Abstract

Dementia is a progressive degenerative neurological disease with no known cure. The day-to-day responsibility of caring for a person with dementia represents considerable psychological, physical, social and financial burdens on carers. Caregiver interventions have demonstrated measurable benefits including: increased caregiver knowledge; reduced levels of anxiety and depression; increased carers’ coping ability and self-efficacy leading to delaying residential care placement for those with dementia. Our aim was to systematically review the literature relating to interventions for improving outcomes for carers of people with dementia to inform development of a complex psychoeducational intervention to improve quality of life (QoL) and outcomes for carers, and those they care for, with early dementia. Methods: Three categories of interventions were chosen for inclusion: psychoeducational, educational and multicomponent interventions. A systematic literature search of 17 scientific databases was performed, covering literature published up to November 2014. Reference lists from the articles identified were also scanned to ensure identification and inclusion of all relevant studies. The quality of the included studies was assessed according to the National Institute for Health and Clinical Excellence public health guidance and the Systematic Evidence Reviews & Clinical Practice Guidelines proposed by the National Heart, Lung and Blood Institute at the National Institutes of Health. Narrative analysis was used to synthesise the results. Results: Results from 81 papers showed that psychoeducational interventions for carers were successful in improving carer-related outcomes, such as depression, burden, self-efficacy and knowledge, but were less successful in improving patient-related outcomes, such as QoL, functional and behavioural problems, and institutionalisation. Educational interventions were successful in improving most carer and patient-related outcomes, except for depression, patient symptomatology and institutionalisation; whereas multicomponent interventions were found to be effective across various outcomes and only produced mixed results for care recipient institutionalisation. Results for the cost-effectiveness of interventions were scarce: one study found that a psychoeducational intervention reduced some costs of caregiving, while another study found no significant reductions. Additionally, a previous systematic review on cost-effectiveness included economic analyses of only two psychoeducational interventions: one found no significant changes in costs or outcomes and another reached no conclusion due to the heterogeneity and lack of studies. Conclusions: Overall, interventions for carers of people with dementia are effective across a number of carer-related outcomes, but less so for patient-related outcomes. More studies are required on the cost-effectiveness of interventions for carers of people with dementia before valid conclusions can be reached, but the existing evidence seems to suggest a lack of cost-effectiveness. Thus, psychoeducational, educational and multicomponent interventions may improve carers’ well-being. Results from this systematic review will inform future psychoeducational interventions designed to improve outcomes for carers of people with dementia.