Data gaps and limitations in understanding BPSD

Despite the high impact of BPSD on quality of life and care needs, there are no current national prevalence estimates of BPSD among people with dementia in Australia. While the primary Australian service planning model adopted in 2003 estimates that approximately 60% of people with dementia experience BPSD, estimates across the literature fluctuate depending on sample characteristics (community-based sample compared with residential aged care or hospital based) and measurement methodology (Brodaty, Draper and Low 2003). The estimates most recently reported by Australian studies range from 61–88% of people with dementia in the community setting, 29–90% of residents in Australian nursing homes and 95% of hospitalised patients in long term acute care (APH 2014). However, these estimates of BPSD prevalence are based on studies with smaller samples conducted between 1996 and 2001, highlighting the need for studies with more robust and representative samples and up-to-date prevalence estimates. In addition, while prevalence estimates indicate an increase in dementia over the next decade, there has been no research that confirms whether rates of BPSD will similarly rise (NSW Health 2021). 

Despite its importance and impact, there are key gaps in our understanding of BPSD in Australia. Firstly, there is no singular cause of BPSD. Causes and influences vary between individuals, ranging from physiological changes in the brain due to dementia, to unmet needs or physical co-morbidities. There are also significant difficulties in untangling separate mental health conditions from BPSD and dementia during disease progression. Similarly, there is no diagnostic code for BPSD in available administrative data and often behaviour concerns are not distinguished from a dementia diagnosis in data. Understanding the drivers and influences of BPSD is key in developing targeted treatment and support services.

Further, while there are a range of management and support services available for people experiencing BPSD, synthesising data and patterns from service use and management techniques is a key challenge. Pharmacological treatments are difficult to estimate due to the range of medications that can be used to manage BPSD, including off-label prescriptions. Similarly, non-pharmacological treatment services range from BPSD-specific programs to broader exercise and counselling services. Greater identification of BPSD is needed in administrative datasets to understand the health and aged care service use patterns among people experiencing BPSD in Australia. There is a potential opportunity through future data linkages to provide a more comprehensive picture across all tiers of BPSD in Australia, including geographical and residential location, demographic background and utilisation of support services.