The couple had almost stopped talking to each other. Her husband struggled to find words and no longer took the initiative to start conversations. Then they received help.

Language difficulties are probably not the first thing you think of when you hear the word dementia. Yet there is a rare form of dementia that begins with precisely that. People who develop language-related dementia, known as primary progressive aphasia (PPA), soon find that everyday conversation becomes difficult.

“Many say that they know what they want to say, the word is on the tip of their tongue, but they are unable to produce that specific word,” explains speech and language therapist and researcher Ingvild Elisabeth Winsnes at the University of Oslo.

The importance of taking part in conversation

In the absence of the right word, some people tend to use more general terms, such as “the bird” instead of “the magpie”, or “the piece of furniture” instead of “the sofa”.

“They generalise more and use broader concepts. Many also find it difficult to understand what others are saying. If their conversation partner speaks quickly or uses long sentences, it can cause great frustration,” explains Winsnes.

Although the figures are uncertain, rough estimates suggest that around 200 people in Norway are living with language-related dementia.

As a speech and language therapist, Winsnes received referrals for patients with this diagnosis, but she realised that there was no treatment programme for this group in Norway. She decided to change that.

“The most important thing for people with this diagnosis is being able to take part in conversations with family and friends. There are effective treatment approaches from abroad, so I wanted to explore whether we could adapt them to Norwegian and establish a good service here.”

Developed the first treatment of its kind in Norway

Dementia cannot be cured, but experience from, among other places, the UK shows that speech and language therapy can help stabilise language difficulties and teach people strategies for communicating with their loved ones – even when they struggle to find the right word.

“This does not mean that you get better, but you may be able to live with the communication challenges,” says Winsnes.

She has now carried out the first Norwegian study on conversation training for people with language-related dementia.

“We have established a treatment in Norway that can help them have conversations with family and friends.”

Several strategies for conversation

Winsnes began by studying how patients and family members talk to each other. She asked them to send video recordings from everyday situations at home where they would usually talk together. She then analysed which words they used and what the conversation partner did to help.

“We then practised conversations between the patient and the family member during the speech and language therapy sessions. It is most effective to build on the strategies the person already uses in conversation, so that these can be used even more,” explains Winsnes.

One strategy is to explain the word. When one participant in the study got stuck and could not think of the word, her husband said: “Talk around it.” She replied: “You know, the thing we have in the garden, we picked it yesterday, then we made the thing we eat, and it turned out really nice.” “Oh yes, you mean apple jam,” her husband answered.

“She knew what the word was, but her mouth could not keep up with her thoughts.”

Another strategy is to draw what they want to say and always have a small notepad and a pen to hand. One participant in the study was trying to explain what she had done the day before but could not find the word. She then drew a scene, and her conversation partner understood that she had been to the theatre.

Had given up talking to each other

Speech and language therapy is about setting goals and practising.

“We talk with the couples about what they want to work on and in which situations they will practise it. Then they practise at home, and we review how it went. It is important to see whether they can use the same technique in similar situations,” explains Winsnes.

So far, experience suggests that the treatment is working well.

“The wife of one patient in the study said that they had basically given up talking to each other, that he never initiated a conversation,” says Winsnes.

But after they took part in conversation therapy and received tips and strategies, they picked up their conversations again.

Several participants felt they received a different kind of follow-up than in hospital, because conversation training intervenes much more directly in their everyday lives and captures the bigger picture to a greater extent.

“Talking to each other is something we do all the time in every relationship we have. You may not realise how important it is to use your language until you suddenly can’t do it any more,” says Winsnes.

Managing for longer with treatment

Since this is an adult patient group, she wants the conversations to focus on topics they would normally discuss – not just everyday matters such as what they would like for breakfast.

“We have discussed a lot of politics in the conversation training, for example the war in Ukraine. They are adults, and we should take them seriously. They will, of course, deteriorate, and over time many will find that conversations become more difficult. But with adjustments, they may be able to manage in conversation for a bit longer.”

She is very keen to make sure people know that help is available.

“I have met people who have been told by their doctor that they have a rare dementia diagnosis, but that unfortunately there is no treatment. We have an important job to do in raising awareness. Because there really is help available,” she emphasises.

Making the treatment available across the country

The next goal is to secure funding to test the treatment in more locations.

“We want to roll it out in the municipalities, to speech and language therapists there, to see whether this can work nationwide. I also hope to collect more information about how people with this diagnosis converse with their relatives. This is important for developing a better treatment programme.”

One type of treatment will not work for everyone; it must be adapted to each individual. Some want their partner to say the word for them, while others need a lot of time.

The couple who had given up talking to each other now have a fixed time for a conversation every day.

“My aim is to help people manage what they feel is most meaningful in life: staying connected to the world and maintaining relationships with others. We now have a treatment that can help them do exactly that, and we know that it works for Norwegian patients too.”