Coping together with dementia: what facilitates effective emotional support between people with dementia and their family carers?

Using a dyadic perspective, this thesis sought to understand how people with dementia and their family carers experience and cope with stress together. In Chapter 2, a scoping review maps research on associations between the caregiving experience and self-reported wellbeing in people with dementia. Carers’ role-related appraisals, particularly positive aspects of caregiving, were most often associated with people with dementia’s wellbeing. Only one study investigated dyadic coping styles, highlighting a need for more work. In Chapter 3, through qualitative interviews, carers discussed experiences around providing emotional support to the person with dementia. Carers reported needing to take on more of the dyadic coping and difficulties providing the right support. Carers also felt that some “negative” coping styles (avoiding each other) could be temporarily beneficial in times of high emotional intensity. In Chapter 4, actor-partner modelling was used to explore individual differences in people with dementia that may moderate how they receive emotional support from the carer. When people with dementia did not feel competent, they reported fewer positive emotions when their carer frequently tries to improve the mood of others. Overall, the empirical research reported in this thesis found nuances in the context of dementia that may impact how the care dyad cope together. Through a mixed method approach, I provide evidence that each member of the dyad affects the other persons wellbeing. I also, identify specific factors that may contribute to the care dyad’s ability to maintain their wellbeing together. In Chapter 5, I build on previous individual stress process models to present the early stages of a dyadic stress process model in dementia to organise and situate the findings in this thesis.