Objective: To identify factors that cause the greatest levels of caregiver strain in moderate to advanced Parkinson’s Disease (PD)

Background: Many people with PD (PwP) will require care from either informal caregivers (e.g. wife/husband/family) or formal carers (paid carers) at home as their condition progresses.  Previous research investigating caregiver strain in PD shows that the vast array and complexity of motor and non-motor symptoms can have a profound effect on the informal caregiver.  There is a lack of knowledge about the factors that cause the greatest caregiver burden and it is not clear which caregivers are under the greatest burden.

Methods: All PwP, known to the Northumbria PD Service with Hoehn and Yahr stage 3 or above, living in their own home were invited to participate in the Care Needs Study. Data collection included demographics, rating scales for disease severity, quality of life and motor/non-motor symptoms. Informal caregivers were also invited to participate with data collection following an adapted Goldsworthy and Knowles Stress Appraisal Model (2008) and including caregiver coping strategies and personality types along with the quality of caregiver sleep. Caregiver burden was measured using the Carer Burden Inventory.

Results: Data were collected for 115 patient-carer dyads. The mean age of PwP was 73.4 years and 60.0% were male. The mean age of caregivers was 70.8 years and 35.7% were male. In multivariable linear regression modelling, problems with activities of daily living, memory and behavioural problems (Revised Memory and Behavioural Checklist) were the only factors associated with increased caregiver strain directly related to the PwP. However, caregiver health issues, poor caregiver sleep, administering medication, helping with bathing, having an active coping style and having a poor relationship with their partner emerged as significant caregiver factors associated with greater perceived burden.

Conclusions: Caregiver health and well-being, their role, and their personality were important in determining the perceived caregiver strain and need to be taken into consideration.

References: Goldsworthy B, Knowles S. Caregiving for Parkinson’s disease patients: an exploration of a stress-appraisal model for quality of life and burden. J Gerontol B Psychol Sci Soc Sci. 2008 Nov;63(6):P372-6.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/factors-that-contribute-to-the-greatest-levels-of-caregiver-strain-in-parkinsons/