In the United States, there are approximately 4 million stroke survivors, approximately two-thirds of whom live with moderate to severe impairment (American Heart Association, 1998; National Stroke Association, 1998) and approximately 4 million individuals have Alzheimer's disease (U.S. Department of Health and Human Services, 1995). Both of these conditions are primarily seen in elderly individuals and are often associated with devastating deficits in physical, cognitive, and psychosocial functioning. Family caregivers often manage all aspects of the older adult's care, and are essential in assisting stroke survivors and individuals with Alzheimer's disease to remain in the community.
These family caregivers are a tremendous economic resource because of the unpaid patient services they provide. Informal care provided by family members and friends to older adults who are disabled has been estimated at $196 billion for 1997 (Arno, Levine, & Memmott, 1999). However, caregivers have been found to experience negative physical and psychological outcomes (Schulz, Visintainer, & Williamson, 1990; Schulz, O'Brien, Bookwala, & Meissner, 1995; Schulz & Beach, 1999), such as fatigue and depression caused by the demands of caregiving. Finding ways to facilitate caregivers in their roles may contribute to quality of life of caregivers, and help older adults who are disabled remain in the community.
Although caregiving responsibilities may be similar for individuals with Alzheimer's disease and stroke, these illnesses have different trajectories. Dementia of the Alzheimer's type is a progressive, slow mental decline that also affects functional status. Stroke is characterized by abrupt onset resulting in physical and psychological changes. However, during stroke recovery, a person may progressively experience improvement in function and then reach a plateau.
Although the illness trajectories differ, caregivers are faced with similar tasks related to providing assistance for activities of daily living (ADL) when the care receiver has significant physical or cognitive deficits. Few studies have compared family caregivers of stroke survivors to caregivers of individuals with Alzheimer's disease. Caregivers of individuals with Alzheimer's disease have been studied extensively and models identifying risk factors for negative outcomes identified. Little is known about the nature of the characteristics or outcomes of stroke caregivers. Thus, the purpose of this research was to compare family caregivers of individuals with dementia with caregivers of stroke survivors under similar levels of caregiving responsibilities. Level of disability and receipt of respite care were controlled to address some of the methodological problems in previous research.
Outcomes of family caregivers have been conceptualized as psychological, physical, and caregiver burden - a global assessment of the impact of caregiving. Family members in the caregiving role have been found to experience negative psychological outcomes (Anderson, Linto, & Stewart- Wynne, 1995; Biegel, Sales, & Schulz, 1991; Brodaty & Luscombe, 1998; Carnwath & Johnson, 1987; Clyburn, Stones, Hadjistavropoulos, & Tuokko, 2000; Draper, Poulos, Cole, Poulos, & Ehrilich, 1992; Wright, Clipp, & George, 1993) and be physiologically vulnerable (Schulz et al., 1990; Schulz et al., 1995; Wright, Cüpp, & George, 1993). Caregivers experiencing stress have higher mortality rates (Schulz & Beach, 1999). Depression or emotional distress levels in samples have been reported as high as 39% (Carnwath & Johnson, 1987) to 55% (Anderson et al., 1995).
Higher cognitive impairment and lower functional status in the care recipient have been related to a sense of burden in partners of patients with stroke and dementia (Schölte op Reimer, de Haan, Rijnders, Limburg, & van den Bos, 1998). Memory and behavior problems of the care recipient also have been found to contribute to caregiver depression (Clyburn et al., 2000) and psychological morbidity (Brodaty & Luscombe, 1998).
Fatigue has not been studied extensively as an outcome of caregiving, but is an important physiological outcome to study in conjunction with depression. Jensen and Given (1991) found 53% of 248 family caregivers of cancer patients reported moderate to severe fatigue in the caregiving role. This finding is interesting because the average care provided by the caregiver was relatively low, 4.3 hours per day. Fatigue was related to affect the caregiver's schedule, yet was not related to age of the caregiver, employment status, duration of caregiving, or length of hours of care.
Caregivers of older adults with Alzheimer's disease, Parkinson' disease, and cancer have reported similar levels of fatigue when compared to each other and higher levels of fatigue when compared to a control group (Teel & Press, 1999). In testing an individualized caregiver intervention for caregivers of individuals with dementia, Buckwalter et al. (1999) reported, significandy less fatigue in the experimental group at 6 and 12 months. However, this effect was not found for caregiver depression.
Fatigue is a component of depression (AHCPR, 1993), but not all individuals who experience fatigue are depressed. Examining the relationship between fatigue and depression among caregivers has important implications for the direction of interventions. Treatment of depression may include counseling and medication, whereas treatment for fatigue may be the provision of respite care. Additional data are needed to understand the differences between depression and fatigue among caregivers.
Comparison of Stroke vs. Alzheimer's Disease
Although stroke and Alzheimer's disease are similar because they both result in neurological deficits, Alzheimer's disease has been more extensively studied, and the trajectory of decline has been described so caregivers know what to expect. With stroke survivors, the changes in behavior may vary because of the location and severity of the stroke, making it more difficult to prepare the caregiver for changes in behavior. In contrast to Alzheimer's disease, there is a possibility of improvement that may occur within the first few months after a stroke, although the amount and extent of improvement is unknown. In a long-term followup of stroke patients and their families (Wilkinson et al., 1997), most caregivers reported it was upsetting that the family member with the stroke had changed so much and that some of the behavior changes were distressing.
Depression may affect the care recipients and caregivers. Comparing depressed to non-depressed couples affected by stroke (n = 103), care recipient behaviors occurring more frequently in depressed couples were functional impairment, incontinence, mood disturbances (e.g., depression, irritability), and decreased social activities and interests outside the home (Carnwath & Johnson, 1987). Depressed caregivers were more likely to complain of poor physical health; more marital problems; and fewer visits from friends, relatives, and neighbors than non-depressed caregivers.
Draper et al. (1992) compared outcomes of caregivers for stroke survivors and patients with dementia. Overall, caregivers reported moderate levels of caregiver burden and high levels of psychological distress. Although stroke survivors had significantly fewer mood and behavior disturbances and significantly more functional impairment, caregivers of individuals with Alzheimer's disease and stroke did not differ on caregiver burden or psychological morbidity (Draper et al., 1992). Memory and behavior problems were relatively low and the functional ability relatively high. Thus, the negative effects of caregiving were found even with low levels of functional, cognitive, and behavioral impairment in the care recipients.
Influence of Family Factors on Caregivers
In general, families have a powerful effect on outcomes of physical illness (Campbell & Patterson, 1995). Health events have been shown to decrease family functioning over time (Anderson et al., 1995).
In a small, qualitative study, nine stroke survivors and their caregivers were interviewed about problems that arose after returning home from the hospital (Grant, 1996). Four themes emerged from the data:
* Loss of the stroke survivor's identity.
* Managing ADLs.
* Seeking and mobilizing tangible services.
* Obtaining emotional or social support.
This study illustrated the tremendous level of responsibilities the caregivers and their families must cope with to help the stroke survivor. One study found more than 50% of caregivers reported deterioration of family relationships early in the stroke recovery period (Anderson et al, 1995).
Although it is generally known that caregivers with a high level of social support cope better than those with no support, little is known about how social support exerts its positive influence on caregiver stress (Biegel et al., 1991). One theoretically based construct proposed to reduce the effects of stress and facilitate family adaptation is family hardiness. Family hardiness may mitigate the effects of negative outcomes for caregivers.
Family hardiness, defined as the ability of the family as a unit to cope with difficult life experiences, was adapted to the family based on the empirical support for individual hardiness (Clark, 2002; McCubbin, Thompson, & McCubbin, 1996). Family hardiness consists of three components of co-oriented commitment, challenge, and control. Families who are high in hardiness are thought to have a sense of internal strength, be able to work together, be more creative and active in learning new things, and have some control over events in their environment.
Higher levels of family hardiness have been associated with positive outcomes for caregivers (Carey, Oberst, McCubbin, & Hughes, 1991) and higher family functioning (Failla & Jones, 1991). In a small sample of caregivers of stroke survivors, total levels of family hardiness between White and Black caregivers were found to be similar (Williams, 2000).
Higher levels of family hardiness have been associated with higher resources available and more positive coping and problem-solving for families with a member experiencing critical injury (Leske & Jircka, 1998). However, the statistical analysis approach used is of concern because of the inclusion of more than one family member in the analysis. One of the ways family hardiness may exert its effect is that caregivers with hardy families may be more willing to seek help from family members.
Caregivers with a hardy family may have higher expectations of help, a positive response to asking for help, and more assistance offered by family members to cope with stressful situations. Hardy families may visit more frequently and provide more emotional and tangible support. Caregivers' perception of their families' ability to work together and handle difficult situations together may allow them to feel they share the responsibility of caring for the older adult who is disabled.
In a study of dementia caregivers, caregiving motivated by family loyalty or commitment was found to be a strong positive predictor, and caregiving motivated by feelings of obligation had the opposite effect (Carruth, 1996). Recognizing caregivers and their families who are at risk because of low family hardiness and strengthening their interactions may also delay institutionalization.
Comparing caregivers of stroke survivors to caregivers of individuals with Alzheimer's disease may provide important information about these different caregiving situations. Therefore, the research questions in this study were:
* What are the levels of depression and fatigue experienced by caregivers for stroke survivors compared to caregivers for individuals with dementia?
* What are the differences between the care recipient's characteristics, caregiver characteristics, and family support (family hardiness and help-seeking) for stroke survivor and dementia caregivers with high levels of caregiver stress?
CHARACTERISTICS OF CAREGIVERS
* What are the most frequent memory and behavior problems reported by caregivers of stroke survivors compared to those reported by caregivers of persons with Alzheimer's disease?
This study's design was descriptive, exploratory, and cross-sectional. This article reports a secondary analysis on data collected for a larger study in which mediating relationships of a stress and coping model were tested, including older adults with various disabilities (Maddi & Kobasa, 1984). The Human Subject Review Board of University of Rochester Medical Center approved the main study.
Participant recruitment for the convenience sample of the main study was conducted at five adult day care sites. A joint letter from the principal investigator (P.C.C.) and the day care was mailed to family members of day care participants. A follow-up telephone call was made to determine if caregivers were interested in participating. If they indicated they were willing to participate, a meeting was set up at a time of mutual convenience.
Sample inclusion criteria for the main study were caregivers had to be at least 18 years old, able to read and write, and caring for a disabled older adult who was currently enrolled in a day care program and required assistance with at least one physical ADL or two instrumental ADLs (IADLs). See Table 1 for caregiver characteristics. The disability inclusion criteria were used to insure the caregivers were experiencing high levels of caregiver responsibility.
Using day care centers for participant recruitment was an attempt to control that the caregivers would be caring for care recipients with substantial functional impairment. Thus, the caregivers would be experiencing high levels of caregiving responsibility. However, all caregivers would also be receiving some level of respite care. Use of a day care setting where care recipients had substantial functional impairment does address a weakness in the literature, when often, even caregivers with little caregiving responsibilities are included in the sample.
To insure the sample criteria were met, care recipients' level of functional disability was measured using two scales - Lawton's Physical SelfMaintenance Scale (PSMS) (Lawton & Brody, 1969; Lawton, Moss, FuIcomer, & Kleban, 1982) and IADL scale (Lawton & Brody, 1969; Lawton, Moss, Fulcomer, & Kleban, 1982). The PSMS is a 3-point scale with items related to self-care abilities such as feeding, dressing, and walking. Higher scores indicate higher function.
The IADL scale contains items related to the care recipient's ability to perform activities such as shopping, housework, managing finances, and yard work. Higher IADL scores indicate higher function. These tools have been previously reviewed and reported to have adequate reliability and validity (Frank-Stromborg & Olsen, 1997) with Chronbach's alpha coefficient in the present study of .75 for PSMS and .77 for the IADL.
Descriptive data reflecting the levels of care recipients' disability are presented in Table 2. For the stroke survivors, the mean for the IADL was below the midpoint of the scale and represented the care recipients as a very disabled group. Individuals with dementia had a significandy lower mean (t = 3.20, p =. 003) on the IADL, reflecting poorer function in this area (Table 2). The mean for the PSMS was at the midpoint of the scale, reflecting that these older adults had to be physically able to attend a day care program. There was no difference between the two groups on the PSMS. Overall, caregivers were caring for stroke survivors and individuals with dementia who required major assistance in their daily activities.
CHARACTERISTICS OF CARE RECIPIENTS
Memory and behavior problems. The Memory and Behavior Problems Checklist (MBPC) was used to measure memory and behavior problems of the care recipient (Zarit & Zarit, 1990). Two dimensions are measured: frequency of memory and behavior problems and how bothersome or upsetting the behavior is to the caregiver. The 25item scale includes a wide array of memory and behavior items (e.g., wandering, forgetting what day it is, talking a lot, incontinence). The frequency of memory and behavior problems occurring was rated on a Likert-type scale of "not having occurred" to "occurring daily." The MBPC reliability coefficient was .83 in the current sample.
Caregiver outcomes. Depression and fatigue were chosen as the major outcomes. Caregiver burden was considered an outcome measure. However, because it does not allow for comparisons across samples, and it does not have established levels indicating the need for intervention, it was not measured.
Depression was measured by the Center for Epidemiologic Studies Depression Scale (CES-D) (Radloff, 1977). The CES-D is a 20-item, Likert-type scale and has been used extensively to examine depression in various populations and provides established levels for those at greatest risk for clinical depression. Alpha coefficient for the CES-D was .88.
Fatigue was measured using 22items of the Piper Fatigue Scale (PFS) (Jensen & Given, 1991). Each of the 22 items is scaled 0 to 10, with word descriptors with higher scores indicating higher levels of fatigue. This scale has been used to measure fatigue in different samples including a sample of caregivers of patients with cancer (Jensen & Given, 1991). There are four dimensions representing subjective fatigue:
* Behavioral or severity (6 items).
* Affective meaning (5 items).
* Sensory (5 items).
* Cognitive or mood (6 items).
The total fatigue score was obtained by adding all 22 items and dividing by 22. The coefficient of reliability for the PFS was .95.
Family hardiness. Family hardiness was measured using the Family Hardiness Index (FHI) (McCubbin, Thompson, & McCubbin, 1996). The FHI consists of four components of co-oriented commitment, challenge, control, and confidence. The FHI is a 20-item Likert-type scale with a 4point response (0 to 3) scale ranging from false to true related to the family situation. The caregiver identified specific family members and responded about those members. The alpha for the total scale was .86.
Help-seeking. Caregivers' willingness to seek help from their families was measured using the Helpseeking Scale. This 11 -item, Likerttype scale developed by Searcy (Searcy & Eisenberg, 1992) reflects two aspects of willingness to seek help from a sibling. The first six items refer to how likely the participant is to seek help, and the last five items refer to the participant's perceived discomfort in seeking help. Higher scores reflect less likelihood and more discomfort in seeking help from a sibling. The instrument has been adapted for this study by replacing the term "sibling" with the term "family." In this study, the reliability was alpha .87.
CHARACTERISTICS OF CAREGIVING SITUATION
Demographic, health-related, and situation-reUted data. For the caregiver, gender, age, marital status, race, health problems, medications, economic status, and relationship of caregiver to care recipient were obtained. For the care recipient, age, gender, marital status and race were obtained. Data related to the caregiving situation, such as living arrangements, length of time the caregiver had provided care, and how long and how often the care recipient attended day care were collected.
ANALYSES AND RESULTS
T tests were used to compare group means. For categorical data, chisquare tests were used as appropriate.
CAREGIVER OUTCOMES AND FAMILY SUPPORT
Characteristics of Caregivers, Care Recipients, and Caregiving Situation
A total of 45 caregivers, 22 for stroke survivors and 23 for individuals with Alzheimer's disease, participated in the study. No significant differences between the caregivers by group on age or other variables except education and health problems were found (Table 1).
The Alzheimer's caregivers had more individuals who had some college education and reported no major health problems. The mean ages of all caregivers were in the 50year age group, and most were women. The majority were daughters or spouses of the person for whom they were providing care. Most of the caregivers were married, White, and educated. Approximately half were employed outside the home and had an income of less than $30,000 per year.
For the care recipients, there were several significant differences between stroke survivors and those with Alzheimer's disease (Table 2). Care recipients with dementia were more likely to be women, not married, older, with more memory and behavior problems than stroke survivors, and, as stated earlier, lower functioning in the area of IADLs.
For both groups, the majority of the care recipients lived with their caregivers, had attended day care for an average of approximately 2 years, and went to day care 3 to 4 days a week (Table 3). Although not statistically significant, on average, the dementia caregivers had been in their role for approximately Wz years longer (X = 5.02, SD 3.7) than stroke survivor caregivers (X = 3.52, SD 2.6).
Caregiver Outcomes and Family Hardiness
Forty-four percent of the total sample scored on or above the cutoff of 16 used to indicate possible clinical depression on the CES-D. Only two caregivers (both in the stroke group) reported taking antidepressant medication. There was no difference between the caregiver groups on depression scores (Table 4).
Mean fatigue scores fell below the midpoint of five on the PFS indicating the fatigue in the sample was moderate. Caregivers of stroke survivors and caregivers of individuals with Alzheimer's did not differ by level of fatigue (Table 4).
Family hardiness was not significantly different between the two groups (Table 4). Mean scores on the FHI scale were similar to ones reported for a group of caregivers for a family member with cancer (Carey et al., 1991), individuals receiving radiation therapy (Oberst, Hughes, Chang, & McCubbin, 1991), and two studies of families of children with developmental disabilities (Failla & Jones, 1991; Snowdon, Cameron, & Dunham, 1994). Mean scores in this study are well above the midpoint on the FHI, indicating caregivers reported high levels of family hardiness in general.
Family hardiness was significantly related to willingness to seek help from family members for caregivers of stroke survivors (r = -.47, p = .028) and caregivers of individuals with Alzheimer's disease (-.66, p = .001). Because lower scores on the Helpseeking Scale indicate a greater willingness to seek help, caregivers who scored high on family hardiness were more willing to seek help from their family members.
The occurrence of memory and behavior problems reported by more than 50% of the caregivers was determined and ranked according to how bothersome the behavior was to caregivers. From the memory and behavior problems identified, the three memory and behaviors rated as most bothersome for caregivers of stroke survivors were uncooperativeness (62%), appears sad or depressed (42%), and becomes angry (42%). For the caregivers of individuals with Alzheimer's disease, the three memory and behaviors rated as the most bothersome were care recipient engaging in potentially dangerous behavior for self or others (85%); being uncooperative (69%); and losing, misplacing, or hiding things (57%).
Although care recipients appearing sad or depressed was reported by more than 50% of both groups of caregivers, it was one of the top three behaviors that bothered caregivers of stroke survivors. Only 24% (n = 21) of the stroke survivors and 26% of the individuals with Alzheimer's disease were reported to be using an antidepressant medication.
In general, caregivers experienced high levels of depression. Caregivers of stroke survivors with similar levels of family support experienced levels of depression and fatigue similar to caregivers of patients with Alzheimer's disease, even though the caregivers of patients with Alzheimer's disease reported more memory and behavior problems. However, because all care recipients attended day care, and one specialized in care of patients with Alzheimer's disease, it may be those families had a better understanding of the memory and behavior problems associated with the disease. The same educational emphasis may not have been given to caregivers of stroke survivors. Also, the Alzheimer's caregiver group had more individuals with college education - a variable that has been shown to be associated with fewer negative effects of caregiving.
Although, on average, individuals with Alzheimer's disease had attended day care for a longer period of time, went more days per week, and their caregivers had been in the role approximately VA years longer, there were no statistical differences between the groups, possibly because of the small sample size. Attending day care for a longer time and more days per week may be associated with caregivers of individuals with Alzheimer's disease reporting more memory and behavior problems of care recipients.
Anecdotally, several of the caregivers of stroke survivors often made comments that they thought the care recipients were at times behaving certain ways, such as being uncooperative, on purpose. The focus on rehabilitation with stroke is often on physical aspects of the condition. Families may not receive enough information about the cognitive or behavioral changes that may result from stroke. In a review of the literature, Mayo (1998) described cognition, depression, and anxiety as the "neglected" outcomes of stroke.
The types of accommodations these families had made to care for these older adults were extraordinary, such as redecorating part of their own home to make the rooms similar to the older adult's home and taking in foster children as a way to be home and have some additional income. Other caregivers were concerned with safety and took actions to reduce the chance for accidents, such as shutting down the circuit breaker so there was no electricity in the house at night. The families' internal strength for dealing with difficult situations, family hardiness, may explain why some caregivers experience negative outcomes and others do not. A family that is high in hardiness may provide more help and emotional support, or help the caregiver feel valued.
Although the frequency of memory and behavior problems reported was lower in the stroke survivors than the individuals with Alzheimer's disease, the caregiver outcomes were not different. It may be that the presence of memory and behavior problems is what is important and not the frequency of the behaviors. Changes occurring in the stroke survivor, so that the caregiver feels the stroke survivor is not the same person as before the stroke, may be similar to the loss of the person through Alzheimer's disease and may explain the similar depression levels.
The memory and behavior problems reported were primarily related to the stroke survivor's sadness, inactivity, lack of purposeful activities, and mood disturbances (e.g., anger, uncooperativeness). It may be that stimulation for stroke survivors to stay engaged in activities is helpful. Whereas, for individuals with dementia, finding ways to help them not become overstimulated may be more important. This is an important distinction to be determined because the focus of an intervention for caregivers of individuals with Alzheimer's disease, such as the Progressively Lowered Stress Threshold (Buckwalter et al., 1999) may not be as effective in caregivers of stroke survivors.
Uncooperativeness of the care recipients, which was rated by caregivers of both groups as very bothersome may have different explanations. Individuals with dementia may be resistant because they do not understand what the caregiver wants them to do. Stroke survivors may be resistant because they may or may not understand what the caregiver wants them to do or because of other factors, such as depression or struggling to maintain independence. For example, hurried caregivers may take over and dress the stroke survivors. Stroke survivors may resist this assistance, and caregivers may perceive this as uncooperative. Another explanation may be the depression that stroke survivors may be experiencing. Understanding these dynamics may provide direction for different intervention strategies.
Although the care recipient appearing sad or depressed bothered caregivers of stroke survivors, only a small number were receiving pharmacological treatment for depression. Caregivers may need to be educated about the potential for depression, which may occur much later after the initial stroke, and to discuss treatment with the stroke survivors' physician.
In addition, a substantial number of caregivers had depression scores greater than the level indicating serious depression. They also were experiencing moderate levels of fatigue, even though they had the benefit of respite care. Almost none of the caregivers were receiving pharmacological treatment for depression. Thus, depression appears to be unrecognized by health care professionals for caregivers and care recipients.
There are limitations to this study. Although memory and behavior problems were measured, cognitive impairment was not. This may influence caregiver outcomes. The sample size was small and findings can only be generalized to caregivers caring for individuals enrolled in day care settings.
Caregivers of stroke survivors and individuals with Alzheimer's disease with similar levels of family support experience similar levels of depression and fatigue. On the other hand, the memory and behavior problems that caregivers found bothersome were different between these two groups. Nurses need to assess what aspect of a care recipient's behaviors are bothersome to the caregiver to offer specific, helpful suggestions to manage the behaviors.
Because the stroke recovery process is different from Alzheimer's disease, it may be important to examine causes of depression and fatigue in caregivers of stroke survivors and Alzheimer's disease separately. Regardless, nurses need to recognize depression in caregivers. Consultation by advanced practice psychiatric nurses for caregivers and care recipients may be beneficial in detecting depression and facilitating treatment. This line of inquiry may help define interventions better targeted to caregiver outcomes in each group.
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CHARACTERISTICS OF CAREGIVERS
CHARACTERISTICS OF CARE RECIPIENTS
CHARACTERISTICS OF CAREGIVING SITUATION
CAREGIVER OUTCOMES AND FAMILY SUPPORT