The relationship between loneliness and quality of life in informal dementia caregivers : a thesis submitted in partial fulfilment of the requirement for the degree of Doctor of Clinical Psychology at Massey University, Auckland, New Zealand

Abstract

Background Informal caregivers are an essential part of dementia support in New Zealand. The number of people affected by dementia is increasing. Previous studies have indicated that informal caregivers are at risk of poor mental and physical health outcomes, due to the stressors in the caregiving role. These stressors have been identified as risk factors for loneliness. Research in other populations highlights strong links between loneliness and poor health outcomes. This research explored the relationship between primary caregiving stressors, loneliness, isolation and quality of life (QOL) within the framework of the Stress Process Model. Methods This research investigated hypothesised factors leading to loneliness and quality of life in a New Zealand sample of informal dementia caregivers (n= 134). It used a cross-sectional survey design and structured questionnaire to explore background and context factors (care duration, hours per week caregiving, relationship length and help hours per week), primary stressors (Activities of Daily Living dependency, frequency of challenging behaviour, caregiver reaction and relational deprivation), loneliness, isolation, and quality of life. Descriptive analysis, correlational analysis, confirmatory factor analysis and path analysis were used to examine the relationships between variables and conduct mediation analyses. Results The findings indicated that QOL was moderate, with the average rating between ‘neither good nor poor’ and ‘good’. The psychological domain was significantly lower than all other domains. Within the sample there was a high prevalence of loneliness (88%) and lower prevalence of isolation (21%). Overall QOL and QOL domains were significantly associated with total loneliness. Among the primary stressors, only the frequency of challenging behaviour correlated to loneliness. Both the frequency of challenging behaviour and caregiver reaction had significant correlations to QOL. Total loneliness partially mediated the relationship between primary stressors and QOL. Social loneliness was also found to partially mediate this relationship while emotional loneliness did not. Conclusions The findings show that there was a high prevalence of loneliness in the sample. They also show that primary caregiving stressors are associated with loneliness and that loneliness is associated with quality of life. This research highlights the importance of addressing loneliness in this population, suggests targeted loneliness interventions and recommends caregivers be screened for loneliness to increase access to appropriate support.