savage 2, Neal Rosenburg 3, BA Honor’s 4, Michael Caserta 5
PMCID: PMC4391978  NIHMSID: NIHMS676300  PMID: 24787468

Abstract

AIM

The aim of this article was to analyze the concept of caregiver stress in the context of caring for a person with Alzheimer’s disease and related dementias.

BACKGROUND

Currently, there are more than 15 million unpaid care-givers for persons suffering from Alzheimer’s disease and related dementias. This unpaid care can be stressful for caregivers due to the chronic nature of the disease process, as well as other factors.

METHOD

The paper incorporates the modified method of Wilson’s concept analysis procedure to analyze the concept of caregiver stress.

DATA SOURCES

A review of the literature was undertaken using the Cumulative Index to Nursing and Allied Health Literature, Google Scholar, and PubMed.

RESULTS

A theoretical definition of caregiver stress is provided, and the defining attributes, related concepts, antecedents, and consequences of caregiver stress are proposed, and case studies are presented.

CONCLUSIONS

The analysis demonstrates that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in emotional and physical stress on the caregiver. Implications for future nursing research and practice conclude the paper.

Keywords: Alzheimer’s disease, caregiver burden, caregiver stress, concept analysis, dementia

By 2030, the number of U.S. adults aged 65 or older will more than double to nearly 71 million (Administration on Aging, 2012). As the number of older adults rises, so too will the number of new and existing cases of Alzheimer’s disease (AD), as age is one risk factor for developing AD (Alzheimer’s Association, 2013). Currently, 5.2 million Americans are diagnosed with AD; approximately half of persons 85 and older have some form of the disease (Alzheimer’s Association, 2013). This has far-reaching implications because the disease has long-term effects to the families and the society as a whole. The financial impact of caregiving for a person with AD and related dementias (ADRD) is approximately $216 billion dollars per year (Alzheimer’s Association, 2013). It has been found that caregivers of persons with dementia are at greater risk for hospitalization, which has implications on hospitals seeking to decrease readmission rates (Alzheimer’s Association, 2013; Schubert et al., 2008). Employers of businesses may see an increase in Family Medical Leave of Absence or an increased use of sick time as a result of their employees needing to care for the person with ADRD. These societal implications are inextricably linked to the person with ADRD and the 15.4 million caregivers who provide unpaid care to persons with ADRD (Alzheimer’s Association, 2013). Of these caregivers, 60–70% of ADRD caregiving takes place in the home and community-based setting (Alzheimer’s Association, 2013).

The concept of caregiver stress is significant to nursing, nursing research, and clinical practice. Nurses are at the forefront of implementing interventions to maintain the mental and physical health of family caregivers and persons with ADRD. Due to the chronic stress of caring for a person with ADRD, caregivers are at high risk for burnout and chronic health problems (Kiecolt-Glaser, McGuire, Robles, & Glaser, 2002). Developing a clear understanding regarding the concept of caregiver stress can help nurses utilize theoretical frameworks as a basis for developing new interventions to help caregivers cope with the stress they face in caring for a person with ADRD. This paper seeks to clarify the concept of caregiver stress of the ADRD caregiver through analyzing and discussing Wilson’s modified method of concept analysis, reviewing the literature, defining working definitions and attributes of the concept, determining antecedents and consequences, describing cases, and evaluating empirical referents of the concept of Alzheimer’s caregiver stress.

Method of Analysis

A modified method of Wilson’s (1963) concept analysis procedure is used to analyze the concept of caregiver stress. According to Walker and Avant (2005), “concept analysis can be useful in refining ambiguous concepts in a theory” (p. 64); the concept can also be helpful in clarifying overused or vague concepts that are prevalent in nursing. This is the case for the concept of caregiver stress. Illuminating this concept will provide clarity to the definition of the concept so that when dialogue is produced about the concept, everyone will, in turn, be discussing the same thing. The steps for this analysis are as follows (Walker & Avant, 2005).

  • Select a concept

  • Determine the aims or purposes of analysis

  • Identify all the uses of the concept that you can discover

  • Determine the defining attributes

  • Identify a model case

  • Identify borderline, related, and contrary cases

  • Identify antecedents and consequences

  • Define empirical referents

The literature reviewed was obtained utilizing Boolean search techniques, with various educational databases, including PubMed, Google Scholar, and Cumulative Index to Nursing and Allied Health Literature, to uncover peer-reviewed journals related to the concept of caregiver stress. A search via Google Scholar yielded more non-nursing articles than nursing articles. Nursing articles included qualitative, quantitative, and mix-method studies from 1984 to the present, and provided useful information in painting a clear picture of the concept. The keywords Alzheimer’s disease, caregiver stress, and nursing were used in searching for articles. By combining the keywords Alzheimer’s disease, caregiver stress, and nursing, the search was narrowed sufficiently to specific articles that addressed the AD caregiver population in the context of nursing and non-nursing. After reading through the abstracts, only articles that focused on the three keywords were selected.

Aim

The aim of this paper is to carefully define the attributes of caregiver stress for theory development and research. This will provide a clearer understanding of the concept and encourage communication among nursing professions about the phenomenon of caregiver stress, when it is discussed.

Review of the Literature

Historical Evolution of the Concept

The historical evolution of the concept of caregiver stress begins with Walter Cannon. Cannon formalized the concept of stress at the beginning of the twentieth century (Cannon, 1932). Cannon (1932) described stress as an acute flight or fight response, or a heightened arousal state that prepares an organism to deal with threats. Following Cannon, Hans Selye popularized the concept of stress (Neylan, 1998). Selye hypothesized the general adaptation syndrome, which included three stages of a person’s response to stress (Videbeck, 2010). In the latter part of the twentieth century, Lazarus contributed to the understanding of stress by emphasizing its psychological dimension (Lazarus & Folkman, 1984). Lazarus understood the role of perception and cognitive appraisal in the stress response. He argued that in order for an event to be stressful, it must be appraised as threatening (Lazarus & Folkman, 1984). In 1983, the term perceived stress was found in the literature, and defined by Cohen, Kamarck, and Mermelstein (1983) as the point to which life’s situations are appraised as stressful.

The concept of the family caregiver was first coined in the 1980s to describe persons who were caring for elderly family members in their homes (Farran, 2002). Formal caregivers are volunteers or paid employees connected to the social service or healthcare systems. The term informal caregiver refers to family members and friends, who are the primary sources of care. Caregivers assist with the daily care needs of the care receiver, such as activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Researchers have addressed the term caregiver stress in their research but have not clearly analyzed the concept (Bullock, 2004; Chwalisz, 1996; Hunt, 2003; Kasuya, Polgar-Bailey, & Takeuchi, 2000; Pearlin, Mullan, Semple, & Skaff, 1990).

Researchers Pearlin et al. (1990) and Hunt (2003) have extensively analyzed the concept of caregiver stress. Pearlin and his colleagues (1990) imply that caregiver stress is the unequal exchange of assistance among people who stand in close relationship to one another, which results in perceived tension and fatigue on the caregiver. Hunt leans toward agreeing with this definition as well. The caregiver is currently referred to as a person who takes care of other adults, most often parents or spouses, who are ill or have disabilities, according to the U.S. Department of Health and Human Services, Office on Women’s Health (2006).

In order to gain a better understanding of the terms caregiver and stress, the authors referred to the dictionary to define the terms separately. The Merriam-Webster dictionary (2013) defines caregiver as an individual who provides direct care to children, elderly people, or the chronically ill. Stress is defined as “a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation” (Merriam-Webster, 2013, para. 1). When one combines the two terms together, the definitions of caregiver stress come to mean a person who provides direct care, who experiences bodily or mental tension resulting from factors that tend to alter an existing equilibrium. The National Women’s Health Information Center (NWHIC), on the other hand, defines caregiver stress as “the emotional strain of caregiving” (NWHIC, 2006, p. 1). This definition seems to be general for healthcare professionals to use.

Current Common Usages of the Concept

The concept of caregiver stress has been commonly used in the literature to describe the burden or strain that caregivers face when caring for a person with a chronic illness, such as ADRD. Past literature stated that caregiver burden may be a dimension of caregiver well-being, and that “burden and well-being represent opposite sides of the same coin” (Stull, Kosloski, & Kercher, 1994, p. 88). After reviewing the literature, we have noted that the term caregiver burden is often used in academic or research contexts but still refers to the stress that caregivers experience in taking care of chronically ill family members, particularly those with ADRD. “Stress” refers more often to a global concept, especially in the clinical nursing arena, although at some level the two usages have been often interchangeable. For purposes of this paper, the authors will use the term caregiver stress, although its similarity with burden is acknowledged given the work of others who have studied the concept.

Much of the literature uses this concept in the dimension of psychosocial stress and/or physical stress of the caregiver (Kiecolt-Glaser, Glaser, Gravenstein, Malarkey, & Sheridan, 1996; Vedhara, Shanks, Anderson, & Lightman, 2000; von Känel et al., 2006). Caregiver stress has also been used to describe the objective and subjective burdens that caregivers face (Ford, Goode, Barrett, Harrell, & Haley, 1997; Gallant & Connell, 1998; Haley, LaMonde, Han, Burton, & Schonwetter, 2003; Mittleman, Roth, Clay, & Haley, 2007; Pearlin et al., 1990). Objective burdens are objective indicators of stressors, such as ADL dependencies and care receivers’ cognitive impairment. Subjective burdens are stressors that cannot be measured objectively, but rather subjectively, such as caregivers’ emotional reactions and appraisals of care demands (Pearlin et al., 1990). Kang (2006) used the term emotional strain in the context of caregiver stress in order to study the predictors of emotion strain between spouse and adult caregivers.

Utilization of the Concept in Nursing Research

After an extensive review of the literature, research dating back to 1984 was found and used the concept of caregiver stress in the context of nursing (Baines, 1984). The author identified stressors experienced by older family caregivers of the physically disabled older adults and how they coped with these problems. The results from the study revealed that the greatest stressor for the caregivers was not being able to get out of the house alone. In congruence with this finding, obtaining assistance with providing activities for recreation and diversion was needed (Baines, 1984).

Similar to Baines (1984), Kelley (1993) and Schumacher, Dodd, and Paul (1993) conducted research focusing on caregiver stress using non-ADRD caregivers. Kelley conducted a descriptive study to look at caregiver stress in grandparents raising grandchildren. Social isolation and restriction of role were predictors of increased psychological distress. Schumacher et al. analyzed strain and depression among family caregivers of adults receiving chemotherapy. Both social support and coping served as mediators to stress. Coping served as a mediator to the relationship between strain and depression, while social support mediated the relationship between functional status and depression in caregivers. Antecedents such as the caregiver’s age and gender, the care receiver’s age and gender, the care receiver’s functional status, the presence of recurrent disease, perceived efficacy of coping strategies, and perceived adequacy of social support explained the variance in strain and depression in caregivers (Schumacher et al., 1993).

Like Schumacher et al. (1993), Winslow (1997) conducted a descriptive study to examine whether formal support and coping would mediate the effects of primary stressor and caregiver characteristics on three stress outcomes: yielding role, anxiety, and physical health. The results suggested that the decreased physical health of the caregiver was the result of caregiver overload. “Caregiver anxiety was explained by lower levels of care receiver dependency” on the caregiver and an increased level of overload (Winslow, 1997, p. 27). Higher levels of care receiver problem behaviors, as well as more use of formal supports, explained yielding of the caregiver role (Winslow, 1997).

Additional nurse researchers explored the concept of caregiver stress. Hunt (2003) performed a concept analysis “to clarify and delineate conceptualizations of the effects of caregiving for nursing research and practice with family caregivers” (p. 27). Findings revealed that caregiver stress carries a negative connotation. Tsai (2003) presents a midrange theory of caregiver stress based on Roy’s adaptation model (Roy, 2011) using the context of caregiving for chronically ill people. Tsai discusses Roy’s model and how it applies to caregiver stress. Although Hunt and Tsai address the concept of caregiver stress, neither explicitly states the definition of this concept.

Among the nurse scientists who have used the concept of caregiver stress in research, McCarty (1996) is one of the few researchers to utilize a grounded theory approach in her study. She examined the process of daughter-caregiver stress as associated with the care of a parent with AD. Findings included substantive theory and hypotheses, which provide an understanding “of the interrelationship between caregiver stress and the contextual aspects of social support, coping, and the nature of the prior filial relationship” (McCarty, 1996, p. 792).

The studies of Beeson (2003) and Wright, Hickey, Buckwalter, Hendrix, and Kelechi (1999) shed light on the outcome of depression of AD caregivers. Beeson’s study observed outcomes of depression due to caregiver stress. The antecedent, loneliness, was a factor in the consequence of depression in AD caregivers. Spousal caregivers reported higher levels of loneliness and depression than nonspousal caregivers. The female spousal caregivers reported a greater loss of self and higher levels of loneliness and depression than males. Wright et al. analyzed the outcomes of caregiver stress by looking at the emotional and physical health of spousal caregivers of persons with AD and stroke. Results revealed that depression increased for AD caregivers. This could be due to AD being a progressive disease (National Institute on Aging and National Institutes of Health, 2008). On the contrary, physical health in caregivers remained stable over time. This finding is not consistent with that of von Känel et al.’s (2006) and Kiecolt-Glasers et al.’s (1996) findings that physical health declines due to caregiver stress.

Utilization of the Concept in Instruments and Other Data Collections

In many non-nursing studies related to stress of the AD caregiver, the concept of caregiver stress is mostly measured utilizing the Zarit burden scale (1990), which addresses objective and subjective burden (Gaugler, Roth, Haley, & Mittelman, 2008; Knight, Fox, & Chou, 2000). Pearlin et al.’s (1990) scales, provided in the appendices of the article on the stress process model of caregiving, were also used in non-nursing and nursing articles measuring caregiver stress (Beeson, 2003; Gaugler, Anderson, Zarit, & Pearlin, 2004; Kang, 2006; Winslow, 1997). Nursing studies on caregiver stress utilized a variety of scales, including the Caregiver Strain Index (Schumacher et al., 1993), scales developed to measure primary stress of ADLs and IADLs (Winslow, 1997), and the Caregiver Burden Inventory (CBI) (Gallant & Connell, 1998).

Other non-nursing researchers have used various scales to measure stress in the AD caregiver. Ford et al. (1997) used three instruments to measure the subjective stress of caregivers. These include the ADL scale, IADL scale, and the Memory and Behavior Problem Checklist. von Känel et al. (2006) used the Brief Symptom Inventory Global Severity Index to assess the extent to which caregivers felt global psychological distress in order to assess the effects of stress on immune system function. Vedhara et al. (2000) used the Geriatric Social Readjustment Rating Scale, Hassels and Uplifts Scale, and the Burden Interview to measure the frequency and nature of stressors in caregivers. Mitrani et al. (2006) utilized the Screen for Caregiver Burden scale to measure caregiver stress and the role of family functioning on this concept.

Working Definition

The operational or working definition of a concept tells how the concept is linked to concrete situations (McEwen & Willis, 2007). It describes a set of procedures that can lead to obtaining a value to the concept. After synthesizing and analyzing findings from the literature regarding caregiver stress, these authors have found both a subjective and objective meaning to caregiver stress. Subjective stress is the emotional and cognitive reaction of the caregiver to his/her caregiving situation (Oyebode, 2003; Pearlin et al., 1990). Phrases and words that depict the characteristics/attributes of the concept include unequal or imbalance in the distribution of responsibilities, fatigue/tension, and perception of the situation by the caregiver (Pearlin et al., 1990; Zarit & Zarit, 1990). Objective stress is a measure of tasks that must be undertaken by the caregiver because of the needs of the care receiver (Pearlin et al., 1990; Zarit & Zarit, 1990). This includes tasks associated with ADL and IADL dependencies, as well as the cognitive status of the care receiver and neuropsychiatric symptoms that result in challenging behaviors (Pearlin et al., 1990).

Defining Attributes of Caregiver Stress

The defining attribute associated with caregiver stress is an unequal distribution of responsibilities on the caregiver as a result of caring for someone with a prolonged impairment (Pearlin et al., 1990). Due to a decrease in the level of cognition of the care receiver, problematic behaviors of the care receiver, lack of support for the caregiver, and the daily needs of the care receiver, over time the caregiver can experience stress. Another attribute is that the event that the caregiver experiences is perceived or appraised as threatening, which can become worse due to the progressive nature of AD. A third attribute is the constant fatigue experienced by the caregiver. Poor emotional and physical health is experienced by the caregiver as a result of continually caring for someone with a chronic illness (Kiecolt-Glaser et al., 1996; Kuipers, 2010). Caregivers can experience fatigue and a decreased function of their immune system, which can have a toll on physical and emotional health of the caregiver. Additionally, caregivers may experience mental health issues, such as anxiety, depression, delusional thinking, and irascibility (Bedard, Pedlar, Martin, Malott, & Stones, 2000; Connell, Janevic, & Gallant, 2001). Caregivers may be exposed to socially embarrassing problems associated with caregiving, low motivation, and dropping out of school or resigning from work, which can further exacerbate depressive symptomology (Kuipers, 2010; Pearlin et al., 1990). The caregiver may yield his/her role as a caregiver to cope with the stress of caregiving.

Antecedents of Caregiver Stress

After reviewing the literature, the incidents and events that occur prior to caregiver stress include the following: (a) care receiver with a chronic illness (Kiecolt-Glaser et al., 1996; Pearlin et al., 1990); (b) lack of informal and formal support (Femia, Zarit, Stephens, & Greene, 2007; Gaugler et al., 2003; Kang, 2006; Mittleman et al., 2007; Schumacher et al., 1993; Tsai, 2003); (c) constriction of the caregiver’s social life (Beeson, 2003; Pearlin et al., 1990); (d) problematic behaviors expressed by the care receiver (Kang, 2006; Pearlin et al., 1990; Winslow, 1997); (e) duration of caregiving (Kang, 2006); (f) cognitive status of the care receiver (Pearlin et al., 1990); and (g) functional status of the care receiver (Pearlin et al., 1990; Schumacher et al., 1993; Winslow, 1997). Antecedents of caregiver stress are listed in Table 1.

Table 1.

Antecedents of Caregiver Stress

Antecedents

  • Care receiver with a chronic illness

  • Lack of informal and formal support

  • Constriction of the caregiver’s social life

  • Problematic behaviors expressed by the care receiver

  • Cognitive status of the care receiver

  • Functional status of the care receiver

Open in a new tab

Consequences of Caregiver Stress

As opposed to antecedents, consequences are events or incidents that occur as a result of the occurrence of caregiver stress (Walker & Avant, 2005). The following consequences were discovered after reviewing the literature: (a) depression (Beeson, 2003; Gallant & Connell, 1998; Schumacher et al., 1993); (b) anxiety (Winslow, 1997); (c) irascibility (Pearlin et al., 1990); (d) cognitive disturbance (Pearlin et al., 1990); (e) poor health status (Kiecolt-Glaser et al., 1996; von Känel et al., 2006); (f) yielding role (Pearlin et al., 1990); and (g) role entrapment due to guilt and shame of caregiving (Gonyea, Paris, & de Saxe Zerden, 2008; Goodman, Zarit, & Steiner, 1997). See Table 2 for consequences of caregiver stress.

Table 2.

Consequences of Caregiver Stress

Consequences

  • Depression

  • Anxiety

  • Irascibility

  • Cognitive disturbance

  • Poor health status

  • Yielding role

  • Role entrapment

Open in a new tab

Cases

Model Case

A spousal caregiver has been taking care of her husband, the care receiver, who is diagnosed with AD. The couple is living in a rural setting many miles from a large metropolitan city. The care receiver continuously wanders, has a decreased level of cognition, and shows signs of sun downing as evening approaches. The caregiver has neither the time nor resources to meet with her friends or attend support group meetings, as her finances are diminishing because she is unable to work. Additionally, the caregiver has been experiencing insomnia, feels fatigued, and is physically tired. She continually worries about her husband wandering off and getting hurt. One day her friend, who has not heard or seen her in over a month, calls to check on her. The caregiver finds comfort in having someone to talk to about her situation. At the end of the conversation, the caregiver says she feels “stressed out.”

Borderline Case

A caregiver provides care for her mother, who has recently suffered from a stroke and is hemiplegic. The caregiver wakes up very early and assists her mother with personal care, prepares lunch and a snack for her mother, then goes to work. The caregiver returns home immediately after work to prepare dinner because she knows her mother is hungry toward the end of the day. Some days, the caregiver feels physically tired from juggling work and caregiving responsibilities. In spite of this, she does not feel fatigued or muscle tension. The caregiver is grateful that her mother is still alive and survived the stroke.

Contrary Case

A granddaughter, who is a caregiver, takes her grandmother, who has vascular dementia, to a plush resort. They spend a week relaxing. They receive full body massages in the spa, sunbath, partakes in yoga, and converse about their childhoods in the Jacuzzi. All tensions they felt are gone. Additionally, a sitter is hired at the end of the day to provide supervision and help the care receiver prepare for sleep. The granddaughter goes out to dinner to socialize with her friends and attends a party. At the end of the day, both the caregiver and care receiver feel rejuvenated and relaxed. The caregiver says “good night” to the care receiver and mentions that she wishes her life could stay like this forever.

Related Case

A young caregiver has taken the responsibility of caring for her mother, who needs supervision with toileting, bathing, and ambulation. The care receiver or the mother of the caregiver has been diagnosed with early-onset AD. She has poor short-term memory. The caregiver has not been able to meet with her friends since she started providing care. However, she is able to converse with her friends via phone a couple of times per week. The caregiver is planning to meet with her friends in a few days, since her brother has offered to provide supervision for the care receiver for a few hours. Although the caregiver is faced with the responsibilities of providing care for her grandmother, she sees this as an opportunity to get to know more about her grandmother. The caregiver feels some personal gain, meaning, and enrichment in her life since becoming a caregiver.

Empirical Referents

Empirical referents, as defined by Walker and Avant (2005), are classes or categories of actual phenomena that by their existence or presence demonstrate the occurrence of the concept. They are useful in instrument development and contribute to the content and construct validity of any new instrument (Walker & Avant, 2005). There are several published instruments that measure stress in caregivers of persons with dementia (Antonucci, Sherman, & Vandewater, 1997; Deeken, Taylor, Mangan, Yabroff, & Ingham, 2003; Vitaliano, Young, & Russo, 1991). Several key empirical referents were noted from these instruments selected for discussion (Caserta, Lund, & Wright, 1996; Zarit & Zarit, 1990).

The CBI was first developed by Novak and Guest (1989), and then construct-validated by Caserta et al. (1996). It addresses and evaluates the multidimensionality of caregiver stress. This 24-item scale addresses five domains of caregiving, namely time dependence, development, physical, social, and emotional. The Cronbach’s alpha coefficients for each of the subscales ranged from 0.73 to 0.86, which indicates acceptable reliability (Caserta et al., 1996; Pett, Lackey, & Sullivan, 2003). Caregivers rate each item on a 5-point Likert scale, from 0 (never experiencing burden or stress) to 4 (nearly always experiencing stress). Time dependence burden stems from time restrictions and demands, while developmental burden represents the disruption that caregiving presents to life. Physical burden characterizes the demands placed upon caregivers’ health, and social burden represents caregivers’ interrelation conflict. Caregivers’ negative feelings stemming from their situation, potentially including those toward the care receiver, denote emotional burden (Caserta et al., 1996).

Another instrument, the Zarit Burden Interview, was designed to evaluate the challenges that family caregivers of elderly and persons with disabilities faced on a daily basis (Vedhara et al., 2000). The Cronbach’s alpha for the scale’s internal consistency is between 0.88 and 0.91. The test–retest reliability is 0.71 (Vedhara et al., 2000). It contains diverse item content, and takes into consideration both objective and subjective burdens experienced by the caregiver (Zarit & Zarit, 1990). Empirical referents associated with caregiver stress include depression, anxiety, irascibility, disturbances in cognition, decline in physical health (i.e., immunosuppression, hypertension, and hyperlipidemia), and yielding of caregiving role (Kiecolt-Glaser et al., 2002; Pearlin et al., 1990).

Discussion

One may assume that caregiver stress is associated with fatigue experienced by caregivers of persons with ADRD due to the demands of caregiving. Still, this is an inaccurate assumption. A caregiver could be in what seems to be a stressful situation. However, if he/she does not perceive his/her situation as stressful, then it is not stressful. This may explain why some people experience stress in caregiving, while others do not, in similar caregiving situations. Conversely, this may be why some caregivers may not have sufficient insight to make the connection. After reviewing the literature, the authors found that most of the studies describe and define caregiver stress both subjectively and objectively. This is conflicting because objective forms of caregiver stress seem to be an antecedent to perceiving stress. For example, a caregiver can be anyone who cares for someone. Caregiver stress comes about when there is an unequal exchange of reciprocities of caregiving. This is perceived by the caregiver, and is thus subjective, he/she feels fatigued or some unrelenting tension, which can result in various outcomes. However, before feeling stressed, something must occur, such as the care receiver continually wandering or showing signs of problematic behavior.

Although the NWHIC, which is part of the U.S. Department of Health and Human Services, has clearly defined caregiver stress, there is still confusion on its definition (NWHIC, 2006). Current common usages of the concept show that it could be used in the physical or psychosocial sense of the term. However, this would contradict Pearlin et al.’s (1990) model of caregiver stress, which explains that physical health is an outcome of stress, not stress itself. Based on the findings from studies, stress is not measured or defined by one’s physical health status, but that one’s physical health status is an outcome of the stress process. Thus, physical health, such as IL-6 plasma levels, is an outcome of what stress does to a person (von Känel et al., 2006). Caregiver stress is therefore measured by subjective burden scales because it is perceived by the caregiver.

Furthermore, there are relationships and deviations from the use of the concept of caregiver stress in other disciplines. For example, sociology takes into account that stress must be perceived (Pearlin et al., 1990). An advantage of looking at the concept of caregiver stress in this area is that researchers take into account the background of the caregiver, such as family and network composition, socioeconomic status of the caregiver, and other situational factors (Pearlin et al., 1990). In the realm of medicine and biology, the concept of caregiver stress leans toward the physiological state of experiencing stress, such as having decreased function of one’s immune system or high levels of corticosteroids in the blood (Lazarus & Folkman, 1984). Past studies reviewed in this concept analysis lean toward using sociology and medicine’s attributes to the meaning of caregiver stress in research.

One issue that must be resolved prior to using the concept in our research is clarifying the terms of caregiver burden and caregiver stress. We found that the term caregiver burden has similarities to caregiver stress. Many authors use these two terms interchangeably. This can cause much perplexity when researchers discuss these terms and attempt to measure them. The literature seems to present both terms as synonyms of each other.

Caring for a person with ADRD presents unique challenges for caregivers (Chenoweth & Spencer, 1986). Caregivers must cope with the consequences of seeing the physical health of a person with ADRD deteriorate over time (Alzheimer’s Association, 2013). One primary stressor for caregivers is the change in the cognitive status of the care receiver (Pearlin et al., 1990). Problematic behaviors of the person with ADRD can then lead to constant “surveillance” by the caregiver, brought on by the worsening of the care receiver over time (Pearlin et al., 1990, p. 587). The caregiving relationship also changes from that of an “ordinary exchange of assistance” to an “extraordinary and unequally distributed [stress]” between the caregiver and the person with ADRD (Pearlin et al., 1990, p. 583). This results in the role change of the caregiver from being a spouse, child, sibling, or friend to instead becoming the caregiver. This, along with the length of time that a person with ADRD progresses through the disease, has a direct impact on a caregiver’s health, emotional well-being, and socioeconomic status (Alzheimer’s Association, 2013; Costa et al., 2012; Gaugler et al., 2004; Kim & Schulz, 2008). Caregiver stress may be so overwhelming that caregivers may not realize or acknowledge that they are experiencing caregiver stress (Chenoweth & Spencer, 1986; Werner, 2003).

Conclusion

In conclusion, the concept of caregiver stress, as analyzed in this paper, is the unequal exchange of assistance among people who stand in close relationship to one another, which results in perceived tension and fatigue on the caregiver. Caregiver stress is not only experienced by physiological changes in the body, but must be perceived by the caregiver caring for a person with a chronic illness. It is vital that the concept of caregiver stress be clearly defined, so nurses, other healthcare professionals, and the public have a clear and similar understanding of what caregiver stress is, the consequences of what it can do to caregivers, and what can be done to address caregiver stress. Measurements can be utilized by nurses to accurately assess the level of stress that a caregiver experiences as nurses come in frequent contact with family caregivers (Caserta et al., 1996; Zarit & Zarit, 1990).

Clarifying the concept of caregiver stress will not only add strength to the current and future research in nursing research, it is needed for the purpose of affecting healthcare policies in order to increase support for caregivers. Currently, Medicaid, Medicare, and the majority of third-party payers offer little or no support in reimbursement for caregiver support (National Institutes of Health, 2013). Without adequate support, caregivers are prone to develop illnesses due to the constant stress from the demands of caregiving. The financial impact of caregiving for a person with ADRD is estimated to be $216 billion (Alzheimer’s Association, 2013).

Future Implications for Nursing Research

It is vital that nurses understand the concept of caregiver stress and understand its meaning. Illuminating the concept of caregiver stress as it relates to caring for a person with ADRD will allow for further concept development. A concept synthesis is recommended to further gather information about the phenomenon, with the goal of developing interventions tailored to the unique needs of caregivers so that maintenance and promotion of caregivers’ health can occur, as well as decreasing their stress. Nurses work side by side with family caregivers on a daily basis, whether that be in a geriatric psychiatry unit, Alzheimer’s special care unit, a long-term care facility, assisted living community, in critical care, in the hospital, or in the home and community-based setting. Understanding caregivers’ emotional needs is just as important as understanding their physiological health needs. Additionally, knowing how to communicate with these caregivers is just as essential. Friendly attitudes of nurses and nurses’ ability to recognize the emotional needs of caregivers are two qualities in providing client- and family-centered care (Taw, Cadmus, & Zarcadoolas, 2012). By taking care of the caregiver, one is essentially caring for the care receiver as well. A caregiver who maintains his/her health and is able to take care of himself/herself can continue to care for the care receiver. It is imperative that nurses recognize this. Nurses have the power to address caregiver stress, which can positively affect the negative consequences of burnout of the caregiver.

Acknowledgments

This research was supported in part by the NIH/NINR training grant, Interdisciplinary Training in Cancer, Aging and End of Life Care Research, granted to principle investigators Susie Beck, PhD, RN, FAAN, and Ginny Pepper, PhD, RN, FAAN, of the College of Nursing at the University of Utah (1T32NR013456-01A1).

Footnotes

Disclosure: The authors have reported no conflicts of interest.

Contributor Information

Sarah Llanque, NRSA Postdoctoral Fellow, University of Utah, Salt Lake City, UT.

Lynette Savage, Adjunct Professor, Linfield-Good Samaritan School of Nursing, Portland, OR.

Neal Rosenburg, Associate Dean of Nursing and Associate Professor, Linfield College, Portland, OR.

BA Honor’s, Associate Dean of Nursing and Associate Professor, Linfield College, Portland, OR.

Michael Caserta, Professor and the Robert L. & Joyce T. Rice Presidential Endowed Chair in Healthy Aging, University of Utah, Salt Lake City, UT.

References

  1. Administration on Aging. A profile of older Americans: 2011. 2012 Retrieved from http://www.aoa.gov/AoARoot/Aging_Statistics/Profile/2011/4.aspx.
  2. Alzheimer’s Association. Alzheimer’s facts and figures. 2013 Retrieved from http://www.alz.org/alzheimers_disease_facts_and_figures.asp.
  3. Antonucci T, Sherman A, Vandewater E. Measures of social support and caregiver burden. Generations (San Francisco, Calif) 1997;21(1):48–51. [Google Scholar]
  4. Baines E. Caregiver stress in the older adult. Journal of Community Health Nursing. 1984;1(4):257–263. doi: 10.1207/s15327655jchn0104_6. [DOI] [PubMed] [Google Scholar]
  5. Bedard M, Pedlar D, Martin NJ, Malott O, Stones MJ. Burden in caregivers of cognitively impaired older adults livening in the community: Methodological issues and determinants. International Psychogeriatrics. 2000;12:307–332. doi: 10.1017/s1041610200006426. [DOI] [PubMed] [Google Scholar]
  6. Beeson RA. Loneliness and depression in spousal caregivers of those with Alzheimer’s disease versus non-caregiving spouses. Archives of Psychiatric Nursing. 2003;17(3):135–143. doi: 10.1016/s0883-9417(03)00057-8. [DOI] [PubMed] [Google Scholar]
  7. Bullock R. The needs of the caregiver in the long-term treatment of Alzheimer disease. Alzheimer Disease and Associated Disorders. 2004;18(Suppl 1):S17–S23. doi: 10.1097/01.wad.0000127493.65032.9a. [DOI] [PubMed] [Google Scholar]
  8. Cannon WB. Wisdom of the body. New York: W. W. Norton and Company; 1932. [Google Scholar]
  9. Caserta MS, Lund DA, Wright SD. Exploring the Caregiver Burden Inventory (CBI): Further evidence for a multidimensional view of burden. International Journal of Aging & Human Development. 1996;43(1):21–34. doi: 10.2190/2DKF-292P-A53W-W0A8. [DOI] [PubMed] [Google Scholar]
  10. Chenoweth B, Spencer B. Dementia: The experience of family caregivers. Gerontologist. 1986;26(3):267–272. doi: 10.1093/geront/26.3.267. [DOI] [PubMed] [Google Scholar]
  11. Chwalisz K. The perceived stress model of caregiver burden: Evidence from spouses of persons with brain injuries. Rehabilitation Psychology. 1996;41(2):91–113. [Google Scholar]
  12. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. Journal of Health and Social Behavior. 1983;24:385–396. [PubMed] [Google Scholar]
  13. Connell CM, Janevic RR, Gallant MP. The costs of caring: Impact of dementia on family caregivers. Journal of Geriatric Psychiatry and Neurology. 2001;14:179–187. doi: 10.1177/089198870101400403. [DOI] [PubMed] [Google Scholar]
  14. Costa N, Ferlicoq L, Derumeaux-Burel H, Rapp T, Garnault V, Gillette-Guyonnet S, Molinier L. Comparison of informal care time and costs in different age-related dementias: A review. BioMed Research International. 2012;852368:1–15. doi: 10.1155/2013/852368. Retrieved from http://www.hindawi.com/journals/bmri/2013/852368/abs/ [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Deeken J, Taylor K, Mangan P, Yabroff R, Ingham J. Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management. 2003;26(4):922–953. doi: 10.1016/s0885-3924(03)00327-0. [DOI] [PubMed] [Google Scholar]
  16. Farran CJ. Family caregivers: A critical resource in today’s changing health-care climate. Excellence in Clinical Practice. 2002;3(3):1–3. [Google Scholar]
  17. Femia EE, Zarit SH, Stephens MA, Greene R. Impact of adult day services on behavioral and psychological symptoms of dementia. Gerontologist. 2007;47(6):775–788. doi: 10.1093/geront/47.6.775. [DOI] [PubMed] [Google Scholar]
  18. Ford GR, Goode KT, Barrett JJ, Harrell LE, Haley WE. Gender roles and caregiving stress: An examination of subjective appraisals of specific primary stressors in Alzheimer’s caregivers. Aging and Mental Health. 1997;1(2):158–165. [Google Scholar]
  19. Gallant MP, Connell CM. The stress process among dementia spouse caregivers: Are caregivers at risk for negative health behavior change? Research on Aging. 1998;20(3):267–297. [Google Scholar]
  20. Gaugler JE, Anderson KA, Zarit SH, Pearlin LI. Family involvement in nursing homes: Effects on stress and well-being. Aging and Mental Health. 2004;8(1):65–75. doi: 10.1080/13607860310001613356. [DOI] [PubMed] [Google Scholar]
  21. Gaugler JE, Jarrott SE, Zarit SH, Stephens MA, Townsend A, Greene R. Respite for dementia caregivers: The effects of adult day service use on caregiving hours and care demands. International Psychogeriatrics. 2003;15(1):37–58. doi: 10.1017/s1041610203008743. [DOI] [PubMed] [Google Scholar]
  22. Gaugler JE, Roth DL, Haley WE, Mittelman MS. Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer’s disease during the transition to institutionalization? Results from the New York University caregiver intervention study. Journal of the American Geriatrics Society. 2008;56(3):421–428. doi: 10.1111/j.1532-5415.2007.01593.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  23. Gonyea JG, Paris R, de Saxe Zerden L. Adult daughters and aging mothers: The role of guilt in the experience of caregiver burden. Aging & Mental Health. 2008;12(5):559–567. doi: 10.1080/13607860802343027. [DOI] [PubMed] [Google Scholar]
  24. Goodman CR, Zarit SH, Steiner VL. Personal orientation as a predictor of caregiver strain. Aging & Mental Health. 1997;1(2):149–157. [Google Scholar]
  25. Haley WE, LaMonde LA, Han B, Burton AM, Schonwetter R. Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine. 2003;6(2):215–224. doi: 10.1089/109662103764978461. [DOI] [PubMed] [Google Scholar]
  26. Hunt CK. Concepts in caregiver research. Journal of Nursing Scholarship. 2003;35(1):27–32. doi: 10.1111/j.1547-5069.2003.00027.x. [DOI] [PubMed] [Google Scholar]
  27. Kang SY. Predictors of emotional strain among spouse and adult child caregivers. Journal of Gerontological Social Work. 2006;47(1–2):107–131. doi: 10.1300/J083v47n01_08. [DOI] [PubMed] [Google Scholar]
  28. Kasuya RT, Polgar-Bailey P, Takeuchi R. Caregiver burden and burnout: A guide for primary care physicians. Postgraduate Medicine. 2000;108(7):119–123. doi: 10.3810/pgm.2000.12.1324. [DOI] [PubMed] [Google Scholar]
  29. Kelley SJ. Caregiver stress in grandparents raising grandchildren. Journal of Nursing Scholarship. 1993;25(4):331–337. doi: 10.1111/j.1547-5069.1993.tb00268.x. [DOI] [PubMed] [Google Scholar]
  30. Kiecolt-Glaser JK, Glaser R, Gravenstein S, Malarkey WB, Sheridan J. Chronic stress alters the immune response to influenza virus vaccine in older adults. Proceedings of the National Academy of Sciences. 1996;93(7):3043–3047. doi: 10.1073/pnas.93.7.3043. [DOI] [PMC free article] [PubMed] [Google Scholar]
  31. Kiecolt-Glaser JK, McGuire L, Robles TF, Glaser R. Psychoneuroimmunology: Psychological influences on immune function and health. Journal of Consulting and Clinical Psychology. 2002;70(3):537–547. doi: 10.1037//0022-006x.70.3.537. [DOI] [PubMed] [Google Scholar]
  32. Kim Y, Schulz R. Family caregivers’ strains: Comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health. 2008;20(5):483–503. doi: 10.1177/0898264308317533. [DOI] [PubMed] [Google Scholar]
  33. Knight BG, Fox LS, Chou C. Factor structure of the burden interview. Journal of Clinical Geropsychology. 2000;6(4):249–258. [Google Scholar]
  34. Kuipers E. Time for a separate psychosis caregiver service? Journal of Mental Health. 2010;19(5):401–404. doi: 10.3109/09638237.2010.510155. [DOI] [PubMed] [Google Scholar]
  35. Lazarus R, Folkman S. Stress, appraisal, and coping. New York: Springer; 1984. [Google Scholar]
  36. McCarty EF. Caring for a parent with Alzheimer’s disease: Process of daughter caregiver stress. Journal of Advanced Nursing. 1996;23(4):792–803. doi: 10.1111/j.1365-2648.1996.tb00053.x. [DOI] [PubMed] [Google Scholar]
  37. McEwen M, Willis EM. Theoretical basis for nursing. 2. Philadelphia: Lippincott Williams & Wilkins; 2007. [Google Scholar]
  38. Merriam-Webster. Merriam-Webster online dictionary. 2013 Retrieved from http://www.merriam-webster.com/
  39. Mitrani VB, Lewis JE, Feaster DJ, Czaja SJ, Eisdorfer C, Schulz R, Szapocznik J. The role of family functioning in the stress process of dementia caregivers. Gerontologist. 2006;46(10):97–105. doi: 10.1093/geront/46.1.97. [DOI] [PMC free article] [PubMed] [Google Scholar]
  40. Mittleman MS, Roth DL, Clay OJ, Haley WE. Preserving health of Alzheimer caregivers: Impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry. 2007;15(9):780–789. doi: 10.1097/JGP.0b013e31805d858a. [DOI] [PubMed] [Google Scholar]
  41. National Institute on Aging and National Institutes of Health. Alzheimer’s disease: Unraveling the mystery. Bethesda, MD: U.S. Department of Health and Human Services; 2008. Retrieved from www.nia.nih.gov/Alzheimers. [Google Scholar]
  42. National Institutes of Health. Caring for someone with Alzheimer’s: Resources for caregivers. 2013 Retrieved from http://nihseniorhealth.gov/alzheimerscare/caregiversupport/01.html.
  43. The National Women’s Health Information Center. Frequently asked questions: Caregiver stress. 2006 Retrieved from http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.pdf.
  44. Neylan TC. Hans Selye and the field of stress research. Journal of Neuropsychiatry and Clinical Neurosciences. 1998;10:230–231. doi: 10.1176/jnp.10.2.230a. [DOI] [PubMed] [Google Scholar]
  45. Novak M, Guest C. Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798–803. doi: 10.1093/geront/29.6.798. [DOI] [PubMed] [Google Scholar]
  46. Oyebode J. Assessment of carers’ psychological needs. Advances in Psychiatric Treatment. 2003;9(1):45–53. [Google Scholar]
  47. Pearlin L, Mullan J, Semple S, Skaff M. Caregiving and the stress process: An overview of concepts and their measures. Gerontologist. 1990;30(5):583–594. doi: 10.1093/geront/30.5.583. [DOI] [PubMed] [Google Scholar]
  48. Pett MA, Lackey NR, Sullivan JJ. Making sense of factor analysis: The use of factor analysis for instrument development in health care research. 1. Thousand Oaks, CA: Sage; 2003. [Google Scholar]
  49. Roy C. Research based on the Roy adaptation model: Last 25 years. Nursing Science Quarterly. 2011;24(4):312–320. doi: 10.1177/0894318411419218. [DOI] [PubMed] [Google Scholar]
  50. Schubert CC, Boustani M, Callahan CM, Perkins AJ, Hui S, Hendrie HC. Acute care utilization by dementia caregivers within urban primary care practices. Journal of General Internal Medicine. 2008;23(11):1736–1740. doi: 10.1007/s11606-008-0711-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
  51. Schumacher KL, Dodd MJ, Paul SM. The stress process in family caregivers of persons receiving chemotherapy. Research in Nursing & Health. 1993;16(6):395–404. doi: 10.1002/nur.4770160603. [DOI] [PubMed] [Google Scholar]
  52. Stull DE, Kosloski K, Kercher K. Caregiver burden and generic well-being: Opposite sides of the same coin? Gerontologist. 1994;34(1):88–94. doi: 10.1093/geront/34.1.88. [DOI] [PubMed] [Google Scholar]
  53. Taw J, Cadmus E, Zarcadoolas C. Holding on: Caring for the professional caregiver. Nursing Management. 2012;43(3):32–37. doi: 10.1097/01.NUMA.0000412220.14806.26. [DOI] [PubMed] [Google Scholar]
  54. Tsai PF. A middle-range theory of caregiver stress. Nursing Science Quarterly. 2003;16(2):137–145. doi: 10.1177/0894318403251789. [DOI] [PubMed] [Google Scholar]
  55. U.S. Department of Health and Human Services, Office on Women’s Health. Caregiver stress. 2006 Retrieved from http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html.
  56. Vedhara K, Shanks N, Anderson S, Lightman S. The role of stressors and psychosocial variables in the stress process: A study of chronic caregiver stress. Psychosomatic Medicine. 2000;62(3):374–385. doi: 10.1097/00006842-200005000-00011. [DOI] [PubMed] [Google Scholar]
  57. Videbeck SL. Psychiatric-mental health nursing. 5. Philadelphia: Lippincott Williams & Wilkins; 2010. [Google Scholar]
  58. Vitaliano PP, Young HM, Russo J. Burden: A review of measures used among caregivers of individuals with dementia. Gerontologist. 1991;31(1):67–75. doi: 10.1093/geront/31.1.67. Retrieved from http://gerontologist.oxfordjournals.org/content/31/1/76.abstract. [DOI] [PubMed] [Google Scholar]
  59. von Känel R, Dimsdale JE, Mills PJ, Ancoli-Israel S, Patterson TL, Mausbach BT, Grant I. Effect of Alzheimer caregiving stress and age on frailty markers interleukin-6, C-reactive protein, and D-dimer. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences. 2006;61A(9):963–969. doi: 10.1093/gerona/61.9.963. [DOI] [PubMed] [Google Scholar]
  60. Walker LO, Avant KC. Strategies for theory construction in nursing. 4. Norwalk, CT: Appleton & Lange; 2005. [Google Scholar]
  61. Werner P. Knowledge about symptoms of Alzheimer’s disease: Correlates and relationship to help-seeking behavior. International Journal of Geriatric Psychiatry. 2003;18(11):1029–1036. doi: 10.1002/gps.1011. [DOI] [PubMed] [Google Scholar]
  62. Wilson J. Thinking with concepts. Cambridge, UK: Cambridge University Press; 1963. [Google Scholar]
  63. Winslow BW. Effects of formal supports on stress outcomes in family caregivers of Alzheimer’s patients. Research in Nursing & Health. 1997;20(1):27–37. doi: 10.1002/(sici)1098-240x(199702)20:1<27::aid-nur4>3.0.co;2-w. [DOI] [PubMed] [Google Scholar]
  64. Wright LK, Hickey JV, Buckwalter KC, Hendrix SA, Kelechi T. Emotional and physical health of spouse caregivers of persons with Alzheimer’s disease and stroke. Journal of Advanced Nursing. 1999;30(3):552–563. doi: 10.1046/j.1365-2648.1999.01124.x. [DOI] [PubMed] [Google Scholar]
  65. Zarit SH, Zarit JM. The memory and behavior problems checklist and the burden interview. Philadelphia: Gerontology Center, Pennsylvania University; 1990. [Google Scholar]

RESOURCES