The psychosocial effects of becoming a carer: Predicting psychological distress and caregiver burden in family members and friends of older people with normal cognitive function, mild cognitive impairment and dementia over time

Dementia caregiving has been linked to negative physical and mental health outcomes for carers. However, the evidence is primarily based on cross-sectional research, with only a few longitudinal studies involving existing dementia carers. Therefore, little is known about the trajectories into caregiving or the predictors of deterioration of carers' wellbeing before and shortly after the onset of dementia or mild cognitive impairment (MCI).Based on Pearlin's multi-dimensional carer 'Stress Process Model', this thesis aims to establish the rates as well as the cross-sectional and longitudinal predictors of psychological distress and caregiver burden in family members and friends of 556 initially dementia-free elders who participated in a population-based study on cognitive ageing (i.e. the Sydney Memory and Ageing Study). Participants and their informants (i.e. family members or friends) were followed up biannually over four years. Multivariate latent growth curve modelling and cross-sectional path analyses were used to establish predictors of informants' psychological distress and caregiver burden. Psychological distress is a global mental health outcome, while caregiver burden reflects the specific impact of caregiving on carers.The dementia incidence was seven per cent over four years and informants reported good psychological health over time. Long-term increases in informants' psychological distress were mainly due to an increase in informants' subjective stress appraisals, secondary role strain, and self-rated health problems, while improved coping abilities were protective. In contrast, impairment-related stressors such as participants' cognitive impairment, functional decline or behavioural problems accounted for very little variance. Cross-sectionally, informants' psychological distress at follow-up was mostly explained by their levels of neuroticism, while caregiver burden was more strongly determined by objective impairment of participants' memory, function or behaviour.Despite the low dementia incidence and the overall low level of impairment, the results of this thesis are largely consistent with the existing cross-sectional dementia and MCI carer literature. The findings highlight the importance of promoting health and improving coping abilities through early interventions to prevent negative carer outcomes long-term. Latent growth curve modelling proved particularly advantageous in explaining why some carers do better than others