How to chat to loved ones and friends with dementia

When your bestie or parents have dementia, here's how to keep communicating well.

By Paula Goodyer

It’s a skill we’re likely to need at some point in our lives: the knack of communicating well with someone who has dementia.

I needed it back in June while visiting one of my besties from high school who’d just ‘come out’ as having Alzheimer’s. We hadn’t met for 3 years, chatting instead by texts and emails, most of them lucid.

But face to face was trickier. She struggled to find the right word while I struggled to know how best to help - should I help provide the word she needed or wait? Should I rush to fill gaps in the conversation - or would I wear her out?

A good place to learn how to manage this is Dementia Australia which has useful strategies. We also asked Maree McCabe, CEO of Dementia Australia, for her advice.

What are some of the common communication challenges that arise when someone has dementia?

Each person with dementia is unique, so difficulties in communicating thoughts and feelings are very individual and not just based on the different stages of the condition. But there are some common challenges such as:
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• Difficulty finding a word, or saying a related word instead of one they cannot remember.
• Speaking fluently, but not making sense.
• Limited ability to understand what you’re saying, or only following part of it.
• Changes in reading and writing skills.
• Loss of the usual etiquette around conversation - for example, interrupting or ignoring someone while they’re talking, or not responding when spoken to.
• Difficulty expressing emotions appropriately - such as overreacting to things or rapid mood changes.

What makes for good and meaningful communication?

It’s important to support someone with dementia to maintain their dignity and self-esteem.  Talk in a gentle and clear way, keeping sentences short and simple. Focus on one idea at a time and allow plenty of time for them to understand what you’re saying.

You can make it easier for the person to understand by framing your questions to have either ‘yes’ or ‘no’ answers, or to have a limited number of choices with their answers. Maintaining eye contact is good because it shows you’re listening and attentive. When you’re referring to other people in your conversation, it helps to identify them clearly - for example, ‘your daughter, Jane’ rather than just ‘Jane.’

"Body language and other forms of non-verbal communication also help - consider touching or holding their hand to show warmth and affection. Smiling helps - and sharing a laugh can communicate more than words."

What are some examples of patronising behaviour we should avoid?

Don’t assume someone with dementia can’t understand you and don’t talk across them to their carer, family member or friend. This can make them feel excluded and could make them feel less open to communicating with you.

People living with dementia tell us that it’s important to allow time for them to speak - be patient and wait for them to find the right word they want to use. “It’s also important to avoid finishing their sentences - it can be seen as patronising. Give them time and don’t rush the conversation."

But if they lose the thread of the conversation midway, try to avoid any embarrassment - you could change the subject, for example.

What might people unwittingly do to discourage someone with dementia from communicating?

If you’re communicating with someone with dementia, it’s important to make it a positive experience, especially on their ‘bad’ days - but sometimes our own stress or fatigue can make this harder. But if we can stay calm and patient it will have a positive flow-on effect to the other person.

What about written communication via text, Facebook messaging or WhatsApp?

Again, each person is unique - it may work for some but not others. However, written communication like those in messaging apps can help someone living with dementia keep track of important information and allow them to refer to it as they need - and this may help put them at ease and maintain a sense of independence.

Going out with people who have dementia - these tips might help

If the person with dementia is used to an active social life and being part of a group, they may still enjoy that, even though they may not talk much, says Sally Day, an occupational therapist specialising in dementia.

The challenge with having dementia when you’re in a group is that it’s hard to take in information from multiple sources and there’s not much time to process what one person says before someone else speaks.  

But they may still like being part of the group and happy to absorb what’s going on. If they don’t talk much, just make sure they get to interact outside of a group situation.

Like any of us, someone with dementia may feel like joining in a conversation and sometimes they may not, and we need to respect this,” adds Maree McCabe. “Dementia can make it hard to concentrate, so distractions and stresses that might be manageable in normal social situations can make communication more difficult. Small things like moving away from competing conversations or switching off the TV or radio can make it easier - and try to stay still while you talk - stay in the person’s line of vision if you can.

“Be mindful too that people with dementia may tire more easily and appear to withdraw from a conversation or social setting. They just need to rest so give them space and be patient.”

Good communication isn’t just words  

“As dementia progresses, verbal communication gets harder but although someone with dementia might not understand what you say, a smile or a comforting touch helps them feel included,” says Sally.  “Be aware, too, of the other person’s body language and facial expressions - do they match what you think they’re trying to convey?”
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“Shared activities can be another way of communicating without words - depending on the person’s interests or level of cognition, that could be looking at old photos together, flicking through photographic books, doing jigsaw puzzles or going for a stroll.”

Need more information to help communicate?

• Read Citro’s articles on Dementia and Cognitive Decline 101
• Call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) This can provide advice on specific problems with communication, or direct you to more support and information.  
• Dementia Australia runs programs in all states  for families on communicating with someone with dementia.
• Read The Dementia Guide, Dementia Australia’s resource for people living with dementia their carers and family.
• Go to Better Health Victoria’s detailed fact sheet Dementia - Communication  which includes information on other communication strategies and therapies such as music therapy, the value of reminiscence and making a This is your Life book.