Insights from a National Database for Programs Supporting Neuropsychiatric Symptoms of Dementia in Australia

Dear Editor,

Dementia is an umbrella term for a wide range of incurable neurocognitive disorders that affect memory, thoughts, behaviors, and activities of daily living [1]. Behaviors and psychiatric or neuropsychiatric symptoms of dementia (NPS), also referred to as BPSD, changed or responsive behaviors, are common and heterogenous noncognitive symptoms that arise from environmental stimuli (e.g., over or understimulation), personal unmet needs (e.g., thirst, uncontrolled pain) and/or brain neuropathological changes (e.g., atrophies, white matter lesions) [1]. NPS often co-occur, encompassing hyperactive behaviors (e.g., agitation, aggression), affective symptoms (e.g., depression, anxiety), apathy, and vegetative symptoms (e.g., disturbances in appetite and sleep) [1]. These symptoms may result in inappropriate pharmacotherapy, frequent hospitalization, premature admission into residential aged care homes (RACHs), impaired quality of life, significant caregiver burden, and costly care [2, 3].

As there are limited benefits and harmful effects of psychotropic therapy (e.g., antipsychotics) [4], the current mainstay of NPS support and management is person-centered psychosocial or nonpharmacological interventions [5]. These interventions are characterized by their focus on personhood, facilitating meaningful engagement, reducing, or mitigating behaviors, restoring or maintaining personal agency, modifying the environment, and/or supporting caregiving activities [6].

In Australia, NPS national support services are available free-of-charge through Dementia Support Australia (DSA) [7]. DSA is a government-funded support service that administers a number of psychosocial/nonpharmacological interventions-based programs, covering various types and severity levels of NPS for people living with dementia. DSA’s NPS support programs include the Dementia Behavior Management Advisory Service (DBMAS) for mild to moderate NPS and the Severe Behavior Response Teams (SBRT) for moderate to severe NPS. Eligibility criteria for these DSA support programs include individuals with a confirmed or probable diagnosis of dementia, as determined by the treating physician(s), documented in the medical history, or reported by the caregiver; and with current NPS that impact their care, well-being, or that of others [7].

Since inception in 2016, the DSA database has been the only dedicated and feasibly implemented national database for NPS support in Australia, collecting the most comprehensive set of NPS data on referrals from DBMAS and SBRT programs [7]. Given the scope of data from these specialized dementia programs, the Australian Institute of Health and Welfare (AIHW) classified these data sources as tier 1 asset, i.e., higher quality data with more reliable dementia diagnosis and robust data collection methods than most existing databases for reporting on dementia in Australia [8]. DSA data are gathered and inputted by specialist physicians (e.g., geriatricians, psychogeriatricians), experienced multidisciplinary consultants (e.g., nurses, occupational therapists), and staff with accredited training on dementia and aged care [7]. There are various modes of data collection, such as face-to-face, via phone or other electronic means (e.g., emails, fax). The data include the following:

• Demographic data such as age, gender, location, primary language, and care setting type (e.g., residential aged care, home, or hospital);

• Social data such as those recorded in social history (e.g., family composition; cultural and educational backgrounds; employment history; interests and hobbies; personality, beliefs, and values); and

• Clinical data such as dementia subtype (e.g., Alzheimer’s disease); NPS types, frequency, and severity classified according to the Neuropsychiatric Inventory-Nursing Home (NPI-NH) [9] for SBRT referrals, and the Neuropsychiatric Inventory Questionnaire (NPI-Q) [10] for DBMAS referrals [7]; factors contributing to or triggering NPS, e.g., pain, delirium, environment; and support strategies (e.g., pain management, caregiver support) recommended by DSA consultants.

For the period July 1, 2017 to June 30, 2023, 68,535 referrals were supported by DSA programs (DBMAS = 87.8% and SBRT = 12.2%) with the following key characteristics:

• Overall, the average age of referrals was 82.6 (8.6) years, and over half (54.2%) were female;

• 87.1% were residing in over 97% of Australian RACHs, 11.6% in community, and 1.3% were referred from hospitals and other care settings;

• 46,809 (71.6%) lived in major cities, 17,699 (27.1%) in regional areas, and 842 (1.3%) in remote areas of Australia;

• Primary dementia diagnoses included Alzheimer’s disease (38.8%), vascular dementia (12.7%), and mixed dementia (9.0%);

• Top five NPS led to referrals were agitation (32.4%), physical aggression (26.3%), verbal aggression (11.6%), anxiety (6.4%), and aberrant motor behaviors (4.6%);

• The most identified contributing factors to these NPS included pain (53.3%), caregiver approach (35.0%), associated mood disorders (23.5%), over/understimulation (15.3%), and delirium (12.1%); and

• The average length of support was 50.3 (32.3) days.

Clinical outcomes of DSA programs demonstrated significant reductions (p < 0.001) in NPS data, as per NPI scores:

• Mean total severity from 10.6 (5.9) to 4.3 (3.9), effect size (ES) = −1.16 (95% confidence interval: −1.17, −1.11);

• Mean total domain from 5.1 (2.2) to 2.9 (2.0), ES = −0.98 (95% confidence interval: −0.99, −0.96); and

• Mean total caregiver distress from 14.4 (8.6) to 5.1 (5.6), ES = −1.15 (95% confidence interval: −1.16, −1.13).

DBMAS and SBRT data provide valuable detailed information on individuals with high care needs within the dementia population. The granularity of these data may help with service and policy planning and development targeted toward people exhibiting BPSD. Strong data governance and data security exist as the data are generated, stored, and maintained in systems compliant with national and/or state/territory legislations and national ethics frameworks of Australia. DSA data also align with the National Dementia Data Improvement Plan that aims to improve the availability and quality of dementia data in Australia, which in turn may help evaluate the progress of the National Dementia Action Plan 2023–2033.

There are some limitations to the scope of the database. While the DSA database covers all states and territories of Australia, it is collecting data on people with NPS who are only accessing DSA programs, i.e., only those seeking behavior support external to mainstream residential and community aged care services. Further, the support-seeking rates of those individuals are often higher at the later stages of dementia, and they are only supported for 2–3 months on average, hence limiting the potential benefits of monitoring early and longitudinal clinical care, respectively. Another limitation is that data in the DSA database do not include specific information on the degree of cognitive or functional impairment or dementia severity. Nevertheless, given that 87.1% of DBMAS/SBRT referrals come from RACHs (indicating their high level of care dependency), we believe those referrals experience moderate-severe dementia. Expansion of DSA programs and services further widens the scope of data and improves our understanding of NPS and its etiology across various care settings. Recent examples of these programs include the Staying-at-Home for early post-diagnostic and respite support for dementia dyads and the Acute to Residential Care Transition Service for supporting successful transition of people with dementia from hospital to RACHs.

Future data linkage projects with other national databases, such as those administered by the AIHW, would be useful in capturing further clinical data and hence facilitating a better clinical picture for people with dementia. For example, conducting a linkage study using the National Death Index data and DSA data may help identifying the relationship between the trajectory of certain NPS and occurrence of death (e.g., terminal agitation) in people with dementia. Predicting death in this population will also help early planning, implementation, and optimization of palliative care strategies, resources, and services.