For carers of people living with dementia, seeing someone in evident distress but not always knowing the cause or how to relieve their symptoms is heart-breaking.
But a novel tool developed as part of the Advance Project (Dementia) has been a game-changer.
The Distress Observation Tool (DOT) emerged from the Advance Project (www.theadvanceproject.com.au), a HammondCare-led, Australian Government-funded, national palliative care project, which drew on both dementia and palliative expertise at HammondCare, and across Australia.
In 2022, the project developed a suite of dementia-specific resources and training, aimed at easing both end-of-life conversations and palliative care needs assessment for people living with dementia.
The DOT is a structured questionnaire that enables aged care workers and family members to identify, monitor and report signs and symptoms of distress among people living with advanced dementia.
The DOT is a structured questionnaire that enables aged care workers and family members to identify, monitor and report signs and symptoms of distress among people living with advanced dementia.
Specialised Dementia Advisor Lauren Drinkwater (above, left, showing the DOT to a care worker) last year graduated as a registered nurse, but her background as a former dementia care worker meant she straddled the sector. She was the ideal person to support team members at HammondCare Horsley to embed the tool in the translational research project last year (funded by Aged Care Research and Industry Innovation Australia).
She described its reception as an unequivocal success.
‘I could see the need straight away,’ said Lauren, ‘as could anybody I showed it to. It illuminated the gap between what we observed and what was actually happening – it formalised the observation and gave us a way to document it.’
'It formalised the observation and gave us a way to document it.’
Before long, patterns of distress became apparent in some individuals, often correlating to changes in the environment (noise, behaviours of other residents), medication and so on. Higher distress would trigger a clinical review, with action plans developed for when the DOT showed the presence of significant distress.
‘Without the DOT, we probably wouldn’t have put two and two together,’ said Lauren, who especially loved the tool’s holistic design.
‘I loved that it wasn’t clinical-first. It’s able to be used by anybody, and you observe the whole person.’
Director of Research and Learning at Hammond Innovations, Professor Josephine Clayton, said evaluation showed an increase of 36% (from 0%) in palliative care assessment for new admissions, with 85% of residents screened for distress.
‘This simple tool can really make assessment of a person’s needs part of routine care,’ she said.
‘This simple tool can really make assessment of a person’s needs part of routine care.'
‘We’re hoping to embed the DOT across all our residential aged care homes in the future, and hope others in the sector will implement it, too.’