How to effectively communicate with people living with dementia

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:

• Difficulty in finding the right word, for example, the person may use the word pen instead of brush.
• Sentence structure might be slightly incorrect.
• What the person is saying is too vague to be understood.
• The person might only be able to grasp some of the conversation.
• They might ask the same question repeatedly.
• Reading and writing skills can change.
• The person might abandon social conventions in conversation, for example, they might interrupt someone or ignore someone when being spoken to.
• They might experience difficulty expressing their emotions.
• If the person spoke a different language in their youth, they may revert to their first language.

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.

• Use visual clues such as nodding the head, smiling and pointing to an object, for example, pointing to the mug and kettle if you are suggesting making a cup of tea.
• Demonstrate when asking them to perform a task.
• A gentle touch on the arm can be used to gain attention, but “be aware” not everyone will respond in the same way to touch, Christine cautioned.
• A warm smile and laughter go a long way, too.

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:

• Approaching the person from the front.
• Check they have their hearing aids in.
• Check the person is wearing their glasses and that their glasses are cleaned regularly.
• Speak calmly and gently. 
• Remain matter of fact.
• Use short simple sentences.
• Focus on one idea at a time.
• Allow plenty of time to be understood.
• Help the person orientate themselves in terms of time and place, for example. say “This is your son Jack”, “It’s lunch time” or “We are at Dr Brown’s surgery”.
• Signs or picture cards can minimise confusion and support the person to be independent, and they can be used at home as well as in aged care

Lynda suggested not to talk “too much”.

• Engage the other person face-to-face and ensure you have eye contact before you begin speaking.
• Give the other person the chance to speak.
• Listen and watch.
• Break information down into small chunks.
• Check they’ve understood and give them time to comprehend.

What NOT to do

The panel also discussed what NOT to do when communicating with someone living with dementia.

• Do not use elder speak, the term for speaking to a person as though they are a child. It’s not respectful and often patronising, and ultimately can have a negative impact on the person living with dementia. It says to the person “he’s not equal to me” or “he’s incompetent”, and that can lead to a loss of confidence and create a sense they are less able.
• Don’t argue.
• Don’t order the person around.
• Don’t tell them what they can’t do – focus on what they can do.
• Don’t be condescending.
• Don’t ask a lot of questions that rely on memory.
• Don’t talk about the person in front of them as though they’re not there.
• Don’t use phrases such as “I just told you that” or “How many times do I have to help you”.

Top tips

The panel shared practical strategies to aid communication.

• Use a whiteboard to list important tasks and items for the day.
• Have a large clock in the home with the date on it.
• Give the person a note to refer to if they are worried about an appointment or what is happening that day.
• Remember to breathe – these situations can be frustrating and stressful.

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.