Impact of behavioural and psychological symptoms of dementia on carer burden and coping strategies

Abstract

Although cognitive symptoms are considered as the hallmark of dementia, behavioural and psychological symptoms (BPSD) are prominent during the course of illness and pose particular challenges to people living with dementia (PLwD) and their carers’ well-being. Numerous non-pharmacological interventions have been developed to address these challenges, yet evidence of their effectiveness is inconclusive. The inconsistency may be partly attributable to the diverse target population regarding dementia subtype and severity and intervention characteristics, such as content and intensity. In order to identify the best strategies to improve well-being of PLwD and their carers, this thesis aimed to investigate the relationship between BPSD and dementia stage, carer characteristics, and coping strategies through three studies.

Study 1 aims to identify the stage of dementia with the highest prevalence of affective symptoms through a meta-analysis that synthesised evidence from 5,897 people with dementia from 20 studies. Random-effects meta-analysis and meta-regression showed no evidence of any changes in the prevalence of depressive, anxiety, and apathy symptoms, as the illness progresses. Significant heterogeneity was observed in all reported prevalence rates.

Study 2 aims to investigate whether carer self-efficacy profiles associated with BPSD and contribute to burden and intervention response. Latent profile analysis was used to identify profiles of carer self-efficacy in 829 carers from a community dementia support service. Mixed ANOVA was used to analysed follow-up data at service exit from 360 carers. Four groups of carers were identified: high overall self-efficacy, average, low, and low in obtaining respite. The groups differed significantly in BPSD, with the high self-efficacy group reporting the lowest level of BSPD. Behavioural and mood symptoms affect carer burden most, regardless of self-efficacy profile. The groups also differed in response to support service, with low overall self-efficacy reporting improved self-efficacy and burden after intervention. BPSD appear to be modifiable among the low self-efficacy group.

Study 3 aims to identify carer self-initiated BPSD management strategies from 16 carers through focus groups and interviews. Thematic framework analysis identified six overarching themes: (1) maintaining personhood, (2) fulfilling unmet physical needs, (3) addressing lowered threshold, and (4) non-adapting, (5) controlling upsetting thoughts, and (6) obtaining respite. The strategies largely aligned with existing theoretical frameworks and may be influenced by cultural values and education level. Carers showed family care to PLwD and expressed difficulty taking time away from care, which may echo the belief of familism and enduring the unchangeable in Chinese culture. Person-centred care and social and emotional support were more likely to be mentioned by more educated carers.

BPSD, especially affective and behavioural symptoms, are important intervention targets across stages of dementia. The symptoms might be reduced by providing adequate knowledge and skills to carers. Through synthesising the work on carer self-initiated coping strategies and self-efficacy profiles, intervention components that may be most beneficial to particular groups of carers as defined by their self-efficacy profile have been suggested. Interventions that consider carer characteristics and coping strategies alongside the neuropsychiatric mechanism underlying BPSD could be beneficial to PLwD and their carers.