industry & reform
Negative terms
Potential ‘ glitch ’ in AN-ACC around dementia inclusive language .
By Elise Hartevelt
A new behaviour assessment within the AN-ACC tool needs revision , researchers have said , after finding the language does not align with the international guidelines around dementia . Last October , the Australian National Aged Care Classification ( AN-ACC ) model came into effect which determines how much funding providers receive for their services to residents .
Yet , a NSW-based research team has discovered the Behaviour Resource Utilisation Assessment ( BRUA ), uses language that does not meet the national dementia standards around appropriate wording .
They expressed concerns about how the biased language might grow stigma in aged care , resulting in potentially damaging attitudes and behaviour toward people with dementia .
“ The language is demoralising – it doesn ’ t really cut it ,” Theresa Flavin said , a study co-author with lived experience of dementia .
“ We take leadership from the government around what ’ s appropriate and what ’ s not .
“ But somehow the government found it acceptable to name and shame people in residential care who are so vulnerable and disconnected from their communities , with this language .”
The AN-ACC model consists of ten evaluation tools to measure ‘ key cost drivers ’ in residential care and improve funding allocation to meet resident care needs .
While the BRUA applies to all residents , it ’ s especially relevant for people with dementia , as up to 91 per cent of people with dementia will live their final years in residential care .
It ’ s estimated over half of the people in residential care are living with dementia and more than two-thirds of residents have mild to severe cognitive impairment .
Dementia is associated with various health complications , including depression and other mood disorders ( 47 %) and arthritic disorders ( 45 %), requiring higher care levels .
In 2019-20 , four in five people with dementia in residential care required high cognitive and behavioural care levels , compared to 47 per cent of those without the condition .
They were also more likely to need assistance in their day-to-day lives ( 71 %) than those without cognitive impairment .
Flavin said terms in the instrument such as ‘ problem wandering ’, ‘ manipulative behaviour ’, and ‘ attention seeking ’ are discriminatory and generally considered unacceptable by the community .
“ This is where the problem arises because we have this language that implies this judgement that somehow people are doing this because they want to ,” she said . “ We ’ re not ; it ’ s a response to something .” Flavin described a recent situation where she fell and forgot that she had fallen . Her family noticed that she was wandering through the house . “ They asked me , ‘ why are you walking , mom ?’ and I had no answer ,” Flavin said .
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The way we speak about people makes a huge difference .
Then they discovered she had multiple fractures in her back , causing significant pain .
“ I didn ’ t know what to do about it , so my body helped me by walking away from the pain ,” Flavin explained .
“ So while that behaviour can be perceived as ‘ problem wandering ’, in my world , it was a perfectly logical response to something every day like pain .”
She underlined terms such as ‘ manipulative behaviour ’ imply intent but that people with dementia often don ’ t have the capacity to understand the situation .
“ A person with dementia does not have the capacity anymore to plan ,” Flavin said .
“ If you ’ re going to manipulate someone , you have to sit down and plan – it ’ s not possible anymore with dementia .
“ Problem wandering is not a problem for the person who ’ s walking ; it ’ s a problem for someone who wishes they didn ’ t .”
Lead researcher Dr Jacqueline Wesson from Sydney ’ s University School of Health
Sciences said the stigma around dementia could be harmful and negatively impact the level of care they receive .
“ The concern is that the language becomes more widely accepted – that it is ok to describe people in such negative terms ,” Wesson said . “ We understand providers would like help to estimate funding , but it should not [ indirectly ] enable the use of inaccurate , judgmental , and subjective language .”
She called for a strength-based , inclusive approach using respectful , accurate , and balanced terms .
“ The way we speak about people makes a huge difference ,” Wesson said .
“ We need to use language that supports the understanding of the person themself and sees them as an accepted and valued part of society .”
Wesson said there ’ s been ‘ so much reason to hope for positive change ’, and that ’ s why the team was so surprised and disappointed in the language used in the BRUA .
“ We ’ re not saying the whole AN-ACC model is faulty ; we ’ ve just identified something that might be a bit of a glitch ,” she said .
“ We suggest reviewing the language would serve all Australians well .” ■
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