The Emotional Impact of Caring for the Chronically III PETER

V.

RABINS, M.D., M.P.H., MELINDA D. FITTING, PH.D.

JAMES EASTHAM. Sc.D., JOHN FETTING. M.D.

Thirty-two family caregivers ofpersons with Alzheimer's disease and 30 caregivers of persons with cancer were compared cross-sectionally to determine whether the type ofillness caredfor affected the emotional state ofthe caregiver and to identify correlates of both undesirable and desirable emotional outcomes. No prominent differences in negative or positive emotional states were found between the two groups. Correlates ofnegative and positive emotional status were identified. They include caregiver personality variables, the feeling that one is supported by one's religious faith, and the number of social supports.

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he number of persons who suffer from chronic medical and psychiatric illnesses has increased dramatically in recent years. I The majority of these chronically ill individuals are cared for by family and friends. 2 so-called infonnal supports, and these care providers suffer high rates of emotional distress, social disability. and financial strain.3-5 A great deal of the recent research on the emotional impact of caring for the chronically ill has focused on caregivers of the demented.6-'O It is unclear whether the findings of these studies can be extrapolated and applied to caregivers of persons suffering other chronic illnesses. Thus, the present study was initiated to detennine whether the emotional state of family caregivers of the demented differs from that of caregivers of cancer patients and to identify specific correlates of the caregiver's emotional response. including the type of disease. caregiver variables, and a variety of social and demographic factors. METHODS

with cancer were recruited to participate in a longitudinal study of the emotional impact of caregiving. Twelve other caregivers of cancer patients and one caregiver of a demented patient declined to participate. The caregivers of the demented were the primary care providers of individuals attending the Psychogeriatric Clinic of the Department of Psychiatry at the Johns Hopkins Hospital. All patients had clinically diagnosed probable Alzheimer's disease and had been diagnosed within the previous two years. All but one of the cancer caregivers were family members living with persons attending the Oncology Outpatient Clinic of the Johns Hopkins Hospital. The one exception lived one mile away from her elderly father and was the primary care-

Received March 30. 1989: revised July 26. 1989; accepted August 9. 1989. From the Department of Psychiatry and Behavioral Sciences and the Departmenl of Oncology, Johns Hopkins University School of Medicine: and the Emergency Health Services Department. University of Maryland. Baltimore. Address reprints requests to Dr. Rabins, Meyer 279. Johns Hopkins Hospital. 600 N. Wolfe Street, Baltimore.

MD21205.

Thirty-two caregivers of persons with Alzheimer's disease and 30 caregivers of persons VOLUME 31' NUMBER 3· SUMMER 1990

Copyrighl © 1990 The Academy of Psychosomatic Medicine.

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Caring for the Chronically III

giver. The cancer patients suffered from lung, breast, rectal, kidney, or colon cancer and had been diagnosed as having at least one recurrence or metastasis. These inclusion criteria thus identified two groups of caregivers who provided support to chronically ill individuals with shortened life expectancies. All caregivers gave informed consent. Each caregiver was administered the 28item General Health Questionnaire (GHQ)II and the Derogatis Affect Balance Scale (ABS).12 The 28-item GHQ is a screening exam for emotional disorder, developed to identify psychiatric disorder in persons attending medical clinics. This questionnaire has subscales measuring somatic complaints, anxiety, social isolation, and depression. A score of 5 or greater indicates psychiatric disorder. The ABS is a 40-item questionnaire with a subscale that measures positive emotional experiences (ABS-POS). This subscale was chosen to address the hypothesis that some or many caregivers experience positive aspects of their caregiving role and that these differ from a mere absence of emotional distress, that is, that the absence of demoralization (low GHQ score) and the presence of a positive emotional state (high ABS score) would have different predictive factors. The GHQ and ABS were the two outcome variables chosen a priori. All subjects also completed the Grief Experience Inventory (GEI),13 a 135-item questionnaire that specifically measures symptoms of grief. This instrument was chosen because it has an anger subscale and because it allowed for a testing of the hypothesis that "chronic grieving" would characterize the emotional state of dementia caregivers. Family cohesiveness was measured with the Family Adaptability and Cohesion Evaluation Scale (FACES 11).14 This variable was chosen to test the hypothesis that family cohesiveness would correlate with the absence of emotional disorder. In addition, all subjects completed the Costa Neuroticism-Extraversion-Openness (NEO) Questionnaire, IS a 180-item personality inventory which conceptualizes personality along five dimensions. Only the dimensions of neuroticism, extraversion, and openness were used. This measure allowed a study and amplification of the 332

conclusion that caregiver variables are the major determinants of outcome in caregivers,9 and it allowed us to test our hypothesis that personality variables (i.e., life-long behavioral patterns) would be correlates of the emotional state of caregivers. Longitudinal studies by Costa and co-workers have demonstrated the six-month retest reliability of this questionnaire (for neuroticism r=.87; for extraversion r=.91; for openness r=.86), supporting their conclusion that it measures stable personality characteristics. IS The validity ofthe NEO is supported by findings of high correlations with the Eysenck Personality Inventory on its neuroticism (r=.75) and extraversion (r=.69) scales. 16 Subjects were interviewed in their homes. Demographic data were collected, and a semistructured interview was administered which assessed the individual's subjective experience of caregiving. (These subjective data will not be presented in the current article.) Dementia patients were rated by their caregiver on the Blessed Dementia Rating Scale (BDRS),17 a validated measure of the severity of Alzheimer's disease. RESULTS The dementia and cancer caregivers were similar in age (63.6±15.5 vs. 57.8±1l.l, (=1.79, NS), sex (66% men vs. 73% men, X2=.43, NS), race (78% white vs. 93% white, X2=2.9, NS) and spouse/ non-spouse ratio (93% spouses vs. 78% spouses, X2=1.16, NS). Table I presents raw score data on the GHQ, ABS, and GEl in the two groups. Total GHQ score and ABS-POS scores were similar in the two groups, demonstrating that they did not differ on these a priori selected variables. However, as can be seen in Table 2, there was a trend toward more depression among dementia caregivers; the Bonferroni correction for multiple comparisons requires a p value of .002 to correct for the number of post hoc comparisons. Since the probability that depression was higher in the dementia caregivers was at the .06 probability level, this may be a chance finding. Table 2 thus demonstrates that differences between the two groups in emotional disorder, positive mood, or grief were minimal. PSYCHOSOMATICS

Rabins et al.

Overall. 39% of caregivers scored in the "case" range on the GHQ. while 35% scored at or above the 50th percentile on the ABS-POS. Among dementia caregivers. the symptom severity in patients (BDRS) correlated with GHQ scores ofthe dementia caregivers (Pearson r=.36. p=.04). but not with the ABS positive scores. When the sample was divided by sex. this correlation was significant in the women (r=.35. p=.O I). but not the men. There was no measure of severity of illness in cancer patients. Within the dementia caregiver group. GHQ total scores were higher in nonspOuses than

spouses (Mann-Whitney U Test. two-tailed. p

The emotional impact of caring for the chronically ill.

Thirty-two family caregivers of persons with Alzheimer's disease and 30 caregivers of persons with cancer were compared cross-sectionally to determine...
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