Learning how to communicate with older people or loved ones with dementia can be confusing - and joyful

At this year's Oscars, Lady Gaga received praise for the "classy" way she honoured Liza Minnelli.

Gaga struck an admirable balance of being inclusive, patient, reassuring and subtly supportive, gently guiding Minnelli by holding her hand and whispering "I got you," which was picked up by the mic.

She seemed to intuitively know when to lead and when to hold back, upholding Minnelli's dignity, and keeping proceedings moving. 

Online reactions praised Gaga for knowing how to communicate calmly without condescending. 

Yet this doesn't come naturally to everyone. And for those less intuitively empathetic than Gaga, it can be difficult to know how to strike that balance and communicate effectively with older people grappling with symptoms like dementia, confusion and distress.

Whilst Minnelli doesn't have dementia, the confusion she reportedly experiences as result of a viral brain infection may be similar to that of some living with the condition.

We don't always see the best modelling of these relationshpis on stage and screen. 

When, in 2020, Anthony Hopkins won an Oscar for his portrayal of an elderly man with dementia in The Father, he made history, becoming the oldest ever Best Actor winner at 83.

Despite the accolade, questions have been raised about the accuracy of his portrayal.

In the same year, actor-turned-director Viggo Mortensen also starred in the film, Falling, in which an adult navigates their father's dementia.

Mortensen told Spectrum he disagreed with the way Hopkins's character in The Father was portrayed as being constantly confused.

"In my experience anyway, in a caregiving role up close especially with my parents, it's usually the observers and the caregivers who are more confused than the person who has it," he said. 

He also queried the way Olivia Colman's character corrected her father: "One thing you learn, if you're trying to care for a person like that, is not to correct them."

Both films depict the frustrations and distress of the filial caregivers, but may leave the viewer perplexed about one crucial question: How should and shouldn't you speak to someone with dementia?

It's a quandary the almost 1.6 million people involved in the care of an estimated half a million Australians living with dementia will likely have wrestled with.

And the short answer is, everyone's dementia is different and prone to constant change. There are over 100 different diseases that cause dementia — Alzheimer's being the most common — and they each affect the brain in different ways.

However, Mortensen is correct about not correcting them. 

It's something Nick*, 41, only learnt after being blindsided by his mum Helen's dementia diagnosis.

After she was diagnosed last year, Helen didn't see Nick, who lives in Normanhurst, NSW, for two months because of COVID lockdown. When he finally did get to see his mum, he was shocked to discover how rapidly her condition had deteriorated.

"In those eight weeks, she'd really gone downhill. The usual conversation I'd had with mum for 40 years was just completely different," he says. "You can't share the same stories or jokes. It was like talking to a child again."

But Nick realised talking to her in this way wasn't working. 

"I was helping her move from her home into a retirement village, and telling her what to do, not to do — put this here, pack that box, get your clothes packed," he says. 

"But everything was taking longer than it should. Everyday tasks like making a cup of tea became a big ordeal. She'd get out eight cups to make a cuppa for two people."

Putting back those six redundant cups, though, became problematic and there were signs Helen felt patronised.

"She'd get frustrated or even angry — completely new character traits," Nick says. "Her personality shifts are extreme. I'd never seen mum cry before. Now she breaks down regularly."

Not all shifts, however, are unwelcome. "She now shows affection and love," he says. "She was normally more reserved."

But the toll was becoming too much for his family. "Me and dad were extremely confused," Nick says. "To a certain extent she doesn't feel like my mum anymore. That's really difficult to say. You really rely on that two-way conversation."

His mum has also started to call him her nephew, which he's found particularly hard. "There's a lot of grief," Nick says. "The person you knew isn't around anymore."

This is what's known as "ambiguous grief", the loss of a loved one who's still alive. 

Nick soon realised he needed support. He got in touch with Dementia Australia, which provided a training course to help him better communicate with his mum.

"My understanding of how to communicate with someone with dementia has changed 180 degrees. It really opened my eyes." he says.

Barbra Williams from Dementia Australia facilitates courses like the one Nick and his dad took.

The golden rule, she says, is not to correct — it can make the person with dementia feel they're being gaslighted.

"It's important not to challenge their perception of reality — they'll become upset and defensive of that reality," Williams says.

As frustrating as it can be, she adds, prompting is a redundant exercise. "No matter how much you prompt, that won't help them remember if they can't recall information. The memory just doesn't exist in that person's brain anymore."

For example, if someone discusses their mum who died 30 years ago, asking them to 'tell me about your mum' is a better approach than correcting them, which could re-traumatise them. It's about entering into their world. 

"Asking for their mum could be a sign of anxiety or fear," Williams says — a sign they need comforting. "It might be an opportunity to say, 'Your mum can't be here at the moment; I'm here for you, how can I help you?'"

The other golden rule can be difficult for confused, frustrated caregivers: stay calm. 

"Their agitation will match yours," she says. "They'll often respond to the feelings you're portraying rather than the words."

This is what makes non-verbal communication essential.

"Only seven-to-10 per cent of our message is communicated via words," Williams says. "A person with dementia will often infer meaning from the cues of tone, pitch of voice, gesticulation and body language. A lot can be communicated through touch, too." 

Other tips Williams suggests (which won't work for everyone) include:

  • Use gentle distraction: "One client, who no longer drives, believed their car had been stolen. I used gentle distraction by saying: "I'm not sure where your car is right now, was there somewhere you wanted to go? Can I take you there?" 
  • Remove other distractions: "Being in a quiet place helps create calmness; I turned off the TV or radio."
  • Use redirection: "I then said, I'm just going to put the kettle on, then we can discuss where you want to go. Once we'd moved to a different part of the house, I discussed the garden needing trimming."
  • Change the setting: "Often changing rooms from inside to outside can be enough to break what they're focusing on — we then discussed the unruly garden and they forgot about the imagined car theft. But always acknowledge the feeling, the sentiment behind what they're actually saying."
  • Reminiscing is a great activity, as Mortensen learnt with his own family members. "If they're enjoying that memory, let it go," he said. 
  • Uphold their dignity: "Always include them in conversation," Williams says. "Don't talk across them — they can't always respond with words but they need to be valued."

One of the most confusing things for caregivers can be the ever-changing nature of the condition, Williams says: "Certain strategies may work for a week or two then you may have to change your approach to that person again."

After just one session, the Dementia Australia education program was transformational for Nick because it helped clarify misconceptions. "You don't appreciate how much you're doing the wrong thing 'til you're shown it," he says.

When the time came for a cuppa, the ritual was calmer. 

"It was a case of show, don't tell," Nick says. "I said, 'Would you like me to help you make that cuppa?' and she allowed me to guide her through the process."

The biggest lesson, though, is simple: You'll never win an argument. "That was a light bulb moment, and a turning point for our new relationship," he says. 

Now, when Helen argues with him about where her home is, he asks her what she loved about her previous home of 30 years.

"It changes the discussion to memories she's comfortable in," he says. "It pulls everything off."

If conversation — both verbal and non-verbal — isn't working, there's another strategy families and carers can try, says Associate Professor Lyn Phillipson, who researches dementia at the University of Wollongong.

Stimulus objects can spark joyful conversations, she says: "Things like photo books, memorabilia and music they enjoy can prompt interactions about meaningful and pleasurable topics."

Author Wendy Mitchell's recent tweet about what she has achieved while living with dementia was a reminder never to underestimate someone who has the condition. 

In her new book, What I Wish People Knew About Dementia, she writes about how she may struggle with changing train timetables, or reading anything longer than a tweet, yet has written two books since her diagnosis.

"I am just as astounded by the dance my fingers make across the keyboard ... as anyone else," Mitchell writes. "There is little — if any — research ... to explain why this part of my brain still functions when so much is failing. No one is able to give me an explanation."

As for depictions of dementia in films and on TV, Mitchell warns that accurate portrayals are often secondary to the "artistic licence" creating a dramatic reliance on cliches and suspense.

"Often these depictions focus on the very end stages of dementia or accelerated versions of the disease trajectory, forgetting there is so much life to still be lived despite a diagnosis," she writes. 

"It'd be nice to see people in all different stages of dementia diagnosis for the most accurate representation."

Even still, says Barbara Williams, portrayals such as those in The Father and Falling break down taboos associated with dementia. 

"Some carers keep very private and don't seek support," she says. "These depictions normalise the experience of someone diagnosed with dementia, making it easier for people to speak up and ask for help."

*Nick requested his surname not be published to protect his family's privacy.