Potential ‘glitch’ in AN-ACC around dementia inclusive language

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 and determines how much funding providers receive for their services to residents.

Yet, an NSW research team discovered the Behaviour Resource Utilisation Assessment (BRUA), uses language that does not meet the national dementia standards around appropriate wording and is potentially discriminatory.

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 in residential care.

"The language is demoralising – it doesn't really cut it," Theresa Flavin said, 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.

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.

Currently, it seems the AN-ACC model, including its assessment tools, is being adopted into some IT systems of Australia's aged care providers.

"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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