How do family carers respond to behavioral and psychological symptoms of dementia?

Abstract

ABSTRACTBackground: Behavioral and psychological symptoms of dementia (BPSD) have been associated with increased carer burden and early institutionalization. BPSD are more responsive to treatment than are cognitive and functional decline. Little is known about how family carers understand and try to reduce these symptoms. This study aimed to explore the strategies used by carers looking after someone with high levels of BPSD.Methods: Twenty-five carers were interviewed using a semi-structured interview with the Neuropsychiatric Inventory (NPI). They were all caring for someone eligible for an Extended Aged Care at Home Dementia Package, which targets people with BPSD.Results: Participants reported high levels of BPSD with a mean score of 8.2 for symptoms (range 2–12, SD = 2.38) and a mean NPI score of 51.4 (range 14–111, SD = 28.74). Distress scores were also high with a mean of 18.5 (range 2–42, SD = 11.33). Carers described on average, fewer than four strategies for managing BPSD. Encouraging activity, utilizing psychotropic medications, identifying triggers, restraining or treating in a paternalistic manner, and meeting physiological needs were the most commonly used strategies.Conclusion: While family carers are often at the forefront of identifying triggers and addressing unmet needs, findings from this study suggest that some carers have a limited repertoire of strategies despite experiencing a large number of symptoms. There is a clear need for ensuring evidence-based programs to educate and support carers in identifying triggers, understanding symptoms and learning to cope with these symptoms.