Acta Neurol Scand 2015: 131: 203–210 DOI: 10.1111/ane.12305

© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd ACTA NEUROLOGICA SCANDINAVICA

Factors contributing to caregivers’ stress and burden in Parkinson’s disease Santos-Garcıa D, de la Fuente-Ferna´ndez R. Factors contributing to caregivers’ stress and burden in Parkinson’s disease. Acta Neurol Scand 2015: 131: 203–210. © 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd. Background and objective – To analyze the main determinants of burden and stress in caregivers of Spanish Parkinson’s disease (PD) patients. Methods – One-hundred and twenty-one non-demented patients with PD (57.9% males; 70.9  8.2 years old) were included in this cross-sectional, monocenter, evaluation study. Caregivers (n = 121; 71.9% females; 60.2  15 years old) were assessed using the Zarit Caregiver Burden Inventory (ZCBI) and Caregiver Strain Index (CSI). Multiple linear regression methods were used to evaluate factors contributing to caregivers’ stress and burden: (i) PD motor dysfunction (ON-state Hoehn & Yahr/Unified Parkinson’s Disease Rating Scale [UPDRS] part III and motor complications [UPDRS part IV]); (ii) Mood (Beck Depression Inventory [BDI]); (iii) Nonmotor symptoms (Non-Motor Symptoms Scale [NMSS]); (iv) Disability (Schwab & England Activities of Daily Living Scale [ADLS]); and (v) Socio-demographic and other disease-related variables. Results – Zarit Caregiver Burden Inventory and CSI mean scores were 16  13.9 and 2.1  2.3, respectively. High correlation was found between ZCBI and CSI (r = 0.819; P < 0.0001). Moderate to severe burden (ZCBI > 40) was present in 9.1% of caregivers; 5.8% had high levels of stress (CSI ≥ 7). Moderate to strong correlations were observed between patient-related variables (Hoehn&Yahr, UPDRS-III, UPDRS-IV, BDI, NMSS, and ADLS) and ZCBI and CSI (P < 0.0001). Linear regression methods showed that ADLS had the strongest influence on ZCBI and CSI, followed by BDI on ZCBI. Conclusions – Disability (ADLS) and mood (BDI) of patients with PD are the main factors contributing to burden and stress in caregivers. Introduction

Parkinson’s disease (PD) is a progressive neurodegenerative disorder causing motor and non-motor symptoms that result in disability and loss of patient autonomy (1). The majority of patients with PD are looked after by family members or friends, who experience distress and problems impacting on physical, mental, and socioeconomic aspects of their lives (2). The impact of the disease on caregivers is present across all stages of disease, and there is a growing body of the literature detailing the negative effects of PD on caregivers’ lives (2–9). For example, Smith et al. (3) documented that caregiver’s sleep disturbance was predicted by patient’s own rating of depression and Meara et al. (4) found that patient depression

D. Santos-Garcıa, R. de la Fuente-Fernández Section of Neurology, Complejo Hospitalario Universitario de Ferrol (CHUF), Hospital A. Marcide, Ferrol, Spain

Key words: burden; caregiver; daily living activities; depression; Parkinson’s disease; quality of life D. Santos García, Section of Neurology, Complejo Hospitalario Universitario de Ferrol (CHUF), Hospital A. Marcide, C/ San Pedro Leixa s/n, 15405 Ferrol, Spain Tel.: 981 334000 Fax: 981 334015 e-mail: [email protected] This study was presented in abstract form at the XX World Congress on Parkinson’s Disease and Related Disorders held in Geneva, Switzerland (8–11 December, 2013). Accepted for publication August 13, 2014

strongly correlated with the presence of depressive symptoms in the carer. Patients’ neuropsychiatric symptoms (especially depression, visual hallucinations and cognitive impairment), falls, disease stage, and disability are identified as predictors of caregiver burden (4–9). Caregivers’ emotional strain is an independent risk factor for mortality among elderly spousal caregivers (10) and failure to address caregiving burden contributes to patient institutionalization in PD and other chronic diseases (11, 12). Overburdened caregivers have worse quality of life (QoL), which is detrimental to patient care (2, 4, 6, 13). In fact, QoL is significantly worse in patients with PD whose caregiver has higher burden and stress (14). Therefore, to conduct appropriate interventions, it is important to identify the risk factors that impact 203

Santos-Garcıa & Fuente-Ferna´ndez negatively on caregiver health and well-being. Moreover, this should be performed as soon as possible even when patients have no cognitive or psychotic symptoms because early non-pharmacological interventions may help to reduce caregiver burden, premature institutionalization of patients, and may improve quality of life for patients, their families, and their caregivers. The aim of this study was to (i) assess the level of burden severity in caregivers of non-demented patients with PD; (ii) investigate the relationships between PD patients’ QoL and caregiver distress; and (iii) identify the main factors contributing to burden and stress in caregivers. Materials and methods

Patients with PD and their principal caregivers attending the Neurology Unit of Hospital A. Marcide of Ferrol (Spain) were included in this cross-sectional, monocenter, observational study. The recruitment period was from May 10, 2012 to December 24, 2012. All patients were diagnosed according to UK PD Brain Bank criteria (15). Exclusion criteria were age 40). CSI scores were between 0 and 9; only seven patients (5.8%) had high levels of stress (CSI ≥ 7). High correlation was found between ZCBI and CSI (r = 0.819; P < 0.0001). Moderate to strong

70.9  8.2 57.9 6.8  5 2.1  0.7 13.2 12.4 38 20.7 14 1.6 16.8  9.5 2.4  2.5 73.2  21.8 13  8.7 67.4  53.3 9.6  12.6 24.8  20.8 20.1  22 4.2  12.5 16.2  22.4 14.6  18.9 31.4  31.2 31.8  35.9 16  18.1

correlations were observed between diseaserelated variables (ON-HY, ON-UPDRS-III, UPDRS-IV, NMSS, BDI, and ADLS) and ZCBI and CSI (Table 2). Disease duration correlated moderately to ZCBI (r = 0.307; P = 0.001) and weakly to CSI (r = 0.246; P = 0.006). A clear relationship was found between patients’ QoL (PDQ-39SI and PQ-10) and caregivers’ burden and stress (Fig. 2, Table 2). No significant associations or correlations were observed between ZCBI and CSI scores and other patient and caregiver socio-demographic variables. Multiple linear regression methods showed that ADLS had the strongest influence on ZCBI and CSI, followed by BDI on ZCBI. Table 3 shows the model considering ZCBI and CSI as dependent variables and disease duration, ON-HY, ON-UPDRS-III, UPDRS-IV, NMSS, BDI, and ADLS as independent variables according to the previously planned model. Virtually identical results were obtained when other socio-demographic patient-related (age and sex) and caregiver-related (age, sex, relationship, education, employment, and care time) variables were also included in the model as covariates. As expected, when patients with PD were classified according to ADLS score, significantly higher ZCBI and CSI scores were observed in caregivers of patients with lower levels of autonomy for activities of daily living (ADL; Fig. 3).

30  20.7 6.2  2

Discussion

Table 1 Clinical and socio-demographic characteristics of patients (n = 121) and their caregivers (n = 121) Mean  SD; % Patients Age Males, % Disease duration (years) Hoehn &Yahr (ON) Stage 1, % Stage 1.5, % Stage 2, % Stage 2.5, % Stage 3, % Stages 4–5, % UPDRS-III (ON) UPDRS-IV ADLS BDI* NMSS total score Cardiovascular Sleep/fatigue Mood/apathy Perceptual problems/hallucinations Attention/memory Gastrointestinal Urinary Sexual** Miscellaneous Quality of life PDQ-39SI PQ-10*** Caregivers Age Females, % Relationship Spouse Son or daughter Other Education Primary education or no formal education Secondary education University education Unemployed, % Full time care ZCBI Little or no burden (0–10), % Mild to moderate burden (3, 4, 21–38), % Moderate to severe burden (41–60), % Severe burden (61–88), % CSI High level of stress (7–13)

60.2  15 71.9 66.9 30.6 2.5 67.2 18.5 14.3 72.7 66.9 16  13.9 71.9 19 9.1 0 2.1  2.3 5.8

ADLS, Activities of Daily Living Score; BDI, Beck Depression Inventory; CSI, Caregiver Strain Index; NMSS, Non-motor Symptoms Scale; PDQ-39SI, 39-item Parkinson0 s disease Quality of Life Questionnaire Summary Index score; UPDRS, Unified Parkinson’s Disease Rating Scale (part III, motor examination; part IV, motor complications); ZCBI, Zarit Caregiver Burden Inventory. NMSS scores were divided by the maximum possible value and then multiplied by 100. *1 patient did not return the BDI; **11 patients did not respond to items 25 and/or 26 (sexual domain); ***for PQ-10, n = 88 (16).

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In this study, we investigated a number of factors that could contribute to caregivers’ stress and burden. Because higher caregiver strain is detrimental to patient care, early identification of factors contributing to caregiver strain is essential Table 2 Correlations of Hoehn & Yahr, UPDRS-III, UPDRS-IV, ADLS, BDI, NMSS, PDQ-39SI, and PQ-10 to ZCBI and CSI (n = 121)

Hoehn &Yahr (ON) UPDRS-III (ON) UPDRS-IV NMSS BDI ADLS PDQ-39SI PQ-10

ZCBI score

CSI score

0.442 0.421 0.387 0.595 0.619 0.660 0.705 0.590

0.393 0.384 0.334 0.585 0.521 0.595 0.604 0.427

ADLS, Activities of Daily Living Score; BDI, Beck Depression Inventory; CSI, Caregiver Strain Index; NMSS, Non-motor Symptoms Scale; PDQ-39SI, 39-item Parkinson0 s disease Quality of Life Questionnaire Summary Index score; UPDRS, Unified Parkinson’s Disease Rating Scale (part III, motor examination; part IV, motor complications); ZCBI, Zarit Caregiver Burden Inventory. Spearman’s rank correlation coefficient, all significant at P < 0.0001.

Caregiver burden in Parkinson0 s disease PDQ-39SI (0–100) n = 121

23.3 ± 17.3

40.4 ± 15.2

61.8 ± 17.6

PQ-10 (0–10) n = 88

6.7 ± 1.9

5.4 ± 1.6

4.1 ± 1.2

P < 0.0001 ZCBI ≤ 20 (n = 87)

ZCBI 21–40 (n = 23)

ZCBI > 40 (n = 11)

P = 0.001 ZCBI ≤ 20 (n = 63)

ZCBI 21–40 (n = 18)

ZCBI > 40 (n = 7)

Figure 2. Relation between patients’ with PD QoL (PDQ-39SI and PQ-10 scores) and caregivers’ burden (little or no burden vs mild to moderate burden vs moderate to severe burden). Table 3 Determinants of burden (ZCBI) and stress (CSI) among Parkinson’s disease caregivers

Independent variables ZCBI score Disease duration Hoehn &Yahr (ON) UPDRS-III (ON) UPDRS-IV NMSS BDI ADLS CSI score Disease duration Hoehn &Yahr (ON) UPDRS-III (ON) UPDRS-IV NMSS BDI ADLS

R2 * adjusted

Standardized regression (beta) coefficients

t

P value

0.045

0.550

Factors contributing to caregivers' stress and burden in Parkinson's disease.

To analyze the main determinants of burden and stress in caregivers of Spanish Parkinson's disease (PD) patients...
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