Emotion regulation and positive growth in spousal dementia carers

Abstract

BACKGROUND: Despite evidence that caring for a spouse or partner with dementia may continue over a number of years, our understanding of how the carer’s experience unfolds over time is still in its infancy. In addition, the emotional experience of spousal dementia carers has been incompletely understood in research and clinical practice with a predominant focus upon negative emotional consequences. There is a need to contextualise the emotional experience of carers within a framework that enables understanding of positive aspects of the care experience.

OBJECTIVE: This thesis is in two parts. Part one uses systematic review to critically evaluate evidence from published longitudinal studies that assess the impact of care transition (caring for spouse at home and placed spouse in care home) on the well-being of spousal dementia carers. Part two is an empirical study examining emotion regulation and positive growth in spouses who care for their partner with a diagnosis of dementia.

METHODS: Systematic review of longitudinal studies that assess the impact of care transition on spousal carer well-being. The empirical study comprised a cross-sectional design comparing positive growth and emotion regulation in three carer groups (caring for spouse at home, placed spouse in care home or experienced death of spouse). 183 carers were recruited through a postal survey which comprised the following self-report measures: Post Traumatic Growth Inventory; Basic Emotions Scale; and Regulation of Emotions Questionnaire.

SYSTEMATIC REVIEW RESULTS: Despite poorer psychological and physical well-being over time compared with non-carers, symptoms of depression, perceived burden and stress are stable over time for those who continue to care for their spouse at home. Mixed results are obtained for carer well-being when examining transition to permanent placement in care home and impede definitive conclusions.

EMPIRICAL STUDY RESULTS: Spousal carers report more frequent feelings of fear and frustration compared to other basic emotions. Gender and care transition impact upon the experience and regulation of emotion and positive growth.

Internalising emotion regulation strategies (for example, rumination) are associated with greater fear and frustration, sadness and guilt while strategies comprising social support seeking are associated with feelings of happiness in carers. Spouses report positive growth since taking on the role of carer and this is predicted in part by social support seeking emotion regulation strategies but not by experience of emotions.

CONCLUSIONS: Spousal carers are not a homogenous group. Further research on the experience of spousal dementia carers is required. This should include the development of tools and methods tailored to capture emotion regulation. The concept of positive growth following stressful events (for example, becoming a carer) may have potential for presenting an enriched understanding of the emotional consequences of the carer experience over time.