Rehabilitation Research and Practice / 2014 / Article / Tab 1

Review Article

Understanding the Burden on Caregivers of People with Parkinson’s: A Scoping Review of the Literature

Table 1

Quantitative studies.

Study
(author, year)
Purpose Population/
sample
Research
design
Intervention Comparison Outcome
measures/
scales
Results

A’Campo et al. (2010) [24]Formative evaluation of standardized psychosocial education program on quality of life Caregivers
= 137
Parkinson’s patients
= 151
Quasiexperimental
design
8 weeks parallel program for Parkinson’s patient and caregivers None MMSE,
BELA-P-k,
BELA-A-k,
Bb, PDQ-39,
SDS, Nfh,
EQ-5D VAS, and
Mood VAS
Mood, social, and emotional functioning and achievement capabilities improved significantly (). Depression did not improve

Carter et al. (2008) [1]Understand motor and nonmotor symptom impact on caregiver strain 219 spouses,
mean age: 66.7
Correlational
design
None None FCI, CES-D, and
UPDRS
Nonmotor symptoms cause ×2–4-fold increase in burden ()

D’Amelio et al. (2009) [23]Determine predictors of caregiver burden 40 Parkinson patients and caregivers Correlational
design
None None CBI, HY, GDS, NPI,
UPDRS-ME, and
MMSE
Mental symptoms
() and Parkinson’s severity of disease (<0.0001) correlated with caregiver distress

Kelly et al. (2012) [11]Determine HRQoL in people with Parkinson’s and its effect on caregiver strain 97 caregiver dyads
84% spouse
(part of larger RCT study)
Cross-sectional correlational
design
None None EQ-5D,
PDQ-39,
MCSI,
6MWT, and
HY
Good HRQoL of PD patients correlated with low caregiver strain (rho 0.43, )

Leroi et al. (2012) [9]Determine care burden in apathy and impulse control in Parkinson’s
71 carer dyads Cross-sectional correlational
design
None Control group UPDRS,
HY, BIS-11,
AES-C, ZBI,
LEDD, and HADS
Care burden is significant in impulse control ( and )

de Villiers et al. (2008) [17] Investigate needs, roles, and experiences of primary caregivers in Parkinson’s 126 participants
77% female
27% male
Descriptive quantitative None None Developed
scale: no name
Isolation (57%)
Lack of time (47%)
Felt powerless (45%)
Felt stress (43%)
Finance issues (40%)
Physically drained (32%)

Rongve et al. (2010) [25]Identify sleep disturbances in subtypes of dementia and explore clinical correlates 151 participants Cross-sectional
comparative design
None Alzheimer’s disease NPI, Epsworth Sleepiness Scale, MSQ,
MADRS, REM,
More sleep disturbances in PD (89%) versus Alzheimer’s (64%).
Shim et al. (2011) [10]Understand correlates of care mutuality in Parkinson’s and Alzheimer’s disease 152 dyads for Parkinson’s and Alzheimer’s
91 control (16% attrition in control)
Retrospective multilevel
design
None Alzheimer’s disease and
control
MSFCI,
Lawton, IADL, and
CESD
Longer caregiving years (), and increased IADL () increase care mutuality; increased depression in carer decreased care-mutuality ()

Tokunaga et al. (2009) [19] Investigate caregiver burden 54 pairs Parkinson’s
48 pairs control
age 65 and older
Unmatched case control design None Frail elderly J-ZBI,
CES-D, and
DBD
Parkinson’s caregiver spent less time caregiving for ADLs (2.78 hours) compared to frail elderly (11.2 hours)

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