This article was originally written for The Conversation by Associate Professor Steve Macfarlane, Head of Clinical Services, Dementia Support Australia & Associate Professor of Psychiatry, Monash University.
Yesterday’s events involving the alleged tasering of a 95 year-old woman living at the Yallambee Lodge aged care home in NSW have brought the broader issue of behaviours and psychological symptoms of dementia (BPSD) into sharp focus. Over half of those living in residential care had a dementia diagnosis, and up to 95% of those living with dementia will experience such behaviours at some point during their passage through the illness.
The full circumstances surrounding yesterday’s events are unclear and they are subject to an investigation by NSW Police that may take some time. What is clear, however, is that there is much room for improvement to the way in which behaviours and psychological symptoms of dementia are managed in residential care. That similar situations lead to the involvement of police is an endpoint that needs to be avoided.
Common behaviours that might be shown by those living with advanced dementia might include agitation, anxiety, attempts to leave care, aggression, apathy, sleep disturbance, aimless pacing, psychosis and aggression.
The Royal Commission into Aged Care Quality and Safety highlighted specific concerns that many aged care providers do not have the skills and capacity to care adequately for people living with dementia. As a result, police being called to respond to incidents in care homes is a not-infrequent occurrence. Whilst certain programs have been implemented to better equip police to respond to the specific need of those living with dementia this work is still in its infancy.
Aggression and agitation are two of the most common behavioural symptoms that lead to referral to specialist support services.
Dementia Support Australia (DSA) is a Commonwealth-funded service that has supported aged care homes and home-based carers in managing BPSD since 2016. Referrals to the service have been increasing each year, and currently stand at some 14,000 per year.
As an organisation at the frontline of dementia support, we extend our deepest sympathies to the 95-year-old aged care resident, her family, Yallambee Lodge staff and everyone else touched by the devastating incident.
One of the advantages of having a national service such as this is that it has enabled the development of a national database that documents not only the nature and severity of the behaviours prompting the referral, but those factors that are most commonly identified as triggers for these behaviours. Aggression and agitation are not diagnoses in themselves, but symptoms. Symptoms have causes, and these must be identified in order to adequately address the behaviours themselves.
The leading contributing factors that we have identified in relation to behaviours are:
Other common causes of changed behaviour include mood and anxiety disorders, communication difficulties, delirium, sleep problems and poor carer knowledge of the specific likes/dislikes of the individuals they are caring for.
The best way to manage most behavioural changes is to prevent those circumstances that lead to their development in the first place. Prevention is always better than cure. Once behaviours are occurring, however, there is no single correct way to de-escalate such behaviours. The appropriate de-escalation strategies will always be specific to what has caused the altered behaviour in the first place.
Unfortunately, when behaviours have escalated to the point where police attendance is required, the responding officers are unlikely to be equipped with the necessary information about the person and their circumstances that would enable them to enact strategies specific to the circumstances.
One case in Colorado from 2020 involved the arrest of a 73 year-old woman living with dementia who had left a local Walmart without paying for items worth $13.88. Her arrest resulted in a fractured arm and a dislocated shoulder, and raised national concerns in the USA about the way first responders interact with those experiencing cognitive disabilities.
Dementia Support Australia is fully funded by the Australian government, and is a free service. Referrals can be made 24-hours per day via 1800 699 799. www.dementia.com.au.