Together, their advice and tips for the best ways to communicate with those living with dementia offered a comprehensive and rounded range of suggestions.
Communication changes are often one of the first indications something is wrong when a person has dementia.
Panel member Grahame Smith, who is living with dementia, said slowed speech and balance problems were the first changes he experienced.
Christine Dunbar, Training Facilitator with Dementia Australia, said every dementia journey is different, but some of the first signs of dementia can include:
Lynda Henderson is a researcher and cares for her partner, Veda Meneghetti, who is living with dementia.
Veda’s loss of language was “rapid”, Lynda said. However, though her speech is “almost unintelligible” and she can’t read or write, she can understand much of what is being said.
The two are both expressive and use gestures and facial expressions to communicate.
“In context, it’s not difficult to communicate,” Lynda said.
Body language is key
The panel’s host, Kyle Olsen, said communication is “much more than the words we speak”.
Communication is 55% body language, 38% pitch and tone of the voice and 7% words, Craig explained.
“It’s so important [that] family and carers keep this in mind when communicating with people living with dementia,” he said.
Body language can be helpful in conveying a clear message, explained Christine.
Grahame said when he is talking to people, he likes them to speak to him face-to-face so he can pick up on any visual cues. It also helps when people don’t speak too quickly, when they speak clearly, and when they don’t provide too much information at once.
Grahame said he experiences “lots of difficulties” at gatherings, for example, around the family table, where there is a lot of energy, excitement and conversation at the same time.
How to communicate with people living with dementia
When communicating with people living with dementia, Christine suggests:
Lynda suggested not to talk “too much”.
What NOT to do
The panel also discussed what NOT to do when communicating with someone living with dementia.
The panel shared practical strategies to aid communication.
For example, if the person says they need to pick up their children, don’t tell the person they don’t have to do this, focus on the person’s feelings being expressed in that moment and validate those feelings by using empathy. For example, say “You’re worried about the kids, I can hear it in your voice. Tell me about that.” Create a safe environment for the person to express their feelings without judgement.
Use reminiscence therapy; draw on stories from the past. Be aware of the person’s life story, focussing on the positives and avoiding any painful, sad or traumatic episodes.
A ‘This Is Your Life’ book can include name, date of birth, photos, family names, hobbies and interests, family photos, artifacts, retelling of old stories, and even music if online. These books can be great conversation starters, but they can also promote communication and calm a person living with dementia if they become distressed.
Culturally diverse backgrounds
One third of Australia’s population comes from culturally diverse backgrounds, and poor dementia awareness and stigma around the disease can lead to delay in seeking help.
Advocate and former carer Danijela Hlis says people living with dementia from culturally diverse backgrounds can find themselves particularly isolated as they often lose the ability to speak English and revert to their first language.
“It’s a huge sad situation,” Danijela said.
The person might be left isolated at home, not able to read in English or watch TV in English.
“It’s very important the family understand the consequences,” she said, and that they find the bilingual support and help they need to increase engagement.
“Your duty of care under law is to engage interpreters” if the family can’t communicate with the person living with dementia, she said.
Picture cards can also be helpful for people from culturally diverse backgrounds, and are available at culturaldiversity.com.au.
The panel was asked about communicating with people who have lost the ability to speak. Music “fires up multiple areas of the brain”, and people who can’t speak will begin to tap their foot or start to sing.
How to avoid arguments with a person living with dementia.
If the person with dementia is arguing with you, stop what you are doing and take a different approach. It’s possible the person is feeling unsafe, insecure or threatened in some way, and that could be why they are acting out their emotions.
Validate the person. Find out if they have unmet needs, such as are they hungry or thirsty or do they need to go to the toilet? Sometimes you have to walk away and take a moment to yourself to calm down and think about a different approach.
Keeping in touch during lockdowns
Christine said writing letters to loved ones in residential aged care during lockdowns can provide great entertainment and is a way to keep in touch, especially when online or phone contact isn’t possible.
Keep the letters simple, and include pictures and photos. Staff can read the letters to the resident. You can also send care packages.
“When you know better, you do better,” said Christine, suggesting carers access the large range of training tools available from Dementia Australia, including face-to-face sessions, a dementia helpline, support groups, counselling, younger onset dementia support, libraries, help sheets and videos.