Dementia Communication | Effective Methods & Practices

Dementia is not a single disease; it is an umbrella term to describe a collection of symptoms that a person may experience if they are living with a variety of diseases, including Alzheimer’s disease. Diseases grouped under the general term dementia are caused by abnormal brain changes. Dementia symptoms trigger a decline in thinking skills, also known as cognitive abilities, severe enough to impair daily life and independent function including memory, communication skills, behaviour, feelings and relationships, so effective dementia communication is vital.

Dementia symptoms are progressive which means that the signs of cognitive impairment start out slowly and gradually get worse over time, leading to dementia. Dementia symptoms vary however common symptoms include psychological and cognitive changes including:

Agitation
Anxiety
Being suspicious, known as paranoia
Confusion and disorientation
Depression
Inappropriate behaviour
Memory loss, which is usually noticed by someone else
Personality changes
Poor coordination and control of movements
Problems communicating or finding words
Problems with reasoning or problem-solving
Seeing things that aren’t there, known as hallucinations
Trouble performing complex tasks
Trouble with planning and organising
Trouble with visual and spatial abilities, such as getting lost

A person with any type of dementia can have problems with communication skills. This is because dementia can damage the parts of the brain that control language. In some types of dementia such as some forms of frontotemporal dementia (FTD), a person may start to have problems with language and communication skills much earlier than in other types of dementia.

People living with dementia may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue, or they may repeat themselves. They may take longer to process thoughts and work out how to respond to what is being said. They may also move from one topic to another without finishing a sentence as it becomes harder for them to focus. They may struggle with vocabulary, have trouble naming a familiar object or use the wrong name for example calling a watch a hand-clock, or using substitutes for words such as, the thing that you sit on instead of chair.

A person’s communication problems can also vary from day to day, be more or less of a problem at different times of the day, or can be made more difficult depending on the surroundings. The person’s overall health can also play a part, for example, communication can be more difficult if the person is tired, in pain, experiencing discomfort or unwell, in addition the side effects of medication can also cause issues with communication skills.

When a person with dementia experiences changes in the ability to hold or follow a conversation, it may cause them to withdraw from friends and family, interests, social activities or other types of engagements, and may cause people to feel insecure and lose confidence in themselves and their abilities. This can be upsetting and frustrating for the person with dementia and for their carers, friends and family.

People with dementia may face many challenges in communicating with others, however by adjusting and adapting communication styles, methods and techniques a person’s carers, friends and family can recognise these challenges and utilise effective strategies to improve their interactions and help to reduce frustrations on both sides. In this article we will explore actionable communication techniques and the small but important changes you can make to improve communication that can help to improve relationships.

The Importance of Dementia Communication in Care

Each person with dementia is unique, and the difficulties they may be experiencing in communicating their thoughts and feelings will be different. In general terms, during the earlier stages of dementia a person may begin to have some difficulties with following conversations, finding the right words when speaking and losing their train of thought when speaking. They may repeat themselves, or have some difficulties concentrating on what is being said.

As dementia progresses, so too will these difficulties increase. A person will also start to have difficulties following directions or instructions and will have poor recall when telling others about recent events. They may increase their use of gestures to communicate, and may even begin to invent new words or use substitute words as they can’t recall the exact word or phrase.

In late stage dementia, a person may begin to ramble sometimes making no sense, their recall of words, places and names fades, and they will have an inability to follow along with anything other than simple conversations and instructions. As dementia reaches its final stage, the person may cease to communicate verbally, using only non-verbal communication and they may fail to comprehend or react when spoken to.

Changes in the ability to communicate can vary so it is important for family, friends and carers to recognise these various stages where a person’s comprehension and communication skills begin to become more and more limited, as the breakdown of comprehension and communication skills can be devastating and cause strain on relationships. Confusion and misunderstandings are commonplace and can lead to frustrations for all parties, this is why understanding and patience are vital in all interactions with a person with dementia.

Communication is a vital part of our lives. It allows us to express who we are and relate to one another. Communication is more than talking and listening, it involves understanding and interpreting. Dementia does not change a person’s need for love affection and emotional connection, but it changes many aspects of a relationship. Communication breakdown contributes to high rates of depression in loved ones of people living with dementia and is a major problem for family and carers. This is why maintaining a sense of connection with family and friends through all forms of communication, is essential for the person with dementia’s emotional well-being.

Caring communication by loved ones using calming tones, familiar phrases, or reassuring physical touch can provide comfort, lessen confusion and reduce agitation in those with dementia. Their memory may make their surroundings feel unfamiliar and cause anxiety however a reassuring voice as well as calming touch, facial expressions, and gestures help to create an environment of safety.

Just because a person with dementia cannot fully engage in some communications, does not mean that they should not be included. Involving them in simple conversations or asking about their feelings can give them a sense of purpose and involvement and shows respect for them as an individual. Even if they struggle, show respect and empathy, adjusting the communication style to meet their needs, this will help to maintain the emotional bond and support their wellbeing.

General Principles for Communicating with Dementia Patients

Dementia affects everyone differently so it is important to communicate in a way that is right for the person. However, there are some general principles that should be applied when communicating with dementia patients:

Patience and Empathy

Empathetic communication means showing the person, in words and actions, that you hear them, understand them and that their feelings / emotions / experiences are valid and important. This allows you to react in a specific way to help them to feel better and comforted. When communicating with dementia patients, be patient and remain calm, this can help the person communicate more easily. Make sure you are in a good place to communicate. Ideally somewhere quiet, and with good lighting, as poor lighting can exacerbate confusion and disorientation.

Busy environments can make it especially difficult for a person with dementia to concentrate on the conversation, so turn off distractions such as the radio or TV. The environment plays a significant role in communication for people living with dementia, background noise and distractions can make it difficult for the person to focus. People with dementia often need time to respond particularly to questions, it can be tempting to jump in and prompt them or to try and guess what they are trying to say.

However, not every question needs an instant response and attempting to be helpful can backfire and make them feel as though you are rushing them or not paying attention to what they have to say. Instead, take a breath and allow the person as much time as they need to respond appropriately. Practice active listening, involves fully engaging with the person and showing genuine interest in what they have to say. Focus on their words, tone, and emotions, and respond with empathy and understanding. Repeat back to them what they are saying to ensure you understand correctly and ask open-ended questions to encourage them to express themselves further. Be patient and attentive and avoid interrupting or finishing their sentences.

Simplified Language

When speaking to a person living with dementia, it is important to be clear and concise. Try to avoid asking too many questions, or asking complicated questions. The person may become frustrated or withdrawn if they can’t find the answer. Try to stick to one idea at a time. Giving someone a choice is important, but too many options can be confusing and frustrating, give them simple choices such as “would you like a tea or a coffee?” Phrase questions in a way that allows for a simple answer. Ask yes and no questions or easy-to-follow open-ended questions depending on the person’s cognitive abilities. Speak slowly and clearly, giving them time to process what you are saying.

If the person doesn’t understand what you are saying even after you repeat it, try saying it in a slightly different way instead. If the person is finding it hard to understand, consider breaking down what you are saying into smaller chunks so that it is more manageable. Ensure that you use familiar words and phrases when communicating with a person living with dementia; you may also find that using visual aids such as pictures or gestures can help reinforce your message.

Non-Verbal Communication

Non-verbal cues play a crucial role in communication, especially for individuals living with dementia who may struggle with language. Maintain eye contact and use facial expressions and gestures to convey warmth and understanding. People with dementia may not always be able to articulate what they are feeling or what they want to see, but their body language can speak volumes. Pay attention to the person’s body language and respond accordingly.

Even people with severe dementia are able to show anger, fear, sadness or happiness in their body language and facial expressions. During the later stages of dementia, the person may not be able to communicate much at all. It may still be helpful to talk to the person, and communicate by touch if it feels appropriate, for example by holding their hand. You can use physical contact if it feels appropriate to communicate your interest and to provide reassurance.

You should also be aware that a person with dementia will read and interpret your body language. Sudden movements, the tone of your voice or a tense facial expression can upset or distress them, even if the words that you are saying are not upsetting. You should try to make sure that your body language and facial expressions match what you are saying, even if this might feel a bit forced at times. For example, it can be useful to smile when talking about pleasant memories.

Visual prompts are another form of non-verbal communication and can be very helpful. For example, using cue cards or a book of pictures of meals that a person can point to, helps them to communicate what they would like to eat. Assistive technology can also help with this through apps that show pictures or videos of different types of foods. This can help the person communicate as well as stimulate their appetite.

Positive Reinforcement

People living with dementia may experience confusion, frustration, or anxiety due to their unique medical condition. It is essential to validate their feelings and experiences, even if they don’t make sense to you. It is essential to show empathy and compassion whilst reassuring them that you are there to support them. People with dementia often retain the ability to sense the emotional tone of a conversation. Speaking in a gentle, reassuring voice can communicate love and care, even if the content of the conversation is not fully understood.

Effective Communication Techniques

Effective communication is about more than just exchanging information; it is about understanding the emotion and intentions behind the information. This is especially important when communicating with a person who is living with dementia and this is why it is crucial to learn effective communication techniques to engage in meaningful conversations with someone with dementia. Let’s looks at some of these in more detail:

Using Visual Cues

Visual cues are pictures, objects, symbols or gestures that help a person living with dementia to understand what someone is saying, what to do, or what is happening. It also helps the person with dementia to communicate their feelings, wants, needs and preferences when they may be struggling to find the words, and can help to jog their memory and act as a reminder. Above we gave an example of how showing pictures can help with food choices and even help to stimulate appetite in someone with dementia. However there are many other ways that visual cues can help in memory and communication for example:

Labelling drawers and cupboards with words and pictures of their contents

In earlier stages of dementia, the person will be able to read and many times both the picture and the word are helpful. But as the disease progresses, this may be more frustrating or difficult to do, so you can remove the word from beneath the picture to make it easier for them and to provide a more direct reference. It can also be useful to label rooms either with words, pictures and / or colours to help the person recognise different areas.

Cue cards

These are especially useful for people living with advanced dementia who have difficulty in finding words. Cue cards can be tailor-made to the needs of the individual and can be made with or without pictures depending on the individual. If the cue card contains words, this should be a single word, or a very short sentence to prevent confusing the person. If using pictures, try to keep to one style such as a photo or cartoon, again preventing confusion.

Cue cards can help people living with dementia to recognise familiar faces by giving them time to look at the photo when talking about that person. Body map cue cards can help carers and loved ones identify where a person with dementia feels pain by pointing at the area when they cannot verbalise it. Emoji cue cards can be really helpful to identify how a person is feeling, especially when they cannot find the words to describe their feelings and emotions, they will often recognise and associate for example a smiley face with being happy.

Body language

This accounts for 93% of communication, with the remaining 7% being the actual words used, and includes such things as tone of voice, gestures and facial expressions. It is crucially important when communicating with a person living with dementia as they may not always understand the words that are being said but will be aware of the body language. For example, when reminiscing, a person with dementia will recognise that these events were happy ones if you are smiling when taking about them, and this will be reassuring for them.

Creative forms of communication

Music, art, or storytelling can help individuals express themselves and stay connected with their loved ones. These creative outlets can help to overcome their verbal limitations and can evoke emotional responses.

Active Listening

When communicating with a person living with dementia, you will probably have to learn to listen more carefully. You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking. You will also need to actively listen, this means giving the person your full attention while they speak, maintain eye contact to look at the person, and encouraging them to look at you when either of you are talking.

It also means minimising any distractions that may get in the way of communication, and not interrupting them, even if you think you know what they are saying or trying to say. Listening actively and with empathy will help you to better understand the person’s situation from their perspective.

Asking Simple, Direct Questions

Asking questions is helpful when communicating with a person living with dementia as it keeps the conversation flowing, and shows that you have listened to what is being said. Dementia affects the way a person thinks, which can impact on their ability to respond appropriately or to follow a conversation, so asking simple questions such as “You were telling me about your garden, what is your favourite flower?” or “You were telling me about your garden, do you like roses?” can help to keep the conversation on track.

When asking a person with dementia about preferences such as what they would like to do or what they would like for dinner, it is helpful to restrict the choices to avoid confusion, for example rather than asking “where shall we go today?” you could ask “Do you want to go to the park or to go for a drive?” or “would you like fish for dinner?” limits the options making it easier for the person to answer.

Repetition and Rephrasing

When communicating with someone living with dementia, there will be times when you may not fully understood what the person has said don’t be afraid to ask them to repeat it. If you are still unclear, rephrase their answer to check your understanding of what they meant. If they don’t seem to understand what you have said, first, try repeating your sentence, if that doesn’t work, say the sentence in a different way or break it down into shorter statements and speak more slowly, use familiar words and phrases, repeating key words, and avoid jargon that might cause confusion.

Providing Reassurance and Comfort

When communicating with a person living with dementia, they may feel disoriented or anxious, so it is essential to validate their feelings and experiences, even if they don’t make sense to you. Show empathy and compassion while reassuring them that you are there to support them. Saying things such as “It’s okay” or “You’re safe here” can acknowledge their emotions and provide comfort and reassurance.

Tailoring Communication for Different Stages of Dementia

Dementia progresses in stages, sometimes referred to as either early, middle and late stage or mild, moderate and severe. Symptoms and stages will differ for each person, but all people living with dementia will gradually decline, meaning it will become harder for them to be able to communicate. The decline in ability to communicate becomes more challenging through the different stages of dementia. Let’s look at some strategies to adopt at the various stages to help reduce the confusion or distress for a person with living with dementia.

Early Stage Communication: In the early stages of dementia, a person is still able to participate in meaningful conversation and engage in social activities. However, they may repeat stories, withdraw from conversations, or have difficulty finding the right word. It is important not to make assumptions about a person’s ability to communicate because of a dementia diagnosis, because as we have stated, the disease affects each person differently.

It is crucial not to exclude the person with dementia from conversations with others, or to speak about them as if they are not in the room, instead speak directly to them if you want to know how they are doing, what they are thinking. You may need to take time to listen to how the person is feeling, what they are thinking or what they may need.

Give them time to respond to you and don’t interrupt or finish their sentences unless they ask for help finding a word or finishing a sentence. Encouraging independence in communication is important for their self-respect and confidence, so keep the person living with dementia involved in decisions and try to avoid taking over.

Keeping in touch with people is also good for confidence and mental wellbeing, such as meeting up with friends and family, to reminisce life experiences and stories from the past. You can encourage these conversations and memories by using photos or objects to prompt their memory and to develop the conversation.

Middle Stage Communication

The middle stage of dementia, sometimes referred to as moderate dementia, is typically the longest and can last for many years. As the disease progresses, a person living with dementia will have greater difficulty communicating as time goes on. Some common changes at this stage of dementia include repeating the same question or statement over and over again, this is a result of memory loss where the person cannot remember what they have said and can be frustrating and upsetting for others.

It is important to remember that the person is not being deliberately difficult, so be tactful and patient. If they say something that sounds a little strange, don’t just let it go, listen empathetically to try and tease out their meaning.

Even if the conversation wanders away from the issue at hand, there’s always a reason that they are trying to express something that matters a lot to them at that moment, so although it can be hard to figure out what they trying to express, ask simple questions, or utilise visual cues and non-verbal communication to help you understand the heart of the matter. You could try offering up suggestions instead of asking direct questions, for example “how about a cup of tea?” and “let’s take a walk”.

When you are interacting with a person living with dementia, be respectful and treat them as the adult that they are. The natural reaction might be to treat them as a vulnerable minor, and it may be tempting at times to talk about them as if they are not there, or even speak to them as if they are a small child, even if you don’t intend to do so. Although they may be vulnerable, they are adult and should be respected as such.

Late Stage Communication

At this stage, people living with dementia experience increased loss of vocabulary, including personal information and loved ones’ names. They are increasingly unable to follow storylines in books, TV shows, or films, and have a tendency to talk about nothing, often rambling, or babbling. Many will have the inability to speak or otherwise respond verbally and have difficulty or inability to understand when spoken to, at this stage all communication may be non-verbal.

People at the later stages of dementia may not always be able to articulate what they are feeling or what they want to see, but body language can speak volumes. Facial expression is another thing to watch for as it is a very accurate barometer of how the person may be feeling. Even people with severe dementia are able to show anger, fear, sadness or happiness in their body language and facial expressions. Responding to their emotional state through such things as touch, and voice tone is more important than what you are actually saying.

Common Challenges and How to Overcome Them

A person with dementia cannot change the way that they communicate with us, so it is our responsibility to change how we communicate with them in order to enhance their understanding and wellbeing. Below we have highlighted some of the common challenges that you may encounter when communicating with someone living with dementia and have provided some tips that you can use to help to overcome them:

Repetitive Questions

Take the time to understand the underlying feelings and concerns behind their repeated questions. For example, they may be seeking reassurance or trying to piece together fragmented memories. Respond in a calm and respectable manner, and only respond with short answers that directly relate to their questioning. Sometimes repetitive questioning can be caused by a form of boredom, anxiety, or uncertainty so try to distract the person living with dementia with a favourite activity or redirect the conversation to a topic that is easier and more familiar.

Confusion and Frustration

Should the person living with dementia get confused or frustrated for example at not being able to put over what they mean, or if they do not understand something, gently reassure them with calming words and gestures. Pause and allow time for the person to process what you have said and check for understanding.

Agitation During Conversations

To help reduce any annoyance or distress in a person living with dementia, you should be clear and concise in what you say. Use short sentences and short familiar words. Encourage all forms of communication, soft voice tone, gestures, pictures and positive facial expressions, etc. which will help to keep things calm if the person cannot find the right word, and will reassure them that they are being listened to.

Common Challenges and How to Overcome Them

There are several environmental factors that can have a positive impact on those living with dementia, proper lighting can help to reduce shadows and glare, which can be confusing or frightening, and it can also help the person to see facial expressions during conversations. Providing clear signage and other cues can help dementia patients orient themselves and feel more secure in their surroundings.

Quiet and Calm Settings

Excessive noise can be overwhelming and cause anxiety for someone living with dementia. Creating a calm and quiet environment can help promote relaxation, and can enhance communication by enabling the person to focus rather than being distracted.

The Role of Environment in Supporting Communication

Familiar Surroundings – Being in familiar surroundings can help to minimise confusion and anxiety, can promote a sense of calm and may help them to recall happy memories. Making small changes such as labelling cupboards and rooms can help with problems such as memory loss, and disorientation. People living with dementia thrive on familiarity. Familiarity is important because dementia gradually impairs a person’s ability to plan, initiate, and complete an activity. If they can still perform an activity in familiar surroundings, they can still retain their sense of control and independence.

Involving Family and Friends in Communication

People living with dementia may withdraw from social interaction, but being around others can actually provide numerous benefits. Encouraging socialisation with friends and family members through activities or simple conversation can help to improve mood and cognitive function.

Education and Training

Communication can be hard for people living with dementia, but it can be just as difficult for friends and family members who may never have experienced communicating with someone whose memory and language abilities are affected. This is why it is important for loved ones to learn about the disease, and techniques for adjusting communications. This will help you know what to expect as the dementia progresses and what you can do to keep lines of communication open.

Maintaining Relationships

Dementia can affect all aspects of a person’s life, including relationships with family and friends. Relationship with that person will change, however it is crucial for the person’s mental and physical wellbeing that positive and caring relationships are maintained. Communication is an important part of any relationship, but over time, someone living with dementia will find it more difficult to communicate, so patience and empathy goes a long way for everyone involved.

While the dynamic between you and the person living with dementia might change, you can still enjoy a close and meaningful relationship by trying to find new ways to connect with each other, for example through activities, playing board games, watching films or looking through photos. Focus on what the person can still do, rather than on what they can’t, to help them maintain some independence.

Conclusion

Communication, both verbal and non-verbal, plays a critical role in maintaining emotional bonds between individuals living with dementia and their loved ones and caregivers. Effective communication techniques can make it easier to meet the needs of the person living with dementia, and for you to understand each other. In this article we have highlighted the importance of using visual cues of simplifying language, and of practicing active listening, all of which help to provide reassurance, and comfort, helping to reduce anxiety and increase well-being.

Even as verbal communication becomes more difficult and sometimes challenging as the disease progresses, emotional connection through compassionate and empathetic communication remains vital. It is important to take time to try and understand the feelings and experience of the person living with a dementia in order to enhance their quality of life and sense of wellbeing.

There are many organisations and support groups that can provide support and advice to anyone who has either been diagnosed with dementia themselves or anyone who has a loved one who is living with dementia, these include:

Dementia UK – provide free advice, support and understanding to help families care for their loved one

Age UK has advice on a range of topics, as well as information on local activities and services for those with dementia. It runs a free Age UK Advice Line on 0800 055 6112.

NHS Dementia Information Service

The Young Dementia Network for people living with young onset dementia and their families

Rare Dementia Support offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis.

Effective Communication Techniques for Individuals with Dementia

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The Importance of Dementia Communication in Care