Communication

Caregivers often find it difficult to understand what a dementia patient is saying, or to explain something to them.

The person with dementia cannot understand what people say, or explain what he/ she wants

What caregivers can do:  Make it easier for patients to understand them by changing how they speak, such as use simple words and sentences, speak clearly and slowly. Learn how to understand what the patient is trying to say. Help patients express what they need.

Dementia patients fumble over words and cannot express themselves. We don’t understand what they want. Are they hungry? In pain? What has upset them? Also, when we tell them something, such as it is time for the bath they look blank and don’t respond. Or they get agitated or look scared.

Being able to talk to, and understand the patient is an essential part of caregiving. It improves our connection with the patient and adds to their sense of well-being. It reduces chances of agitation/ withdrawal, or other behaviours that are worrisome.

To communicate effectively with a dementia patient, we can use some basic communication tips. The key to these is understanding the patient’s problems and accordingly adjusting how we communicate.

Caregivers, fatigued and overwhelmed with every attempt to communicate, tend to reduce communication to a minimum. We lack the time and energy to just sit with the patient and listen to them, or to share those simple, daily tidbits we may have shared with others. This robs us and the patient of happy moments when we relax and enjoy each other’s company. Yet, fulfilling communication is possible even with dementia patients if we accept their reality and are flexible.

On this page:

Video discussing communication problems and strategies

The video below discusses problems patients may be facing while communicating and suggests strategies and tips that family caregivers can use to make communication easier and more effective. The video uses pictures and sketches to explain the suggestions, and is available in English and Hindi.

View the English video below. If the video player does not load, you can view it directly on Youtube by clicking here.

The English transcript can be downloaded here.

The Hindi video is available at this link: Hindi: Dementia aur Baatcheet

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Basic communication tips
  • Remind yourself that this person has a genuine problem in understanding you, and in telling what he/ she wants
  • Make the environment free of distractions
  • Communicate simply, and also use gestures
  • Give the patient time to understand and respond
  • Stay alert for the patient’s response, and change your way of communicating accordingly
  • Mentally, remain calm and helpful

To effectively understand the patient or to explain something, we need to take the patient’s abilities into account while communicating. We must remember that the patient finds it difficult to understand words and their meanings and forgets what is being said even while we are speaking.

We must remember that the patient’s ability to understand and communicate deteriorates over time. It also varies across days; it may be better on some days and worse on others. Communication is more difficult when the patient is tired or upset, and easier when he/ she is relaxed. Caregivers have to adjust how they communicate depending on the patient’s situation and response. If the patient looks confused or tense, or turns the body or face away, we need to change what we are doing.

In general, we need to do things that make it easier for the patient to understand us, and to tell us what they need. But in our attempt to simplify communication for the patients, we should not start behaving as if we are talking down to the patient, treating them as stupid or ignorant persons. Respect for the patient is a must; they will sense any disrespect or irritation immediately, and feel hurt and insulted. A simple criterion to use is to think of how we would want to be treated if we were the patient.

Communicate without distractions and in a non-threatening environment

Patients need to be able to pay attention to what is being said. They should feel relaxed.

  • Make it easier for the patient to hear you clearly.
    • If the patient uses hearing aids, make sure these are working properly.
    • Make sure there are no distracting sounds.  Switch off the TV/ radio. Do not try to communicate when there are noisy sounds of plates or cooking in the background, or someone talking loudly on the phone.
  • Face the patient; do not speak from behind, because the patient may feel alarmed or threatened.
  • If the patient looks at you in a puzzled/ disoriented way, as if not sure who you are or why you are there, introduce yourself briefly to help orient the patient.
  • Maintain eye contact; lower yourself for this if necessary.
  • Remain calm and pleasant.

Simplify communication

Patients have problems understanding complex words and sentences, and remembering what they just heard. They need time to understand things.

  • Use simple sentences with simple words.
  • Speak simply and slowly.
  • Give the patient time to understand (and, if needed, respond) before continuing with the next sentence.
  • If the patient looks confused, we can
    • reword using synonyms
    • add gestures
    • pause
    • ask the patient what he/ she wants

Simplify instructions

Instructions are complicated for patients, because they must understand what is being said, and then see how to do it. When asking them to do something:

  • Mention only one step at a time.
  • State clearly what is to be done.
  • Do not tell the patient what not to do (patients sometimes cannot differentiate between “do” and “don’t do”).
  • Avoid explanations of why it is necessary or what will happen if the task is not done (this is unnecessary and only burdens the patient who is already struggling to understand what you are saying).
  • Acknowledge when a task is done with a simple, positive statement.

(see also: Helping with Activities of Daily Living)

Simplify questions

Questions are stressful for patients because they may feel stupid if they do not understand the question, and because they are unable to answer. On the other hand, patients sometimes want to be able to choose.  If we notice patients looking confused or tense, change the way we ask questions:

  • Ask simple questions and avoid giving complex choices. Limit choices to two or three options, and keep each option simple.
  • Avoid rhetoric questions.
  • Avoid unnecessary questions.
  • Give patients time to respond, and if necessary, rephrase the question or prompt the patient.

Supplement speech with other modes of communication

As words may sometimes not mean anything to the patient, in addition to talking:

  • use gestures, such as pointing to an object, or demonstrating what action you want done (For example, point to the toothbrush when asking the patient to brush her teeth).
  • let the patient touch an object or smell it or see a picture.

Be careful of non-verbal communication

In most forms of dementia, patients retain the ability to sense non-verbal signals. They are usually able to sense the mood of the person speaking to them. For example, they can sense agitation, irritation, impatience, and mockery. It makes sense for caregivers to actually feel calm and relaxed, and to have genuine affection and respect, because the patients sense this and feel relaxed. Communication is much easier when patients are relaxed.

  • Stay calm and pleasant.
  • Even if the patient is doing something wrong, remain calm as you gently, but firmly stop them.
  • Use simple words like “Please stop” and “No“, rather than saying “What are you doing!!” and “You’ll hurt yourself!!” and “Can’t you see it is hot and you should not touch it?” You want the patient to stop the action, not to spend energy trying to understand the reason.
  • Do not speak loudly or in a fast or excited way, as the patient may perceive this as shouting and scolding. No one likes being scolded.
  • Do not shout or scold.
  • Remain pleasant. Some patients respond well if the caregiver smiles; others suspect that the caregiver is mocking at them. Smile only in a way that doesn’t offend the patient.
  • Use touch if appropriate. Some patients like being touched, and like it if their hand is held. Others dislike this and consider it an invasion of privacy. Touch the patient gently if the patient likes it, otherwise maintain a suitable distance.
  • Do not touch or hold the patient in any way that may seem aggressive. Sometimes, caregivers, to get the attention of the patient (or out of frustration), grab the patient’s shoulder–this frightens the patient. Do not grab or shake the patient.

In some forms of dementia, the ability to understand facial expressions reduces, and patients may seem disconnected to the emotions of people around them. They appear apathetic, and their behavior may also be socially inappropriate. It may seem that being careful about the non-verbal aspect is pointless in such situations, but that is not true. The patient may still have some sense of emotions of others and they may care in some ways, even if their behavior does not reflect it. In any case, staying calm and pleasant helps the caregiver remain more balanced and in control, and keeps the communication environment more amiable and effective.

Help patients tell you what they want

It is very frustrating for patients who want to say something when they are unable to talk.

  • If the patient fumbles for a word
    • Prompt them if you think you know what they mean
    • Ask them to point out to what they want
    • Wait patiently
  • The patient may stop mid-sentence, having forgotten what he/ she wanted to say. If the patient does not seem agitated, don’t insist that the patient completes the sentence. Just wait, or gently prompt.
  • Sometimes, patient make mistakes. Caregivers often tend to correct these, thinking that the patient may “improve” or that the patient “needs to know what is right”. This often does not work, because the patient is already trying very hard. Besides, even if we correct the patient, the patient will forget what we told them. Do not correct any mistakes, such as when
    • The patient may use a grammatically incorrect sentence.
    • The patient may say something wrong about the past or call you by a different name, or use a wrong word for an object.
    • The patient may a mistake in a past memory.
    • If the patient uses a wrong word for an object, you can mention the right word gently, but not as a correction. Do not tell the patient they made a mistake. Do not insist that the patient uses the correct word.

If patients keep asking the same question, or seem agitated while demanding something, consider various ways to handle such behaviour (see: Handling Behavior Challenges)

All the above are extensions of common sense, obvious if we pause to consider things from the point of view of the patient. However, as caregivers, we often forget the situation of the patient, because we are engrossed in achieving what we need to achieve.

Using more and more of non-verbal cues. As dementia progresses, caregivers will need to become more and more tuned to non-verbal cues from patients. The patient may say her eye is hurting, but when asked to point out, may point to a tooth. Caregivers need to look out for ways to confirm their understanding, such as seeing when the patient winces. By the time they reach late-stage dementia, patients can no longer speak, and caregivers will have to figure out what patients want or feel mainly by looking at how the patients move their bodies, when they squirm, wince, smile, look frustrated.

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Some examples of communication

These are illustrative only. Note that the main criteria of whether a communication is effective or not is whether the patient understands us well enough for the task at hand, and whether we understand what the patient wants. Tuning our way of communicating to adjust to what is working for the patient is key to good communication.

Example: Under normal situations, we may have said:

Today, Shanti called me and asked about you. You remember Shanti, no? She used to live next door to us in Vasant Vihar, and was always coming to visit us in the evenings and used to make that lovely payasam. Her elder son is here in Bangalore, and she is here to visit him, so she called me yesterday to say she’d like to drop in and meet us. I told her it is okay.

If we find patients unable to understand this, we can simplify it somewhat, breaking it up into simpler sentences, and leaving pauses for the patient to absorb what we are saying. For example:

Shanti called me today. Shanti is the thin woman who used to live near our house many years ago, in Delhi. She made delicious payasam. [pause while the patient recollects. Show photo if you have one]

Shanti and her son are now in town. Shanti will come to meet us today afternoon. [give more information only if patient shows interest]

Over time, this also may be difficult for the patient to understand, and we may need to simplify it even further.

Today, our friend Shanti phoned up. [show a picture if you have one]

[watch and see, if the patient seems interested. If not, stop the topic]

[if patient is interested, continue with another simple fact] She used to make very nice payasam.

[again, check for interest level, and continue or drop the topic] She is coming to meet you.

[If patient seems tense, reassure her]

I will be here with you when Shanti comes. It will be okay.

Example: Normally, we may have said:

You need to have your bath now, because after that you have to have breakfast and your medicine for your BP. Today’s breakfast is your favorite idli. You will like that, won’t you? So come for the bath. Why aren’t you getting up? The idlis will get cold.

We may need to simplify this to break it down into steps. Depending on how difficult the patient seems to find it, we may ultimately break it down to a very simple set of steps, as:

It is time for your bath.[let the patient see the nightgown on the bed and the towel in your hand, the usual clues that remind her of the bath]

[later, after the bath]

Let us go for breakfast. [let the patient also smell the idlis]

[After breakfast]

Here are your medicines.

Example:

Instead of saying: Are you hungry? Should I get you your tea now, or would you like coffee? I can add ginger to the tea the way you like it. It will be good for you; this weather is horrible and ginger tea is so tasty and good. Should I get you ginger tea, or plain tea?

Say:

Would you like tea or coffee?

Or if the patient always has tea, avoid the unnecessary question and say:

Would you like tea now?

or even:

Here is your tea.

Instead of a rhetoric question like:

It is so hot, isn’t it?

Just say:

It is very hot.

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Enjoying communication with the patient

It may seem a strange thought to an overwhelmed caregiver, but sitting with a patient and talking can be a relaxing activity for both the patient and the caregiver.

Patients often spend a large part of their days struggling to understand the world around them and doing what is necessary. They are aware of their problems and know that they are not always able to use the right word or remember something correctly. This is an intense pressure on them.

We can sometimes sit with the patients and just let ourselves relax. If we forget our helplessness and anxiety about the way the patients struggle, they will also feel less pressure and relax. They may start recounting stray memories. Most probably, what they say will be full of mistakes. They will use wrong words and remember the names and incidents wrongly. If we listen without wanting to correct them, and accept that this is what they want to talk about, we will find the experience relaxing.

Anecdote: A patient once began narrating a long story about how her brother had run away from home and she listed a number of cities that he had visited and things that he had done. None of what she said was correct. By just sitting with her and letting her talk, the caregiver son was able to enter the world that the patient lived in. The son experienced the strange the world that was real to his mother, and just stayed with her for company. The mother, feeling happy that she had been heard, was more relaxed the whole day. The next day, the mother narrated an entirely different past, and the son let her talk, determined to enjoy her chatter the way he would have done when he was younger and she narrated stories. Instead of this becoming a struggle to force her to face “facts”, the session became the son’s way to begin understanding how strange his mother’s memories had become. Next time he was trying to do something with her, he found himself calmer, because he now understood his mother’s situation much better.

Anecdote: A daughter, very tired because of caregiving for her mother, one day sat near her mother and started talking about how tired and sad she was. Her mother reached out her hand and squeezed the daughter’s hand in sympathy. The shocked daughter realized that her mother, despite her dementia, retained her ability to feel love and sympathy, and had sensed the daughter’s sorrow and responded to it. The daughter realized that every time she got irritated and upset, the mother must be sensing that, too. After this incident, the daughter started spending time with her mother just holding her hand, or talking of simple things, not asking questions or expecting answers, and found that she was able to connect back to the affectionate mother for at least some time every day. She would often think of these moments at times when the caregiving became very frustrating and tiring, and over time, caregiving did not seem as tiring as it did earlier.

Dementia patients, despite their problems, often retain their ability to feel emotions and to sense emotions of others. We can try to use this to bond with them and feel fulfilled to the extent possible. We can enjoy fun activities along with the patient. [See: Improving the patient’s quality of life]

(Please note that even persons with FTD, who seem apathetic and disconnected, may be caring at some level though it is not obvious: read this personal story of a patient who says, “Even when I don’t care, I do care”).

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See also….

Caregiver resources in India and Other dementia/ caregiving resources: Several of these sites/ resources contain tools and tips for communication. Many sites have downloadable files with information. The following are particularly helpful:

Communication is discussed in all dementia caregiving books (you can see a list of suggested books here: Books and DVDs) One book that discusses communication and interactions in a specially interesting and somewhat different way is this book below:.

steps book
When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver (Susan M McCurry): This book focuses on creating a positive experience for the caregiver and the patient and suggests a mindset and tools to achieve it. This book discusses changes a caregiver can make to be more supportive and also enjoy more activities with the patient, to be more resilient while coping with the difficulties of dementia care. The approach suggests nurturing behaviour and being open to creativity and enjoyment. Read about the paperback version/ read reviews/ look inside the book at Amazon.com, or, if you are in India, you can view it at Amazon.in or Flipkart or any other vendor.

This book is also available as a Kindle eBook, which means you can buy it online and start reading it within minutes on your laptop/ tablet/ Kindle! Read a sample/ read reviews/ buy it from: Amazon.com or Amazon.in.

You can also see our full books/ DVD suggestions at: Books and DVDs or surf Amazon.com or Amazon.in for your specific needs.

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[This page was last updated in April 2014]

City/ region wise resources

City/ region-wise resources for dementia care: Bangalore, Mysore,   Chennai, Coimbatore,   Guwahati,   Hyderabad,   Kolkata,   Manipur,   Pune,   Delhi,   Goa,   Kerala cities,   Mumbai,   Others Also: Resources across India and Informational websites.

Extensive blog on dementia care

Swapna writes blog Swapna Kishore writes about her personal experiences of caring for her mother, and also shares observations as a resource person for dementia care in her blog here.