Objective: To show results form a study on caregiving PPD from a relational perspective.
Background: Caregiving people with chronic neurological diseases like PPD can lead to a caregiver burden in primary caregivers. We understand caregiver burden as a multidimensional concept that includes feeling stress or strain, health and financial problems and diminished well-being associated with her/his caregiving task [1,2].
Method: Sample: 14 primary PPD’s caregivers (12 PPD had attended or attended a supporting group and 2 PPD did not participate actively but had been in contact sometime).
Instrument: Zarit Burden Interview (ZBI) [3,4] (cutoffs [5]). Qualitative information collected during the ZBI application.
Data collection: Oct 2019-Feb 2020, Feb 2021.
Data analysis: descriptive statistics, frequency analysis and non-parametric correlations (Spearman’s Rho, p≤.05) (SPSS 15 and Microsoft Excel). Qualitative description.
Ethical note: WMA Declaration of Helsinki [6]
Results: The mean caregivers age was 62.79 [±17.04], 57.1% (8 participants) had other family responsibilities, 50% (7) had working responsibilities, mean caregiving duration (years) was 8.61 [±4.78], 50% (7) were patients’ spouses.
The mean total ZBI score was 21.29[±17.68]; interestingly, the median was only 16 and the score amplitude was large (4-71). The 63.3% (9 participants) had little or no burden according to the reference cutoffs [5] and 21.4% (3) had mild burden.
Some interesting correlations were:
(a) total ZBI score positively correlated with the patient’s time from diagnosis (Rho=0.71, p=.006) and with the acknowledgement of patient’s cognitive difficulties (Rho=0.59, p=.027), and negatively correlated with the acknowledge of the patient’s possibility of independent mobility at home (Rho=-0.81, p=.0008).
(b) feeling of burden positively correlated with caregiving sharing (Rho=0.62, p=.017) and with the acknowledge of patient’s cognitive difficulties (Rho=0.62, p=.017), and negatively correlated with the acknowledge of patient’s independent mobility at home (Rho=-0.81, p=.0007).
We observed the Marianismo phenomena related to caregiving and gender in Latin culture [7,8].
Conclusion: We observed little caregiver burden. Although these results have limitations, we can suggest that having contact with a PPD support group could be associated with less caregiving burden, along with other cultural, contextual and patient’s symptomatic factors.
References: [1] Henry RS, Lageman SK, Perrin PB. The relationship between Parkinson’s disease symptoms and caregiver quality of life. Rehabilitation Psychology 2020, 65(2):137-44. http://dx.doi.org/10.1037/rep0000313 [2] Smith ER, Perrin PB, Tyler CM, Lageman SK, Villaseñor T. Parkinson’s Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model. Behav Neurol 2019, 2019: 1396572. https://doi.org/10.1155/2019/1396572 [3] Burden Interview. Headway – The Brain Injury Association – UK. https://www.headway.org.uk/media/3322/zarit-burden-interview.pdf [Last view March 8th, 2020] [4] Rajiah K, Maharajan MK, Yeen SJ, Lew S. Quality of Life and Caregivers’ Burden of Parkinson’s Disease. Neuroepidemiology 2017, 48: 131-137. https://doi.org/10.1159/000479031 [5] Stagg B, Larner AJ. Zarit Burden Interview: pragmatic study in a dedicated cognitive function clinic. Progress in Neurology and Psychiatry 2015, 19(4): 23-27. https://doi.org/10.1002/pnp.390 [6] World Medical Association. WMA Declaration of Helsinki – Ethical principles for medical research involving human subjects. The World Medical Association, Inc. Online:
To cite this abstract in AMA style:
M. Bacigalupe. Caregiving people with Parkinson’s disease (PPD) [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/caregiving-people-with-parkinsons-disease-ppd/. Accessed July 3, 2025.« Back to MDS Virtual Congress 2021
MDS Abstracts - https://www.mdsabstracts.org/abstract/caregiving-people-with-parkinsons-disease-ppd/