Difficulties in area of language are a common symptom in people with dementia. Those communication difficulties are a consequence of nerve cell failure, and a person with dementia should not be blamed for the symptoms that arise. People with dementia show lower results in understanding and verbal expression, repetition, reading and writing. Syntax and phonology remain relatively intact in early stages, but semantic abilities are impaired.
BEFORE WE PROCEED WITH THE INFORMATION, FIRST THE FOLLOWING:
Remember (because YOU can)
You can’t control memory loss, only your reaction to it.
How do you communicate effectively with dementia patients?
- Speak clearly and slowly, using short sentences. Make eye contact with the person when they’re talking or asking questions. Give them time to respond, because they may feel pressured if you try to speed up their answers. Encourage them to join in conversations with others, where possible.
- Resist the need to control or correct. Do NOT try to remind them to remember something. They just don’t. e.g., “Do you remember the time we went to the beach?” “Do you remember Julia from next door?” NO! They do not. This kind of conversation will cause confusion and hurt.
- Always remember the three R’s:
Reassure, Respond, and Refocus.
If they are not causing a problem with their dementia hallucinations or delusions, – LET IT BE.
Introduction
In this article we wish to provide general information about your family member and some of the communication difficulties they may experience because of having dementia. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.
Why communication might be difficult in dementia?
As the disease progresses changes may occur in the areas of the brain that are involved in controlling language and memory.
How could communication be affected?
The following may affect a person’s ability to communicate:
- Memory loss e.g., struggling to remember topics to discuss or events that have happened.
- Difficulties understanding language.
- Difficulties finding the words they want to say.
- Hearing/sight impairment (common in elderly population).
- Hallucinations (a figment of the imagination).
- Distractibility e.g., difficulties keeping on topic and being distracted by the environment.
Emotions people with dementia may feel because of a communication breakdown:
Confusion Frustration
Anger Distress
Insecurity Fear
It is also important to note that some people may experience a changed sense of the ‘passage of time’. For example, an old, buried memory may resurface and feel like it happened only yesterday, this means some painful memories may feel heightened.
Behaviours that may occur as a result:
- Withdrawal from social interaction/ conversations and reluctance to engage.
- Aggression towards others or self.
- Fear and disorientation.
- Some people may lack insight into their memory difficulties and this may place more challenges onto their conversation partner.
How YOU can help:
Before doing anything or reading further, implant this in your memory to recall when communicating with your loved one:
| Don’t say | Do say |
| What did you have for lunch today? | How was lunch today? |
| What time is it? | The day’s really going by, isn’t it. |
| Is that a new jersey? | What a nice jersey. I don’t remember it. |
| What would you like to do now? | Would you like to take a walk? |
| Who is that sitting in the corner? | That person looks nice let’s go and meet him. |
| Do you know who I am? | I am Mary. |
| You just told me that! | That’s interesting. I didn’t know that. |
| Do you want to watch survivor? | Lets’ see if there is anything interesting on TV. |
| I just explained that. | Let me show you. |
| I know how to do that. | I will have to try it. That is a good idea. |
| I am an adult, not a child. | You always look out for me I love you for it. |
| How many times have you walked up and down? | Looks like you are getting a lot of walking in. Can I join you? |
| Why are you asking that? | That is an interesting question. I hadn’t thought about it before. |
| You asked me that already! | I really don’t know, what do you think? |
What the person with dementia understands:
- 7% words
- 38% pitch/ tone of voice
- 55% body language
- Things to Check First
- Communication is often easier if the environment is calm, simple, safe, and quiet. For instance, if you are trying to talk to your loved one and the television is on, the dishwasher is running and grandchildren are running through the house, your loved one might be distracted or agitated by all of the activity and noise. Try keeping things more peaceful and simpler. At Resthill, we have specific places in the gardens where you can take your loved one for a quiet visit.
- Let the person know that they have your full attention. Stop any other activities and focus just on that interaction.
- Try not to have too many people visit your loved one at once. Small and younger children should be couched before the visit of what to expect and how to behave.
- Make sure the person’s glasses are clean, hearing aids are working and dentures are clean and fit comfortably.
- If they use alternative communication aids e.g., picture boards, ensure these are at hand.
- Managing Emotional Distress
- If the person with dementia is experiencing emotional distress it may be due to many things. One of the causes could be a communication breakdown or even old memories resurfacing. Therefore, it is important to acknowledge that the person’s thoughts will be just as real for them as our thoughts are to us.
- Keep a soothing tone of voice and offer comfort as appropriate.
- It is important to build up an awareness of an individual’s way of communicating e.g., when a person with dementia asks for a relative that has passed away, this might indicate loneliness, therefore it is important that we focus on what feelings this statement represents rather than the inaccurate content e.g., do not correct their mistakes. Do NOT tell them that the relative died, this will cause new grieve and pain with your loved one all over as they cannot remember that the person they refer to, has passed away.
- Using Listening Skills
- Make sure you are face-to-face.
- Accept non-verbal forms of communication (i.e., pointing).
- Be aware of signs that might suggest the person has not understood you – e.g., looks confused.
- If communication breaks down, reassure them that you value what they have to say and you do want to understand. Tough their hand or give a hug. This always reassures.
- Let them express their feelings even if they are negative; do not ignore the message they are giving.
- Allow longer for the person to respond and do not interrupt what they are saying, they may need longer to express themselves.
- Supporting Conversations
- Make sure that the order of your comments follows the actual time sequence e.g. “I went to the shop, and then I met Margaret”. Avoid saying “I met Margaret when I went to the shops”.
- Keep your message short and simple e.g. try and start with the main topic then add the details later.
- Use natural gestures to supplement what you are saying.
- Refer to objects or pictures that you have nearby to aid conversation. For instance, if you are talking about a story you read in the newspaper, show the person the part of the paper you are talking about. If you are talking about a family member, find a photograph of the person.
- Emphasise key words.
- Re-phrase information if the person indicates that they have not understood you.
- Simplify your questions as necessary to avoid frustration.
- As dementia progresses, the person may become less able to initiate conversation; you may have to start taking this initiative.
- Keep conversation to day-to-day subjects. Do not go into complicated subjects like politics, etc.
- Supporting Memory
- Use a diary/calendar to record events.
- Look at old photos of friends and family and talk about them.
- Keeping a consistent schedule or daily routine will help keep your relative more relaxed; routine can be calming and soothing.
- It can also be helpful to add memory cues around the home/bed space, such as pictures of key family members and friends with their phone numbers.
- Reducing clutter and reducing noise.
- Encourage them to repeat back to someone important information they need to remember.
- Show Respect
Most importantly, when communicating with someone who has dementia, try to include them, try not to patronise and do not talk about them as if they are not there. To enhance your interaction, ensure that you respect their feelings and help them maintain their own identity.
Changes in communication
Changes in the ability to communicate can vary and are based on the person and where they are in the disease process. Problems you can expect to see throughout the progression of the disease include:
- Difficulty finding the right words.
- Using the wrong word/s
- Using familiar words repeatedly
- Describing familiar objects rather than calling them by name
- Easily losing a train of thought
- Difficulty organizing words logically.
- Reverting to speaking a native language
- Speaking less often
- Relying on gestures more than speaking
- Telling other peoples’ stories as if they are their own.
- Just telling stories, e.g., we have a Resident who told her daughter that they went on a picnic with a bus and the bus broke down and they had to hitch hike home. Another Resident told us that her daughter was in a terrible car accident and that she needs to go there immediately. These are all hallucinations. Stories that happen in their brains only.
Change the Conversation
A person with dementia may repeatedly ask the same question because they cannot remember asking it. This can be annoying and exhausting for family members. If they are repeatedly asking the same question, it may be that they are worried about something else, if the family members can correctly guess and reassure them, they will stop asking questions.
Suggestions:
- Don’t keep on answering the question over and over if this seems to be getting you nowhere. This will only make you impatient, they will pick this up and get more anxious.
- Try to reassure them in their anxiety. Perhaps give them a hug or tell them how much you care for them.
- Try to distract them with a walk in the garden, show a beautiful flower, read a story from a book or play some music.
- Talk about the person’s favourite subjects.
Loss of Interest and Activity
For many families, as the disease progresses, one of the most distressing things is the sense that the person with dementia has withdrawn from their family and the world. They communicate less and less and seem to take little interest in what goes on around them. It is very important to recognise that the person with dementia cannot help this change. They are not being lazy or difficult. It is just part of the illness. However, as with other aspects of the illness, there are things that you can do that may make a difference:
Are they depressed?
- Many people with dementia get depressed. They may appear sad, anxious or tearful. They may talk in a despairing way. Often, they lose interest in things, and sometimes go off their food and drink.
- This is not surprising. When people with dementia are aware of their limitations, this can be very frustrating and upsetting. Also, they can misunderstand what is going on around them, and this will be bewildering and frightening.
- As many as half of all people with dementia may have some degree of depression
- Sometimes, when depression does not lift of its own accord, treatment with antidepressant medicines can help. These medicines are generally safe and easy to take. Your physician can advise.
More Examples of General Don’ts when dealing with a person Living with Dementia
Don’t reason
PWD: “What doctor’s appointment? There’s nothing wrong with me.”
Don’t: (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
Do: (short explanation) “It’s just a regular check-up” (accept blame) “I’m sorry if I forgot to tell you.”
Don’t argue
PWD: “I didn’t write this check for R500. Someone at the blank is forging my signature.”
Don’t: (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
Do: (respond to feelings) “That’s a scary thought” (reassure) “I’ll make sure they don’t do that” (distract) “Will you help me fold the towels?”
Don’t confront
PWD: “Nobody’s going to make decisions for me. You can go now … and don’t come back!”
Don’t: (confront) “I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO: (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.”
Don’t remind them that they have forgotten
PWD: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t: (remind) “Joe called yesterday and you talked to him for 15 minutes.”
Do: (reassure) “You really like talking to Joe, don’t you?” (distract) . “Let’s call him when we get back from our walk.”
Don’t question recent memory
PWD: “Hello, Mary. I see you’ve brought a friend with you.”
Don’t: (question memory) “Hi Mom. You remember Eric, don’t you? .. What did you do today?”
Do: (short explanation) “Hi Mom. You look wonderful! This is Eric. We work together.”
Do not take it personally
PWD: “Who are you? Where’s my husband?”
Don’t: (take it personally) “What do you mean-who’s your husband? I am!”
Do: (go with the flow, reassure) “He’ll be here for dinner” (distract) “How about some milk and cookies? … Would you like a biscuit or pap?”
Do repeat exactly
PWD: “I am going to the shop for the newspaper.”
Don’t: (repeat differently) “Please put your shoes on.” … “You’ll need to put your shoes on.”
Do: (repeat exactly) “Please put your shoes on.” … “Please put your shoes on.”
Do eliminate ‘but’: substitute ‘nevertheless’ or ‘however’
PWD: “I am not eating this. I hate chicken”
Don’t: (say ‘but’) “I know chicken’s not your favourite food, but it’s what we’re having for dinner.”
Do: (say ‘nevertheless’ or ‘however’) “I know chicken’s not your favourite food, (smile) nevertheless/however, I’d appreciate it if you’d eat a little bit.”
References:
Understanding Communication – bccampus.com
The Role of Communication in The Caregiver/Person Living with Dementia, Alzheimer’s Association www.alz.org
Tips for successful communication during all stages of Alzheimer’s disease www.alz.org
Communication Tips: Middle Stage Dementia, Alzheimer’s Association www.alz.org
Dementia, COVID-19, and the Holidays – University of Washington.
Tips for Talking with Someone Who is Dying, https://www.virtualhospice.ca
https://www.hey.nhs.uk/patient-leaflet/communication-difficulties-in-dementia/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6195406/