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Burden of care among caregivers of patients with Parkinson disease: A cross-sectional study
Clinical Neurology and Neurosurgery 113 (2011) 639–643
Contents lists available at ScienceDirect
Clinical Neurology and Neurosurgery journal homepage: www.elsevier.com/locate/clineuro
Burden of care among caregivers of patients with Parkinson disease: A cross-sectional study Rosdinom Razali ∗ , Fazli Ahmad, Fairuz Nazri Abd Rahman, Marhani Midin, Hatta Sidi Department of Psychiatry, Universiti Kebangsaan Malaysia Medical Centre (UKMMC), Jalan Yaakob Latif, Bandar Tun Razak, Cheras 56000, Kuala Lumpur, Malaysia
a r t i c l e
i n f o
Article history: Received 18 May 2010 Received in revised form 19 November 2010 Accepted 14 May 2011
Keywords: Burden of care Caregivers Parkinson disease Caregiver’s Burden Scale (CBS)
a b s t r a c t Objective: Parkinson disease (PD) affects the lives of both the individuals and their family members. This study aims at investigating for clinical as well as socio-demographic factors associated with the perception of burden among the caregivers of individuals with PD in Malaysia. Methods: This is a descriptive, cross-sectional study on PD patients and their caregivers who attended the neurology clinics of 2 tertiary hospitals in Kuala Lumpur. Socio-demographic and clinical data of the patients were obtained, including caregivers’ perception of burden using the Caregiver’s Burden Scale (CBS). Results: The patients’ mean age was 62.12 ± 9.69 years, almost half of them were in stage 2 of their illness, had developed PD at the age of 50–69 and had duration of illness of less than 5 years. The caregivers were mostly females and a third of them were wives. Factors which were significantly associated with increased caregiver burden were patients’ advancing age, later stage of illness and those having longer duration of caring. Caregivers’ perceived burden was related to their race gender, social status, kinship with patient or duration of care-giving. Conclusion: Burden of care is significantly more in PD patients of advanced age and stage of illness. © 2011 Elsevier B.V. All rights reserved.
1. Introduction Parkinson disease (PD) is the second most prevalent neurodegenerative disorder after Alzheimer disease. It is a progressive and fluctuating neurological condition that is characterized by bradykinesia, rigidity, tremors of the limbs at rest and abnormality of posture. It occurs as a sporadic or familial disorder, inflicting about 1% of the population over 65 years [1]. The prevalence and incidence of PD will increase as the population ages [2]. PD affects 4 million individuals world-wide and the frequency is expected to increase 4 fold by 2040 due to ageing population. Unfortunately, despite this escalation in figures, its treatment has been a challenge and curative therapy is yet to be discovered. It has been documented that caregivers of individuals with chronic illness experience burden [3,4]. Burden is defined as the extent to which the caregivers perceive their health, social life and financial status are suffering because of their caregiving experience [5]. Most of the caring is provided by informal caregivers without any formal training in care-giving. Their endless physical and emotional support plays an important role in preventing early nursing home placement [6]. Chronic illnesses such as PD not
only affect individuals but also their family members on a daily basis, often resulting in changes in their lifestyle patterns [7]. Caregiving spouses often face difficulty with the increasing caregiving demands despite their own aging processes and physical decline, which may add to the caregiving burden that they already experienced [8,9]. Previous studies have demonstrated that certain factors are associated with higher levels of caregiver burden. Among these are caregiver’s age, race, income, relationship of the caregiver to the care recipient, co-residence with the care recipient, disease characteristics of the care recipient; and care needs of the care recipient [10]. Studies have shown that younger caregiver experience greater burden than older caregivers and that gender shows an inconsistent relationship to burden [11]. A few studies have also shown that caregivers who assist care-recipients with activities of daily living and/or care persons with behavioural problems exhibit greater burden than caregivers who assist with other care needs [12,13]. Prevalence of PD in Malaysia is unknown but is believed to be increasing as the country ages. Despite this, there is no local studies on the burden of care in PD. Thus this study intends to investigate for factors associated with increased feeling of burden among the Malaysian caregivers of patients with PD. 2. Materials and methods
∗ Corresponding author. Tel.: +60 3 91456142/3; fax: +60 3 91456681. E-mail addresses: [email protected], [email protected] (R. Razali). 0303-8467/$ – see front matter © 2011 Elsevier B.V. All rights reserved. doi:10.1016/j.clineuro.2011.05.008
This is a cross-sectional descriptive study, using interviewerrated, semi-structured self-administered questionnaires among PD
640
R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643
patients and their caregivers who attended the neurology clinics of Hospital Kuala Lumpur (HKL) and Universiti Kebangsaan Malaysia Medical Centre (UKMMC) over a period of 3 months in 2002. HKL is a government hospital and UKMMC is a semi-government (university) hospital which caters for the general population of Kuala Lumpur and its surrounding areas. Both are tertiary referral centers which also accept patients from other states in Malaysia. Important demographic data together with clinically relevant information were gathered through face-to-face interview with the patients and their relatives. Diagnosis and staging of PD were done by the neurologists based on the Hoehn and Yahr Scale which was the standard assessment tool at that time. This scale grouped patients into: stage I: unilateral disease; stage II: bilateral mild disease; stage III: bilateral disease with early impairment of postural stability; stage IV: severe diseases requiring assistance; stage V: confinement to bed or wheel chair, unless aided. In this study, stage I and II were considered as the early stage while stage III, IV or V as the late stage of illness. The Caregiver’s Burden Scale (CBS) [5] was used to assess burden of care among the caregivers. It is a 29-item scale designed to measure feelings of burden experienced by caregivers of elderly persons with senile dementia. It has been previously used to assess burden in PD caregivers [14]. The items for the CBS were selected based on clinical experience and prior research, and covered areas most frequently mentioned by caregivers as problems. The CBS provides opportunity for a systematic assessment of caregivers’ perceptions of burden. The CBS is scored on a 5-point sliding scale with the scores on the items summed up as the total scores. In this study a caregiver is defined as the patient’s spouse, children or children-in-law, someone with kinship with the patient, who lived with and took care of patient almost everyday (excluding domestic helpers or paid sitters). 2.1. Study samples All patients fulfilling the inclusion and exclusion criteria were selected by convenient sampling. The inclusion criteria were: (i) patients with a clinical diagnosis of PD diagnosed by neurologists; (ii) accompanied by their caregivers and voluntarily consented for the study. The exclusion criteria were: patients with (i) other neurodegenerative disorders (as diagnosed by neurologists); (ii) history of cerebral vascular accident or transient ischaemic attack; (iii) uncontrolled hypertension or diabetes mellitus; (iv) history of epilepsy or cerebral tumor; (v) history of syphilis or encephalitis; (vi) history of alcohol dependence; (vii) history of head injury with loss of consciousness; (viii) history of being on treatment with neuroleptic drugs; (ix) presence of any physical illness associated with chronic confusional state; (x) history of psychiatric illness; (xi) unable to understand English or the national language (Bahasa Malaysia); and (xii) patient who refused to give consent. Patients and their caregivers were interviewed separately in a room within the clinic to ensure confidentiality. Once consent was obtained, they were interviewed for the demographic data. The caregivers were then asked to complete the CBS. 2.2. Data analysis The collected data was analysed using the SPSS (Statistical Package for Social Science version 10.01) computer programme. The relationships between the various study parameters were analysed using correlation, one-way ANOVA and independent t tests. Ninetyfive percent confidence interval was chosen as the significant level (p = 0.05) during the statistical analysis.
Table 1 Sociodemographic characteristics of PD patients.
Age Less than 50 50–59 60–69 70 and above Gender Male Female Race Malay Chinese Indian Marital status Single Married Divorced Widowed Education No education Primary Secondary Tertiary Age at onset of PD Less than 40 40–49 50–59 60–69 70 and above Duration of PD 5 years and less 6–10 years More than 10 years
Frequency, n1
Percentage (%)
13 31 40 31
11.3 27.0 34.7 27.0
65 50
56.5 43.5
61 43 11
53.0 37.4 9.6
6 90 1 18
5.1 78.3 0.9 15.7
13 46 42 14
11.3 40.0 36.5 12.2
4 29 37 36 9
3.5 25.2 32.2 31.3 7.8
57 41 17
49.6 35.6 14.8
2.3. Ethical considerations This study had been approved by the Ethics Committee, Directors and Heads of Department of Neurology of both hospitals. Both written and verbal information about the aims of the study were explained to the patients and their caregivers before written consent obtained from both parties. 3. Results A total of 186 PD patients were approached for this study but only 115 were eligible to participate. Twenty-eight of the patients came alone without caregivers, 18 came with non-caregivers while another 25 refused to participate in this study because of fatigue or lack of time. All of the 28 patients who came alone were patients with early stage PD (stages 1 and 2). Two thirds of patients who refused to participate were in the advance stage of illness (stages 3 and 4). Seven of the 18 patients who came with the non-caregivers came from residential homes. They were accompanied by staffs who were not involved in caring for them at the nursing homes. The remaining 11 patients came with family members who live separately from patients. Out of the 115 patients, 88 were from the neurology clinic in Hospital Kuala Lumpur while the remaining 27 were from UKMMC. The sociodemographic data of patients and their caregivers are displayed in Tables 1 and 2. The duration of caregiving and the number of other care-recipients are presented in Tables 3 and 4. About half of the caregivers (47.8%) had been caring for PD patients for a duration of between 2 and 5 years. There was a positive correlation between the CBS score and the care-giving duration. The correlation was not strong but it was statistically significant (r = 0.0246, p = 0.008). This implies that the caregiver felt more burden with longer time spent caring for these patients.
R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643 Table 2 Sociodemographic characteristics of the caregivers. Frequency, n2 Age Less than 50 50–59 60–69 70 and above Gender Male Female Race Malay Chinese Indian Others Marital status Single Married Divorced Widowed Education No education Primary Secondary Tertiary Relationship with the patient Wife Husband Daughter Son Sister Mother Monthly income (MYR) 1000.00 and below 1001.00–3000.00 3001.00–5000.00 >5000.00
Table 5 Relationship between caregivers’ race and CBS scores. Percentage (%)
68 23 19 5
59.2 20.0 16.5 4.3
43 72
37.4 62.6
59 43 11 2
51.3 37.4 9.6 1.7
26 88 1 0
22.6 76.5 0.9 0
4 18 66 27
3.5 15.7 57.3 23.5
36 15 27 29 5 3
31.3 13.0 23.5 25.3 4.3 2.6
58 45 11 1
50.4 39.1 9.6 0.9
Table 3 Duration of caregiving distribution. Duration of caregiving 1 year or less 2–5 years 6–10 years >10 years Total
Frequency, n2 7 55 40 13
Percentage (%) 6.1 47.8 34.8 11.3
115
100
There was a significant relationship between CBS score and the number of other people the caregiver had to take care of besides the patient. More than 2/3 (70.4%) were also caring for other ill individuals at the same time. The CBS score was negatively correlated to the number of other care-recipients. Even though the correlation was not strong, it was found to be statistically significant (r = −0.217, p = 0.02). The relationships between race and marital status of caregivers and CBS scores are as presented in Tables 5 and 6. When CBS score was analysed against the different race groups of the caregivers, the result showed that there was significant difference in the mean CBS scores between the races. The Malay caregivers reported the
Table 4 Number of other care-recipients distribution. No. of other care-recipients 0 1–5 >5 Total
Frequency, n2 34 73 8 115
641
Race
Mean CBS scores
Test
p
Malay Chinese Indian Others
14.92 + 11.93 21.74 + 11.10 20.36 + 9.94 21.00 + 11.31
ANOVA F = 3.163
0.027
lowest feeling of burden as compared to others and the Chinese caregivers reported the highest feeling of burden. Marital status of the caregivers was noted to have significant relationship with the CBS score. A caregiver who was a divorcee in this sample reported higher feeling of burden when compared to the caregivers who were single or married. The married caregivers reported lower feeling of burden when compared to the single caregivers. Type of caregivers’ relationship with the PD patients in this sample was not found to be related to the perception of burden. Even though daughters reported the highest CBS score while the sisters reported the least, the difference of CBS score between the different groups was found to be not significant. Even though there was a positive correlation between the caregivers’ monthly income and feeling of burden, the correlation was weak and not significant statistically (r = 0.097, p = 0.301). There was also a positive correlation between the CBS score and the care-giving duration. The correlation was not strong but it was statistically significant (r = 0.0246, p = 0.008). This implies that the caregiver felt more burden with longer time spent caring for these patients. There was a significant relationship between CBS score and patient’s stage of PD. The CBS score was positively correlated to the stage of the illness (r = 0.367, p < 0.005). This means that increased severity of the patients’ illness in the late stage was associated with increased feeling of burden in the caregivers. The age of PD subjects was also noted to have significant relationship with the feeling of burden in the caregivers. The CBS score was positively correlated to the age of the PD patient (r = 0.206, p = 0.027). The feeling of burden in the caregivers increased with older PD patients. Even though there was a positive correlation between the caregivers’ monthly income and feeling of burden, the correlation was weak and not significant statistically (r = 0.097, p = 0.301). There was no significant relationship between the age at onset of PD and the feeling of burden in the caregivers (r = 0.079, p = 0.404). Gender of PD patients and their caregivers also did not seem to show significant correlation with the CBS scores (t test = 0.513, p = 0.609 for patient; t test = 1.267, p = 0.208 for caregivers). 4. Discussion Majority of the PD patients were over 60 years old, consistent with several epidemiological studies which showed the prevalence and incidence rates increasing steadily with advancing age [14]. There was a slight preponderance of male patients in this sample as noted in other studies with ratios of male to female ranging from 1.36–1.54:100, a reflection of the population in this country where there is a slightly higher ratio of male than female in this Table 6 Relationship between caregivers’ marital status and CBS scores.
Percentage (%) 29.6 63.4 7.0 100
Marital status
Mean CBS scores
Test
p
Single Married Divorced
22.81 + 12.06 16.48 + 11.21 38.00 + 0.00
ANOVA F = 3.163
0.027
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R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643
Table 7 Relationship between kinship with caregivers and CBS scores. Caregiver
Mean CBS scores
Daughter Mother Son Wife Husband Sister
22.19 19.00 17.79 17.67 14.20 12.00
± ± ± ± ± ±
12.23 16.09 11.53 12.25 9.99 5.57
Test
p
ANOVA F = 1.282
0.277
country (male:female = 104:100). There were more Malay patients in this study, probably because most of them comprised of retired civil servants who enjoyed free treatment in government hospitals, whereas the Chinese and Indians having worked in the private sectors, preferred private hospital treatment. A majority of the patients were in stage 2 of illness. None were in the stage 5 where patients would be confined to bed and difficult to be brought to hospital. Stage 1 is a mild form of the disease and most patients tended to seek treatment only when their condition worsened. This might be explained for the small number of patients in the early stage of their illness. Only 3% of the patients had early onset PD (age at onset < 40 years) with majority of them having the onset at age of 50–69 years. This finding is similar with Western studies where the prevalence and incidence rates of PD increase steadily with advancing age. For example, the agespecific incidence rates for PD in North American, European and Australian whites were low in those younger than 40 years of age and increased with age [15]. The number of other care recipients besides the patient was negatively correlated to the feeling of burden in this study. This means that the increase in the number of the people that the caregiver had to take care of was not associated with increase in the feeling of burden. Usually, it is expected that increase in the number of individuals that the caregiver has to take care of will increase the feeling of burden. Probably, the presence of other people in the house with whom the main caregiver shared the responsibility of caring helped reduce burden. This form of social support among family members or friends is a common practice among most Malaysian families. In this study, a more advanced PD was found to be associated with increase in feeling of burden. Similar findings were found in a study by Carter et al. [16] in which caregiver burden was experienced across all stages of PD and it accumulated significantly as the disease progressed. The mean number of care-giving tasks tripled by stage 4 and stage 5 and the negative changes in caregivers’ lifestyle plus decreases in predictability in caregivers’ lives also increased significantly in late stage disease. Depression in the caregiver was found to be significantly higher by stage 4 and stage 5. The Malay caregivers seem to report the least burden, probably due to their more tolerant attitude and better acceptance of this illness. Some of them even consider the expression of burden to others as being sinful. Traditionally, caring and nursing have almost always been associated with women and many women accept them as part of their social obligation towards the sick. In this study, two thirds (66%) of caregivers were female and most of them were patients’ own wives, with adequate educational background and had at least 2–5 years of caring experience. However, burden of care was not significantly related to the duration of care-giving, gender of the caregiver or kinship (Table 7). In a similar study on caregiver burden, age, gender and marital status of the caregiver did not show any significant correlation to burden, after adjustment of disease duration [6]. This could be due to the fact that caregivers were able to make adjustments to their lifestyle over time as the illness progressed and their sense of filial piety towards their own family member helped reduce burden of care.
On the contrary, a study has shown that confinement caused by looking after PD patients can disrupt the life of the entire family and result in adverse social consequences for the caregiver [17]. One of the factors that was not studied in this study was the PD patients’ perception of control over their symptoms and the caregivers’ subjective view of their caregiving activities as an act of filial piety or on the contrary, a form of social punishment [18]. When PD patients had a perception of control over their symptoms, it resulted in less caregiver burden. The perception of the quality of the caregiver’s social support network and the satisfaction that the caregiver experiences from the support network has been shown to reduce stress [11]. It has been suggested that caregiver burden is also influenced by the care recipient’s condition: when the care recipient’s functional dependency is reduced, the caregiver burden will also be reduced [19]. There are several limitations to this study. The study population was small and comprised of outpatients who attended the neurology clinic of two government hospitals. At the time of study, one of these hospitals, UKMMC, was new and had only been operational for about 4 years. This, and the short duration of study (only 3 months) could have contributed to the small sample size. They might not be representative of the true population of the PD patients in the country. This study did not include patients attending private hospitals who were usually relatively well to do financially and less ill, and those in the advanced stage of their illness who were immobile and bed-bound. The CBS [5] should have been validated for local use but it was not done due to time constraint. Other clinical factors which were not studied, which might have impact on caregiver burden, include behavioural problems related to psychosis, coexisting depression or dementia, or side-effects of medications. 5. Conclusions and recommendations This local study supported previous studies which showed that PD patients’ age, stage and severity of illness are significantly associated with feeling of burden in the caregivers. However, the caregivers’ perceived burden was not related to their gender, social status, kinship or the duration of care-giving. Reducing the feeling of burden among caregivers is important. Psycho-education on caregiver burden, prognosis of illness and side effects of medications should be incorporated during clinic visits. Respite in the forms of caregiver support group involvement and day care attendance for patients may reduce caregiver burden. Conflict of interest None. Acknowledgement The authors would like to express their appreciation to the family of late co-author, Dr. Fazli Ahmad, for allowing them to publish this paper on a study in which he had played a major role in. His untimely demise is deeply condoled by all and his contribution to the study is forever appreciated. References [1] Mayeux R, Denaro J, Hemenegildo N, Marder K, Tang M, Cote L, et al. A population-based investigation of Parkinson’s disease with and without dementia. Arch Neurol 1992;49:492–7. [2] Caap-Ahlgren M, Lannerheim L, Dehlin O. Older Swedish women’s experiences of living with symptoms related to Parkinson’s disease. J Adv Nurs 2002;39(1):87–95. [3] Pearlin L, Mullon J, Semple S, Skaff M. Caregiver and stress process: an overview of concepts and their measures. Gerontologist 1990;30:583–91.
R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643 [4] Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M. The burden of Parkinson’s disease on society, family and individual. J Am Geriatr Soc 1997;45(7):844–9. [5] Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980;20:649–55. [6] Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M. Caregiver burden in Parkinson disease is closely with psychiatric symptoms, falls and disability. Parkinsonism Relat Disord 2006;12(January (1)):35–41. [7] Lingler JH, Sherwood PR, Crighton MH, Song MK, Happ MB. Conceptual challenges in the study of caregiver–care recipient relationships. Nurs Res 2008;57(September–October (5)):367–72. [8] Thommessen B, Aarsland D, Braekhus A, Oksengaard AR, Engedal K, Laake K. The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinson’s disease. Int J Geriatr Psychiatry 2002;17(1):78–84. [9] D’Amelio M, Terruso V, Palmeri B, Di Benedetto N, Famoso G, Cottone P, et al. Predictors of caregiver burden in partners of patients with Parkinson’s disease. Neurol Sci 2009;30(April (2)):171–4 [Epub 2009; February 3]. [10] Hooker K, Manoogian-O’Dell M, Monahan DJ, Frazier LD, Shifren K. Does type of disease matter? Gender differences in Alzheimer’s and Parkinson’s disease spouse caregivers. Gerontologist 2000;40(5):568–73. [11] Miller B, Cafasso L. Gender differences in caregiving: fact or artifact? Gerontologist 1992;32:498–507.
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[12] Haley WE. The family caregiver’s role in Alzheimer’s disease. Neurology 1997;48(May (5 (Suppl. 6))):525–9. [13] Schumacher K, Beck CA, Marren JM. Am J Nurs 2006;106(August (8)):40–9 [quiz 50]. [14] Martinez-Martin P, Joao Forjaz M, Frades-Payo B, Bayes Rusinol A, FernandezGarcia JM, Benito-Leon J, et al. Caregiver burden in Parkinson’s disease. Mov Disord 2007;22(7):924–31. [15] Wickremaratchi MM, Perera D, O’Loghlen C, Sastry D, Morgan E, Jones A, et al. Prevalence and age of onset of Parkinson’s disease in Cardiff: a community based cross sectional study and meta-analysis. J Neurol Neurosurg Psychiatry 2009;80(July (7)):805–7. [16] Carter JH, Stewart BJ, Archbold PG, Inoue I, Jaglin J, Lannon M, et al. Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of the disease. Mov Disord 1998;13(1):20–8. [17] Lokk J. Reduced life-space of non-professional caregivers to Parkinson’s disease patients with increased disease duration. Clin Neurol Neurosurg 2009;111(September (7)):583–7. [18] Wallhagen MI, Brod M. Perceived control and well-being in Parkinson’s disease. Nurs Res 1997;(February (1)):11–25. [19] Goldsworthy B, Knowles S. Caregiving for Parkinson’s disease patients: an exploration of a stress-appraisal model for quality of life and burden. J Gerontol 2008;63(November (6)):372–6.
Contents lists available at ScienceDirect
Clinical Neurology and Neurosurgery journal homepage: www.elsevier.com/locate/clineuro
Burden of care among caregivers of patients with Parkinson disease: A cross-sectional study Rosdinom Razali ∗ , Fazli Ahmad, Fairuz Nazri Abd Rahman, Marhani Midin, Hatta Sidi Department of Psychiatry, Universiti Kebangsaan Malaysia Medical Centre (UKMMC), Jalan Yaakob Latif, Bandar Tun Razak, Cheras 56000, Kuala Lumpur, Malaysia
a r t i c l e
i n f o
Article history: Received 18 May 2010 Received in revised form 19 November 2010 Accepted 14 May 2011
Keywords: Burden of care Caregivers Parkinson disease Caregiver’s Burden Scale (CBS)
a b s t r a c t Objective: Parkinson disease (PD) affects the lives of both the individuals and their family members. This study aims at investigating for clinical as well as socio-demographic factors associated with the perception of burden among the caregivers of individuals with PD in Malaysia. Methods: This is a descriptive, cross-sectional study on PD patients and their caregivers who attended the neurology clinics of 2 tertiary hospitals in Kuala Lumpur. Socio-demographic and clinical data of the patients were obtained, including caregivers’ perception of burden using the Caregiver’s Burden Scale (CBS). Results: The patients’ mean age was 62.12 ± 9.69 years, almost half of them were in stage 2 of their illness, had developed PD at the age of 50–69 and had duration of illness of less than 5 years. The caregivers were mostly females and a third of them were wives. Factors which were significantly associated with increased caregiver burden were patients’ advancing age, later stage of illness and those having longer duration of caring. Caregivers’ perceived burden was related to their race gender, social status, kinship with patient or duration of care-giving. Conclusion: Burden of care is significantly more in PD patients of advanced age and stage of illness. © 2011 Elsevier B.V. All rights reserved.
1. Introduction Parkinson disease (PD) is the second most prevalent neurodegenerative disorder after Alzheimer disease. It is a progressive and fluctuating neurological condition that is characterized by bradykinesia, rigidity, tremors of the limbs at rest and abnormality of posture. It occurs as a sporadic or familial disorder, inflicting about 1% of the population over 65 years [1]. The prevalence and incidence of PD will increase as the population ages [2]. PD affects 4 million individuals world-wide and the frequency is expected to increase 4 fold by 2040 due to ageing population. Unfortunately, despite this escalation in figures, its treatment has been a challenge and curative therapy is yet to be discovered. It has been documented that caregivers of individuals with chronic illness experience burden [3,4]. Burden is defined as the extent to which the caregivers perceive their health, social life and financial status are suffering because of their caregiving experience [5]. Most of the caring is provided by informal caregivers without any formal training in care-giving. Their endless physical and emotional support plays an important role in preventing early nursing home placement [6]. Chronic illnesses such as PD not
only affect individuals but also their family members on a daily basis, often resulting in changes in their lifestyle patterns [7]. Caregiving spouses often face difficulty with the increasing caregiving demands despite their own aging processes and physical decline, which may add to the caregiving burden that they already experienced [8,9]. Previous studies have demonstrated that certain factors are associated with higher levels of caregiver burden. Among these are caregiver’s age, race, income, relationship of the caregiver to the care recipient, co-residence with the care recipient, disease characteristics of the care recipient; and care needs of the care recipient [10]. Studies have shown that younger caregiver experience greater burden than older caregivers and that gender shows an inconsistent relationship to burden [11]. A few studies have also shown that caregivers who assist care-recipients with activities of daily living and/or care persons with behavioural problems exhibit greater burden than caregivers who assist with other care needs [12,13]. Prevalence of PD in Malaysia is unknown but is believed to be increasing as the country ages. Despite this, there is no local studies on the burden of care in PD. Thus this study intends to investigate for factors associated with increased feeling of burden among the Malaysian caregivers of patients with PD. 2. Materials and methods
∗ Corresponding author. Tel.: +60 3 91456142/3; fax: +60 3 91456681. E-mail addresses: [email protected], [email protected] (R. Razali). 0303-8467/$ – see front matter © 2011 Elsevier B.V. All rights reserved. doi:10.1016/j.clineuro.2011.05.008
This is a cross-sectional descriptive study, using interviewerrated, semi-structured self-administered questionnaires among PD
640
R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643
patients and their caregivers who attended the neurology clinics of Hospital Kuala Lumpur (HKL) and Universiti Kebangsaan Malaysia Medical Centre (UKMMC) over a period of 3 months in 2002. HKL is a government hospital and UKMMC is a semi-government (university) hospital which caters for the general population of Kuala Lumpur and its surrounding areas. Both are tertiary referral centers which also accept patients from other states in Malaysia. Important demographic data together with clinically relevant information were gathered through face-to-face interview with the patients and their relatives. Diagnosis and staging of PD were done by the neurologists based on the Hoehn and Yahr Scale which was the standard assessment tool at that time. This scale grouped patients into: stage I: unilateral disease; stage II: bilateral mild disease; stage III: bilateral disease with early impairment of postural stability; stage IV: severe diseases requiring assistance; stage V: confinement to bed or wheel chair, unless aided. In this study, stage I and II were considered as the early stage while stage III, IV or V as the late stage of illness. The Caregiver’s Burden Scale (CBS) [5] was used to assess burden of care among the caregivers. It is a 29-item scale designed to measure feelings of burden experienced by caregivers of elderly persons with senile dementia. It has been previously used to assess burden in PD caregivers [14]. The items for the CBS were selected based on clinical experience and prior research, and covered areas most frequently mentioned by caregivers as problems. The CBS provides opportunity for a systematic assessment of caregivers’ perceptions of burden. The CBS is scored on a 5-point sliding scale with the scores on the items summed up as the total scores. In this study a caregiver is defined as the patient’s spouse, children or children-in-law, someone with kinship with the patient, who lived with and took care of patient almost everyday (excluding domestic helpers or paid sitters). 2.1. Study samples All patients fulfilling the inclusion and exclusion criteria were selected by convenient sampling. The inclusion criteria were: (i) patients with a clinical diagnosis of PD diagnosed by neurologists; (ii) accompanied by their caregivers and voluntarily consented for the study. The exclusion criteria were: patients with (i) other neurodegenerative disorders (as diagnosed by neurologists); (ii) history of cerebral vascular accident or transient ischaemic attack; (iii) uncontrolled hypertension or diabetes mellitus; (iv) history of epilepsy or cerebral tumor; (v) history of syphilis or encephalitis; (vi) history of alcohol dependence; (vii) history of head injury with loss of consciousness; (viii) history of being on treatment with neuroleptic drugs; (ix) presence of any physical illness associated with chronic confusional state; (x) history of psychiatric illness; (xi) unable to understand English or the national language (Bahasa Malaysia); and (xii) patient who refused to give consent. Patients and their caregivers were interviewed separately in a room within the clinic to ensure confidentiality. Once consent was obtained, they were interviewed for the demographic data. The caregivers were then asked to complete the CBS. 2.2. Data analysis The collected data was analysed using the SPSS (Statistical Package for Social Science version 10.01) computer programme. The relationships between the various study parameters were analysed using correlation, one-way ANOVA and independent t tests. Ninetyfive percent confidence interval was chosen as the significant level (p = 0.05) during the statistical analysis.
Table 1 Sociodemographic characteristics of PD patients.
Age Less than 50 50–59 60–69 70 and above Gender Male Female Race Malay Chinese Indian Marital status Single Married Divorced Widowed Education No education Primary Secondary Tertiary Age at onset of PD Less than 40 40–49 50–59 60–69 70 and above Duration of PD 5 years and less 6–10 years More than 10 years
Frequency, n1
Percentage (%)
13 31 40 31
11.3 27.0 34.7 27.0
65 50
56.5 43.5
61 43 11
53.0 37.4 9.6
6 90 1 18
5.1 78.3 0.9 15.7
13 46 42 14
11.3 40.0 36.5 12.2
4 29 37 36 9
3.5 25.2 32.2 31.3 7.8
57 41 17
49.6 35.6 14.8
2.3. Ethical considerations This study had been approved by the Ethics Committee, Directors and Heads of Department of Neurology of both hospitals. Both written and verbal information about the aims of the study were explained to the patients and their caregivers before written consent obtained from both parties. 3. Results A total of 186 PD patients were approached for this study but only 115 were eligible to participate. Twenty-eight of the patients came alone without caregivers, 18 came with non-caregivers while another 25 refused to participate in this study because of fatigue or lack of time. All of the 28 patients who came alone were patients with early stage PD (stages 1 and 2). Two thirds of patients who refused to participate were in the advance stage of illness (stages 3 and 4). Seven of the 18 patients who came with the non-caregivers came from residential homes. They were accompanied by staffs who were not involved in caring for them at the nursing homes. The remaining 11 patients came with family members who live separately from patients. Out of the 115 patients, 88 were from the neurology clinic in Hospital Kuala Lumpur while the remaining 27 were from UKMMC. The sociodemographic data of patients and their caregivers are displayed in Tables 1 and 2. The duration of caregiving and the number of other care-recipients are presented in Tables 3 and 4. About half of the caregivers (47.8%) had been caring for PD patients for a duration of between 2 and 5 years. There was a positive correlation between the CBS score and the care-giving duration. The correlation was not strong but it was statistically significant (r = 0.0246, p = 0.008). This implies that the caregiver felt more burden with longer time spent caring for these patients.
R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643 Table 2 Sociodemographic characteristics of the caregivers. Frequency, n2 Age Less than 50 50–59 60–69 70 and above Gender Male Female Race Malay Chinese Indian Others Marital status Single Married Divorced Widowed Education No education Primary Secondary Tertiary Relationship with the patient Wife Husband Daughter Son Sister Mother Monthly income (MYR) 1000.00 and below 1001.00–3000.00 3001.00–5000.00 >5000.00
Table 5 Relationship between caregivers’ race and CBS scores. Percentage (%)
68 23 19 5
59.2 20.0 16.5 4.3
43 72
37.4 62.6
59 43 11 2
51.3 37.4 9.6 1.7
26 88 1 0
22.6 76.5 0.9 0
4 18 66 27
3.5 15.7 57.3 23.5
36 15 27 29 5 3
31.3 13.0 23.5 25.3 4.3 2.6
58 45 11 1
50.4 39.1 9.6 0.9
Table 3 Duration of caregiving distribution. Duration of caregiving 1 year or less 2–5 years 6–10 years >10 years Total
Frequency, n2 7 55 40 13
Percentage (%) 6.1 47.8 34.8 11.3
115
100
There was a significant relationship between CBS score and the number of other people the caregiver had to take care of besides the patient. More than 2/3 (70.4%) were also caring for other ill individuals at the same time. The CBS score was negatively correlated to the number of other care-recipients. Even though the correlation was not strong, it was found to be statistically significant (r = −0.217, p = 0.02). The relationships between race and marital status of caregivers and CBS scores are as presented in Tables 5 and 6. When CBS score was analysed against the different race groups of the caregivers, the result showed that there was significant difference in the mean CBS scores between the races. The Malay caregivers reported the
Table 4 Number of other care-recipients distribution. No. of other care-recipients 0 1–5 >5 Total
Frequency, n2 34 73 8 115
641
Race
Mean CBS scores
Test
p
Malay Chinese Indian Others
14.92 + 11.93 21.74 + 11.10 20.36 + 9.94 21.00 + 11.31
ANOVA F = 3.163
0.027
lowest feeling of burden as compared to others and the Chinese caregivers reported the highest feeling of burden. Marital status of the caregivers was noted to have significant relationship with the CBS score. A caregiver who was a divorcee in this sample reported higher feeling of burden when compared to the caregivers who were single or married. The married caregivers reported lower feeling of burden when compared to the single caregivers. Type of caregivers’ relationship with the PD patients in this sample was not found to be related to the perception of burden. Even though daughters reported the highest CBS score while the sisters reported the least, the difference of CBS score between the different groups was found to be not significant. Even though there was a positive correlation between the caregivers’ monthly income and feeling of burden, the correlation was weak and not significant statistically (r = 0.097, p = 0.301). There was also a positive correlation between the CBS score and the care-giving duration. The correlation was not strong but it was statistically significant (r = 0.0246, p = 0.008). This implies that the caregiver felt more burden with longer time spent caring for these patients. There was a significant relationship between CBS score and patient’s stage of PD. The CBS score was positively correlated to the stage of the illness (r = 0.367, p < 0.005). This means that increased severity of the patients’ illness in the late stage was associated with increased feeling of burden in the caregivers. The age of PD subjects was also noted to have significant relationship with the feeling of burden in the caregivers. The CBS score was positively correlated to the age of the PD patient (r = 0.206, p = 0.027). The feeling of burden in the caregivers increased with older PD patients. Even though there was a positive correlation between the caregivers’ monthly income and feeling of burden, the correlation was weak and not significant statistically (r = 0.097, p = 0.301). There was no significant relationship between the age at onset of PD and the feeling of burden in the caregivers (r = 0.079, p = 0.404). Gender of PD patients and their caregivers also did not seem to show significant correlation with the CBS scores (t test = 0.513, p = 0.609 for patient; t test = 1.267, p = 0.208 for caregivers). 4. Discussion Majority of the PD patients were over 60 years old, consistent with several epidemiological studies which showed the prevalence and incidence rates increasing steadily with advancing age [14]. There was a slight preponderance of male patients in this sample as noted in other studies with ratios of male to female ranging from 1.36–1.54:100, a reflection of the population in this country where there is a slightly higher ratio of male than female in this Table 6 Relationship between caregivers’ marital status and CBS scores.
Percentage (%) 29.6 63.4 7.0 100
Marital status
Mean CBS scores
Test
p
Single Married Divorced
22.81 + 12.06 16.48 + 11.21 38.00 + 0.00
ANOVA F = 3.163
0.027
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R. Razali et al. / Clinical Neurology and Neurosurgery 113 (2011) 639–643
Table 7 Relationship between kinship with caregivers and CBS scores. Caregiver
Mean CBS scores
Daughter Mother Son Wife Husband Sister
22.19 19.00 17.79 17.67 14.20 12.00
± ± ± ± ± ±
12.23 16.09 11.53 12.25 9.99 5.57
Test
p
ANOVA F = 1.282
0.277
country (male:female = 104:100). There were more Malay patients in this study, probably because most of them comprised of retired civil servants who enjoyed free treatment in government hospitals, whereas the Chinese and Indians having worked in the private sectors, preferred private hospital treatment. A majority of the patients were in stage 2 of illness. None were in the stage 5 where patients would be confined to bed and difficult to be brought to hospital. Stage 1 is a mild form of the disease and most patients tended to seek treatment only when their condition worsened. This might be explained for the small number of patients in the early stage of their illness. Only 3% of the patients had early onset PD (age at onset < 40 years) with majority of them having the onset at age of 50–69 years. This finding is similar with Western studies where the prevalence and incidence rates of PD increase steadily with advancing age. For example, the agespecific incidence rates for PD in North American, European and Australian whites were low in those younger than 40 years of age and increased with age [15]. The number of other care recipients besides the patient was negatively correlated to the feeling of burden in this study. This means that the increase in the number of the people that the caregiver had to take care of was not associated with increase in the feeling of burden. Usually, it is expected that increase in the number of individuals that the caregiver has to take care of will increase the feeling of burden. Probably, the presence of other people in the house with whom the main caregiver shared the responsibility of caring helped reduce burden. This form of social support among family members or friends is a common practice among most Malaysian families. In this study, a more advanced PD was found to be associated with increase in feeling of burden. Similar findings were found in a study by Carter et al. [16] in which caregiver burden was experienced across all stages of PD and it accumulated significantly as the disease progressed. The mean number of care-giving tasks tripled by stage 4 and stage 5 and the negative changes in caregivers’ lifestyle plus decreases in predictability in caregivers’ lives also increased significantly in late stage disease. Depression in the caregiver was found to be significantly higher by stage 4 and stage 5. The Malay caregivers seem to report the least burden, probably due to their more tolerant attitude and better acceptance of this illness. Some of them even consider the expression of burden to others as being sinful. Traditionally, caring and nursing have almost always been associated with women and many women accept them as part of their social obligation towards the sick. In this study, two thirds (66%) of caregivers were female and most of them were patients’ own wives, with adequate educational background and had at least 2–5 years of caring experience. However, burden of care was not significantly related to the duration of care-giving, gender of the caregiver or kinship (Table 7). In a similar study on caregiver burden, age, gender and marital status of the caregiver did not show any significant correlation to burden, after adjustment of disease duration [6]. This could be due to the fact that caregivers were able to make adjustments to their lifestyle over time as the illness progressed and their sense of filial piety towards their own family member helped reduce burden of care.
On the contrary, a study has shown that confinement caused by looking after PD patients can disrupt the life of the entire family and result in adverse social consequences for the caregiver [17]. One of the factors that was not studied in this study was the PD patients’ perception of control over their symptoms and the caregivers’ subjective view of their caregiving activities as an act of filial piety or on the contrary, a form of social punishment [18]. When PD patients had a perception of control over their symptoms, it resulted in less caregiver burden. The perception of the quality of the caregiver’s social support network and the satisfaction that the caregiver experiences from the support network has been shown to reduce stress [11]. It has been suggested that caregiver burden is also influenced by the care recipient’s condition: when the care recipient’s functional dependency is reduced, the caregiver burden will also be reduced [19]. There are several limitations to this study. The study population was small and comprised of outpatients who attended the neurology clinic of two government hospitals. At the time of study, one of these hospitals, UKMMC, was new and had only been operational for about 4 years. This, and the short duration of study (only 3 months) could have contributed to the small sample size. They might not be representative of the true population of the PD patients in the country. This study did not include patients attending private hospitals who were usually relatively well to do financially and less ill, and those in the advanced stage of their illness who were immobile and bed-bound. The CBS [5] should have been validated for local use but it was not done due to time constraint. Other clinical factors which were not studied, which might have impact on caregiver burden, include behavioural problems related to psychosis, coexisting depression or dementia, or side-effects of medications. 5. Conclusions and recommendations This local study supported previous studies which showed that PD patients’ age, stage and severity of illness are significantly associated with feeling of burden in the caregivers. However, the caregivers’ perceived burden was not related to their gender, social status, kinship or the duration of care-giving. Reducing the feeling of burden among caregivers is important. Psycho-education on caregiver burden, prognosis of illness and side effects of medications should be incorporated during clinic visits. Respite in the forms of caregiver support group involvement and day care attendance for patients may reduce caregiver burden. Conflict of interest None. Acknowledgement The authors would like to express their appreciation to the family of late co-author, Dr. Fazli Ahmad, for allowing them to publish this paper on a study in which he had played a major role in. His untimely demise is deeply condoled by all and his contribution to the study is forever appreciated. References [1] Mayeux R, Denaro J, Hemenegildo N, Marder K, Tang M, Cote L, et al. A population-based investigation of Parkinson’s disease with and without dementia. Arch Neurol 1992;49:492–7. [2] Caap-Ahlgren M, Lannerheim L, Dehlin O. Older Swedish women’s experiences of living with symptoms related to Parkinson’s disease. J Adv Nurs 2002;39(1):87–95. [3] Pearlin L, Mullon J, Semple S, Skaff M. Caregiver and stress process: an overview of concepts and their measures. Gerontologist 1990;30:583–91.
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