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Table of Contents    
Year : 2021  |  Volume : 69  |  Issue : 6  |  Page : 1706-1710

Neuropsychiatric Symptoms and Caregiver's Burden in Parkinson's Disease Patients in a Tertiary Care Teaching Hospital in South India: A Cross-Sectional Study

1 Department of Hospital and Clinical Pharmacy, College of Pharmaceutical Sciences, Government Medical College, Vattappara, Kerala, India
2 Division of Neurology, Department of Medicine, Queen's University, Kingston, Ontario, Canada
3 Department of Community Medicine, SUT Academy of Medical Sciences, Vattappara, Kerala, India
4 Department of Neurology, Government Medical College, Kerala University of Health Sciences, Thiruvananthapuram, Kerala, India

Date of Submission15-Dec-2019
Date of Decision27-Jun-2020
Date of Acceptance18-Jul-2020
Date of Web Publication23-Dec-2021

Correspondence Address:
Dr. Thomas Iype
Department of Neurology, Government Medical College Thiruvananthapuram, Thiruvananthapuram, Kerala
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/0028-3886.333437

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 » Abstract 

Background: In patients with Parkinson's disease (PD), the occurrence of motor and non-motor symptoms increases with disease progression. The range of neuropsychiatric symptoms (NPS) vary among individuals and can be burdensome for caregivers. Only a few studies have identified the contributing factors of NPS and caregiver burden in India.
Objectives: We aimed to study the clinical profile, disability, and predictive factors of NPS in PD patients and associated caregiver's burden.
Methods and Material: This was a cross-sectional observational study carried out in PD patients and their respective caregivers attending a movement disorder clinic in a tertiary care teaching hospital in Kerala. A total of 104 patients diagnosed with idiopathic PD receiving levodopa therapy and who had a primary caregiver were enrolled in the study. Structured questionnaires were administered to both patients and caregivers to collect data. Data analysis was done using an independent t-test, linear, and multiple regression analysis.
Results: Among 104 patients recruited for the study, 61.5% of patients had shown at least one NPS and 40.44% showed multiple NPS. Results from the study showed that depression is the primary NPS occurring in IPD patients (55.8%) followed by irritability, anxiety, and apathy. On linear regression models, the prime determinant of NPS was the Everyday Abilities Scale for India (EASI). For caregiver burden, the main determinants were the presence of NPS, duration of caregiving, EASI, and RBDSQ score.
Conclusions: NPS in PD are highly associated with and are determinants of caregiver burden. Detailed assessment and specific interventions aimed at NPS could alleviate caregiver burden.

Keywords: Activities of daily living, caregiver burden, caregivers, cognitive dysfunction, cognitive impairment, depressive disorder, neuropsychiatric symptoms, Parkinson disease, psychological burnout
Key Messages: At least one neuropsychiatric symptom (NPS) was present in 61.5% of persons with Parkinson's disease (PD). NPS is a crucial determinant of the caregiver's burden.

How to cite this article:
Jose A, Bhargavan A, Appireddy R, Raghunath P S, Rajan R, Iype T. Neuropsychiatric Symptoms and Caregiver's Burden in Parkinson's Disease Patients in a Tertiary Care Teaching Hospital in South India: A Cross-Sectional Study. Neurol India 2021;69:1706-10

How to cite this URL:
Jose A, Bhargavan A, Appireddy R, Raghunath P S, Rajan R, Iype T. Neuropsychiatric Symptoms and Caregiver's Burden in Parkinson's Disease Patients in a Tertiary Care Teaching Hospital in South India: A Cross-Sectional Study. Neurol India [serial online] 2021 [cited 2022 Jan 19];69:1706-10. Available from:

Parkinson's disease (PD) over the years results in progressive motor and non-motor symptoms leading to progressive handicap and disability, often leading to the need for caregiver assistance. Neuropsychiatric symptoms (NPS) as a non-motor phenomenon are more frequent in those PD patients with dementia (PDD), which occurs in up to 60% of patients with PD.[1] NPS contributes to poor quality of life for patients,[2] and increased need for admission to a nursing home.[3] Caregiving is a hugely demanding activity, often resulting in caregiver burden (CB). NPS, in particular, contribute to caregiver distress,[4] leading to increased CB.[5],[6] There are very few reports from India on the profile of NPS in patients living with PD and its effects on CB.[7],[8],[9],[10] This study aims to outline the various NPS in PD patients and study its association with the CB.

 » Methodology Top

This is a cross-sectional study on 104 consecutive patients with PD who have an informal caregiver attending the Movement Disorder Clinic, Department of Neurology, Government Medical College Thiruvananthapuram, from March 1, 2018 to August 31, 2018. Approval from the Institutional Human Ethics Committee and informed consent from the patients/caregivers were obtained for the study. PD was diagnosed using the UK Parkinson's Disease Society Brain Bank criteria.[11] The baseline clinical features, socio-demographic characteristics, PD disease stage,[12] and PD motor severity were measured.[13] In addition to the baseline socioeconomic and demographic data, Montreal Cognitive Assessment scale (MoCA),[14] Everyday Abilities Scale for India (EASI),[15] and REM sleep Behavior Disorder Screening Questionnaire (RBDSQ)[16] were administered to PD patients to screen for cognition, disability and REM sleep behavior disorders, respectively. A neurologist categorized the cognitive status of PD patients as healthy, mild cognitive impairment, and dementia.[17] EASI consists of 12 questions to check the activity of daily living (ADL) and offers a rapid assessment of the functional state of the patient. RBDSQ questionnaire reflects the presence or absence of REM sleep behavioral disorder with a cutoff score of five.

The NPS in PD patients was estimated using the Neuro-Psychiatric Inventory (NPI-12 item questionnaire) administered to the caregivers.[18] The Neuro-Psychiatric Inventory (NPI) assessed the neuropsychiatric disturbances of the patient under 12 domains. Each domain's screening questions are followed by estimation of frequency (rated on a scale of one to four) and severity (rated on a scale of one to three). The frequency and severity product gives the total score, ranging from 1 to 12 for each NPS (maximum overall score: 144). NPI has established validity and reliability.[1],[18]

The CB was estimated using the modified Zarit Caregiver Burden Inventory (ZBI).[19] Modified ZBI is a 22-item questionnaire administered to caregivers, using a five-point Likert scale from zero (never) to four (always). ZBI aims to assess the patient's disease or disability's impact on the caregiver's physical, emotional, social, and financial situation. The sum of the individual items' scores gives the total score (Maximum score: 88). A higher score reflects a higher burden.

Statistical analysis

The data collected were anonymized, and statistical analysis was done using SPSS 16.0 (Statistical Package for Social Sciences, SPSS Inc). Appropriate summary statistics (mean [SD], median [IQR], and proportion) were used to describe the baseline data (demographic, socioeconomic and covariates, NPI score, and modified ZBI score). The variable scores for NPI score and modified ZBI score were analyzed as continuous variables as well as categorized (present or absent) using predefined cutoff. Pearson's correlation coefficients were used to analyze the relationship between NPS and ZBI. The difference in the mean scores of the NPI and ZBI among various categories of the covariates were estimated using the t-test or ANOVA using the respective scores and category. We quantified the proportion of NPS as a percentage. The CB was measured in mean (SD) using the modified ZBI. Univariate linear regression was done between the risk factor (NPS assessed by NPI score) and the outcome of interest (CB assessed by modified ZBI score). Multivariate linear regression was done to look at the association between the NPI score and the modified ZBI score adjusting for potential confounders/covariates. All P values were two-tailed, and P < 0.05 was considered statistically significant.

 » Results Top

Baseline data

There were a total of 104 patients and caregivers enrolled in the study. The baseline data are presented in [Table 1]. Forty-three percent of the PD patients were in the ages between 61 and 70 years, 25% between the ages of 51 and 60 years, 16.6% between the ages of 41 and 50 years, 12.5% above the ages of 70 years, and 2.9% ≤40 years of age. Forty-six percent of patients with PD had 8 to 10 years of formal education, 23.1% had 1 to 4 years, 22.1% had 5 to 7 years, and 7.7% had ≥11 years of formal education. Only 1% were illiterate. Widows constituted 8.7%, separated 4.8%, and single 1.9%.
Table 1: Baseline characteristics of PD patients

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Most patients with PD (37.5%) were symptomatic for one to three years. The minimum duration of illness was half a year, and the maximum was 20 years. The majority of the PD patients belonged to modified Hoehn and Yahr stages 2.5 (53.8%) and three (40%). We had five patients (4.8%) with stage 4, one patient (0.96%) in stage 5, and two patients (1.9%) in stage 1.5. Based on Unified Parkinson's Disease Rating Scale (UPDRS) motor scores, 34.6% belonged to the mild category, 41.3% to the moderate category, and 24% to severe category. The minimum motor score was four, and the maximum was 91. One-third of patients (36.5%) were on levodopa for a duration of 1 to 3 years, 23.1% had duration 3 to 5 years, 22.1% had duration less than a year, 9.6% for 5 to 7 years, 6.7% for 7 to 9 years, 1.9% for more than nine years.

Neuropsychiatric symptom

Forty patients (38.46%) showed no NPS, only one symptom in 21.1%, and multiple NPS in 40.44%: two symptoms in 15.4%, three symptoms in 11.5%, and more than three symptoms in 13.4%. The mean NPI total score was 6.37 ± 8.791 (ranged from 0 to a maximum value of 55). Most domains in NPI were affected [Table 2]. We did not observe the affection of euphoria and aberrant motor behavior domains. Univariate analysis showed an association of NPI score with age of the patient 70 years and over (P-value = 0.025), impaired cognition (MoCA score <15) (P-value = 0.023) and impaired instrumental activities of daily living (EASI score <3) (P-value = 0.001). There was no association of NPI total score with levodopa equivalent daily dose (LEDD), Hoehn and Yahr staging, and MDS-UPDRS part III score.
Table 2: Neuropsychiatric symptoms elicited through neuropsychiatric inventory

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Caregiver's burden

The primary caregivers were predominantly female; 80 (76.9%) out of the 104. Five (4.8%) primary caregivers were single, one (1%) widow, one (1%) separated, and 97 (93.3%) were married. Two (1.9%) of the primary caregivers were parents, 11 (10.6%) were siblings, 12 (11.5%) were sons-in-law/daughters-in-law, 26 (25%) were sons/daughters, and 53 (51%) were spouses. The mean ZBI score (SD) assessing the CB was 11.77 ± 12.177. There was little or no burden (ZBI 0–21) in 86 (82.7%) caregivers, mild to moderate burden (ZBI 21–40) among 14 (13.5%), moderate to severe burden (ZBI 41–60) in four (3.8%), and severe burden (ZBI 61–88) in none.

Association between Neuropsychiatric symptoms and Caregiver's burden

We found the total NPI score to correlate with the ZBI score (Pearson's correlation coefficient: +0.692) [Figure 1].
Figure 1: Pearson's correlation between NPI total score and Zarit caregiver burden score

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Risk factors for caregiver's burden

Univariate analysis showed ZBI score of caregivers to be associated with UPDRS score (P- value = 0.001), EASI score (P-value = 0.001), and RBDSQ score (P-value = 0.025), of patients with PD, years of caregiving (P-value = 0.001), and hours of caregiving per day (P -value = 0.001). Linear regression showed NPS (P-value = 0.001), EASI score (P-value = 0.038) and years of caregiving (P-value = 0.001) to be independent risk factors for CB [Table 3].
Table 3: Linear regression analysis for predictive factors for caregiver burden

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 » Discussion Top

This study on 104 patients attending the movement disorders outpatient clinic of a tertiary care centre confirms that NPS is associated with CB. Most of our patients were ambulant (median modified Hoehn and Yahr 2.5) with normal cognition (75%). The prevalence and profile of NPS were consistent with existing literature.[8],[20] Depression was the commonest NPS.[21] Similar to our findings, others have shown that NPS was associated with impaired cognition.[20],[22],[23] Our study showed that NPS, as measured by the total NPI score correlated with the EASI, which assessed the instrumental activities of daily living.

All the patients with PD in this study had informal caregivers, half of them were spouses, and a quarter were sons or daughters. Some of the caregivers perceived mild to moderate burden (13.5%) and moderate to severe (3.8%) CB. The mean score of ZBI (11.77 ± 12.177) was found to be low when compared with a mean score by Pablo Martinez-martin et al. (21.87 ± 16.59) and Daniel Grun et al. (25.8 ± 17.1).[22],[24] More significant CB was associated with NPS, affection of instrumental activities of daily living, and long years of caregiving. CB is more in patients with NPS, as recorded by Stella et al. and Martinez-Martin et al.[6],[22] EASI was found to be an independent risk factor for CB, which is similar to the observations by Edwards et al.[25] Martinez-Martin et al. and Carod-Artal et al.[22],[26] showed cognitive impairment to increase CB contradictory to our observation which is supported by Grün et al.[24] In a similar study from India, UPDRS motor scores were associated with CB even though we could not replicate it.[27] RBD was found to be a risk factor in univariate but not multivariate analysis. Other researchers highlighted sleep-related disturbances affecting caregiving commitment.[27],[28] This could be explained by the increased nocturnal care given to the patient by the caregiver. Hours of caregiving was not a risk factor in the current study but correlated with the CB in another study.[29]


The current study has its weakness in being a cross-sectional study. Therefore, a well-defined longitudinal study methodology with a larger sample size will improve the research findings' power. Since our samples were all ambulatory patients, fewer in the advanced stages of diseases (Hoehn and Yahr 4,5) might have reduced the overall rate of NPS and CB.

 » Future Perspectives Top

This study highlights the need to carry out a complete neuropsychiatric assessment of PD patients in clinical practice and motor symptoms. Since around one-third of the PD patients experience cognitive impairment, it should be identified early and managed by pharmacological and nonpharmacological strategies. Moreover, we recommend that the mental health of caregivers of chronically ill patients should be considered, and better supportive measures should be taken to alleviate the burden.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest.

 » References Top

Aarsland D, Larsen JP, Lim NG, Janvin C, Karlsen K, Tandberg E, et al. Range of neuropsychiatric disturbances in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry 1999;67:492-6.  Back to cited text no. 1
Karlsen KH. Health related quality of life in Parkinson's disease: A prospective longitudinal study. J Neurol Neurosurg Psychiatry 2000;69:584-9.  Back to cited text no. 2
Aarsland D, Larsen JP, Tandberg E, Laake K. Predictors of nursing home placement in Parkinson's Disease: A population-based, prospective study. J Am Geriatr Soc 2000;48:938-42.  Back to cited text no. 3
Aarsland D, Larsen JP, Karlsen K, Lim NG, Tandberg E. Mental symptoms in Parkinson's disease are important contributors to caregiver distress. Int J Geriatr Psychiatry 1999;14:866-74.  Back to cited text no. 4
Aarsland D, Bronnick K, Ehrt U, De Deyn PP, Tekin S, Emre M, et al. Neuropsychiatric symptoms in patients with Parkinson's disease and dementia: Frequency, profile and associated care giver stress. J Neurol Neurosurg Psychiatry 2007;78:36-42.  Back to cited text no. 5
Stella F, Banzato CEM, Quagliato EMAB, Viana MA, Christofoletti G. Psychopathological features in patients with Parkinson's disease and related caregivers' burden. Int J Geriatr Psychiatry 2009;24:1158-65.  Back to cited text no. 6
Amar BR, Yadav R, Janardhan Reddy YC, Pal PK. A clinical profile of patients with Parkinson's disease and psychosis. Ann Indian Acad Neurol 2014;17:187-92.  Back to cited text no. 7
[PUBMED]  [Full text]  
Rai NK, Goyal V, Kumar N, Shukla G, Srivastava AK, Singh S, et al. Neuropsychiatric co-morbidities in non-demented Parkinson's disease. Ann Indian Acad Neurol 2015;18:33-8.  Back to cited text no. 8
[PUBMED]  [Full text]  
Sanyal J, Das S, Ghosh E, Banerjee TK, Bhaskar LVKS, Rao VR. Burden among Parkinson's disease care givers for a community based study from India. J Neurol Sci 2015;358:276-81.  Back to cited text no. 9
Thippeswamy H, Viswanath B, Babu GN, Reddi VSK, Chaturvedi SK. Consultation-liaison approach for the management of psychiatric manifestations in Parkinson's disease and related disorders: A report from neuropsychiatric hospital, India. Indian J Psychol Med 2014;36:134-7.  Back to cited text no. 10
[PUBMED]  [Full text]  
Hughes AJ, Daniel SE, Kilford L, Lees AJ. Accuracy of clinical diagnosis of idiopathic Parkinson's disease: A clinico-pathological study of 100 cases. J Neurol Neurosurg Psychiatry 1992;55:181-4.  Back to cited text no. 11
Hoehn MM, Yahr MD. Parkinsonism: onset, progression and mortality. Neurology 1967;17:427-42.  Back to cited text no. 12
Goetz CG, Tilley BC, Shaftman SR, Stebbins GT, Fahn S, Martinez-Martin P, et al. Movement disorder society-sponsored revision of the unified Parkinson's disease rating scale (MDS-UPDRS): Scale presentation and clinimetric testing results. Mov Disord 2008;23:2129-70.  Back to cited text no. 13
Nasreddine ZS, Phillips NA, Bédirian V, Charbonneau S, Whitehead V, Collin I, et al. The Montreal cognitive assessment, MoCA: A brief screening tool for mild cognitive impairment. J Am Geriatr Soc 2005;53:695-9.  Back to cited text no. 14
Pandav R, Fillenbaum G, Ratcliff G, Dodge H, Ganguli M. Sensitivity and specificity of cognitive and functional screening instruments for dementia: The Indo-U.S. Dementia epidemiology study. J Am Geriatr Soc 2002;50:554-61.  Back to cited text no. 15
Stiasny-Kolster K, Mayer G, Schäfer S, Möller JC, Heinzel-Gutenbrunner M, Oertel WH. The REM sleep behavior disorder screening questionnaire-A new diagnostic instrument. Mov Disord 2007;22:2386-93.  Back to cited text no. 16
American Psychiatric Association, American Psychiatric Association, editors. Diagnostic and statistical manual of mental disorders: DSM-5. 5th ed.. Washington, D.C: American Psychiatric Association; 2013. p. 947.  Back to cited text no. 17
Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology 1994;44:2308-14.  Back to cited text no. 18
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980;20:649-55.  Back to cited text no. 19
Aarsland D, Kramberger MG. Neuropsychiatric symptoms in Parkinson's disease. J Park Dis 2015;5:659-67.  Back to cited text no. 20
Pal P, Singh G, Arun M, Bharath S. Relationship of depression, disability, and quality of life in Parkinson's disease: A hospital-based case-control study. Neurol India 2011;59:185-9.  Back to cited text no. 21
[PUBMED]  [Full text]  
Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ, Frades-Payo B, Agüera-Ortiz L, Weintraub D, et al. Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease. Parkinsonism Relat Disord 2015;21:629-34.  Back to cited text no. 22
Das D, Biswas A, Roy A, Sauerbier A, Bhattacharyya KB. Cognitive impairment in idiopathic Parkinson's disease. Neurol India 2016;64:419-27.  Back to cited text no. 23
[PUBMED]  [Full text]  
Grün D, Pieri V, Vaillant M, Diederich NJ. Contributory factors to caregiver burden in Parkinson disease. J Am Med Dir Assoc 2016;17:626-32.  Back to cited text no. 24
Edwards NE, Scheetz PS. Predictors of burden for caregivers of patients with Parkinson's disease. J Neurosci Nurs J Am Assoc Neurosci Nurses 2002;34:184-90.  Back to cited text no. 25
Carod-Artal FJ, Mesquita HM, Ziomkowski S, Martinez-Martin P. Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients. Parkinsonism Relat Disord 2013;19:943-8.  Back to cited text no. 26
Agrawal V. Predictors of caregiver's burden of Parkinson's disease in India: Experience of a tertiary care center in India. J Park Restless Legs Syndr 2012;59-65.  Back to cited text no. 27
Happe S, Berger K, FAQT study investigators. The association between caregiver burden and sleep disturbances in partners of patients with Parkinson's disease. Age Ageing 2002;31:349-54.  Back to cited text no. 28
Martínez-Martín P, Forjaz MJ, Frades-Payo B, Rusiñol AB, Fernández-García JM, Benito-León J, et al. Caregiver burden in Parkinson's disease. Mov Disord 2007;22:924-31.  Back to cited text no. 29


  [Figure 1]

  [Table 1], [Table 2], [Table 3]


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