How to talk to someone with dementia: A guide for caregivers
Ask elbi: What should I know about communicating with my loved one who's living with dementia?
When caring for a person with Alzheimer’s or other forms of dementia, it's normal to have questions about how to best communicate. Remember that your body language, mood and tone of voice all play a role in how your communication is received. Here are expert tips on how to understand communication changes and best practices for how to communicate with someone with dementia.
1. How to talk to someone with dementia: A guide for caregivers
2. Dementia and language: What to Know
3. How to communicate with a person living with dementia
4. Non-verbal, facial, and body language communication with a person with dementia
5. ‘Bad days’ and memory loss when living with dementia
6. Talking to a person with dementia—stages of communication
How to talk to someone with dementia: A guide for caregivers
Talking effectively with a person with dementia requires understanding, patience, and potentially adapting your previous ways of communicating, which can be challenging for caregivers. An important first step is to learn how dementia might be affecting your loved one’s ability to communicate and then you can begin to alter your approach.
Dementia impacts both expressive and receptive language abilities, which means individuals with dementia may have difficulty expressing themselves verbally and understanding what others say.
Caregivers can use a variety of tools, including their tone of voice, body language, facial expression and even shifting their emotional state in order to better hear and listen to people with dementia.
Here’s how caregivers can improve communication with family members living with dementia.
Dementia and language: What to know
Alzheimer's disease and other forms of dementia typically affect language in two ways: expressive aphasia (difficulty speaking to express thoughts) and receptive aphasia (difficulty understanding words spoken to them). Both types can progress at different rates, making communication a challenge. Generally, with Alzheimer’s disease, the first loss noticed is the use of pronouns (he/she/him/her, they/them, etc.), then nouns (words for persons, places, things), then verbs and adverbs (action and descriptive words), and eventually, the person may only use single short phrases and one-word responses. There’s a table below for a more detailed description of the communication challenges based on stages of dementia.
It’s important to keep in mind that people living with even earlier stages of dementia may no longer be able to discern the more subtle patterns of language that you are used to using with them. They may no longer be able to tell when you are kidding or teasing them and may be much more literal in their interpretations of your words than before. Simplify your language, use fewer words, and pause more to clarify whether they have understood you. Give the person time to absorb, process, and formulate their own response to what you are saying. This is a demanding task, so you’ll want to be empathetic with yourself and your loved one as you communicate.
How to communicate with a person living with dementia
It’s always good to remember to be patient and communicate in a quiet place without distractions. Also, make sure you are giving them time to express themselves in the best way they can; don’t rush in to guess what they are trying to say until you have really listened and observed. Look at their body language and nonverbal cues (how are they holding their body posture? How are they gesturing with their hands? What do their eyes tell you?). Sometimes, when you really listen, and because you know them well, you may actually be able to understand their “language”, the sounds, the tone, and or the meaning, even if the words don’t make any sense.
To effectively communicate with individuals with dementia, it’s crucial to simplify your language and be clear. Avoid using complex sentences or abstract concepts. Instead, use short, direct sentences and give the person time to respond. It’s important to make eye contact and ensure you have their full attention before speaking. Be patient, as it may take longer for them to process information and formulate a response.
When communicating with someone with more advanced dementia, listen to the words they are using. It may seem like random "word salad" at first, but if you listen closely enough, some of the words may give hints about the essence of what they are trying to communicate. Use your knowledge of their history, background, preferences, and priorities to make more sense of their jumbled speech. Even if it seems like they are having difficulty finding the right words, paying attention to what they are saying may provide clues.
Non-verbal, facial, and body language communication with a person with dementia
Non-verbal communication is essential when interacting with a person with dementia. Pay attention to their body language, facial expressions, and tone of voice. These non-verbal cues can provide insight into their emotional state and intentions. Use positive facial expressions, gentle touch, and maintain eye contact to show empathy and understanding. Being mindful of your own body language can also help reinforce verbal communication and make the interaction more meaningful.
If they are smiling or seem happy when speaking to you, try to respond with general affirmative positive statements such as, “That’s great,” or “You don’t say? – Thank you for sharing that with me.” If they appear upset or in distress, you might respond with, “Oh I’m sorry. You seem upset. Let’s see what I can do.” These approaches let them know you are connecting with them emotionally.
‘Bad Days’ and memory loss
People with dementia experience 'good days' and 'bad days.' On bad days, memory loss and cognitive impairment can be more pronounced, making communication particularly challenging. During these times, it's essential to be even more patient and understanding. Avoid correcting or arguing with the person, as this can increase their frustration. Instead, acknowledge their feelings and provide reassurance. For example, if they appear upset, you might say, “Oh I’m sorry. You seem upset. Let’s see what I can do.” Remember, their difficulty finding the right word or staying on topic is a symptom of their condition, not a reflection of their character.
Talking to a person with dementia—stages of communication
Communication needs change as dementia progresses through its stages:
Stages of dementia and language difficulties
- Early dementia--Some difficulty concentrating and following conversation; difficulty finding the right words when speaking or writing; losing train of thought when speaking; repeating oneself. Usually, the person with dementia is aware of these problems and may try to hide or overcompensate for them.
- Moderate or mid-stage dementia--Difficulty following along with group and one-on-one conversations; losing train of thought when speaking; increased difficulty finding the right words when speaking or writing; loss of vocabulary, substituting words that sound the same or inventing new words; difficulty following directions; poor recall when telling others about recent events; increased use of gestures to communicate.
- Severe or late-stage dementia--Inability to follow along with anything other than simple conversations and instructions; increased loss of vocabulary, including personal information and loved ones' names; tendency to talk about nothing, rambling, or tangential speech (streaming and nonsensical).
- End-stage dementia--Inability to speak language or otherwise respond with words at all; may babble or use sounds to communicate, difficulty or inability to understand when spoken to. May still respond to song and communication when paired with music.
By adapting your communication approach, you can maintain a meaningful connection with a person with dementia, despite the challenges. Using these strategies can help reduce frustration and improve the quality of interactions for both caregivers and individuals with dementia.
Dealing with anger in a parent with dementia: What caregivers need to know
Ask elbi: My parent was not angry before, but as the dementia progresses, the aggression is worsening. How can I manage this?
It can be overwhelming to deal with anger in a parent or loved one with dementia, especially when the behavior is out of place from the person you once knew. Here, experts share insight on what causes anger in people living with dementia, and how caregivers can best care for themselves and people with dementia under their care.
- What caregivers need to know
- Why anger occurs in people living with Alzheimer's and other forms of dementias
- How to respond when a person living with dementia is angry
- Physical safety for aggression
- Feeling overwhelmed as a caregiver
- Well-being for caregivers of people exhibiting anger and aggression
What caregivers need to know
Coping with the changes brought on by dementia can be a very frustrating experience for the person living with dementia and those around them.
It may seem to caregivers as if the person living with dementia has a new tendency towards anger that wasn’t a part of their personality before dementia. Understanding a little bit about how dementia affects the brain can help to explain some of this new level of anger.
Caregivers may notice that the person they are caring for displays a new tendency towards anger, which can be overwhelming.
Why anger occurs in people living with Alzheimer's and other forms of dementias
The frontal lobe of the brain (the area behind the forehead), is the center of the brain that is responsible in part for how we behave. In a brain without dementia, the frontal lobe acts as a regulator to our emotional responses; it reminds us that responding in a certain way may be inappropriate. Damage to the frontal lobe of the brain, particularly in Alzheimer's disease, can lead to increased anger or aggression, as this area is responsible for regulating behavior. When the frontal lobe is damaged by dementia, the brain no longer reminds the person to regulate their anger and they may have outbursts that are out of character for them.
Environmental factors like loud noises, physical clutter, and personal space invasion can also contribute to anger or aggression. Additionally, the frustration stemming from memory loss and mixed-up memories can exacerbate these behaviors.
Empathetically understanding these triggers is crucial for caregivers to respond appropriately and prevent escalation.
How to respond when a person living with dementia is angry
When a person with dementia becomes angry, responding with empathy and understanding is vital. Imagine the confusion and frustration they might feel due to their cognitive impairments. Use calm and soothing verbal communication, maintain eye contact, and ensure you are not invading their personal space. Avoid physical contact if it seems to aggravate them. Instead, acknowledge their feelings by saying things like, "I can see you're upset. Let's take a moment to calm down." Give them space and time to process their emotions without forcing them to do anything that might lead to anger.
The best way to avoid your loved one getting overly angry at you in your interactions is to learn to prevent the response by being mindful of how much frustration you may be causing, even without meaning to. Many of the things you need to accomplish as a caregiver for a person living with dementia involve placing demands on them. The trick is to meter out the pressure you are placing on them and to recognize where their “stress threshold” may be. When these incidents first occur, it’s good to take note and think about what happened just before. Ask yourself, “Was I pushing them to do something that they can’t remember how to do?” or “Was I rushing them through the task?” or “Have I asked them to do too many things at once?”. Typically, the answer lies somewhere in there.
Physical safety for aggression
Ensuring physical safety when dealing with aggressive behavior in people with dementia is paramount. Caregivers may clear any physical clutter that might cause accidents and create a calm environment free from loud noises and other triggers. If the person becomes physically violent, maintain a safe distance to avoid injury. It's essential to avoid physical restraint unless absolutely necessary, as it can lead to further aggression and is disempowering to people with dementia. Instead, use non-threatening body language and a calm tone of voice to de-escalate the situation.
Feeling overwhelmed as a caregiver
Caring for someone with dementia who exhibits anger and aggression can make caregivers feel overwhelmed. It's crucial to recognize your own emotional limits and seek support when needed. The intense stress of managing aggressive behavior can lead to caregiver burnout. Therefore, it’s important to take regular breaks, seek support from friends, family, or support groups, and consider professional help if necessary. Remember, it's okay to feel frustrated and seek help; caring for yourself is as important as caring for the person with dementia.
As a caregiver, you will experience your own set of emotions in these situations that shouldn’t be ignored. Many will give you the advice, “just don’t take it personally” which is much easier said than done. For caregivers who are caring for an angry parent, these situations might open old wounds and emotional scars that we don’t want to revisit. An angry parent can trigger any child, no matter how old, into feelings of shame and guilt and feelings of failure which make it hard to have confidence as a caregiver. For spousal caregivers the reaction may trigger very different emotions. Caregivers who are taking care of a spouse may expect their partner to react and respond the same way they always have in the relationship, and this can cause problems.
It is important to not let the anger escalate to resistance as you provide care and if the person you are caring for is consistently having outbursts of anger when you are trying to help, it is time for a new approach.
elbi can help you as you work through each challenging care situation to develop strategies to prevent the escalation of frustration for you both.
Well-being for caregivers of people exhibiting anger and aggression
The wellbeing of caregivers is vital when managing anger and aggression in people with dementia. Practicing self-care by setting boundaries, taking time for personal activities, and seeking emotional support is essential. Managing stress through relaxation techniques and staying informed about dementia can also improve your ability to care for the person with dementia. Addressing your own needs will better equip you to handle challenging behaviors and ensure both you and the person you are caring for maintain a better quality of life.
By understanding why anger occurs, learning how to respond effectively, and taking care of your own wellbeing, you can create a safer and more supportive environment for both you and the person with dementia for whom you care.