A Comparison of Caregivers for Elderly Stroke and Dementia Victims Brian M. Draper, FRANZCP,*t$ Christopher 1. Poulos, FACRM,t$ Andrew M. D. Cole, FACRM,t$ Roslyn G. Poulos, MPH,$ arid Frederick Ehrlich, PhD,t$ Objective: To compare elderly co-resident caregivers of bidity in both caregiver groups. Behavior and mood disturbstroke and dementia patients on measures of burden and ance in the patient was significantly correlated with burden (dementia caregivers r = 0.66; stroke caregivers r = 0.49, P < psychological morbidity. 0.000 1) and psychological morbidity (dementia caregivers Design: Cohort study. r = 0.44, P < 0.01; stroke caregivers r = 0.30, P < 0.05). Setting: Caregiversinterviewed at home. Subjects: Convenience sample, 99 co-resident caregivers of Caregiver's dissatisfaction with participation in life activities dementia and stroke patients registered with a community was correlated with burden (dementia caregivers r = 0.58; rehabilitation and geriatric service and who were 60 years or stroke caregivers r = 0.63, P < 0.0001) and psychological morbidity (dementia caregivers r = 0.67, stroke caregivers over. Main Outcome Measures: Caregiver burden as measured by r = 0.56, P, 0.0001). self-administered questionnaire and subsequent interview, Conclusion: Elderly co-resident caregivers for stroke and using the Relatives Stress Scale (RSS) and psychological dementia patients experience similar degrees of burden and morbidity as measured on the General Health Questionnaire high levels of psychological morbidity. Psychiatric aspects of chronic disability, rather than physical aspects, were found (GHQ). Results: Forty-six percent of caregivers had significant psy- to be more stressful to caregivers. All assessments of the chological morbidity (GHQ >4). Mean RSS score was 12.2 disabled elderly should include measures of caregiver burden (SD 5.4).No significant differences were found between and psychological distress. J Am Geriatr SOC40896-901, stroke and dementia caregivers on these measures. Caregiver 1992 burden was significantly correlated with psychological mor-

troke and dementia are two of the major causes among caregivers of cognitively impaired, functionally of chronic disability in the elderly. The home impaired, and non-impaired elderly. Thus the extent management of these disorders often relies upon to which the nature of the elderly person's disability the receipt of family caregivers who frequently are determines caregiver burden and psychological distress themselves elderly.', These caregivers have been is unclear. The major aim of this study was to compare elderly shown to experience a considerable burden in providing day-to-day care.3p Emotional disorders with co-resident caregivers of stroke and dementia sufferers symptoms of anxiety, depression and fatigue are com- to determine whether caring for those with predomim~n.~-'O These adverse effects of caregiving are often nantly mental disability (dementia) is more stressful to associated with the breakdown of community care, caregivers than caring for those with predominantly "social" hospital admissions, and entry into long-term physical disability (stroke). As the focus of this study was upon the elderly, only caregivers over the age of institutional care.11-13 While it is commonly accepted that caring for an 60 years were included. The hypothesis was that both elderly person with a mental impairment is more stress- groups of caregivers would experience similar degrees ful than caring for someone with a physical di~ability,'~ of burden and high levels of psychological morbidity. few studies have specifically addressed this issue. SUBJECTS AND METHODS Gilleard5 studied the relatives of patients attending geriatric and psychogeriatric day care and found that The St George Community Rehabilitation and Gerthose caring for psychogeriatric patients were signifi- iatric Service (C.R.A.G.S.) provides community-based cantly more distressed, though both groups had high assessment and management of the elderly with physlevels of psychological distress. However Cattanach ical and mental disabilities in the St George district of and Tebes15 recently examined the impact upon the the Southern Sydney Area Health Service. This urban health and psychosocial functioning of daughter and catchment area has a population of about 200,000, of daughter-in-law caregivers and found no differences which about 15.5% (31,000) are aged 65 years and over. Referrals to the service come from the local community via family, friends, social workers, medical From the Schools of 'Psychiatry and tcommunity Medicine, University of practitioners, and community nurses and from the New South Wales, and SSt George Hospital, Sydney, NSW, Australia. This research was undertaken by the St George Hospital Community Rehabd- hospital upon discharge of patients who require comitation and Geriatric Service and was funded by the Australian Rotary Health munity follow-up. Research Fund. Dr. Draper is currently Assistant Director, Academic Dept. of

S

Psychogeriatrics, Prince Henry Hospital, Little Bay, Sydney, NSW Australia. This study was presented at the Annual National Conference of the Australian Association of Gerontology on 25 October 1991, Sydney, Australia. Dr. Cole is currently consultant in Aged Care, Changhua Christian Hospital, Changhua 50022, Taiwan R.O.C.

JAGS 40:896-901,1992 0 1992 by the American Geriatrics Society

Subjects Caregivers of all dementia and stroke patients referred to C.R.A.G.S. between January 1988 and Octo-

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ber 1990 were eligible for inclusion in the study if they met the following selection criteria: the caregiver was (1) co-resident (2) English speaking (3) 60 or more years of age (4) in the caregiving role for a patient 60 years of age or older for at least 6 months. Patients were selected by review of their medical records by the research medical officer. All dementia patients had been referred for assessment of problems relating to dementia. The clinical diagnosis of dementia had been made by the authors (psychogeriatrician or community physician) independently of this study. The diagnostic protocol used in each case included a 6-month history of impairment, mental state examination including a 40-item cognitive screening test, physical examination, and relevant “dementia screen” investigations. All case notes were later reviewed during the study by the psychogeriatrician and rated on the Clinical Dementia Rating Scale (CDR) with mild dementia scoring 1, moderate dementia 2, and severe dementia 3.16All cases scored between mild and severe with a mean CDR score of 1.6. All stroke patients had been referred for assessment of physical disability due to a cerebrovascular accident. In all cases physical signs of stroke remained, eg, hemiparesis or gait disturbance. Although it was not possible to confirm the protocol used by physicians in their original diagnosis of the stroke, the history of stroke was confirmed by the research medical officer through review of hospital records, information from the patient’s primary care physician and the C.R.A.G.S. paramedical case manager, and observation of the patient. Subjects with a history of both stroke, with resultant physical disability, and dementia were excluded to ensure that as far as possible, the samples were discrete. Cases of multi-infarct dementia without co-existing physical disability were included among the dementia cases. Cases where no caregiver could be identified in the co-resident relationship (eg, the stroke patient performs a caregiving role for a frail spouse) were excluded.

Questionnaires The following questionnaires were used in this study: General Health Questionnaire (GHQ) The 30item version of this valid and reliable self-administered questionnaire was used to measure caregiver psychological morbidity.”, Individual items relate to symptoms of anxiety, stress, and depression and are rated on a 4-point scale with total scores ranging from 0-30. Two forms of scoring were used: the conventional method (GHQ)” where scores of 5 or more are indicative of significant psychological distress, and the revised method (CGHQ),” developed for chronic conditions where scores of 13 or more are indicative of significant psychological distress. Relatives Stress Scale (RSS) This is a 15-item selfadministered questionnaire used to measure caregiver burden.” Items relate to the impact of the caregiving role on the dimensions of domestic upset: eg, How much has the household routine been upset; negative feelings toward the patient: eg, Do you ever get cross

’*

CAREGIVERS FOR STROKE AND DEMENTIA

897

and angry with your (spouse); and personal distress in relation to the patient: eg, Do you ever get depressed by the situation.” The revised 3-point scale used by Eagles et al” was adopted. Scores range from 0-30 with higher scores indicative of higher levels of burden. Behavior and Mood Disturbance Questionnaire (BMDQ) A 34-item interviewer-administered questionnaire, it is used to measure the caregiver’s perception of mental disturbance in the patient.” The items measure the dimensions of apathetic/withdrawn behavior: eg, sits around doing nothing; active/disturbed behavior: eg, appears restless and agitated; and mood disturbance: eg, appears unhappy and depressed.” It was revised from a 5-point scale to a 3-point scale (never, sometimes, a great deal of the time) for easier presentation. Scores range from 0-68 with higher scores indicative of greater psychiatric disturbance. Barthel Index for Physical Disability (BI) The BI is a widely used 10-item activities of daily living scale which rates the functional ability of the patient.22Caregivers were asked to rate the patient on each activity based on the amount of assistance required. Scores range from 0-100, (0-20 totally dependent; 21-61 severely dependent; 62-90 moderately dependent; 91-99 slightly dependent; 100 independent). Quality of Life Questionnaire (QLQ) This is a 10item questionnaire adapted from Wells and JormZ3that assesses the caregiver’s participation in social and recreational pursuits in the last few weeks. The caregivers were asked for a “yes“or “no“response to the following items: had friends or relatives over for a visit; visited friends or relatives in their homes; chatted to someone on the phone; gone on an outing, eg, club, cinema, trip, restaurant; gone to church or a meeting; gone shopping; read a book or magazine for enjoyment; worked at some hobby, eg, gardening, knitting; had time to yourself; worked, either voluntary or paid. Scores range from 0-10 with higher scores indicating greater participation. Life Satisfaction Questionnaire (LSQ) This questionnaire was devised for this study to measure the caregivers’ satisfaction with their level of participation in the social and recreational pursuits covered in the QLQ. Caregivers were asked whether they were “satisfied” or “dissatisfied”with their participation in each of the items of the QLQ. Scores range from 0-10 with higher scores indicating greater satisfaction. Caregiver Health Scale A 4-point scale (poor, fair, good, excellent) in which caregivers were asked to rate their own health. Self-rated health has been shown to correlate well with health outcomes.24

Design Caregivers were initially contacted by telephone and invited to participate. Written informed consent was obtained. The GHQ and the RSS were posted to the caregivers’ homes and were completed by the caregiver prior to a visit by the research medical officer within a week. At this visit the following information was also obtained by semi-structured interview: demographic data; length of co-residency; length of caregiving; qual-

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ity of relationship between caregiver and patient since onset of the illness; frequency of doctor visits by caregiver; caregiver’s use of psychotropic medications; community services utilized, and social support. Then, five further questionnaires (BMDQ, BI, QLQ, LSQ, and Caregiver Health Scale) were administered. The Wilcoxon Rank sum test and analysis of variance were used to compare groups, and the chi-square test was used to compare proportions. Spearman’s nonparametric test was used for correlations. The S.P.I.D.A. Statistical Package was ernpl~yed.’~

RESULTS One hundred and nine caregivers were eligible, with 99 agreeing to participate. Three stroke caregivers declined, stating that they were too busy in the role of caregiving. Three caregivers (two stroke, one dementia) were concerned that their involvement would upset the patient, and four caregivers (two stroke, two dementia) declined without reason. Patients’ demographic data, Behaviour and Mood Disturbance Questionnaire (BMDQ),and Barthel Index (BI) scores are presented in Table 1. No significant difference existed between the stroke and dementia patient groups for gender. Dementia patients were significantly older than stroke patients (mean age 78 and 75 years respectively; t = 2.62, P = 0.01). Scores on the BMDQ showed significant differences between the dementia and stroke patients (z = 7.1, P < 0.0001) with the dementia patients showing more psychiatric disturbance. Scores on the BI also showed significant differences (z = 4.9, P < 0.0001) with stroke patients showing a greater degree of physical disability. The caregivers’ demographic data are presented in Table 2. The only significant differences found between the caregiver groups were in age (dementia caregivers’ mean age 76 years, stroke caregivers’ mean age 72 years; t = 3.26, P == 0.002) and the length of continuous co-residency (dementia caregivers’ mean co-residency 49 years and stroke, 43 years; t = 2.46, P = 0.016). Caregivers’ health data are presented in Table 3. There were no significant differences between stroke and dementia caregivers on the Caregiver Health Scale, doctor visits, and use of psychotropic medication. TABLE 1.

Sex Male (%) Female (%) Mean Age (yrs) [SD] Range ( Y E ) BMDQ* Median Range BI** Median Ranee

PATIENT DATA Stroke Dementia (n = 48) (n = 51) 22 (46) 26 (54) 74.6 [7.9] 61-95

20 (39) 31 (61) 78.2 [5.7] 68-92

8

0-29

24 7-41

80 15-100

95 10-100

Gehavio; and Mood Disturbance Questionnaire. ** Barthel Index.

TABLE 2.

CAREGIVER DEMOGRAPHIC DATA Stroke Dementia (n = 48) (n = 51) ~~~

Sex Male (%) Female (%) Mean Age (yrs) [SD] Range (Yrs) Relationship Spouse (%) Sibling (%) Child (%) Friend (%) Mean Length of Co-residency (yrs) [SD] Median Length of caregiving (months) Range (months)

TABLE 3.

2 or more (%) Use of psychotropic medication (%I

27 (53) 24 (47) 76 [6.6] 61-92

43 (90) 1 (2) 2 (4) 2 (4) 43 [12.3]

46 (90) 1(2) 3 (6) 1 (2) 49 [13.0]

27

24

7-372

6-120

CAREGIVER HEALTH Stroke Dementia (n = 48) (n = 51)

Caregiver Health Scale Poor (%) Fair (%) Good (%) Excellent (%) No. of Doctor visits in the past few weeks 0 (%) 1 (%I

24 (50) 24 (50) 72 [6.2] 61-87

5 (10) 21 (44) 20 (42) 2 (4)

7 (14) 16 (31) 22 (43) 6 (12)

15 (31) 29 (61) 4 (8) 13 (27)

15 (29) 29 (57) 7 (14) 16 (31)

TABLE 4. QUALITY OF LIFE (QLQ) AND LIFE SATISFACTION (LSQ) QUESTIONNAIRES Stroke Dementia (n = 51) (n = 48) ~~

QLQ Mean [SD] LSQ Median

LSQ Range

6 [1.8] 8 0-10

~

6 [1.8] 9 2-10

In Table 4, caregivers’ quality of life (QLQ) and life satisfaction (LSQ)are shown. No significant differences existed between the caregiver groups. In Table 5, the quality of relationship with the patient, social support, and use of community services is shown. The proportion of dementia caregivers who were satisfied with the assistance received from family and friends was significantly less than with the stroke caregivers (chisquare 17.3, P < 0.0001). No significant differences existed between the stroke and dementia caregiver groups in terms of alterations in the quality of the relationship with the patient and use of community services. When asked “Are you currently satisfied with your life?“, 80% of caregivers reported in the a f f m a tive with no difference between the caregiver groups. Table 6 presents the RSS, GHQ, and CGHQ scores. No significant differences existed for RSS, GHQ, or

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CGHQ scores between the stroke and dementia caregiver groups. Table 7 provides correlations between selected variables and GHQ, CGHQ, and RSS for the stroke and dementia caregivers. Strong positive correlations exist between RSS and the GHQ and CGHQ for each disTABLE 5. SOCIAL SUPPORT, COMMUNITY SERVICES AND QUALITY OF RELATIONSHIP Stroke Dementia (n = 51) (n = 48) Receives help from family/ friends (%) Satisfied (%) Community services used (home care, day care, home nursing, delivered meals) 0 services (%) 1 service (%) 2 services (%) 3 services (%) Quality of relationship since illness Better (%) Worse (%) Unchanged (%)

39 (81)

37 (73)

41 (85)

33 (65)

20 (42) 20 (42) 6 (12) 2 (4)

11 (23) 11(23) 26 (54)

6 (12) 19 (37) 26 (51)

order. The GHQ scores and the CGHQ scores were strongly correlated. In both caregiver groups, strong negative correlations exist between the LSQ and the RSS, GHQ, and CGHQ, which indicates that dissatisfaction with participation in life activities is associated with caregiver burden and psychological morbidity. A few differences were found between the caregiver groups. The positive correlation between BMDQ and measures of burden and psychological morbidity was TABLE 6. RELATIVES STRESS SCALE (RSS) AND GENERAL HEALTH QUESTIONNAIRE (GHO. CGHO) SCORES All Stroke Dementia (n = 48) (n = 51) ( n = 99) RSS Mean [SD] GHQ Mean [SD] Median Range GHQ > 4 (%) CGHQ Mean [SD] Median Range CGHQ > 12 (%)

11.3 [5.2]

13.0 [5.5]

12.2 [5.4]

5.8 [6.0] 5.0 0-30 25 (52)

5.9 [6.1] 4.0 0-26 21 (41)

5.9 [6.0] 4.0 0-30 46 (46)

11.1[6.0] 10.5 0-30 19 f40)

11.9 [5.7] 12.0 1-28 20 (39)

11.5 [5.8] 12.0 0-30 39 (39)

TABLE 7. CORRELATION CO-EFFICIENTS ## Relatives Stress Scale Caregiver Age Stroke Dementia Caregiver Health Stroke Dementia Length of care Stroke Dementia Behavior & Mood Disturbance Questionnaire Stroke Dementia Barthel Index Stroke Dementia Quality of Life Questionnaire Stroke Dementia Life Satisfaction Questionnaire Stroke Dementia Relatives Stress Scale Stroke Dementia General Health Questionnaire Stroke Dementia * P < 0.05. ** P < 0.01. *** P = 0.001. # P < 0.0001. ## Spearman’s non-parametric correlation co-efficient.

899

General Health Questionnaire

Chronic General Health Questionnaire

-0.17 -0.33*

0.08 -0.03

-0.07 -0.08

-0.23 -0.43**

-0.12 -0.16

-0.11 -0.34*

0.04 0.15

-0.11 -0.06

0.05 0.03

0.49# 0.66#

0.30* 0.44**

0.37* 0.53#

-0.21 -0.32*

-0.27 -0.14

-0.28 -0.09

-0.09 -0.33*

-0.17 -0.43**

-0.12 -0.45***

-0.63# -0.58#

-0.56# -0.67#

-0.61# -0.59#

0.56# 0.65#

0.68# 0.73# 0.85# 0.84#

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stronger in the dementia caregivers than in the stroke caregivers. In the dementia caregivers only, the QLQ had small negative correlations with measures of burden and psychological morbidity, while the Caregiver Health Scale was negatively correlated with the CGHQ and the RSS.

DISCUSSION To our knowledge, this study is the first reported comparison of stroke and dementia caregivers. A number of significant findings have emerged. Both groups of caregivers were found to be experiencing similar degrees of burden as measured by the RSS. Burden is a multi-dimensional concept that has been defined in a number of ways by different researcher~.'~, 26 Distinction has been made between objective burden, eg, behavioral problems, supervisory requirements, social life disruption, financial strain; and subjective burden which refers to the caregivers' perception of the emotional impact of the caregiving r01e.l~.26 The subjective perception of burden has been found to have a crucial role in determining the impact that caregiving has upon the lives of caregiversz6The RSS was chosen to measure burden, covering the dimensions of personal distress experienced by caregivers in relation to the patient, life upset produced by caregiving, and negative feelings toward the patient.20 Therefore, the finding in this study that stroke and dementia caregivers were under similar degrees of burden suggests that these subjective dimensions were of similar import in the two cases. Both groups of caregivers were also found to be experiencing similar and high degrees of psychological morbidity as measured by the GHQ. Forty-six percent of all caregivers were identified by the GHQ as having significant psychological distress (ie, GHQ score greater than 4). In comparison, a survey of a random sample of elderly subjects in Britain found only 32% of subjects had this degree of distress." This supports the findings *' lo careand dementia4* of previous studies of givers which have also reported high levels of psychological morbidity. Eagles et a12' also used the RSS and GHQ in their community survey of dementia caregivers and controls. They found that the dementia caregivers had a significantly higher intensity of burden, but not psychological morbidity, than the controls. When compared with the dementia caregivers of Eagles et a1," both groups of caregivers in our study reported a greater intensity of burden and psychological morbidity. Even though the dementia caregivers in our study showed high levels of psychological morbidity, they were less distressed than those reported in other health-service-based studies.5t23*27 In these studies, data collection occurred at the time of initial assessment, when caregivers may be expected to have been more distressed. The caregivers in our study were interviewed well after the assessment process. In contrast, higher levels of psychological morbidity were found in our stroke careeivers than those reported by Wade et a1.6In their 2-yeG longitudinal stud;, only 11%-13% of all caregivers had significant levels of

psychological morbidity at 6 or more months after the stroke. However, by this time, around 50% of their patients had no impairment on the Barthel Index. While it could be postulated that a greater degree of physical dependency in the patient may contribute to higher intensity of burden and psychological morbidity in the caregiver, we found little evidence of this. These findings are supported by Wade et a1,6 although others have found that depression in the caregiver was related to stroke severity.8 Our finding of similar degrees of burden and psychological morbidity in caregivers of two distinct diagnostic groups is supported by other studies. Dementia caregivers have been compared with caregivers of housebound cardiac patients on measures of depression (Gallagher et al, cited in Ref. 28), with caregivers of elderly depressives on measures of burden,29 and with cancer caregivers on measures of psychological distress3' without significant differences being found. Furthermore, no differences were found in spouse caregivers of Alzheimer's and Parkinson's dementia patients on measures of distress.31These findings suggest that in the care of chronic disability, the nature of the patient's diagnosis is not a significant factor in determining the impact upon the caregiver. However, when using the BMDQ to measure the patient's behavioral problems (eg, apathy, agitation, wandering) and mood disturbance (eg, depression, anxiety), significant correlations with burden and psychological morbidity emerge in both groups of caregivers, though they are much stronger in the dementia group. Our findings suggest that the psychiatric aspects of chronic disability are stressful to elderly caregivers. Other studies have reported similar findings, with behavioral problems being associated with burden or depression in stroke6' and dementia caregivers.', lo,32 No significant differences were found between caregiver groups in their participation in life activities such as family visits, hobbies, and social outings as measured on the QLQ. However, with the dementia caregivers there was a significant correlation with the RSS and the GHQ. This suggests that social life disruption may be more stressful to dementia caregivers than stroke caregivers. Our finding that the dementia caregivers had a tendency to receive less help from family and friends and were significantly less satisfied with the help they received may contribute to this. This is supported by Birkel and Jones33who found that the demented elderly receive less caregiving assistance from outside the household than the lucid elderly. Therefore, while our overall findings suggest that subjective burden and psychological morbidity in caregivers are independent of the patient's diagnosis, some significant differences were found on the social impact of caregiving. Two methods of scoring the GHQ were employed in this study. The conventional method has been criticized due to its failure to detect chronic neurotic illnesses.34 A revised scoring method (CGHQ) takes account of the chronicity of psychological symptom^,'^ an issue particularly relevant in assessing the effects of longterm caregiving. An incidental finding of our study was that GHO - and CGHQ- scores are highly correlated, -

A comparison of caregivers for elderly stroke and dementia victims.

To compare elderly co-resident caregivers of stroke and dementia patients on measures of burden and psychological morbidity...
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