Pain strongly associated with increased, more distressing BPSD

New research led by HammondCare has shown that two thirds of aged care residents with behaviours and psychological symptoms of dementia (BPSD) live with pain, and half of this group experience moderate to severe pain.

The research* also showed that those found to be living with pain were nearly four times more likely to experience aggressive or agitated behaviours, and that these and other impacts of BPSD were more frequent, severe and distressing.

Nearly 500 residents referred to Dementia Support Australia for BPSD who were no longer able to communicate the presence or intensity of pain were included in the study, making it the largest of its kind to date.

The level of pain experienced was measured using PainChek®, a multidimensional pain assessment medical device.

Lead researcher Mustafa Atee, a pharmacist and PhD candidate working with HammondCare’s Dementia Centre in Western Australia, said the research confirmed that pain is a significant contributor to BPSD.

“If pain is not managed appropriately, it can trigger a cascade of adverse events affecting not only the person with dementia, but also the people who care for them,” Mr Atee said. "For the person with dementia, uncontrolled pain can lead to inappropriate prescribing of medications such as psychotropics, and associated side effects including falls, fractures and even death.

“Other adverse events may include frequent and prolonged hospitalisations, impaired cognition and function and reduced quality of life. Obviously this may also impact care staff causing distress, burnout and increased turnover, all issues commented on by the Aged Care Royal Commission.”

Mr Atee said the research was the first to use an artificial intelligence-based, dementia-specific pain assessment tool.

“By using evidence-based tools, dementia consultants identified the prevalence and intensity of pain in people with BPSD living with different subtypes of dementia,” Mr Atee said. “Regardless of the dementia subtype, we found that pain is very common. The sample was large and representative and was sourced from 370 aged care homes across Australia.”

*M. Atee, T. Morris, S. Macfarlane & C. Cunningham, ‘Pain in Dementia: Prevalence and Association With Neuropsychiatric Behaviors’, Journal of Pain and Symptom Management, October 2020,

Other points from the journal article

  • BPSD are a near-universal experience for people living with dementia, with prevalence rates estimated to exceed 95%.
  • Difficulty in identifying pain is associated with a corresponding high risk of under, over, or inappropriate treatment of pain.
  • Poorly treated pain is not only distressing for the person but can also impair social interactions, quality of life, appetite, and sleep.

The clinical implications of this study include:

  • Changes to behaviours in terms of their type, number, severity, and distress may indicate timeliness for initiating formal pain assessment processes and subsequent treatment.
  • As the source of referrals in this study was from residential aged care homes across Australia, the findings raise the question of whether this population is receiving adequate pain control.
  • The study highlights the importance of the need to consider the possibility of pain as a contributor to behavioural change in people living with dementia.
  • It raises the need to incorporate pain assessment and management as part of standardised behavioural assessment and treatment protocols. This would facilitate a more person-centric approach and improved clinical outcomes for people living with dementia who experience pain.