Next Article in Journal
Cerebrospinal Fluid Parameters in Antisense Oligonucleotide-Treated Adult 5q-Spinal Muscular Atrophy Patients
Next Article in Special Issue
Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives
Previous Article in Journal
Regional Gray Matter Volume Changes in Parkinson’s Disease with Orthostatic Hypotension
 
 
Search for Articles:
Title / Keyword
Author / Affiliation / Email
Journal
Article Type
 
 
Advanced Search
 
Section
Special Issue
Volume
Issue
Number
Page
 
Journals
Brain Sciences
Volume 11
Issue 3
10.3390/brainsci11030295
brainsci-logo
Submit to this Journal Review for this Journal Propose a Special Issue
► Article Menu

Article Menu

share Share announcement Help format_quote Cite question_answer Discuss in SciProfiles thumb_up
...
Endorse textsms
...
Comment
first_page
settings
Order Article Reprints
Font Type:
Arial Georgia Verdana
Font Size:
Aa Aa Aa
Line Spacing:
Column Width:
Background:
Article

One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects

by
Martin Klietz
1,*,†,
Hannah von Eichel
1,†,
Theresa Schnur
1,
Selma Staege
1,2,
Günter U. Höglinger
1,2,
Florian Wegner
1,2,† and
Stephanie Stiel
3,†
1
Department of Neurology, Hannover Medical School, 30625 Hannover, Germany
2
Center for Systems Neuroscience, 30625 Hannover, Germany
3
Institute for General Practice, Hannover Medical School, 30625 Hannover, Germany
*
Author to whom correspondence should be addressed.
†
Both authors contributed equally to this work.
Brain Sci. 2021, 11(3), 295; https://doi.org/10.3390/brainsci11030295
Submission received: 21 January 2021 / Revised: 18 February 2021 / Accepted: 23 February 2021 / Published: 26 February 2021
(This article belongs to the Special Issue Caregiver Burden in Movement Disorders and Neurodegenerative Diseases)
Versions Notes

Abstract

:
Parkinson’s disease (PD) is a slowly progressive neurodegenerative movement disorder that leads to impairments in activities of daily living. In addition to reducing patients’ quality of life, this disease also affects caregivers’ well-being. Until recently, caregiver burden was mainly assessed by generic questionnaires, which do not take the characteristics of the chronic disease into consideration. In the case of PD, this issue has been addressed by the introduction of the “Parkinson’s disease caregiver burden” questionnaire (PDCB). Data on longitudinal trajectories of caregiver burden are still missing in the literature. In this study, we assessed the one-year trajectory of caregiver burden by the PDCB as a disease-specific questionnaire. Further, gender-specific aspects of caregiver burden were analyzed by applying a caregiver task questionnaire. PDCB total score (n = 84 patients and caregivers) did not significantly change from baseline (30.4) to one year at follow-up (31.5). No significant difference was detected between female and male caregivers in global burden and-specific caregiver tasks. Our data showed only a mild increase of caregiver burden in the timeframe of one year. Gender-specific differences do not seem to impact-specific caregiver tasks in the presented study population.

1. Introduction

Parkinson’s disease (PD) is a progressive neurodegenerative disease leading to an enormous reduction of quality of life and increasing the need for care [1,2]. A huge amount of care for advanced PD patients is provided by informal caregivers [3]. These caregivers experience a large burden, which can lead to physical and psychological complaints [4]. Furthermore, an excessive burden can cause depression and, eventually, lead to burnout of the caregiver, which may result in institutionalization of the PD patient [5].
Measurement of caregiver burden is complex and time-consuming. Generally, caregiver burden in PD is assessed by generic questionnaires. These tests do not explicitly evaluate all specific aspects of caregiver burden in PD, although the course of PD is different from other geriatric diseases, e.g., due to various motor and non-motor symptoms and long disease duration with progressive impairments in the activities of daily living [6,7]. The recently developed and validated Parkinson’s disease caregiver burden questionnaire (PDCB) offers a special opportunity to study disease-specific aspects of caregiver burden in PD [8]. However, no longitudinal data were obtained by using the PDCB for the assessment of PD caregiver burden. Further, the impact of caregivers’ gender on-specific aspects of caregiver burden is still not known in PD.
This study aims to characterize the one-year-longitudinal trajectory of caregiver burden in a German cohort of PD caregivers’ overall disease stages and analyses gender-specific aspects of burden due to caregiving.

2. Materials and Methods

2.1. Participants

The local ethics committee of Hannover Medical School provided ethical approval (no. 3178-2016, Amendment in 2018). At baseline (03/2019), our sample included 124 PD patients and their 124 primary caregivers, who have all given their written informed consent. After one year (03/2020), we contacted these patients and caregivers again for a follow-up investigation. Questionnaires were sent via mail, and, in case of no answer, participants were contacted to get further information about their drop out. Of the 124 initial participants, 89 responded in the follow-up investigation. Participants who did not take part in the follow-up were also excluded from the baseline. The PD patients included in the study had been diagnosed with a neurologically determined PD for at least one year at baseline. Only patients who met the Movement Disorder Society (MDS) clinical diagnostic criteria for PD [9], lived at home and had not been diagnosed with atypical Parkinsonism were included in the analysis together with their primary caregiver (mostly spouses). In the case of multiple caregivers, only one caregiver spending the most time with the patient and handling most of the care issues was considered in the study. Professional caregivers were excluded. Dropouts of the study were either not contactable, had been transferred into institutional care or the caregiver was not able to complete the follow-up questionnaire. Participants did not receive any financial compensation for participating in the study.

2.2. Measures

The patients’ PD impairments were classified with the Hoehn and Yahr stage, which has a minimum of 1 point (unilateral symptoms) and a maximum of 5 points (confinement to bed or wheelchair) [10].
To assess health-related quality of life (HR-QoL), patients filled out the Parkinson’s disease quality of life questionnaire 8 (PDQ-8) [11], which evaluates patients’ functioning and well-being in 8 different domains. Patients were examined using 8 questions on a 5-point Linkert scale ranging from 0 to 4 with higher values denoting lower HR-QoL. The total score, which ranged from 0 to 32 points, was then converted in the percentage of HR-QoL restrictions. A high percentage point indicated more severe HR-QoL restrictions of the PD patient. To avoid anosognosia and ensure correct results, caregivers were asked to support patients who had a disease-related impairment in completing the PDQ-8 (as also done in [12,13,14]).
We asked the PD patients to fill out the Movement Disorders Society unified Parkinson’s disease rating scale (MDS-UPDRS) part I and part II [15,16] to evaluate the patients’ impairment of daily living regarding non-motor symptoms (part I) and motor impairments (part II).
Patient and caregiver depressive symptoms were assessed by Beck’s depression inventory [17] (BDI, depressive symptoms ranging from 0–63 points: 0–13 no depression, 14–19 mild depression, 20–28 moderate depression, 29–63 severe depression).
General information, such as age, patients´ disease duration and daily amount of care time dedicated to the patients, were also collected from the caregivers.
A validated German version of the Parkinson´s disease caregiver burden questionnaire (PDCB) was then distributed to the caregivers [8,14]. The questionnaire includes 20 items on a 5-point Likert scale (0 to 4), and the participants can score a maximum of 80 points on this first part of the questionnaire. In the second part, participants were also asked to rate their global burden as a caregiver on a scale from 0 to 100. Finally, points from the first part and 20% of the global burden were summed up for the total caregiver burden score; the highest possible burden corresponds to the maximum score of 100. These 20 questions can also be grouped into 7 subscales [8]. In each subscale, the maximum points available depending on the number of questions included in the subscale. By summing up the points of the individual questions, one obtains the number of points in each subscale.
The short-form 36 health survey (SF-36) [18] measures the HR-QoL of the caregivers across eight dimensions. The subscale scores are given as a percentage, with a score of 0 indicating maximum impairment and a score of 100 indicating the absence of any reported impairment. To account for the high correlation between the subscale scores, we calculated an average score across the eight scales [19].
Caregivers answered a caregiver task questionnaire, which includes 12 items describing different caregiver tasks, adapted from Rowland et al. [20]. Each item has a score ranging from 0 to 10 points, with 0 representing no burden and 10 an unbearable burden. This questionnaire aims to determine the tasks which are considered to be the most stressful for the caregivers. The total score results from the sum of all individual items and has a minimum of 0 and a maximum of 120 points.

2.3. Analyses

Data were displayed in mean and standard deviation (SD) for descriptive analysis. Values with p < 0.05 were considered statistically significant. A Wilcoxon test was used to determine the significance of changes between t0 (baseline) and t1 (one-year follow-up) for the PDCB and its subscales. Gender-specific differences (male/female) for the patient and caregiver characteristics were calculated by using t-tests for interval scales (such as sum and total scores from PDQ-8, MDS-UPDRS part I and part II, BDI, Caregiving hours per day, PDCB, BDI, and SF-36 total) and a chi-squared test for the ordinal scale Hoehn and Yahr stage). Analyses were carried out using SPSS v25.0 (IBM, Armonk, NY, USA).

3. Results

3.1. Patient and Caregiver Characteristics

The demographic and clinical characteristics of 89 patients with PD and their 84 caregivers from baseline and one-year follow-up are shown in Table 1. Over one year, the outcome variables have slightly changed. Regarding the caregiver burden as the main interest of our study, caregivers did not develop significantly more caregiver burden measured by the PDCB over one year (Table 2). The patients’ HR-QoL (measured by PDQ-8:33.2 ± 21.2 at t0 and 34.8 ± 17.8 at t1), motor impairment of daily living (UPDRS part II: 17.0 ± 11.0 at t0 and 17.7 ± 10.6 at t1) and depression (BDI: 11.4 ± 7.6 at t0 and 12.0 ± 8.0 at t1) remained stable in the time-span of one year. Stable results were also observed for the caregivers who spent 5.3 ± 6.6 h per day caregiving the patients at t0 and 5.5 ± 6.5 h at t1 and reported an average depression score of 9.4 ± 6.8 at t0 and 9.2 ± 6.8 at t1.

3.2. Longitudinal Trajectory of Caregiver Burden in Parkinson’s Disease

A Wilcoxon regression was performed to evaluate whether the PDCB total score or one of the subscales differed at one-year follow-up. The PDCB total score has not changed significantly (30.4 ± 16.4 at t0 and 31.5 ± 16.0 at t1), neither have its subscales nor the PDCB global burden scale (31.6 ± 26.3 at t0 to 33.3 ± 25.6 at t1). By normalizing the score of the PDCB subscales with the number of questions in each subscale, we found the lowest value in the subscale “physical burden” (1.6 ± 1.6 at t0 and 1.6 ± 1.6 at t1), whereas the highest burden was detected in the subscale “patient and self-relationship” (4.5 ± 2.9 at t0 and 4.9 ± 3.2 at t1). All subscale scores remained constant over the one-year follow-up.
In Appendix A and Appendix B, recruitment issues were carefully addressed to clarify differences between participants at the follow-up and dropouts, including reasons for dropping out. The population which dropped out at the follow-up was more burdened, displayed more depressive symptoms, spent more hours day caregiving and experienced worse HR-QoL.

3.3. Impact of Caregiver Gender on Caregiver Burden in Parkinson’s Disease

Patient and caregiver follow-up-characteristics were separately analyzed according to gender (Table 3). To examine gender-specific differences in caregiver burden, we carried out a t-test. No significant difference between female and male patients could be found, except for higher PD severity in the female group (Hoehn and Yahr chi = 0.012) and worse HR-QoL of the female PD patients (PDQ-8 I-test 0.030). Only age was significantly higher in male than in female caregivers (p = 0.005), while no difference could be detected in the caregiver burden (PDCB), the daily caregiving-hours, caregivers’ depression (BDI) or their HR-QoL (SF-36).
A caregiver task-questionnaire was adapted in order to investigate which tasks burden the caregiver the most and which ones show a gender-specific difference (Table 4). Caregivers felt most burdened by providing social and emotional support and by taking part in decision-making. The least burdening tasks were mobilizing or positioning the patient and alleviating symptoms. Overall, no difference was detected between female and male caregiver burden.

4. Discussion

In the present study, the longitudinal trajectory of caregiver burden was assessed in a German cohort of PD patients and their caregivers. Over the time-span of one-year, caregiver burden measured by the disease-specific questionnaire PDCB remained constant. Furthermore, the gender-specific burden was analyzed. In the study population, no differences in overall PDCB values between genders were detected. “Providing social and emotional support” and “taking part in decision-making” were the most burdensome activities as stated by the caregivers. Concerning gender-specific differences, no activity reached a statistical significance.

4.1. Longitudinal Trajectory of the Parkinson’s Disease Caregiver Burden

Caregiver burden is a complex construct of patient and caregiver factors resulting in depressive symptoms and reduced HR-QoL of the caregiver. There is a large body of evidence on how specific symptoms contribute to caregiver burden [21]. However, longitudinal data of observational studies were missing in the literature. In our one-year-trajectory study, no significant change could be shown by using the disease-specific PDCB questionnaire for the assessment of caregiver burden [8].
In several treatment trials for levodopa/carbidopa intestinal gel [22] or deep brain stimulation [23] of PD patients, caregiver burden was used as a secondary end-point. Lopiano et al. did not find a significant change of caregiver burden over a period of 3 years in PD patients treated with levodopa/carbidopa intestinal gel by using a generic caregiver burden questionnaire [24]. Another group reported data of 12 PD patients and their caregivers before and 6 months after initiation of levodopa/carbidopa intestinal gel therapy [22], showing a significant reduction of caregiver burden and other related caregiver outcome parameters measured by a generic caregiver burden questionnaire. Mosley et al. reported data from PD patients before and after subthalamic deep brain stimulation [23] without a significant difference between caregiver burden at baseline and last follow-up after 26 weeks using the Zarrit burden inventory [23].
However, to our knowledge, no data on the longitudinal trajectory of caregiver burden in PD is available from observational studies without changes in PD therapy. In most of the longitudinal studies, a generic caregiver burden questionnaire was used to assess burdened caregivers [25]. However, these questionnaires were not disease-specific and might neglect PD-specific features of caregiver burden, contrasting a disease-specific questionnaire [26,27,28].
Usage of the PDCB offers new opportunities to assess caregiver burden related to specific PD symptoms [13]. Interestingly, none of the subitems of the PDCB (e.g., physical burden, sleep disturbance, patient symptoms, responsibilities, patient medications, social burden and patient and self-relationship) showed a significant increase over one year in our present study. One reason for this might be that PD is a slowly progressive disease with only slightly increased mortality compared to non-PD elderly [29].
Further, these data must be interpreted with caution, as a third of the initial participants did not participate in the follow-up assessment. Greenwell et al. also identified the problem of dropouts at follow-up in PD caregivers [26]. Generally, burdened caregivers do not want to participate in observational studies or discontinue participation in the study because of severe burdens. These patients and their caregivers were therefore often neglected by studies. A recent international study focused on late-stage PD patients and their caregivers, describing moderate caregiver burden. Interestingly, this burden was not significantly different between patients in institutional care and outpatient PD patients [30]. Overall, caregiver burden measured by the Zarrit burden inventory showed stable results in several European countries in this study [25,30]. Other studies of different neurodegenerative diseases have reported a significant increase in caregiver burden over time. Connors et al. showed a significant increase in burden in relatives of people with dementia over a period of three years [31]. An increase of caregiver burden over a time period of 9 months was also shown for caregivers of amyotrophic lateral sclerosis (ALS) patients [32].

4.2. Impact of Gender on Caregiver Burden in Parkinson’s Disease

In the present study, the asymmetrical gender distribution of PD patients was observed. The larger fraction of PD patients were males, and, as most caregivers were their spouses, the caregiver group included more females, which is consistent with other studies of our group [12,13,14]. This is in line with the generally asymmetrical gender distribution in PD with a 1.6:1 relation of male to female patients [33]. Despite this fact, women with PD often experienced a more malignant disease course with faster progression and higher mortality rates [34]. In addition, female patients display several non-motor symptoms in a more severe manner, like fatigue, restless legs, constipation, depression, pain, impairment of taste or smell, weight changes and excessive sweating [35]. Further, Balzer-Geldsetzer et al. suggested female sex as a predictor for worse HR-QoL in the subdomains physical function and socio-emotional QoL, whereas male patients were more affected by cognitive restrictions in HR-QoL [36].
Based on these preconditions and since clear differences between the sexes in the course of PD have been described [37], the present study aimed to detect differences in gender-specific caregiver burden using a PD-specific caregiver burden questionnaire. However, no significant differences between female and male caregivers were detected in the study sample. In a further analysis, caregiver-specific tasks were evaluated in a gender-specific manner [20]. In none of the specific caregiver tasks (e.g., shopping, housekeeping, preparing/serving meal, general body care of the patient, mobilizing/positioning the patient, helping the patient during the night, alleviating symptoms, providing social/emotional support, gathering information, taking part in decision-making, managing administrative tasks, accompanying the patient to appointments) gender-specific burden could be detected. Regarding caregiver tasks, McLaughlin et al. showed that caregivers must adapt to many tasks of daily living of the patient during disease progression, which leads to progressive caregiver burden [28].
In a recent study, Lee et al. could also not identify gender-specific differences in the burden of PD caregivers [38]. Furthermore, this was confirmed by a community-based study from India with 150 PD patients and their informal caregivers [39]. In a more detailed study by Balash et al., female caregivers of PD patients reported twice as often as males to feel exhaustion and impaired health status from caregiving [40]. Moreover, social constraints and time limitations were more present in female caregivers of PD patients [40]. Another study by Grün et al. found that female caregivers caring for male patients subjectively experienced higher caregiver burden [41]. Additionally, female caregivers of patients with PD had a reduced quality of life compared to male caregivers [42]. However, Hooker et al. reported no gender differences in a cohort of 87 PD patients and their caregivers, contrary to more caregiver burden of female caregivers in a cohort of Alzheimer’s disease [43].
Interestingly, dystonia affects more female patients, and therefore, a larger proportion of male caregivers were evaluated in a recent study concerning caregiver burden, which was not pronounced under botulinum toxin therapy of the patients [19]. In a meta-analysis of predictors for general caregiver burden in chronic illnesses, Adelman et al. identified female sex as an individual risk factor [44]. In another study about people with multiple chronic conditions and their caregivers, the male sex of the caregiver was associated with the less impaired mental health of the caregiver [44,45]. The female sex of the caregiver could also be identified as an individual risk-factor for caregiver burden in a longitudinal cohort of caregivers of people with dementia [31].
With regard to gender-specific differences in other neurodegenerative disorders, such as ALS, Tramonti et al. reported a significantly higher burden among female caregivers of ALS patients [46]. In contrast, in another study on caregiver burden in ALS, caregivers did not show a difference between the sexes [47].
Combining the presented evidence, the gender of the caregiver may have some impact on caregiver burden. However, in our study, no differences in general and task-specific burden could be detected for caregivers of PD patients. Reasons for this stable outcome may be a successful medical therapy of the PD patients, the moderate number of participants, the drop out of most burdened caregivers or the asymmetrical gender distribution of caregivers.

4.3. Limitations

This study presents longitudinal data on caregiver burden in a German PD cohort. However, at the follow-up after one year, only 67.7% of the PD patients and caregivers participated in the second assessment. Unfortunately, a high proportion of severely affected patients and burdened caregivers refused a second assessment due to the huge amount of burden. This led to a selection bias in favor of the caregivers with less burden because the others no longer took part in the study. Although the variance of our data is quite large, most fining did not find significance. Larger sample size incomparable future studies may contribute to more significant findings. Further, since PD affects more males than females, we observed more male PD patients and female caregivers. Male caregivers were significantly older in our study cohort, which may also bias our results. Moreover, we were not able to match male and female caregivers in a one-to-one ratio for better comparability (data not shown). This matching should be considered in future studies with more participants. Hence, longitudinal prospective interventional studies are needed to determine the effect of specific potentially multidimensional interventions on the caregiver burden of female and male caregivers in the future. This study also did not evaluate patients’ comorbidities and medications [48,49].

5. Conclusions

Caregiver burden is a highly relevant issue in the care of PD patients. To our knowledge, this is the first study providing longitudinal data on caregiver burden measured by the PDCB. The longitudinal progression of caregiver burden in one year seems to be slow, as the disease also progresses slowly. Gender of the caregiver may contribute to the experienced caregiver burden; however, no significant differences in general and task-specific burden could be detected in the presented cohort. Despite negative results in this study, gender aspects of PD patients and their caregivers seem to be clinically relevant and should be addressed in future studies.

Author Contributions

M.K., S.S. (Stephanie Stiel), and F.W. designed the study with the assistance of H.v.E., M.K., H.v.E., S.S. (Selma Staege) and T.S. carried out the study. H.v.E., S.S. (Stephanie Stiel) and M.K. performed the statistical analysis. M.K., H.v.E. and S.S. (Stephanie Stiel) analyzed the data and wrote the first draft of the manuscript. F.W., T.S., S.S. (Selma Staege) and G.U.H., revised it critically for important intellectual content. All authors have read and agreed to the published version of the manuscript.

Funding

This study was conducted without specific funding.

Institutional Review Board Statement

The study was conducted according to the guidelines of the Declaration of Helsinki, and the local Ethics Committee of Hannover Medical School provided ethical approval (no. 3178-2016, Amendment in 2018).

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Data Availability Statement

Data are available on reasonable request to MK as the corresponding author.

Acknowledgments

Thanks to all the patients and their caregivers for participating in our study. We thank H. Elaman for the excellent language editing of the manuscript.

Conflicts of Interest

The authors have no conflicts of interest to report.

Appendix A

Table
Table A1. Comparison of baseline data of the dropouts with baseline date of the caregiver with completed follow-up.
Table A1. Comparison of baseline data of the dropouts with baseline date of the caregiver with completed follow-up.
Mean ± SD
(n = 84 with Follow-Up)		Mean ± SD
(n = 32 Drop-Outs)
Caregivers (at t0)
Age (years)65.1 ± 10.366.01 ± 13.0
Caregiving hours per day5.3 ± 6.56.9 ± 6.2
PDCB30.4 ± 16.437.8 ± 17.4
BDI9.4 ± 6.811.0 ± 8.5
SF—36 total67.7 ± 18.645.8 ± 33.8
Abbreviation: BDI, Beck’s depression inventory; PDCB, Parkinson’s disease caregiver burden questionnaire; SD, standard deviation; SF-36, short-form 36 health survey.

Appendix B

Table
Table A2. Reasons for drop out.
Table A2. Reasons for drop out.
Reason for Dropping Outn
Unreachable via mail/phone21
Very stressed at home (questioned by phone)8
Patient was no longer interested (vs. caregiver)3
Caregiver was no longer interested (vs. patient)3
Death of patient2
Nursing home2
Changed diagnosis (atypical Parkinsonism)1
Drop-outs: n = 40 (t1 n = 84; t0 n = 124).

References

  1. Klietz, M.; Tulke, A.; Müschen, L.H.; Paracka, L.; Schrader, C.; Dressler, D.W.; Wegner, F. Impaired Quality of Life and Need for Palliative Care in a German Cohort of Advanced Parkinson’s Disease Patients. Front. Neurol. 2018, 9, 120. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  2. Politis, M.; Wu, K.; Molloy, S.; Bain, P.G.; Chaudhuri, K.R.; Piccini, P. Parkinson’s Disease Symptoms: The Patient’s Perspective. Mov. Disord. 2010, 25, 1646–1651. [Google Scholar] [CrossRef] [PubMed]
  3. Martinez-Martin, P.; Rodriguez-Blazquez, C.; Forjaz, M.J. Quality of Life and Burden in Caregivers for Patients with Parkinson’s Disease: Concepts, Assessment and Related Factors. Expert Rev. Pharm. Outcomes Res. 2012, 12, 221–230. [Google Scholar] [CrossRef] [PubMed]
  4. Santos-Garcia, D.; de la Fuente-Fernandez, R. Factors Contributing to Caregivers’ Stress and Burden in Parkinson’s Disease. Acta Neurol. Scand. 2014, 131, 203–210. [Google Scholar] [CrossRef] [PubMed]
  5. Takai, M.; Takahashi, M.; Iwamitsu, Y.; Ando, N.; Okazaki, S.; Nakajima, K.; Oishi, S.; Miyaoka, H. The Experience of Burnout among Home Caregivers of Patients with Dementia: Relations to Depression and Quality of Life. Arch. Gerontol. Geriatr. 2009, 49, e1–e5. [Google Scholar] [CrossRef] [PubMed]
  6. Zhong, M.; Peppard, R.; Velakoulis, D.; Evans, A.H. The Relationship between Specific Cognitive Defects and Burden of Care in Parkinson’s Disease. Int. Psychogeriatr. 2016, 28, 275–281. [Google Scholar] [CrossRef]
  7. Hommel, A.L.A.J.; Meinders, M.J.; Lorenzl, S.; Dodel, R.; Coelho, M.; Ferreira, J.J.; Laurens, B.; Spampinato, U.; Meissner, W.; Rosqvist, K.; et al. The Prevalence and Determinants of Neuropsychiatric Symptoms in Late-Stage Parkinsonism. Mov. Disord. Clin. Pract. 2020, 7, 531–542. [Google Scholar] [CrossRef] [PubMed]
  8. Zhong, M.; Evans, A.; Peppard, R.; Velakoulis, D. Validity and Reliability of the PDCB: A Tool for the Assessment of Caregiver Burden in Parkinson’s Disease. Int. Psychogeriatr. 2013, 25, 1437–1441. [Google Scholar] [CrossRef]
  9. Postuma, R.B.; Berg, D.; Stern, M.; Poewe, W.; Olanow, C.W.; Oertel, W.; Obeso, J.; Marek, K.; Litvan, I.; Lang, A.E.; et al. MDS Clinical Diagnostic Criteria for Parkinson’s Disease. Mov. Disord. 2015, 30, 1591–1601. [Google Scholar] [CrossRef] [PubMed]
  10. Hoehn, M.M.; Yahr, M.D. Parkinsonism Onset, Progression, and Mortality. Neurology 1967, 17, 427. [Google Scholar] [CrossRef] [Green Version]
  11. Peto, V.; Jenkinson, C.; Fitzpatrick, R. PDQ-39: A Review of the Development, Validation and Application of a Parkinson’s Disease Quality of Life Questionnaire and Its Associated Measures. J. Neurol. 1998, 245 (Suppl. 1), S10–S14. [Google Scholar] [CrossRef]
  12. Klietz, M.; Schnur, T.; Drexel, S.C.; Lange, F.; Paracka, L.; Huber, M.K.; Dressler, D.; Höglinger, G.U.; Wegner, F. Alexithymia Is Associated with Reduced Quality of Life and Increased Caregiver Burden in Parkinson’s Disease. Brain Sci. 2020, 10, 401. [Google Scholar] [CrossRef]
  13. Klietz, M.; Schnur, T.; Drexel, S.; Lange, F.; Tulke, A.; Rippena, L.; Paracka, L.; Dressler, D.; Höglinger, G.U.; Wegner, F. Association of Motor and Cognitive Symptoms with Health-Related Quality of Life and Caregiver Burden in a German Cohort of Advanced Parkinson’s Disease Patients. Park. Dis. 2020, 2020, 1–8. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  14. Klietz, M.; Rippena, L.; Lange, F.; Tulke, A.; Paracka, L.; Dressler, D.; Wegner, F. Validating the Parkinson’s Disease Caregiver Burden Questionnaire (PDCB) in German Caregivers of Advanced Parkinson’s Disease Patients. Int. Psychogeriatr. 2019, 31, 1791–1800. [Google Scholar] [CrossRef] [Green Version]
  15. Goetz, C.G.; Tilley, B.C.; Shaftman, S.R.; Stebbins, G.T.; Fahn, S.; Martinez-Martin, P.; Poewe, W.; Sampaio, C.; Stern, M.B.; Dodel, R.; 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, 2129–2170. [Google Scholar] [CrossRef] [PubMed]
  16. Skorvanek, M.; Martinez-Martin, P.; Kovacs, N.; Zezula, I.; Rodriguez-Violante, M.; Corvol, J.-C.; Taba, P.; Seppi, K.; Levin, O.; Schrag, A.; et al. Relationship between the MDS-UPDRS and Quality of Life: A Large Multicenter Study of 3206 Patients. Parkinsonism Relat. Disord. 2018, 52, 83–89. [Google Scholar] [CrossRef] [PubMed]
  17. Beck, A.T.; Ward, C.H.; Mendelson, M.; Mock, J.; Erbaugh, J. An Inventory for Measuring Depression. Arch. Gen. Psychiatry 1961, 4, 561–571. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  18. Ellert, U.; Kurth, B.M. [Health Related Quality of Life in Adults in Germany: Results of the German Health Interview and Examination Survey for Adults (DEGS1)]. Bundesgesundheitsblatt Gesundh. Gesundh. 2013, 56, 643–649. [Google Scholar] [CrossRef]
  19. Drexel, S.C.; Klietz, M.; Kollewe, K.; Paracka, L.; Kutschenko, A.; Kopp, B.; Lange, F.; Wegner, F.; Dressler, D. Caregiver Burden and Health-Related Quality of Life in Idiopathic Dystonia Patients under Botulinum Toxin Treatment: A Cross-Sectional Study. J. Neural Transm. 2020, 127, 61–70. [Google Scholar] [CrossRef] [Green Version]
  20. Rowland, C.; Hanratty, B.; Pilling, M.; van den Berg, B.; Grande, G. The Contributions of Family Care-Givers at End of Life: A National Post-Bereavement Census Survey of Cancer Carers’ Hours of Care and Expenditures. Palliat. Med. 2017, 31, 346–355. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  21. Mosley, P.E.; Moodie, R.; Dissanayaka, N. Caregiver Burden in Parkinson Disease: A Critical Review of Recent Literature. J. Geriatr. Psych. Neur. 2017, 30, 235–252. [Google Scholar] [CrossRef] [PubMed]
  22. Ciurleo, R. Assessment of Duodopa Effects on Quality of Life of Patients with Advanced Parkinson’s Disease and Their Caregivers. J. Neurol. 2018, 265, 2005–2014. [Google Scholar] [CrossRef]
  23. Mosley, P.E.; Breakspear, M.; Coyne, T.; Silburn, P.; Smith, D. Caregiver Burden and Caregiver Appraisal of Psychiatric Symptoms Are Not Modulated by Subthalamic Deep Brain Stimulation for Parkinson’s Disease. NPJ Park. Dis. 2018, 4, 12. [Google Scholar] [CrossRef] [Green Version]
  24. Lopiano, L.; Modugno, N.; Marano, P.; Sensi, M.; Meco, G.; Solla, P.; Gusmaroli, G.; Tamma, F.; Mancini, F.; Quatrale, R.; et al. Motor and Non-Motor Outcomes in Patients with Advanced Parkinson’s Disease Treated with Levodopa/Carbidopa Intestinal Gel: Final Results of the GREENFIELD Observational Study. J. Neurol. 2019, 266, 2164–2176. [Google Scholar] [CrossRef] [Green Version]
  25. Zarit, S.H.; Todd, P.A.; Zarit, J.M. Subjective Burden of Husbands and Wives as Caregivers: A Longitudinal Study. Gerontologist 1986, 26, 260–266. [Google Scholar] [CrossRef]
  26. Greenwell, K.; Gray, W.K.; van Wersch, A.; van Schaik, P.; Walker, R. Predictors of the Psychosocial Impact of Being a Carer of People Living with Parkinson’s Disease: A Systematic Review. Parkinsonism Relat. Disord. 2015, 21, 1–11. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  27. Lageman, S.K.; Mickens, M.N.; Cash, T.V. Caregiver-Identified Needs and Barriers to Care in Parkinson’s Disease. Geriatr. Nurs. 2015, 36, 197–201. [Google Scholar] [CrossRef]
  28. McLaughlin, D.; Hasson, F.; Kernohan, W.G.; Waldron, M.; McLaughlin, M.; Cochrane, B.; Chambers, H. Living and Coping with Parkinson’s Disease: Perceptions of Informal Carers. Palliat. Med. 2011, 25, 177–182. [Google Scholar] [CrossRef] [PubMed]
  29. Macleod, A.D.; Taylor, K.S.M.; Counsell, C.E. Mortality in Parkinson’s Disease: A Systematic Review and Meta-analysis. Mov. Disord. 2014, 29, 1615–1622. [Google Scholar] [CrossRef] [Green Version]
  30. Kalampokini, S.; Hommel, A.L.A.J.; Lorenzl, S.; Ferreira, J.J.; Meissner, W.G.; Odin, P.; Bloem, B.R.; Dodel, R.; Schrag, A.-E. Caregiver Burden in Late-Stage Parkinsonism and Its Associations. J. Geriatr. Psych. Neur. 2020, 089198872096826. [Google Scholar] [CrossRef]
  31. Connors, M.H.; Seeher, K.; Teixeira-Pinto, A.; Woodward, M.; Ames, D.; Brodaty, H. Dementia and Caregiver Burden: A Three-year Longitudinal Study. Int. J. Geriatr. Psych. 2020, 35, 250–258. [Google Scholar] [CrossRef]
  32. Gauthier, A.; Vignola, A.; Calvo, A.; Cavallo, E.; Moglia, C.; Sellitti, L.; Mutani, R.; Chiò, A. A Longitudinal Study on Quality of Life and Depression in ALS Patient–Caregiver Couples. Neurology 2007, 68, 923–926. [Google Scholar] [CrossRef]
  33. Baldereschi, M.; Carlo, A.D.; Rocca, W.A.; Vanni, P.; Maggi, S.; Perissinotto, E.; Grigoletto, F.; Amaducci, L.; Inzitari, D. Parkinson’s Disease and Parkinsonism in a Longitudinal Study: Two-Fold Higher Incidence in Men. ILSA Working Group. Italian Longitudinal Study on Aging. Neurology 2000, 55, 1358–1363. [Google Scholar] [CrossRef] [PubMed]
  34. Dahodwala, N.; Shah, K.; He, Y.; Wu, S.S.; Schmidt, P.; Cubillos, F.; Willis, A.W. Sex Disparities in Access to Caregiving in Parkinson Disease. Neurology 2018, 90, e48–e54. [Google Scholar] [CrossRef] [PubMed]
  35. Martinez-Martin, P.; Pecurariu, C.F.; Odin, P.; van Hilten, J.J.; Antonini, A.; Rojo-Abuin, J.M.; Borges, V.; Trenkwalder, C.; Aarsland, D.; Brooks, D.J.; et al. Gender-Related Differences in the Burden of Non-Motor Symptoms in Parkinson’s Disease. J. Neurol. 2012, 259, 1639–1647. [Google Scholar] [CrossRef] [PubMed]
  36. Balzer-Geldsetzer, M.; Klotsche, J.; Dodel, R.; Riedel, O. Quality of Life in a German Cohort of Parkinson’s Patients Assessed with Three Different Measures. J. Neurol. 2018, 265, 2713–2722. [Google Scholar] [CrossRef] [Green Version]
  37. Meoni, S.; Macerollo, A.; Moro, E. Sex Differences in Movement Disorders. Nat. Rev. Neurol. 2020, 16, 84–96. [Google Scholar] [CrossRef]
  38. Lee, G.-B.; Woo, H.; Lee, S.-Y.; Cheon, S.-M.; Kim, J.W. The Burden of Care and the Understanding of Disease in Parkinson’s Disease. PLoS ONE 2019, 14, e0217581. [Google Scholar] [CrossRef]
  39. Sanyal, J.; Das, S.; Ghosh, E.; Banerjee, T.K.; Bhaskar, L.V.K.S.; Rao, V.R. Burden among Parkinson’s Disease Care Givers for a Community Based Study from India. J. Neurol. Sci. 2015, 358, 276–281. [Google Scholar] [CrossRef]
  40. Balash, Y.; Korczyn, A.D.; Migirov, A.A.; Gurevich, T. Quality of Life in Parkinson’s Disease: A Gender-Specific Perspective. Acta Neurol. Scand. 2019, 140, 17–22. [Google Scholar] [CrossRef] [PubMed]
  41. Grün, D.; Pieri, V.; Vaillant, M.; Diederich, N.J. Contributory Factors to Caregiver Burden in Parkinson Disease. J. Am. Med. Dir. Assoc. 2016, 17, 626–632. [Google Scholar] [CrossRef] [Green Version]
  42. Morley, D.; Dummett, S.; Peters, M.; Kelly, L.; Hewitson, P.; Dawson, J.; Fitzpatrick, R.; Jenkinson, C. Factors Influencing Quality of Life in Caregivers of People with Parkinson’s Disease and Implications for Clinical Guidelines. Park. Dis. 2012, 2012, 1–6. [Google Scholar] [CrossRef]
  43. Hooker, K.; Manoogian-O’Dell, M.; Monahan, D.J.; Frazier, L.D.; Shifren, K. Does Type of Disease Matter? Gender Differences Among Alzheimer’s and Parkinson’s Disease Spouse Caregivers. Gerontologist 2000, 40, 568–573. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  44. Adelman, R.D.; Tmanova, L.L.; Delgado, D.; Dion, S.; Lachs, M.S. Caregiver Burden: A Clinical Review. JAMA 2014, 311, 1052–1060. [Google Scholar] [CrossRef] [PubMed]
  45. Duggleby, W.; Williams, A.; Ghosh, S.; Moquin, H.; Ploeg, J.; Markle-Reid, M.; Peacock, S. Factors Influencing Changes in Health-Related Quality of Life of Caregivers of Persons with Multiple Chronic Conditions. Health Qual. Life Out 2016, 14, 81. [Google Scholar] [CrossRef] [PubMed] [Green Version]
  46. Tramonti, F.; Bongioanni, P.; Leotta, R.; Puppi, I.; Rossi, B. Age, Gender, Kinship and Caregiver Burden in Amyotrophic Lateral Sclerosis. Psychol. Health Med. 2014, 20, 41–46. [Google Scholar] [CrossRef]
  47. Burke, T.; Galvin, M.; Pinto-Grau, M.; Lonergan, K.; Madden, C.; Mays, I.; Carney, S.; Hardiman, O.; Pender, N. Caregivers of Patients with Amyotrophic Lateral Sclerosis: Investigating Quality of Life, Caregiver Burden, Service Engagement, and Patient Survival. J. Neurol. 2017, 264, 898–904. [Google Scholar] [CrossRef]
  48. Greten, S.; Müller-Funogea, J.I.; Wegner, F.; Höglinger, G.U.; Simon, N.; Junius-Walker, U.; Gerbel, S.; Krause, O.; Klietz, M. Drug Safety Profiles in Geriatric Patients with Parkinson’s Disease Using the FORTA (Fit fOR The Aged) Classification: Results from a Mono-Centric Retrospective Analysis. J. Neural. Transm. 2020, 1–12. [Google Scholar] [CrossRef]
  49. Klietz, M.; Greten, S.; Wegner, F.; Höglinger, G.U. Safety and Tolerability of Pharmacotherapies for Parkinson’s Disease in Geriatric Patients. Drug Aging 2019, 36, 511–530. [Google Scholar] [CrossRef]
Table
Table 1. Patient (n = 89, n = 34 females) and caregiver (n = 84, n = 54 females) characteristics.
Table 1. Patient (n = 89, n = 34 females) and caregiver (n = 84, n = 54 females) characteristics.
Mean ± SD (t0)Mean ± SD (t1)
PD patients
Age (years)68.3 ± 10.168.7 ± 10.1
Disease duration (years)10.8 ± 6.211.7 ± 6.5
Hoehn and Yahr stage2.8 ± 1.02.9 ± 1.0
PDQ-833.2 ± 21.234.8 ± 17.8
MDS-UPDRS part I11.0 ± 6.710.0 ± 5.1
MDS-UPDRS part II17.00 ± 11.017.7 ± 10.6
BDI11.4 ± 7.612.0 ± 8.0
Caregivers
Age (years)65.1 ± 10.366.2 ± 10.6
Caregiving hours per day5.3 ± 6.55.5 ± 6.5
PDCB30.4 ± 16.431.5 ± 16.0
BDI9.4 ± 6.89.2 ± 6.8
SF-36 total67.7 ± 18.664.0 ± 19.6
Abbreviations: BDI, Beck’s depression inventory; MDS-UPDRS, Movement Disorders Society Unified Parkinson’s Disease Rating Scale; PD, Parkinson’s disease; PDCB, Parkinson’s disease caregiver burden questionnaire; PDQ-8, Parkinson’s disease questionnaire 8; SD, standard deviation; SF-36, short-form 36 health survey; t0, baseline (03/2019); t1, follow-up (03/2020).
Table
Table 2. Longitudinal course of the “Parkinson’s disease caregiver burden” questionnaire (PDCB) subscales.
Table 2. Longitudinal course of the “Parkinson’s disease caregiver burden” questionnaire (PDCB) subscales.
PDCB SubscaleMean ± SD (t0)Mean ± SD (t1)Wilcoxon Test
Physical burden (2)1.6 ± 1.61.6 ± 1.60.71
Sleep disruption (2)2.5 ± 2.32.7 ± 2.10.69
Patient symptoms (5)6.9 ± 4.27.1 ± 4.10.87
Responsibilities (3)3.8 ± 2.93.9 ± 2.50.68
Patient medications (2)2.4 ± 2.12.4 ± 2.00.815
Social burden (3)2.5 ± 2.33.0 ± 2.30.17
Patient + self-relationship (3)4.5 ± 2.94.9 ± 3.20.35
PDCB global burden scale31.6 ± 26.333.3 ± 25.60.31
PDCB total30.4 ± 16.431.5 ± 16.00.44
The number of questions included in each subscale is shown in brackets. Abbreviations: PDCB, Parkinson’s disease caregiver burden inventory; SD, standard deviation; t0, baseline (03/2019); t1, follow-up (03/2020).
Table
Table 3. Patient and caregiver characteristics, separated by gender.
Table 3. Patient and caregiver characteristics, separated by gender.
Mean ± SD
Female (n = 33)		Mean ± SD
Male (n = 54)		p (t-Test)Chi-Squared
PD patients
Age (years)69.5 ± 11.168.2 ± 9.50.565
Disease duration (years)12.6 ± 7.99.57 ± 5.40.079
Hoehn and Yahr stage3.4 ± 0.82. ± 1.0 0.012 *
PDQ-840.0 ± 15.831.5 ± 18.40.030 *
MDS-UPDRS part I10.5 ± 4.79.6 ± 5.30.421
MDS-UPDRS part II19.9 ± 11.516.4 ± 9.80.139
BDI14.0 ± 7.810.7 ± 8.00.062
CaregiversMean ± SD
Female (n = 54)		Mean ± SD
Male (n = 30)		p(t-Test)Chi-Squared
Age (years)63.9 ± 10.070.6 ± 10.50.005 **
Caregiving hours per day4.8 ± 6.17.0 ± 7.00.158
PDCB31.4 ± 15.931.3 ± 16.30.984
BDI9.8 ± 7.07.6 ± 6.00.161
SF—36 total64.4 ± 18.663.6 ± 21.80.847
Abbreviations: BDI, Beck’s depression inventory; MDS-UPDRS, Movement Disorders Society unified Parkinson’s disease rating scale; PD, Parkinson’s disease; PDCB, Parkinson’s disease caregiver burden questionnaire; PDQ-8, Parkinson’s disease questionnaire 8; SD, standard deviation; SF-36, short-form 36 health survey. * indicates significance at p < 0.05; ** indicate significance at p < 0.01.
Table
Table 4. Caregiver task questionnaire.
Table 4. Caregiver task questionnaire.
Caregiver Task QuestionnaireMean ± SDMean ± SD
Female (n = 52)		Mean ± SD
Male (n = 30)		chi-Squared
(Female vs. Male)
Total score31.0 ± 25.829.9 ± 25.233.5 ± 27.50.821
Shopping2.2 ± 2.31.92 ± 2.32.5 ± 2.20.643
Housekeeping
(e.g., cleaning, ironing)		2.8 ± 2.82.6 ± 2.83.3 ± 2.70.302
Preparing/serving of meals2.4 ± 2.72.1 ± 2.62.8 ± 2.80.229
General body care (e.g., dressing/undressing, showering, toilet)2.4 ± 3.02.1 ± 2.83.0 ± 3.20.28
Mobilizing or positioning the patient1.8 ± 2.81.5 ± 2.72.3 ± 3.00.441
Helping patient during the night2.0 ± 3.01.6 ± 2.82.9 ± 3.30.142
Alleviating symptoms (e.g., on-demand medication)2.0 ± 2.51.9 ± 2.62.1 ± 2.20.629
Providing social/emotional support3.9 ± 2.84.0 ± 3.03.6 ± 2.50.428
Gathering information2.4 ± 2.52.7 ± 2.71.8 ± 2.10.163
Taking part in decision-making3.5 ± 3.03.8 ± 3.03.2 ± 2.90.454
Managing administrative tasks
(e.g., health insurance)		2.9 ± 3.13.0 ± 3.22.8 ± 2.30.36
Taking/accompanying the patient to, e.g., a doctor2.5 ± 3.02.3 ± 2.92.9 ± 3.10.29
Each subitem has a point value from a minimum of 0 and a maximum of 10 points, with 0 representing no burden and 10 representing an unbearable burden. The total score is obtained by adding the points of all answers. Abbreviations: SD, standard deviation.
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Share and Cite

MDPI and ACS Style

Klietz, M.; von Eichel, H.; Schnur, T.; Staege, S.; Höglinger, G.U.; Wegner, F.; Stiel, S. One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects. Brain Sci. 2021, 11, 295. https://doi.org/10.3390/brainsci11030295

AMA Style

Klietz M, von Eichel H, Schnur T, Staege S, Höglinger GU, Wegner F, Stiel S. One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects. Brain Sciences. 2021; 11(3):295. https://doi.org/10.3390/brainsci11030295

Chicago/Turabian Style

Klietz, Martin, Hannah von Eichel, Theresa Schnur, Selma Staege, Günter U. Höglinger, Florian Wegner, and Stephanie Stiel. 2021. "One Year Trajectory of Caregiver Burden in Parkinson’s Disease and Analysis of Gender-Specific Aspects" Brain Sciences 11, no. 3: 295. https://doi.org/10.3390/brainsci11030295

Note that from the first issue of 2016, this journal uses article numbers instead of page numbers. See further details here.

Article Metrics

Back to TopTop