Communication techniques for carers: A conversation with experts from Dementia Carers Count

We spoke with two experts from Dementia Carers Count - Lorraine Haining and Victoria McGrath - about effective communication strategies for interacting with people living with dementia. Their insights offer valuable guidance for both professional and family carers navigating the complex communication challenges that dementia presents.

‍

The fundamental challenge: communication in dementia

Victoria: Dementia is a disease almost entirely focused around communication. If a person with dementia could communicate effectively, all the other symptoms of dementia would be made easier. Communication between human beings is normally a two-way process - a person speaks, a person replies. It becomes quite difficult for carers when one person in that interaction struggles to communicate.

We can start to feel very frustrated when we're not getting the expected responses and flow of communication. For carers, this is coupled with time constraints - a tight visit schedule, running their life, running the person with dementia's life, perhaps having children and other jobs too.

This ends up resulting in easily losing patience. However, we need to allow time for the person with dementia to speak because they've lost some of the tools we have to converse fluently. It might take them more time to find a word, associate the word, or put words together to make a meaningful sentence.

‍

Lorraine: The multicultural landscape we now have in the UK can also present its own issues in terms of communication. There are many cultural nuances we might not understand. Some people with dementia will revert back to their native language at some point during their dementia journey, and we have to be aware of that so we can address those needs.

‍

“Some people with dementia will revert back to their native language at some point during their dementia journey, and we have to be aware of that so we can address those needs.”

‍

Victoria: Absolutely. I experienced this in my own family where my Italian grandmother, who came over on the Orient Express many years ago and spoke English all the time, in her last couple of years reverted to speaking only Italian. We had no idea what she was saying. That was extremely difficult to deal with - it adds another layer of complexity.

‍

Lorraine: Even just trying to get a diagnosis if someone comes in late and they've already lost their English language skills can be challenging. You might need an interpreter just to complete the assessment process.

A lot of the problems we see when families are struggling relate to communication. Teaching them different approaches can really help, but it's very hard for a family carer in particular to change the way they've communicated with somebody for 50, 60, 70 years. We've got to remember they're older too, so change can be quite difficult for older people as well.

‍

Victoria: There's research that argues dementia is essentially a communication disease. If communication wasn't a problem, dementia might not be as difficult as it is. Communication sits right at the top of any subsequent challenges, including verbal communication, body language, and displaying emotion. All these multiple types of communication require education on how to look out for and respond to them.

‍

In honour of Dementia Action Week, Dementia Carers Count are running a 90 minute online introduction to dementia training with 30% off if contacted before 25^th May 2025. Find out more here.

‍

How communication needs evolve through different stages of dementia

Lorraine: It's really important to understand that everyone with dementia is different. Dementia can affect each person in very different ways despite having the same diagnosis. Communication difficulties can depend on the type of dementia and the stage they're at when they come to the attention of professionals.

In Alzheimer's disease, changes can happen quite early on and are often an indicator that there's a problem - finding the right word, using the wrong name, being unable to name objects or people, not understanding what's being said. Some people might develop a louder voice and repeat questions and phrases.

These issues start in the very early stages of Alzheimer's because the disease affects the language centre in the temporal lobe. The chemical changes affect that part of the brain very early, so language difficulties often indicate the first problems we see.

With vascular dementia, language difficulties may or may not be present depending on the area of the brain affected. Sometimes people with vascular dementia have very good language skills; others can have profound difficulties if the temporal lobe is affected, presenting muddled and incomprehensible speech, reverting to simple sentences, and having word-finding difficulties.

Frontotemporal dementia (FTD) has different variants. The type involving the temporal lobe can cause very early language problems, such as primary progressive aphasia, which specifically impacts speech and language to the point where the person can become quite mute. They'll have difficulties structuring sentences, finding words, understanding language, and following conversations.

With behavioural variant frontotemporal dementia, language difficulties might develop at a much later stage because it initially affects the front part of the brain. As the dementia progresses, it might eventually cause problems in the temporal area.

In Lewybody dementia, changes to the persons voice are common and are related to muscular changes such as stiffness, slowing of movement and rigidity and cognitive changes.  The person can become softer in their tone almost whispering, causing their speech to be less clear and more difficult to understand. They can also have difficulties with fluency of conversation. These changes can also affect facial expression and they can develop a mask like expression, unable to show emotion. Working with a Speech and language Therapist can be particularly helpful in this type of dementia.

As dementia advances, communication needs become more apparent. Carers need to adapt their approaches by using clear, simple language and providing visuals - that's your primary way of communicating with somebody with dementia who has communication problems. Visual tools like pointing, gesturing, or mimicking can be really helpful.

‍

“Carers need to adapt their approaches by using clear, simple language and providing visuals - that's your primary way of communicating with somebody with dementia who has communication problems. Visual tools like pointing, gesturing, or mimicking can be really helpful.”

‍

Victoria: It's important to note that with carers in particular, people with dementia can have good days and bad days. There are days when they may be able to communicate more effectively than on other days. This really affects carers because sometimes they feel the person is putting it on. They might misunderstand and say, "Well, you were able to do it yesterday!"

It's about explaining to carers that this fluctuation is still part of dementia. This goes back to patience and understanding - a good day doesn't mean the condition has improved.

‍

Lorraine: Absolutely right. Even throughout the day, things can fluctuate. They might communicate well in the morning, but later in the afternoon when they're tired, confused, hungry, or irritable, things can change, and you can really struggle to communicate. People will say, "But you did it this morning, so why can't you do it now?" But health, tiredness, hunger, thirst - all these things affect dementia and consequently affect communication.

‍

Victoria: When teaching or training carers, they'll often ask for specific advice, but it's hard for us professionals to predict exactly how things will play out. There are so many variables - everybody with dementia is significantly different. The challenges in communication and timing vary greatly. We can only give carers some basic tools to deal with whatever comes their way.

‍

Lorraine: Teepa Snow is an occupational Therapist from the USA who created the PAC approach and you can access a lot of her work on youtube as well as her website. I'd recommend her videos for a good introduction to communication techniques.

‍

Practical communication tools and techniques

Victoria: First, environment is key. Choose your time and setting carefully. If you're in a coffee shop, that's not the time to have an important conversation with a person with dementia. In public places, stick to small talk. Choose your times when you want to have detailed, important conversations - aim for a quiet environment with minimal distractions.

Secondly, look for patterns. People with dementia might communicate better in the morning and worse at night when they're sundowning. Then, use gestures and body language, allowing your lips to form words clearly because the person may rely on lip reading.

Then, don't multitask while talking. Finally, take a deep breath because it is going to be difficult - the person isn't going to be able to converse as they used to. Having fewer expectations can reduce agitation.

‍

Lorraine: We also often talk about the 10-second rule - give the person at least 10 seconds to understand what you've just said, because the cogs are turning more slowly. They need time to process information, and then give them another 10 seconds to formulate a reply.

In our culture, we're so used to filling gaps - we don't like silence. If people don't reply immediately, we ask another question or throw in our thoughts, which can confuse them even more.

Also using props is also helpful. If you're helping with personal care, using soap, a cloth, turning on a tap, showing them how to do things - gestures and visual cues are incredibly important when someone's verbal communication deteriorates.

Keeping a routine is vital too. People with dementia find security in routine - they know what's going to happen, when, and where. If we change their routine without properly communicating it, that can cause anxiety and stress, which further impairs communication.

When trying to get their attention, use their name and maybe gently touch their shoulder rather than just speaking generally. Make sure they can see you.

‍

“We also often talk about the 10-second rule - give the person at least 10 seconds to understand what you've just said, because the cogs are turning more slowly. They need time to process information, and then give them another 10 seconds to formulate a reply.”

‍

Victoria: It's also important to ask one question at a time. In normal conversation, we might hold multiple threads simultaneously, but a person with dementia can't do that. Keep it simple and focused - one question, not multiple questions in a single delivery.

‍

Supporting professional and family carers

Lorraine: The burden of communication really falls on the carer. The person with dementia is already going through changes they're often unaware of. Sometimes they have insight, which can cause frustration, but mostly they're doing the best they can. It's down to us to make the necessary changes because we have the capacity to understand what's happening.

That said, it's easier for us as professionals to tell carers to be calmer and more patient than it is for them to actually do it with all the stresses they face. It's a real challenge.

‍

Victoria: We need to be careful how we deliver advice to carers. The last thing we want is to make them feel they're doing something wrong. We understand how difficult it is in real life, especially when a person is significantly repetitive - your patience wears thin very quickly with your own family.

‍

Lorraine: One important approach is not to correct the person when they get something wrong, unless it's critical. All you're doing by correcting them is reinforcing that they have problems. Does it really matter if they've said the wrong name, date, or day? It's better to let that go and flow with it.

If you're constantly correcting someone, particularly if they have no insight and believe what they've said is correct, it can cause conflict. Only correct if absolutely necessary, and do it gently rather than saying, "No, that's not right."

‍

Victoria: Exactly. Avoid saying, "Do you know who I am?" Instead, say, "I'm Victoria, I'm your friend" And avoid asking, "Do you remember?" - these questions can cause distress when they can't recall.

‍

De-escalating agitation and distress

Victoria: When someone becomes agitated or aggressive, safety comes first. Try not to inadvertently escalate the situation - carers don't want to make a person agitated, but if you keep asking the same question they can't answer or pushing for a response, it can worsen the situation.

If a person gets agitated, withdraw from what you were trying to achieve and agree with what they're saying at that moment. It might not be factually true, but that's irrelevant in the situation.

For example, if they're upset saying someone has stolen their shoes, instead of contradicting them, say, "I'm hearing you. Shall we walk around the house and try to find them together?" You're taking the energy level down and allowing the person to feel listened to. Go along with the notion that you understand what they're saying: "Yes, I can hear you. That's really worrying. Let's find them together."

It's about de-escalating in any way possible. Look at your body language too - step back, appear relaxed, and don't apply pressure.

‍

Lorraine: Exactly right. What works is very individual - for some people, taking them for a walk and getting them out of the environment helps; for others, sitting them down with a movie or music, or even just singing along with them can provide distraction.

It's also important to rule out physical causes when someone becomes suddenly agitated. They might have an infection or be in pain that they can't communicate. It's just like the rest of us - if you have a toothache, you'll be irritable and have less tolerance. These physical factors can significantly affect someone with dementia and consequently their communication abilities.

‍

Victoria: People don't realise how much power and influence they have over another person in these situations. If someone is becoming agitated and I match that energy, it's only going to escalate. Sometimes you just need to take a break - go to the bathroom, wash your hands, have five minutes to calm yourself.

Then think about what they like or respond to. For example, I worked with a man who had been employed on the railways. Talking about trains would completely change his energy. Your own demeanor and approach has the ability to change somebody's emotional state in that moment - it's a special gift. When a person has dementia, they rely on your energy more than you might think.

‍

“I worked with a man who had been employed on the railways. Talking about trains would completely change his energy. Your own demeanor and approach has the ability to change somebody's emotional state in that moment - it's a special gift. When a person has dementia, they rely on your energy more than you might think.”

‍

Lorraine: Another effective technique is using the word "sorry." If a conversation is becoming stressed and they're getting annoyed, saying "I'm really sorry, I'm obviously upsetting you, I never meant to" or "I'm really sorry I have to ask you to do this, but this is hard for me as well" can immediately de-escalate the situation. It acknowledges that you're causing distress and creates an opening to start communicating again.

‍

Building meaningful connections as a professional carer

Lorraine: Person-centered care is essential. We use Tom Kitwood's model in our work with family carers. He was a psychologist who revolutionised how we approach dementia care by focusing on the psychological needs of the person.

He identified key needs: comfort (both physical and psychological), inclusion (making sure they're part of what's happening), identity (understanding who they are and where they've come from), attachment (things that make them feel secure), and occupation (meaningful activities).

It's important to work with the person's strengths - focus on what they can still do rather than what they can't. Detailed care plans are crucial, particularly in community settings where carers might change frequently. If they read the care plan before entering a situation, they understand what to say, do, and how to communicate effectively.

Work with family carers too - they've been learning and adapting as the dementia has progressed, so ask them what works. Keep the conversation going with family carers to address changes as they occur, and update care plans accordingly.

‍

Victoria: When mentioning care plans, tools like "This Is Me" documents are extremely important. These should follow the person if they move between care settings. They detail preferences - do they like tea or coffee? Are they vegetarian? What do they enjoy discussing and what topics should be avoided?

I also try to teach professional carers that even if a person with dementia isn't making sense - if their thinking and speech are disordered - go along with it. If they randomly mention ducks on water, you can respond, "I absolutely love ducks. When I was a child, we used to feed them bread." It doesn't matter what you're discussing; what matters is that you're giving time and making the person feel heard.

Have patience, allow them to talk, enjoy the conversation, and show that you're enjoying it. Enter their world and listen to what they're saying.

‍

Lorraine: Another important point is that culturally, we're not comfortable with silence, but silence can be valuable. It can be perfectly fine to simply sit and hold hands with someone, perhaps with some music playing, or for family carers to share a hug. These moments can evoke nice memories and provide comfort and belonging.

You don't have to fill every gap with conversation - there are many ways to communicate beyond words. Our culture is very focused on verbal communication, but there are plenty of other effective ways to connect.

‍

‍

Communication with people living with dementia requires patience, adaptability, and person-centered approaches. By understanding the unique challenges dementia presents to communication and implementing these expert-recommended strategies, both professional and family carers can foster more meaningful connections and reduce frustration for everyone involved.

For more information on communication techniques and dementia care resources, visit the communication hub at Dementia Carers Count.

‍

In honour of Dementia Action Week, Dementia Carers Count are running a 90 minute online introduction to dementia training with 30% off if contacted before 25^th May 2025. Find out more here.

‍