Coping and well-being in caregivers of people with Parkinson's disease

Abstract

Background and Purpose: The need to provide care for people with Parkinson’s disease (PD) will increase with the extended life expectancy of Singaporeans. Caring for people with PD in their own homes for as long as possible is argued to provide care recipients with psychosocial benefits as well as benefiting the community by delaying institutionalisation. The aims of this study were to profile the PD caregiving experience and to identify the types of coping strategies used by caregivers. Factors that affect caregiver well-being were also explored to evaluate the types of interventions and support that might facilitate the care of people with PD.

Methods: Guided by the theoretical framework of Lazarus’ cognitive theory of stress and coping, a mixed method study was designed. In Phase One, a cross-sectional survey of 94 caregivers was used to generate an overview of coping and quality of life of caregivers caring for care recipients with varying stages of PD. In Phase Two, 21 caregivers recruited from the first phase through a purposive stratified sampling technique were interviewed for a deeper understanding of caregiver experiences.

Results: The convergence of the quantitative and qualitative data obtained from this research revealed a complex and challenging range of biopsychosocial issues for caregivers. When PD disease severity increased, most caregivers experienced an increase in caregiver burden and a reduction in well-being. The mental health of caregivers was more affected than their physical health. Caregivers reported being frustrated with care recipient apathy when they did not cooperate with them. Although there is a need to provide physical care for people with PD, caregivers often reported providing care recipients with substantial emotional support. Most caregivers adopted adaptive coping strategies. However, the use of either adaptive or maldaptive coping strategies was associated with an increase in caregiver burden. Many caregivers reported that it was the responsibility of the health care system to provide adequate financial support and integrated PD services.

Conclusion: This investigation revealed that caregivers used predominately adaptive coping strategies and the use of maladaptive coping strategies was negatively associated with caregiver well-being. Caregiver burden had the highest impact on emotional well-being. The findings from this study inform future research on the caregiver experience and in planning appropriate and effective multidisciplinary interventions that support caregivers throughout the stages of Parkinson’s disease.

Recommendations: The findings of this study inform future research on caregiving as well as the development of supportive interventions for caregivers of people with Parkinson’s disease in Singapore.