Table 4.
Summary data from key recent international PD studies of caregiver strain.
| Lead author, year | Country | Key findings | Caregiver | Caregiver scales and values | |||
|---|---|---|---|---|---|---|---|
| Questionnaire/index and domain | Mean (SD) |
Median/ IQR/ Range |
Correlations r |
||||
| n | |||||||
| Sex | |||||||
| Age (yrs), Mean (SD) | |||||||
| Balash, 2019 | Israel | Progression of PD can affect male and female CG differently; some females experienced more stress | n = 122 | Multi-dimensional Caregiver Strain Total Physical strain |
24.2 (14.9), f 15.4 (15.4), m | NR | NR |
| Bartolomei, 2018 | Italy | Sleep quality in PD was associated with caregiver burden and quality of life |
n= 57 21 m, 36 f 62.0 (12.0) |
Caregiver Burden Inventory | 9.0 (12.5) | NR | NR |
| Carrilho, 2018 | Brazil | Optimization of availabletreatment, with better control of PD severity, can decreaseburden among caregivers |
n = 21 80% f 53 (12.4) |
Zarit Burden Interview UPDRS |
28 | 0.48 (p = 0.026) | |
| Crespo-Burillo, 2018 | Spain | Deep brain stimulation was not associated with lower caregiver burden. Apathy in PD was associated with caregiver overload |
n = 11 66.0 (9.9) |
Zarit Caregiver Burden Inventory | 48.6 ± 17.8 | NR | ZBI and UPDRS-III 0.46 |
| Dahodwala, 2018 | USA | Caregiver strain was related to PD severity | n = NR | Multidimensional Caregiver Strain Index | 19.9 (16.7), Men 16.4 (15.1), Women |
NR | MCSI & co-morbidity 0.33 |
| Drexel, 2019 | Germany | Caregiver burden was noted for some dystonia patients. A small proportion of caregivers had burden |
n = 93 34 f 61.6 (13.5) |
Caregiver Burden Inventory and Hours of Caregiving | 8.6 (9.6) | 0-48 | Caregiving hours per day (r = 0.409, p = 0.001) |
| Genç, 2019 | Turkey | Almost half of caregivers showed burden. No significant differences between burden experienced in caregivers of early-stage and late-stage PD. |
n = 74 (G1 40 G2 34) G1 f 25 (62.5%) G2 f 26 (76.5%) G1 6.65 (15.75) G2 49.41 (14.32) |
Zarit Caregiver Burden Inventory | Little or no burden, G1 = 21 (52.5) G2 = 18 (52.9) Mild to moderate burden G1 = 15 (37.5) G2 =12 (35.3) Moderate to severe burden G1 =2 (5.0) G2 =3 (8.8) Severe burden G1 =2 (5.0) G2 = 1 (2.9) |
NR | NR |
| Henry, 2020 | USA | Difficulties with mobility, emotional well-being, and non-motor symptoms of PD were predictors of reduced caregiver QOL. |
n = 181 77.9% f 64.04 (10.50) |
PDQ-Carer | CG QOL items | NR |
|
| Self-care | 0.76 | ||||||
| Anxiety/depression | 0.78 | ||||||
| Activities | 0.80 | ||||||
| Mobility | 0.40 | ||||||
| ADL | 0.39 | ||||||
| Emotions | 0.38 | ||||||
| Cognition | 0.36 | ||||||
| Bodily discomfort | 0.25 | ||||||
| Non-motor | 0.42 | ||||||
| Karlstedt, 2019 | Sweden | Cognitive decline and poor ADL in PD was associated with CG burden |
n = 22 f 70.7 (9.3) |
Caregiver burden scale | 42.5 (15.8) | NR | NR |
| Klietz, 2020 | Germany | Motor UPDRS scores and patient's attentional symptoms were associated with caregiver burden |
n = 78 64.8 ± 11.0 |
German version Parkinson's disease caregiver burden questionnaire | 36.5 (27.1) | Range 0–100 | PDQ-8 (p 0.064) and UPDRS part III (p 0.086) showed a trend toward association with caregiver burden |
| Kumar, 2019 | Pakistan | Overall 62.8% caregivers were stressed; increasing stress and depression was related to PD progression. Most (86.7%) of the stressed caregivers were female (p < 0.0001) |
n = 156 49 (31.4%) f 47.75 (11.98) |
Caregiver Burden Inventory | NR | NR | NR |
| Lee, 2019 | Korea | CB associated with higher daily time in caregiving. Better understanding of PD in spouses correlated with less burden |
n = 142 72 m, 70 f 59.4 (14.4) |
Caregiver Burden Inventory | 52.0 (19.9) | 49.0 (range 25.0–111.0) | CBI and: daily care time: 0.41 (p = 0.000) Care duration: 0.19 (p = 0.024) |
| Macchi, 2020 | USA | Patient quality of life, anxiety and depression, and caregiver spiritual well-being contribute to caregiver burden | 175 131 f (73%) 66 (11) |
Zarit Burden Interview PDQ-39 PD QOL-AD Caregiver Reported HADS Anxiety Depression FACIT-SP spiritual well-being of caregivers |
17.4 (7.9) 58.1 ± 28.4 33.8 ± 6.0 7.4 ± 3.6 4.3 ± 3.1 33.5 ± 8.7 |
NR | 0.161 (p = 0.0001) 0.088 (p = 0.0001) 0.062 (p = 0.0014) 0.024 (p = 0.038) |
| Mosley, 2018 | Australia | Caregiver burden was unchanged after subthalamic deep brain stimulation |
n = 64 48 f, 16 m 58.3 (8.4) |
Zarit Burden Inventory | 21.4 (13.7) | 21 | NR |
| Rajiah, 2017 | Malaysia | QoL domains such as “stigma” and “emotional well-being” in PD were associated with caregiver burden |
n = 132 43 m, 87 f 45.1 (10.2) |
Zarit Burden Interview | 55.0 (19.2), mobility 39.0 (18.6), ADL 61.0 (17.4), emotional well-being 66 (16.8), stigma |
NR | 0.41 |
| Smith et al., 2019 | Mexico and America | Showed associations between PD-related impairments, caregiver burden, and caregiver mental health. Caregiver burden mediated the relation between PD-related impairments and caregiver mental health |
n = 253 68.6% f USA group 76.4% f Mexico group 68.73 (8:36) |
Short version Zarit Burden Inventory |
NR | NR | NR |
| Tan, 2019 | Singapore | Caregiver burden was associated with more prolonged disease, higher levodopa doses and motor fluctuations | n = 104 | Zarit Burden Inventory | 24.6 (15.3) | NR | NR |
| Tan, 2020 (this paper) | Singapore | Caregiver burden associated with PD disability, UPDRS mentation, behavior and mood subscale, and high scores on UPDRS ADL subscale |
N = 94 caregiver-PwPD dyads caregivers: 74 f |
Zarit Burden Inventory | 23.0 (13.2) | NR | ZBI and HY 0.34 (at best) 0.35 (at worst) ZBI and UPDRS 0.38 (mood) 0.50 (ADL) |
| Trapp et al. 2018 | Mexico | Caregiver burden mediated the relationship between family cohesion and quality of life |
n = 95 78 f 51.1 (13.9) |
Zarit Burden Interview | Family cohesion 24.26 (14.62) |
0–70 | −0.38 |
| Tessitore, 2018 | Italy | Statistically significant predictors of CB were caregiver need to change work and judgement of QoL. CB lower when treated with levodopa/carbidopa intestinal gel than continuous subcutaneous apomorphine or usual care |
n = 126 57.9 (12.9) |
Zarit Burden Inventory | LCIG−29.6 (14.4) | Work change: 23.6, 95%CI 10.4–36.8; P = 0.001 | |
| Torny, 2018 | France | The severity of non-motor signs, patients' and caregivers' mood, and motor disease severity are the main determinants of caregiver burden | 38 84% f 67.8 (9) |
Zarit Burden Inventory PDQ-8 PD NMSS (total) HADS Depression |
14.4 (12.7) 8.5 (6) 38 (41.6) 7.2 (4) 3.4 (4.2) |
0.27 (p = 0.007) 0.46 (P < 0.0001) 0.16 (p < 0.0125) 0.35 (p < 0.0001) |
|
| Vatter et al. 2018 | United Kingdom | Factor analysis revealed five burden dimensions (factors): 1. social & psychological constraints, 2. personal strain, 3. personal life, 4. concerns about future and 5. guilt. Factors were associated with lower relationship satisfaction, mental health, resilience, stress, anxiety, depression, resentment, negative strain, and PD motor severity. |
n = 127 85.3% f 69.44 (7.62) |
Zarit Burden Interview | 35.51 (15.4) | 35.00 2-74 |
factors 1 and 2 (r = 0.67), factors 2 and 3 (r =.67), factors 1 and 3 (r =.64) factors 3 and 4 (r =.62) |
| Yang, 2019 | China | Caregiver self-efficacy mediated caregiver burden, caregiver anxiety and depression. Caregiver burden was related to poor cognition and poor motor function in people with PD. |
n = 112 66 (58.9%) f 52.33 (13.43) |
Chinese version of Zarit Burden Interview | 19.58 ± 13.09 | 18.0 (0,59) | Caregiver burden & PD cognition −0.412 PD motor function 0.334 |
f, female; m, male; NR, not reported; CG, caregiver; PD, Parkinson's disease; PwPD, People living with PD; LCIG, levodopa/carbidopa intestinal gel; ADL, Activities of Daily Living; G, group.
Instruments: PDQ-39, Parkinson's Disease Questionnaire; MCSI, Multidimensional Caregiver Strain Index; CSI, Caregiver Strain Index; CBI, Caregiver Burden Inventory; ZBI, Zarit Burden Interview/Zarit Caregiver Burden Inventory; CSI, Caregiver Strain Index; PDCB, Parkinson's Disease Caregiver Burden Questionnaire; UPDRS, Unified Parkinson's Disease Rating Scale; HY; modified Hoehn & Yahr Scale; MMSE, Mini-Mental State Examination; (HR)QoL, (Health-related) Quality of Life.