Aging & Mental Health, January 2007; 11(1): 14–19
ORIGINAL ARTICLE
Psychological distress in Brazilian caregivers of relatives with dementia
D. R. BANDEIRA1, J. PAWLOWSKI1, T. R. GONC ¸ ALVES1, J. B. HILGERT1, 1 2 M. C. BOZZETTI , & F. N. HUGO 1
Federal University of Rio Grande do Sul, Brazil and 2State University of Campinas, Brazil
(Received 10 June 2006; accepted 1 January 2006) Abstract The authors evaluated stress, anxiety, depression, and feelings of hopelessness in caregivers of relatives with dementia. One hundred and twenty-nine caregivers and 145 non-caregivers who lived in metropolitan Porto Alegre, Brazil completed Lipp’s Inventory of Stress Symptoms for Adults, (ISSL), and Beck’s Anxiety (BAI), Depression (BDI), and Hopelessness (BHS) scales. Caregivers showed higher levels of anxiety, depression, hopelessness, resistance/pre-exhaustion stress than controls. This study indicates that constant caregiving may significantly increase the risk of physical and mental health problems for caregivers in Brazil.
Introduction Caregivers of people with dementia often experience stress and burden (Cacioppo et al., 1998; Haley, 1997; Pinquart & So¨rensen, 2003; Russo, Vitaliano, Brewer, Katon, & Becker, 1995; Vitaliano, Zhang, & Scanlan, 2003). In most cases (Pinquart & So¨rensen, 2003), the caregiver is a close relative, usually the spouse or a son/daughter and lives with the patient. However, Anthony-Bergstone, Zarit and Gatz (1988), did not find significant differences in caregiver well-being when comparing those living with the people with dementia and caregivers who lived in other households. The progressive and irreversible deterioration of cognitive function and personality, behaviour problems and physical inabilities of the patient may have specific effects on caregivers (Goode, Haley, Roth, & Ford, 1998; Russo et al., 1995). Thus, the impact on the health of the caregiver can be associated with the way the disease manifests itself affecting the relationship between the caregiver and the patient and the performance of the caregiving tasks. In North America approximately 80% of the care provided to patients with Alzheimer’s disease is carried out in the community by relatives (Haley, 1997), and there is more evident strain among family caregivers (Cantor, 1983). On the other hand, studies of caregiver outcomes indicate that some characteristics of the caregiver (such as coping and perceived social support) are more important than the levels of patient’s impairment (Haley, Levine, Brown, &
Bartolucci, 1987; Haley et al., 1996; Hooker, Monahan, Shifren, & Hutchinson, 1992). This suggests that there are individual differences in the ability of the caregivers to deal with similar situations. Vitalino, Russo, Young, Teri and Maiuro (1991) showed that caregiver burden was related to stressors, vulnerability, and the resources of the caregivers, and the interactions between these aspects. Such findings are in accord with the cognitive phenomenological approach proposed by Lazarus and Folkman (1984), which postulates that stressors alone do not explain the variability in adaptation. Many studies have shown that taking care of a relative with dementia is frequently associated with physical and mental health problems (Bodnar, & Kiecolt-Glaser, 1994; Goode et al., 1998; Haley, 1997) even suggesting that caregiving could be a risk factor for mortality (Schulz & Beach, 1999). According to Schene (1990), the impact of the caregiving can be divided into objective and subjective aspects. The objective aspects are related to changes in family relations, finances, and leisure, and the subjective ones, to physical and mental stress. Studies with caregivers of people with dementia have demonstrated elevated levels of stress in this population, when compared to controls (Bauer et al., 2000; Cacioppo et al., 1998; George & Gwynther, 1986), and higher rates of recurrent symptoms, as well as higher levels of depression and anxiety among caregivers (Haley, 1997; Russo et al., 1995;
Correspondence: Dr Denise Rushel Bandeira, Federal University of Rio Grande do Sul, Post-Graduation Program in Development Psychology, 2600 Ramiro Barcelos Street, suite 120, Porto Alegre, RS, Brazil, 90035-003. E-mail:
[email protected] ISSN 1360-7863 print/ISSN 1364-6915 online/07/010014–19 ß 2007 Taylor & Francis DOI: 10.1080/13607860600640814
Distress in caregivers Vitalino et al., 1991). Russo et al. (1995) found that a previous history of depression/anxiety did not explain the increase of these disorders in the caregivers after starting caring for the patient. Other studies indicate that depressive symptoms are sustained even three years after the patient’s death (Bodnar & Kiecolt-Glaser, 1994). Finally, the use of physiological and endocrine measures, in order to establish a stress model, indicates the negative impact of the caregiving on the immune system of caregivers (Bauer et al., 2000; Cacioppo et al., 1998; Mills et al., 1997). There are no Brazilian studies that have used psychological measures to evaluate the existence of stress, anxiety, depression, and hopelessness among caregivers. Thus, the objective of this study was to use psychological measures to evaluate such symptoms among caregivers of patients with dementia and compare these to controls.
Methods Participants One hundred and twenty nine family caregivers of people with dementia and 145 control subjects recruited in conviviality groups from metropolitan Porto Alegre participated. All participants were evaluated during an interdisciplinary project that included psychological assessment, dental exams, physical health evaluation, and assessment of hypothalamus-pituitary-adrenal axis hyper-activation by means of measures of circadian rhythms of salivary cortisol. This interdisciplinary project was named ‘Stress, cortisol, and periodontitis. Biological and clinical findings in a population aged 50 years and over’ and was approved by the Committee of Ethics in Research of Clinicas Hospital of Porto Alegre. Caregivers and controls (Table I) showed a similar distribution in terms of gender, ( 2(1) ¼ 1.58, p ¼ 0.21), schooling ( 2(2) ¼ 0.28, p ¼ 0.86), and family income (t (269) ¼ 0.48, p ¼ 0.63). However, a significant difference was observed for age
Table I. Characteristics of. the sample. Caregivers (n ¼ 129) Gender Female Male Age M (SD) Schooling Elementary level Secondary level Graduate Family income (in R$) M (SD)
106 (82.2%) 23 (17.8%) 60.31 (9.04) 46 (35.7%) 39 (30.2%) 44 (34.1%) 2167.53 (1613.83)
Controls (n ¼ 145)
128 (88.3%) 17 (11.7%) 62.56 (8.18) 47 (32.4%) 45 (31%) 52 (35.9%) 2277.86 (2070.55)
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(t (268) ¼ 2.14, p ¼ 0.033) with the controls being around 2.5 years older. Among the caregivers, 51.9% were a son/ daughter, 33.3% were a spouse, and 14.7% were other relatives (i.e., son/daughter-in-law, brother/ sister, nephew or brother/sister-in-law). Caregivers were taking care of their relative with dementia for a mean time of four years (M ¼ 4.3; SD ¼ 3.11; from 1–20 years), for almost 16 hours/day (M ¼ 15.8; SD ¼ 8.36). The majority of the caregivers (63%) spent 12 hours/day or more taking care of the dementia patients. While 83.3% provided care on a daily basis, 16.7% took care of the patient on a non-regular basis (i.e., only weekends or only week days). A high percentage of caregivers (70%) had been involved in a support group for caregivers of people with dementia and 56.6% declared that they had help with caregiving activities while 30.2% took care of the relatives by themselves. Patients had shown symptoms of dementia for a mean of five years (M ¼ 5.0; SD ¼ 4.68), and most (87.6%) lived with the caregiver. Only 11% of the patients were institutionalized. According to the caregivers, 11.6% of the patients were in the initial stage, 52.7% in the moderate stage, and 34.9% in the advanced stage of dementia. Caregivers from two support groups for relatives of people with dementia in two university hospitals were invited to participate. People recruited through local newspapers were also included. Participants were included if they reported that they were relatives of people with dementia and they were providing care for the relative. Controls were recruited in conviviality groups for aged persons at the Federal University of Rio Grande do Sul and via other community agencies in Porto Alegre. They were also recruited through adverts in local newspapers. Controls were included only if they were not providing care for a relative with mental health problems. Procedures and instruments Those who agreed to participate and met the inclusion criteria signed the consent form and responded to a socio-demographical data questionnaire (Hilgert, 2002). They also completed Beck’s Anxiety (BAI), Depression (BDI), and Hopelessness (BHS) scales (Beck & Steer, 1993), adapted and validated in Brazil by Cunha (2001), and Lipp’s Inventory of Stress Symptoms for Adults (Inventa´rio de Sintomas de Stress para Adultos de Lipp, ISSL) developed and validated for use in Brazil, with good psychometric properties ( ¼ 0.91) (Lipp, 2000). Each Beck’s Scale has a single score. The BAI and BDI evaluate symptoms of anxiety and depression, respectively, perceived by the person during the week preceding the assessment, while the BHS evaluates the extension of negative expectations about the immediate and remote future. The ISSL
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D. R. Bandeira et al. The ANCOVA tests, controlling for age, revealed that the measures of resistance/pre-exhaustion stress, exhaustion stress, anxiety, and depression were significantly different between the groups. The t-tests showed significant differences between the groups for the Hopelessness measures (see Tables II and III). These data revealed high levels of anxiety, depression, hopelessness, resistance/pre-exhaustion stress and exhaustion stress among the caregivers. Frequency analyses were performed to assess the distribution of the participants among each of the different phases of stress and levels of anxiety, depression, and hopelessness according to Brazilian norms. Chi-square tests were done in order to check if there were significant associations between the groups and each phase of stress and level of anxiety, depression, and hopelessness (see Table IV). Alert and resistance stress were collapsed into the category ‘non-pathological stress’ while pre-exhaustion and exhaustion stress were converted into ‘pathological stress’. For the BDI, moderate and severe depression levels were grouped as a category of ‘depression’. There was a significant difference between the groups ‘non-stressed’ and ‘pathological stress’. Caregivers were more likely to have ‘pathological stress’ than the controls. Caregivers also presented significantly more anxiety. When the BDI scores were compared, significant differences were observed in all levels and revealed a tendency for a higher severity of depression among caregivers. Caregivers were also more likely to exhibit high levels of hopelessness than controls. Odds ratios were calculated for all measures/ outcomes of interest. Our results indicate that caregivers were 3.93 times more likely to have ‘pathological stress’ than controls (p50.01). Caregivers were also more likely to be anxious
has three totals corresponding, respectively, to the sum of the stress symptoms perceived by the participant in the last 24 hours, last week, and last month. Results obtained for the ‘last week’ can be classified into two distinct levels (resistance or pre-exhaustion), depending on the symptoms. Using this approach, four different phases of stress are obtained with ISSL: (a) alert stress, a phase considered positive to the subject, who feels more productive, having more energy and vigour as a function of the adrenaline production elicited by the stressor; (b) resistance stress phase, which is the accumulation of stressors over time and results in an attempt of the organism to resist; (c) post-resistance stress phase, where a stressful situation extends for too long and the organism tends to search for an adaptation; and, (d) exhaustion stress, considered a pathologic stress phase.
Results Scores of the BAI, BDI, BHS, and ISSL scales were summed and a total for each scale was obtained. All scales presented good internal consistency levels (ISSL: ¼ 0.89; BAI: ¼ 0.92; BDI: ¼ 0.87, and BHS: ¼ 0.85). There was no significant relationship between gender, income or educational level and the scores. Statistically significant Pearson correlations were observed between age and resistance/pre-exhaustion stress (r ¼ 0.20, p50.01), exhaustion stress (r ¼ 0.22, p50.01), anxiety (r ¼ 0.16, p50.01), and depression (r ¼ 0.14, p50.05). The comparison of the two groups on mental health and stress measures was assessed with ANCOVA tests, controlling for age. Comparisons between groups for all other measures were assessed using the Independent-Samples t-tests.
Table II. Mean, standard deviation and covariance analysis for age to the measures of stress, anxiety and depression. Caregivers
Resistance/Pre-exhaustion stress Exhaustion stress BAI1 BDI2
Controls
M
SD
M
SD
F
5.33 6.14 16.14 13.52
3.51 4.36 11.36 8.74
3.83 4.28 9.83 9.88
2.76 3.27 9.39 7.69
12.63** 12.99** 22.20** 11.36*
*p50.01; **p50.001; 1Beck’s anxiety scale; 2Beck’s depression scale.
Table III.
Mean, standard deviation, t-test and p-value of the alert stress and hopelessness measures. Caregivers
Alert stress BHS1 1
Controls
M
SD
M
SD
t
df
p
3.86 5.24
2.67 4.42
3.41 3.77
2.03 3.31
1.57 3.08
237.58 235.56
0.118 0.002*
Beck’s hopelessness scale. *p50.01.
Distress in caregivers Table IV.
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Chi-square tests of the stress, anxiety, depression and hopelessness phases in caregivers and controls. Caregivers
Controls
38.8%a 45.0% 16.3%b
51.7%a 42.8% 5.5%b
39.5%c 26.4% 23.3%d 10.9%e
66.9%c 21.4% 7.6%d 4.1%e
45.7%f 32.6%g 21.7%h
66.7%f 22.0%g 11.3%h
55%i 27.9% 7.8% 9.3%j
69.7%i 20.7% 7.6% 2.1%j
1
Stress (ISSL ) Without stress Non-pathological stress Pathological stress Anxiety Minimum Low Moderate Severe Depression Minimum Low Moderate to severe Hopelessness Minimum Low Moderate Severe
2
df
10.06**
2
25.59**
3
12.43**
2
10.33*
3
*p50.05; **p50.01; a–j Letters represent statistical significant differences; 1ISSL: Lipp’s inventory of stress symptoms for adults.
(low: OR ¼ 2.09, p ¼ 0.015; moderate: OR ¼ 5.19, p50.001 and severe: OR ¼ 4.44, p50.01); more depressed (low: OR ¼ 2.79, p50.01; moderate to severe: OR ¼ 2.79, p50.01), and to be more hopeless (low: OR ¼ 1.71, p ¼ 0.067; severe: OR ¼ 5.69, p50.01) than controls. Next, effects of support in performing caregiving related-activities on the levels of stress, anxiety, depression, and hopelessness were assessed. Independent-Samples t-tests did not show differences between those who had and did not have support in caregiving activities for scores of BAI, t (110) ¼ 1.32, p40.10; BDI, t (110) ¼ 0.74, p40.10; BHS, t (110) ¼ 0.19, p40.50; and levels of alert stress, t (110) ¼ 0.55, p40.50; resistance/ pre-exhaustion stress, t (110) ¼ 0.09, p40.50; and exhaustion stress, t (110) ¼ 2.89, p40.50. No significant differences were observed on levels of stress, anxiety, depression, and hopelessness when the type of relationship between caregivers and patients and stage of dementia were considered factors in an ANOVA. Pearson’s correlations between years and hours dedicated to caregiving activities and the emotional measures were also not statistically significant.
Discussion Caregivers of those with dementia have elevated levels of psychological suffering, stress, anxiety, and depression (Anthony-Bergstone et al., 1988; Haley, 1997; Pinquart & So¨rensen, 2003; Russo et al., 1995; Vitaliano et al., 2003). In the present study, we aimed at verifying the frequency and severity of stress, anxiety, depression, and hopelessness in Brazilian caregivers of relatives with dementia and identifying relationships, if any, with
socio-demographic status, level of involvement with caregiving-related activities and the support received to perform these activities. Initially, bivariate analyses concerning socio-demographics (age, family income, and schooling) were carried out in this study. As we observed a negative relationship between age and the symptoms evaluated, subsequent analyses were performed controlling for this variable. However, other studies have demonstrated that older people may report high depression and low self-efficacy (Pinquart & So¨rensen, 2003). So, age appears to exert some influence on the measures evaluated and highlights the need to research other confounding variables not evaluated in our investigation. In relation to family income and schooling, we found no significant differences in the symptoms presented between caregivers and controls. Some authors reveal contradictory findings about the influence of these variables on the symptoms evaluated in the caregivers. Dura, Stukenberg and Kiecolt-Glaser (1990) reported that income and schooling were lower among caregivers that experienced depressive disorder during the period that they were taking care of someone, while Russo et al. (1995) showed the existence of a relationship between income and anxiety and depression. This does not appear to be true in Brazil. Our findings corroborate some of the findings reported in the literature and point to an association between caregivers’ mental health and the act of caring for an ill relative. Caregivers and controls both showed productive stress, however caregivers more often had symptoms related to the resistance stress phase. This phase is not yet considered pathological, but is of concern, as it signals an excessive pace and the need to obtain relief (Lipp, 2000). Caregivers also showed higher levels of pathological
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D. R. Bandeira et al.
stress (exhaustion phase). Those findings are in accord with other studies previously cited, that also showed higher levels of stress in caregivers than in non-caregivers, despite the differences in methods/ measures used to evaluate stress (Bauer et al., 2000; Goode et al., 1998; Pinquart & So¨rensen, 2003). Anxiety, depression, and hopelessness, evaluated using Beck’s scales, were higher in caregivers. Our study corroborates studies by AnthonyBergstone et al. (1988) and Dura, Stukenberg and Kiecolt-Glaser (1991), pointing out higher levels of anxiety in caregivers. In addition, the measure used in our study (BAI) which could detail different levels of anxiety, showed significant differences between caregivers and controls in moderate and severe levels of anxiety. As observed by previous authors (e.g., Schulz & Williamson, 1991), we also observed high levels of depression in caregivers. All levels of depression evaluated by the BDI (i.e., minimum, medium, moderate, and severe) were common in caregivers. However, there were no significant differences in depression levels related to gender in our sample. In contrast, Schulz and Williamson (1991), found more elevated levels of depression among women, but this could also be an artifact of the small number of males in our sample. It could also point to cultural differences in the characteristics of men who become caregivers in Brazil and those who do so in North America. We could not find studies in the literature that used Beck’s Hopelessness Scale to compare caregivers with controls. Higher levels of hopelessness among caregivers could be a reaction to the dayto-day demands of caregiving and to the need to deal with the worsening of the relative’s disease. Alzheimer’s disease, which represents the majority of the population affected by dementia, presents an irreversible course, with phases of progressive worsening that can lead to death. When faced by the possibility of losing a relative, the caregiver can demonstrate more negative expectations about the future and become depressed. This is the first time that this instrument was used to assess hopelessness among caregivers and, due to its relevance we recommend that future studies include such measure. Corroborating other studies (Anthony-Bergstone et al., 1988; Dura et al., 1991), our measures showed no significant differences regarding the nature of the family relationship (i.e., spouse, child, etc.,) of the caregiver with the patient. Pinquart and So¨rensen (2003), however, showed in a meta-analysis that the differences related to stress and depression between caregivers and controls are significantly larger for spouses than for sons/daughters. Cultural factors could also influence the way the relative will experience and evaluate the situation of caregiving, as it may affect the network of social support which the caregiver could turn to. Haley et al. (1996) showed that black caregivers
were more adjusted to the situation of taking care of a relative with dementia and less stressed than white caregivers, probably as a result of a distinct cultural value for the role of the caregiver of the dependent elderly. In relation to the sample evaluated in our study, it is important to be aware that the cultural and ethnic variations in the Brazilian population could have affected our results. Caregivers who received some form of assistance and those who took care of their relatives with dementia by themselves did not differ on measures of stress or mental health. On the other hand, the amount of social support received and the satisfaction with it could influence the caregivers’ stress response (Bodnar & Kiecolt-Glaser, 1994; Goode et al., 1998; Haley et al, 1996; Morano, 2003; Vitaliano et al., 1991). In this case, the fact that the majority of the caregivers participated in a support group may have mediated these results since all were offered some form of social and emotional support and helped to develop effective coping strategies. Coping strategies and the ways that caregivers perceive the situation seem to personalize the way each caregiver will deal with the stresses (Goode et al., 1998; Haley et al., 1996). New studies should investigate, through a longitudinal approach, how level of social support mediates the impact of caregiving for the family caregiver. The present study, the first of this type in Brazil, demonstrates that the situation of constant caregiving seems to present important risks to the psychological health of Brazilians, and corroborates findings of other studies from other countries. Therefore, it is very important to provide psychological support to caregivers. Research is needed that further evaluates caregivers’ symptoms of stress and depression, and also focuses on the effective use of resources, such as social support and coping strategies, used by caregivers when faced by the task of taking care of a relative with dementia. This should also include cross-cultural comparisons.
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