Language and communication
Although we tend to think about language as the main source of communication, it is important to remember that all behaviour can be a way of communicating by sharing information about ourselves, our needs and the environment around us.
When we refer to language and communication, this includes speaking (articulating sounds, selecting words and putting these into sentences) as well as understanding what people say (the sounds, words and sentence grammar). Being able to write letters, words and sentences, as well as read them is also part of this type of communication (see RDS information on literacy and numeracy for further details).
Yet, communication is much more than this. It includes knowing when to take a turn, when to answer a question, how long to make eye contact for and whether to gesture, point or nod. It includes facial expression, tone, pitch and even the decision about where and who to sit or stand next to. Being able to empathise, read between the lines and infer what someone is saying is also a part of communication. In other words, communication is incredibly complex, involving more than one person and is often very different with different people.
Why do changes in language and communication happen?
Dementia can affect how someone communicates. Depending on which part of the brain is affected by dementia, the symptoms and the way they affect communication will be different. All of our senses and behaviours impact our communication, but this section of the website focuses on the ways in which dementia can impact communication due to changes in the ability to use language.
Some people living with dementia may experience a reduction in their vocabulary. They may struggle to recall specific words and may rely on more general or generic terms instead. People sometimes describe that a word is ‘on the tip of their tongue’, but they are unable to articulate it. This can lead to difficulties in expressing thoughts accurately.
Dementia can affect the natural rhythm and intonation of speech. People may speak more slowly, with pauses or irregular speech patterns. They may also develop changes in the pitch or volume of their voice and may change the words they stress in a sentence, making their speech sound unusual or monotonic.
Some people may struggle to understand the meaning of words they previously knew and used. The difficulties making meaning of previously understood concepts can also include difficulties making sense of what we see, smell, taste, touch and hear – all of which can impact upon communication in various ways.
As well as finding and understanding words, putting words into meaningful sentences can be a challenge for some people living with dementia. This is a result of damage to the part of the brain that is specifically responsible for this function. Difficulties with memory can also impact this ability, for example, if we forget what we were intending to say, or lose track of the conversation we are contributing to. When we have difficulties choosing the right words to express ourselves, we may end up picking other words that are not an accurate representation of what we want to say but are somehow connected. For instance, if we want to say that we spent the morning having a nice walk in the countryside, we may not be able to find the right words to explain this and just say that we saw a river and mountain and trees. Even if there were no mountains or trees, they are things related to the countryside and this may be our way to explain our experience.
Echolalia is the term given to describe the repetition of words or phrases without meaningful intent. It is sometimes thought to be used as a coping mechanism to compensate for communication difficulties. In many people living with dementia it is caused by damage to the frontal lobes of the brain, and specifically in the left hemisphere.
The use of an excessively large number of words to describe a relatively commonly known object or concept is known as circumlocutory speech. People may refer to an object, event or person, describing its characteristics instead of using its name, and often in a very ‘roundabout’ manner. Sometimes the object being described can be clearly understood, for example “the thing used for cutting bread” instead of “knife”, but on other occasions the roundabout speech may continue in ways which divert away from the original conversation and are not clearly identifiable. This can be very frustrating for both the person living with dementia and those they are trying to communicate with (see RDS information on adapting emotionally for further support).
We hear with our brains as well as our ears, and the parts of the brain that we use to hear and understand sounds and voices are affected by different forms of dementia at early stages, meaning that hearing can also be affected for people living with dementia.
Below are descriptions of some examples of the more common language symptoms associated with rare dementia diagnoses. However, it is often the case that people with other types of dementia also develop these difficulties at some point. Whilst there are some similarities in symptoms depending on the type of dementia that a person has, there are also many variations. It is important to remember that even when there are no outward signs of language difficulties, people living with dementia may be working harder than others to keep up with conversations and make meaningful contributions to them. It is also important to appreciate the impact that this can have on people and the ways in which it can affect confidence, interest and self-image (see RDS information on adapting emotionally for further support).
Try not to feel frustrated if attempts to communicate don’t work as well as everyone had hoped. Sometimes things go better than others, for all sorts of reasons. Be prepared to take a break and come back to the conversation later. Recognise that everyone is working to refine and train their communication skills.
Not everybody with dementia will experience all these symptoms, but it may be helpful to know about them, and to have some strategies for adapting to them.
Word-finding difficulties, speech production and sentence making difficulties
In some types of dementia, and particularly for people living with primary progressive aphasia (PPA), damage occurs to the part of the brain that is responsible for finding words and using them in a meaningful way. A person may know what they want to say but have difficulties finding the word they want and creating a sentence, and may find producing the spoken words very effortful. Whilst some of these difficulties may be apparent, and show themselves in hesitant or slow speech, it is important to remember that even when difficulties are not obvious, people living with dementia may be working additionally hard to communicate generally, and to keep up with and contribute to conversations.
Difficulties in finding and retrieving words from memory can lead to pauses, hesitations, or the use of placeholder words like “thing” or “stuff.” These symptoms are referred to as anomia, and can result in fragmented or incomplete sentences. Despite these difficulties, people living with this type of dementia are often still able to understand what is being said.
In some types of dementia, and particularly for people living with semantic variant PPA, damage occurs to the part of the brain that is responsible for our knowledge of what words mean and what objects are. A person may have more difficulty understanding what is being said as their ability to understand spoken or written language reduces. They may have difficulty comprehending complex instructions, following conversations, or understanding abstract concepts. This can lead to misinterpretations and confusion during communication, which are often frustrating, exhausting and sometimes embarrassing for the person trying to communicate, and those to whom they are communicating.
Examples of word finding difficulties, speech production and sentence making difficulties
“I know what I want to say but it takes me so long to get my sentences out these days. People often make incorrect assumptions about me because my speech is so slow and effortful. Sometimes it is just that they are impatient and can’t make the time to hear me out, but other times I feel that they write me off as not being able to contribute or join in in the conversation in a meaningful way. That is really upsetting and hurtful. I prefer to write things down.”
“You have to concentrate really hard to understand what she is saying. You just don’t realise how important the small words are until they aren’t there…it’s exhausting for both of us. You take language so much for granted.”
“Giving the wrong answers to questions can have quite significant consequences. It’s so frustrating and I realise that it must be very trying for the people around me. I sometimes give up trying and just go with whatever people think I mean– it’s easier, but often means I don’t get what I want.”
Examples of word finding difficulties, speech production and sentence making difficulties in people living with dementia include:
- slow speech
- hesitant speech
- effortful speech
- difficulty finding the right word
- missing out small words like ‘the’ or ‘and’
- mixing up of “yes” and “no”, and also other word pairs such as “hot” and “cold”. This tends to be most common in nonfluent variant PPA (nfvPPA) and can be frustrating for both the speaker and the hearer
- mixing up certain sounds such as ‘p’ and ‘b’
- repetitive speaking, repeating a word, phrase or gesture without an ongoing occasion or rationale for that behaviour is also referred to as perseverating.
- there may be problems understanding speech
- there can also be difficulties with writing, reading, and with numbers
Difficulties understanding words
In some types of dementia, and particularly for people living with PPA, damage occurs to the parts of the brain that are responsible for understanding what words mean. People living with other types of dementia can also experience these difficulties.
Examples of difficulties in understanding words
“There are times when he is speaking and he seems to go off in an endless stream of words. The gestures and facial expressions he makes all indicate that the words are meaningful and relevant to him, but we can’t always follow them, and really struggle to understand. It is so frustrating– for all of us, and we feel so sorry that we aren’t able to get the gist of more of his words.”
“I feel bad because I get so frustrated with her. She used to be so ‘on top’ of everything at home and so quick and speedy. The other day we were trying to write the shopping list together. It took so long– nothing was straightforward. Trying to help her describe the things she wanted to add to the list was exhausting for both of us. Sometimes I think it would be easier just to take over and do it myself, but I don’t want to take away the opportunities for independence that she does still have. It’s hard to get it right.”
“I never realised how quickly people speak. Or how they jump around between conversation topics. I took it for granted– but now I really struggle to make the connections and keep track. I want to contribute to the conversation but by the time I have got my words ready– the moment has moved on.”
“I feel embarrassed a lot of the time. I think that people make the wrong assumptions about me when they hear me hesitating and struggling for words. I’ve lost a lot of confidence and I don’t really enjoy social events the way I used to.”
Examples of difficulties understanding words in people living with dementia include:
- problems finding the right word
- forgetting what words mean
- difficulty understanding what other people say
- problems writing or reading
- language tends to get worse over time, with an increasing difficulty to name things
- speech can become ‘empty’. There may be many words that are spoken but without an obvious thread or link. It sometimes feels that a person is unable to find a way out of their conversation.
Tips, strategies and adaptations for language and communication difficulties
Everyone has a different communication style, regardless of their communication difficulties. This means it is not possible to provide a set of guidelines that suits everybody. The following ideas are based on a combination of what people living with dementia have told us and clinical experience. If any of them don’t work for you or cause distress, then please don’t persevere.
Where possible it is advisable to seek advice from a trained speech and language therapist (SALT), who can provide personally relevant strategies. Speech and language therapists can be helpful for people with communication difficulties and their families. They can work on speech, language and communication treatments and interventions and also provide training to use communication aids. Speech and language therapy isn’t just for the person with dementia. Training partners, family members and friends in communicating more effectively with the person with dementia is also very important. It is important to note that the speech and language therapy needs of people living with language-led symptoms of dementia are different to those which may be provided more generally, or for people living with the impact of a stroke or other brain injury. Make sure that the SALT is aware of the diagnosis and able to advise and treat accordingly. You can ask them to register for RDS membership, or get in touch with the Direct Support Team by emailing contact@raredementiasupport.org for further resources.
- Ask about preferred ways of communicating. What we assume will be helpful is not always what other people want or prefer. For instance, discuss whether being given extra time when struggling to find a word is helpful, or whether the preference would be that other people provide the word promptly, if they know it, to reduce feelings of frustration.
- Ensure background noise and other distractions are minimised or removed.
- Ensure that any usual aids are available, hearing aids etc.
- Pay attention to body language when a person is speaking: Where are they looking? What are they doing with their hands? Maybe they are using gestures that may give a clue as to what they mean. Likewise, be mindful to use body language to assist with communication.
- Smile and have a friendly facial expression.
- Look at and listen to the person with the diagnosis of dementia, and everyone else in the conversation. Try to respond to what we see as well as what we hear. Often we can interpret a message without the words needing to be exactly right. Acknowledge what can be seen as well as what can be heard. For example, “I can see that you look sad today.”
- Pay attention to the person’s voice: are they anxious, angry, excited?
- Allow plenty of time for a conversation and for verbal input to be processed.
- Avoid interrupting or over-correcting.
- Repeat questions or statements if they haven’t been understood. Don’t assume that they cannot be understood.
- Respond positively to all communication interactions, reinforcing the efforts even if the message is not fully conveyed.
- Adjust expectations to reflect abilities and to allow for success and positive outcomes.
- What else is happening? Be aware of situational contexts which might help clarify messages we are struggling to speak or understand. For example, if it is a mealtime, communication may be related to the food.
- Simplify communication: shorten sentences, reduce rate of speech, emphasise key words, and break down questions. For people living with sematic variant PPA (svPPA) it can be helpful to use descriptive terminology in place of nouns.
- Some people, particularly people living with logopenic variant PPA (lvPPA), find it useful if key words or sentences are written down, or if instructions/messages are given just one at a time.
- Try using cue cards that display specific messages. These could contain a few key words and an image which reinforces the words/message. Communication cards are widely available (for example Red Bear cards) but many people create their own bespoke versions.
- Try to include as many helpful additional ways to communicate. Facial expressions, drawing, writing and pointing might be helpful additional ways to convey a message.
- Some people, particularly people living with non-fluent variant PPA (nfvPPA) find closed questions (that require a yes/no answer) too difficult to answer, so using more open questions can be easier. Alternatively writing down/showing a set of multiple choices can be useful. Other people may find that reduced options and yes/no answers are more helpful. Be prepared to experiment and see what works best.
- Some RDS members describe that it is helpful to try using ‘non-verbal’ responses, such as using thumbs up or down, or pointing up or down to indicate “yes” or “no”, but these strategies don’t work for everybody. Use whatever techniques work best to enable participation in decision making conversations.
- Some people with semantic variant PPA (svPPA) find it difficult to speak about topics they do not know much about, or that are not in the here and now. Talking about things that are currently relevant, using photos or videos can be useful.
- We know that group conversations are especially difficult, but that people generally continue to enjoy the company of others. Work together to decide what is best. Agree in advance some techniques that help. For example, you might agree to remind people in the conversation, that although it now takes longer to get the message across, with time, you/the person living with the diagnosis of dementia can do so. Or that you/they don’t want to be put on the spot to speak, but are enjoying being part of the conversation experience. Some people might decide to carry a card which reminds people to speak more slowly and allow more time for responses, which can be easily shown if conversations are going too quickly. Contact the Direct Support Team for further details by emailing contact@raredementiasupport.org.
- Try to continue usual conversations so long as they are not causing distress. Pull on as much shared knowledge and information as possible to help make communication easier. A person’s identity, childhood, job and the things that are important to them can all help us piece together important pieces of background and context.
- Try electronic communication alternatives such as laptop computers and the various software packages available. Advice on communication aids and software can be provided by speech and language therapists.
- Use a mobile phone to take photographs that capture significant moments throughout the day. These can be used as a communication aid when discussing the day or telling other people about an event.
- Singing can sometimes be easier than speaking , so choirs and singing groups can provide enjoyable opportunities, and are often available in local venues. Or join an online singing group such as The Sofa Singers.
- Check back that the message has been understood correctly. For example, ‘So you saw John today?’
- If communication is becoming distressing or frustrating, take a break. Shift the focus toward activities that are not language based, for example, taking a walk or doing a job together. But remember that the message may be important, so revisit the conversation and provide opportunities to re-try.
Wearing or carrying some form of ID which alerts people to any speech and language problems can be helpful in a variety of situations. Whether trying to explain why we are having difficulties communicating, or needing to let people know in an emergency situation about our needs, access to helpful information about us can be critical. MedicAlert is a charity that provides custom-made medical ID jewellery. Bracelets or necklaces have an internationally-recognised symbol on them and a telephone number, which anyone can ring and be able to access the medical information you have chosen to store on your secure electronic record, 24 hours a day, 365 days a year. There are multiple products on the market, and another option is available on the ID Band Company website. Rare Dementia Support provides pocket sized cards which briefly explain the rare dementia diagnosis, the most likely challenges it presents, and has space for essential contact numbers to be added. These can be printed off and carried in pockets, wallets or bags, or worn together with the Hidden Disabilities Sunflower Lanyard. Email contact@raredementiasupport.org for more information about these cards.
Try not to feel frustrated if attempts to communicate don’t work as well as everyone had hoped. Sometimes things go better than others, for all sorts of reasons. Be prepared to take a break and come back to the conversation later. Recognise that everyone is working to refine and train their communication skills.
The following RDS website pages may also be helpful for additional information:
People who can help
Many people living with dementia work out ways to adapt to and manage the symptoms that they live with. Conversations with other people who are living with a similar diagnosis often provide empowering and insightful hints, tips and suggestions, shared by those who understand the impact better than anyone. There are some aspects of symptom management which professionals can assist with in meaningful and ongoing ways and it is important to engage the services of professionals where possible.