Day 1 recap: International Dementia Conference

The International Dementia Conference started off hot as dementia’s portrayal by mainstream media was discussed, and it arguably ended even hotter with a boundary-pushing conversation about sex in residential aged care.

Here are your quick hits from an action packed day.

Government sheds light on reform

The Minister for Aged Care, Anika Wells, was on deck to provide an in-person update for the crowd. 

“Almost all of us will be affected by dementia in some way, whether that’s living with it ourselves, becoming a carer to a loved one who will experience it or through interactions on our streets or in our community. It is incredibly important that people living with dementia and their families and their carers are supported,” she began.

Minister Wells highlighted the development of a new National Dementia Action Plan as a key step towards achieving this as it will set out priorities for the next decade. Measures of progress will also indicate whether the action plan is actually meeting its objectives to improve the lives of people with dementia.

The Government is finalising the action plan with state and territory governments ahead of a release before 2025. Other initiatives include the Government funded Dementia Respite Education and Mentoring Project (DREAM), which will boost the ability of the aged care workforce.

As for the elephant in the room, the new Aged Care Act, Minister Wells said, “We are confident and we are hopeful that the opposition will provide bipartisanship support very soon.”

“It’s vital that be bipartisan because you, as a sector, cannot have the rules change when the government does. I sincerely believe that the shadow minister Anne Ruston earnestly wants to see aged care improved and reformed in this country.

We’ve come a long way and we’re on the precipice of going even further.”

Improving the media portrayal of dementia

Dementia advocates Bill Yeates and Gwenda Darling brought personal perspectives to the fore as they discussed media portrayals of dementia with Professor John Swinton.

Both Bill and Gwenda have experienced the emotional highs and lows since receiving their respective diagnosis, with the media’s narrative of dementia being a life ending disease playing a negative role at times. 

“The media see me as clickbait. All I wanna do is get my vibrator out. They don’t talk about the fact that we have 50 women a week raped in residential care and it doesn’t matter because they won’t remember. It’s a national shame,” Gwenda shared.

“I think that the media sensationalises dementia. They even published a nude photo of me this week and I had to fight to get it withdrawn. It’s demeaning and it’s not valuing me as a person.”

She said it’s critical for mainstream media to tell the truth, avoid sensationalising dementia and not infantilise those living with dementia.

Bill, meanwhile, shared how its the moments where he can show that he still has a good life that truly captures the media’s interest. 

“There have been a couple of times I’ve been on TV and spoken about a new breakthrough in dementia. I’m still a volunteer surf lifesaver and what I find is that when I mention it to the people who are interviewing me, they latch on that very quickly,” he explained.

“They then take the interview the way that I want them to, meaning that this is a really good way of showing people living with dementia that you can have a good life, you can do things which are very meaningful.”

First responder viewpoints

An incredibly impactful session during the middle of the day covered ground in the first responder space. The panel shared various viewpoints, including that of a loved one plus police, ambulance and hospital representatives. 

Julane Bowen shared how she had to call for an ambulance after an argument with her husband resulted in a nasty head knock, although there was no intentional aggression from her husband. However, police were called after he began to react aggressively towards paramedics as they tried to take Julane to hospital.

The police did not show any signs of understanding, arresting Julane’s husband on arrival. He spent 8 months in hospital under guard while police attempted to charge him with domestic violence. An official dementia diagnosis finally brought the saga to an end, although Julane was even accused of bribing a hospital official to secure it.

This was her advice for first responders. 

“The person living with dementia is an autonomous human being and you should take that into consideration. They are entitled to have some say about what care they’re receiving and how they’re treated,” she said.

“Then the other side of that, listen to the carer. I know him better than anyone. I’ve been with him for 42 years. I’m screaming about things that are happening to him and I was being ignored, constantly ignored.

“I can de escalate a situation pretty quickly because I know how to do that with him. So ask me.”

Sex on the brain

The first day at the International Dementia Conference ended with a familiar face, Gwenda, joining a panel of experts discussing sexuality and intimacy in aged care: Dr Nathalie Huitema, Olga Pandos and Ashley Roberts.

The discussion featured plenty of highlights, including Gwenda’s renewed calls to replace bingo with sex toy parties, but it was the focus on the right for people with dementia to be intimate or affectionate in aged care that mattered the most. 

Mr Roberts explained that staff often struggle with their responses to affection or intimacy as they have no clear training or understanding of what is right and wrong. In one instance this resulted in multiple SIRS reports related to residents holding hands.

“Some of them were struggling to know how to support a relationship. They had no policy, no guidelines in the care home, nothing like that,” he said.

One instance saw two residents discovered naked in bed together. 

“If they were just cuddling, hugging, there could be a number of different things they were doing,” he added. 

“Language and definitions matter. I just don’t think we use the word affectionate enough in aged care. The evidence that we had from those observations was those two people were being affectionate towards each other.”

A dementia diagnosis may complicate things, however, the overwhelming consensus from experts is that each case needs to be looked at in isolation. Even day to day interactions can be different as fluctuating capacity means consent is also fluid. 

“People with dementia say yes or no but just because that’s what they say this hour doesn’t mean it’s going to be the same in the next hour. If I give consent now it doesn’t mean in two hours I give consent,” Gwenda said.