Communicating with a person with memory loss can be difficult, but the right strategies can bridge the gap and foster a more fulfilling relationship between you and your patient or loved one.
Those struggling to communicate with a person who has memory loss are not alone. As many as four million people in the US may have Alzheimer's, and, as our population ages, that number is expected to increase. Anyone who is a senior caregiver is likely to be affected and will need to understand how to cope with what is happening.
Memory loss associated with aging, dementia, and Alzheimer's typically doesn’t happen overnight. Slowly, little-by-little, it sneaks up, until one day, family members realize that they can no longer communicate in the same way with the person they've known for years. They suddenly can't rely on their words and their sentences don’t match the situation.
Because we cannot see the disease—the way we see a broken arm—it’s even more confusing when caregivers see how their patient and/or loved one will have good and bad days. The days when they’re alert and clear-headed make a caregiver hopeful. Then the bad days come, and family members and caregivers feel the pain of losing their patient and/or loved one all over again. This slow and normal progression of the disease makes communication a major challenge for caregivers.
There are strategies that caregivers can use to be more successful at communicating with someone who has dementia, Alzheimer's, or memory loss. In the following video, nationally renowned presenter Diane Waugh shares dementia caregiver tips and strategies, drawing from her own experiences of being a caregiver for her mother:
This blog will share more information and advice to improve communication, including:
- How dementia and Alzheimer's affect the brain and memory
- Communication frustrations and difficulties faced by caregivers
- What not to do when communicating with a person who has dementia
- What to do to improve communication
- Ways to continue to spend time together
How the disease affects the brain
Physiologically, dementia and/or Alzheimer’s affects various parts of the brain, specifically, it affects the brain in such a way that people have a difficult time learning new information. This is why, for a long time into the disease, patients and/or loved ones can remember things that happened a long time ago. They can remember wedding dates, the war they fought in, where they went to high school—but they can't remember the visit that they had with their daughter yesterday. This is because the disease affects certain parts of the brain—the temporal lobes—which are responsible for helping us learn new things.
The reason they’re able to hold onto the memories that happened a long time ago is that those memories are represented throughout the brain. Long-term memories don't require just one or two areas of the brain—they're probably represented in multiple systems—so the disease has to be quite advanced before patients and/or loved ones start losing those memories.
In the brain of someone with dementia and/or Alzheimer's, there are actual holes in the brain that form. In an image of an Alzheimer's brain, one can see where many of the brain cells have died—and it affects every area of the brain.
The brain essentially has two jobs. The first is to make the best sense of what's going on. Our brain wants to stay in control in every situation, and patients and/or loved ones with memory loss have trouble with that part: they want to be able to have some control, but they sense they’re losing some of that. The second job of the brain is to keep us safe—emotionally safe, as in, “I don't want to fail,” or, “I don't want to say things and have someone say, ‘that's not right’.” Like any human being, we want to feel accepted and not ostracized or afraid to speak up.
Types of memories
There are three kinds of memories. The first is functional memory, essentially: reasoning and comprehension. This is conscious thought. When caregivers first see decline, it can be simple things such as: “How do I get from here to the grocery store?”, or, “How do I make the microwave work?”, or, “How do I balance the checkbook?” One of the places that family members may notice this decline in their loved ones is at restaurants: they will likely have problems trying to decide. They may say things like, “I’ll have that too” (indicative of a person unable to make a decision). They might say to themselves: “I don't know what to do, so I’ll wait until one of the others at the table give me a sign that that’s what I’m supposed to do next.”
The second type of memory is procedural memory, or automatic memory. With these memories, there's really no conscious control. This includes activities such as eating, driving or riding a bike—anything we've learned to do that is automatic.
The third kind of memory is emotional. This includes unconscious, gut reactions and are cued by something else that's going on. This is where family members can help caregivers with their loved ones, because only family members know what types of emotions their loved ones have attached to certain things and/or activities (more about this under Communication Do’s).
People who have dementia and/or Alzheimer's can’t control what’s happening to them. They’re not able to change their behavior. As caregivers, we have control over our thoughts and behavior, so we are the ones who must change, learning new ways to relate to the person with the disease.
Common frustrations & difficulties
Communicating with a person with memory loss can be difficult, but the right strategies can bridge the gap and foster a more fulfilling relationship between the patient and/or loved one. For caregivers—whether you're a professional or a family member caring for a loved one—it’s important to adopt a positive attitude to effectively communicate.
Engaging with patients and/or loved ones in an encouraging and patient manner will help minimize feelings of frustration. If you're struggling to connect with a patient and/or loved one with memory loss, it’s important to know a few common frustrations and “traps” and how you can avoid them.
First, remind yourself that people with dementia and/or Alzheimer’s only have the present moment, so we can let them know that we enjoy their company. When caring for someone who has the disease, the most important thing to take care of is that person’s feelings. A person with memory loss can’t remember the minute before, they don’t know what’s going to happen in the next minute. They can’t do that kind of thinking, so how they feel right now is the most important thing to pay attention to.
When you keep in mind that their feelings are the most important, arguments or resistance can be avoided. For example, maybe today you only help your patient and/or loved one with a half a bath or half a shower, and do the other half tomorrow, because right now, you can see they're feeling tired and they’ve had enough. Keeping their feelings as the guiding light will help interactions go smoothly. Just think, “I want them to feel safe and/or respected,” or, “I want them to have a good time,” and it can make choices a lot easier.
A communication problem that can frustrate family members occurs when it seems as if the person with dementia and/or Alzheimer’s is lying. A typical example is a family member calls their dad and asks, “Did you take your medicine today”? Dad replies, “Yes.” But when the family member visits later, the medication is still in the package, and it's obvious that Dad hasn't taken his medication for days.
An important point to remember about dementia and/or Alzheimer's is that—even into the late stages of the disease—people will still respond as they always have to social pleasantries, such as, “How are you?”, “How’s it going?”, and, “Did you take your medicine today?” When it comes to something as simple as, “I called mom and reminded her to take her medicine and she told me she did,” it can feel, on receiving end, that the patient and/or loved one is lying. But what's really happening is that the patient and/or loved one answered the question as they would any other. When you ask an adult, “Are you taking care of yourself?”, of course they will answer, “Yes, I’m a grown-up, I know how to take my medicine.”
A person with dementia and/or Alzheimer's cannot hear the question—they're not being uncooperative or deceptive. They honestly cannot hang onto the question long enough to even know what it was (“Did you take your medicine?”) and take that into account: “Today, this morning, did I really go to the cupboard, take out my medicine, and then have my breakfast, as I always do? Or today did I go outside and pull weeds and did I skip breakfast?” The patient and/or loved one cannot take into account today, the current circumstance and the current situation—they're simply unable to.
Communication problems can also occur around visits. A son may visit faithfully every night, but each time he arrives, his mother might say, “You never come to see me.” The son will feel that mom is purposely trying to give him a bad time. The person with dementia and/or Alzheimer's doesn’t lay in wait, trying to hurt everyone’s feelings. It’s actually complicated thinking that the person with the disease can’t do. It's important not to take what someone with memory loss says personally—he/she can't always express your feelings accurately, and they aren’t even aware that he/she has hurt your feelings. Keep in mind that the person doesn’t remember that you visited yesterday. Rather than getting angry or frustrated, use the time together to do something enjoyable.
In addition, many older adults struggling with memory loss prefer familiar settings. In order to have the most productive interactions, arrange for visits to take place in a comfortable environment. Also, always begin visits by introducing yourself and defining your relationship. Quiet is key: silence any distractions, such as radios or the television. However, sometimes a change of scenery is in order. If you notice the patient and/or loved one is becoming agitated, suggest taking a walk or orchestrate a subject change. Refrain from negating the person's emotions if he/she gets upset. Instead, offer acknowledgment and support.
Should you tell the person they have Alzheimer's?
Families may frequently ask, “Should I tell the person that he/she has Alzheimer's?” Keep in mind that the patient and/or loved one can't reason. They don't have enough memory to remember the question, then think it through to form a conclusion. Caregivers and/or family members may often think if they tell the person with memory loss that he/she has Alzheimer's, then he/she will understand and cooperate. You can’t get cooperation by explaining that he/she has the disease and expect him/her to remember and use that information.
Communication Don’ts / Traps
Avoid the following traps that caregivers and/or family members often fall into when trying to communicate with their patients and/or loved ones.
Don’t ask a person with short-term memory loss a short-term memory question
A patient and/or loved one can construe even the simplest of conversation starters (“How are you today?”) as a real question, but they honestly don’t know the answer to it. This can be embarrassing and can send them back into a fog—they try their best to give an answer that makes sense to them and often produce immediate physical concerns: “I'm having a lot of pain,” for example. A caregiver and/or family member might ask, “What did you have for breakfast?” and the person with memory loss doesn't remember at all. They might say earnestly, “I haven't had anything to eat for weeks,” (because they honesty can’t remember the last time they ate). So these are questions to avoid because it causes fear for the person, that they have failed. But there are things you can talk about (which is covered under Communication Do’s.)
Don’t correct them
A patient and/or loved one with memory loss often shows progression in terms of their problems with language. The first sign is finding the right words for things, or word accuracy. The patient and/or loved one may be telling you something about a letter they received, but they can't get the word “envelope” out, or they may point to a lamp and they can't quite get the word “lamp” out. Language starts to become disfluent, and it’s difficult for the person to find the specific, right word that they want to express. Over time, their language becomes increasingly vague—it is more difficult for them to say something specific. For example, if you ask them what they do on a day-to-day basis, often they'll say, “Oh, you know, I kind of do the same old thing. I kind of sit around a bit I do house things,” but they can't offer specific details. This is because their store of language has become affected by the disease. In short, it is very difficult for them to express themselves in any great detail.
Another way to spot decline in language skills is substituting words. For example, they ask you to pass the salt when they meant to say sugar. Stop yourself from nitpicking them on accuracy: “You meant to say the sugar, so here’s the sugar.” Skip that whole conversation. You won’t teach someone how to talk, and, it can be construed as rude to ask that person to try a little harder, because they’re already functioning with half the brain cells. If they point at the sugar and ask for salt, just hand it over as if they said sugar. That’s the most respectful and kind.
People with dementia and/or Alzheimer's may ask repetitive questions. Usually the question expresses a concern they have. Anyone with a concern that isn't being addressed will become louder and more persistent. He/she may repeat the same question, because he/she cannot remember that he/she has just asked it, and their concern hasn’t gone away. It is the caregiver’s and/or family member's responsibility to help soothe the worry. The goal is not to make the question go away—it is to make the worry go away for a little while, and then the question may come back. It's perfectly okay to give the same answer again if it helps to calm the patient and/or loved one. Certain situations throughout the day will trigger repetitive questions—that's to be expected.
Don’t counter aggressive behavior
People with dementia and/or Alzheimer's may become aggressive in response to the environment. Bath time is often when the aggressive behavior is displayed. The caregiver’s and/or family member's approach may also play a part. Rushing, speaking harshly, or forcing a person may result in an aggressive response. When someone with memory loss displays aggressive behavior, it is a form of communication. It may be the only way a person has left to say, “Pay attention to me! I don't want to take a bath!” When someone is communicating vigorously, it is the caregiver’s and/or family member's job to respect that communication. Hitting, kicking, or biting are ways of saying, “stop.” The appropriate response is to stop. That doesn’t mean not to try again in five minutes or a half an hour.
Don’t expect them to conform to present-time reality
As strange as that may sound, learn how to enter into the patient’s/loved one's world and not expect them to conform to our present day. As Diane Waugh, BSN, RN, CDP, says in the video above: “When I had to deal with memory loss with my own mother, I found the hardest thing for me to do was to not try to drag her into my reality, but to go live where she was living, in her understanding.”
Caregivers and/or family members should remember: give up expectations of the patient and/or loved one (who they were before in their life, for example, they always did all the bills, or, they always did XYZ as the go-to person). Giving up expectations can make room for what the patient and/or loved one's strengths are (covered under Communication Do’s).
Don’t say “no,” “don’t,” or “can’t”
One of the biggest mistakes in dealing with patients and/or loved ones with memory loss is being negative and telling them that they can’t do something. Words like “no," “don't,” or “can't” create resistance. This comes up regularly with family members when the patient and/or loved one might be still driving, and the caregiver and/or family member has made the decision to stop them from driving. One should never say, “You can't drive anymore.” They can still technically drive (they have the procedural part of the brain intact), and they can get very combative when told “no.” A way to counter this is to say, “I know you still can drive, that's not even a question, but you know what happened the other day? I was out on the highway and this car cut me off, and I had to make a split-second decision it was really scary…” It’s likely they will say, “You know what? I'm having a little trouble with those decisions too.” The issue isn't the mechanical driving, it has more to do with comprehension, and many times this answer works much better than, “You can't drive anymore,” which can be construed as confrontational.
You may find a patient and/or loved one up too early or confused about time. Instead of using messages such as, “You’re up too early, you need to go to bed,” try leading with statements such as, “You know, I'm getting sleepy. I’d like a little snack before I go to bed,” and then gesture for the patient and/or loved one to sit with you.
Don’t talk down to them
Caregivers and/or family members should never talk down to the individual with dementia and/or Alzheimer's, and this especially includes baby talk, which doesn't work neurologically (and it's insulting). The fact that the patient and/or loved one is having problems with language does not mean that talking to them like a four-year-old is going to help. The communication style should still be to a respected, older adult.
Don’t say, “Do you remember?”
This, again, triggers the patient’s and/or loved one’s fear of failing. Often a great way to phrase things instead is saying, “You know, I was thinking that you said you liked apple pie and won an eating contest…tell me about that.”
Don’t say goodbye
It’s too final. Again, the patient and/or loved one is actually trying to make logical sense in their brain of why you are leaving, and they may get distraught and place the caregiver and/or family member in an uncomfortable situation. Instead, give a logical reason why you’re stopping the conversation, for example, “I've got to go to the store now and get my groceries.”
Don’t answer questions of patient/loved ones regarding bad memories
People with Alzheimer's often ask difficult questions, mostly about people who have passed away years ago. It’s not helpful to remind the patient and/or loved one that a person they’re asking about has passed away. Rather than avoid the subject, you can say, “He/she’s not here right now, but tell me about him/her.” Often the person with memory loss is looking for the sensation and security that they would have if their loved one was around.
Caregivers and/or family members should be helping patients and/or loved ones comfortable, safe, and protected. Elderly women, for example, who have had children commonly ask, “Where are my babies?” This question will often come up at meal time, when feeding the children was an important part of motherhood. Find a way to soothe their concern. You could say, “The babies are sleeping.”
As stated earlier, trying to bring a person with Alzheimer's the present-day reality is not effective. Caregivers and/or family members should adapt to the patient and/or loved one’s reality. It’s ok to go anywhere in any time period in order to communicate.
Communication Do’s
A caregiver’s job is to help the patient and/or loved one feel useful and successful every day. What caregivers and/or family members can do is to let the person know that they’re not alone, and that there's somebody that knows them—someone who has their back.
Here are some positive ways you can support patients and/or loved ones with verbal and non-verbal communication.
Play to their strengths
Sometimes memory loss is so devastating that we all forget that there is a person still in there somewhere. Family members can be distraught by what's missing and forget that there's still a lot there within the person, and that they have strengths.
They still have long-term memory, so it’s up to the caregiver and/or family member to “find them.” It's interesting that, medically, doctors do tests on other conditions (pancreas, lungs, heart) but when it comes to memory loss, it's often looked at like a switch: “Either they got it, or they don't.” Just like everything else, there's a progression of memory loss, and it’s up to the caregiver and/or family member to find out where the patient and/or loved one is, and bolster that.
Strength #1: Long-term memory & stories
Everyone has a short-term memory “drawer” and long-term memory “drawer”, and we put information in each. People with dementia and/or Alzheimer’s have a short-term memory drawer that has no bottom. He/she puts things in, and then they get lost. The long-term memory drawer, however, has a solid bottom. Lots of stories that are retrievable await (what he/she had for lunch in grammar school, for example). Encourage your patients and/or loved ones to tell you stories. You can even use photos to encourage stories. Photos are wonderful long-term memory reminders.
Strength #2: Humor & music
Humor is a big strength. As caregivers and/or family members you can ask, “What does he/she think is funny?” Some patients and/or loved ones like jokes, and there is always music. Asking family members what their loved ones favorite songs are, and then bringing up those songs tells the patient and/or loved one, “you know me.”
Strength #3: Spirituality
If the patient and/or loved one has a spiritual base, that is hardwired. A great example of this has been used to mitigate falls: if they know the adage of not allowing a Bible to fall on the floor, for example, you can put a Bible on their lap. That tells them, “I can work with you, I know you.” One can help patients and/or loved ones by playing to old spiritual memories: songs, Bible verses, poems that have a spiritual meaning. It can be very comforting to them.
Use the senses
Communicate with the loved one and/or patient by using the senses as conversation starters. What do they like to see? (Nature? Movies? Pets?) What do they like to smell? (Cake? Popcorn?) What do they like to taste, feel, or hear? Family members can help caregivers better connect and interact—offering just the simplest information on the patient and/or loved one, for example, “Oh, I know she loves the feel of cashmere,” or, “He loves to listen to birds.” These sensory preferences can also be used to help choose activities for people with dementia.
Non-verbal communication
When words fail, body language can speak volumes. Touch is powerful, and many older adults are lacking in this valuable form of interaction. Holding hands, hugging, or even a simple pat on the back not only gives you a way to connect with your aging loved one, but can also help keep patients and/or loved ones engaged and focused. Eye contact is also critically important.
It's not just body language that matters, however. Although the person with memory loss may be unable to express his/her feelings in words, keeping an eye on their body language can reveal feelings of anger, sadness, distress, or discomfort. If these occur, redirect the conversation to something more pleasant.
We all have different ways of communicating what we need, and people who have dementia and/or Alzheimer's often don’t do well with verbal explanation. For example: “It’s time to take your bath, I'm willing to help you, let's go.” It's short-and-sweet, but the words fly right through. No matter what chore you’re wanting to address—the way to communicate it is often by not talking about it at all. Using gestures and eye contact can make a good-feeling connection to communicate what you need, without saying why or where.
Also, body posture is important. When we’re saying something to someone that we really care about, we tend to lean forward, we soften our posture versus sitting back and crossing arms and being more distant. Even late into the disease, a patient and/or loved one can understand body posture. They may not understand specific words, but they understand the context that the communication takes place in.
For effective communication, use a variety of cues. For example, to get the person to have a chair, you might pull up a chair beside the chair and sit down as you're saying it, because that's a typical social cue: when one person sits down in a friendly situation, the other person usually sits down. It just takes a physical cue and touching, then use simple words and simple phrases.
Tone
When communicating with someone with memory loss—even someone who has very impaired language skills—some very important things still get through. Even to the very end, the person can understand tone of language. Something that is said with a loving tone is understood quite a bit differently than something that is said with a harsh tone. The person with memory loss can catch those sorts of social differences in terms of use of language.
Distraction: Singing & reading
For some people, a distraction can be a good way to get the chore done. It’s kind of a different communication style that helps in distressing situations. For example, if a patient and/or loved one likes singing, starting him/her singing could allow the caregiver and/or family member to ease into bathing time with a gesture.
Singing actually can help tremendously with memory loss patients and/or loved ones who can no longer talk, or have trouble finding words to form sentences, because they are usually still able to sing a song. Often, they can remember the lyrics of a song from beginning to end.
Many patients and/or loved ones can still read as well. Singing and reading can give the person great joy and hearing a loved one’s voice can very comforting for family members.
Use “I” messages
Using “I” messages along with an enjoyable distraction and gestures is more effective than “you” messages. For example, “I was thinking we could have a snack,” and gesture to the table and the food. Avoiding “you” messages makes exchanges more pleasant—there is no pressure on the patient and/or loved one to look for answers that are no longer retrievable.
Shorten your sentences
If the patient and/or loved one is having trouble understanding you, the message may be too complex. Use basic words and simple sentences and repeat—using the same verbiage—as necessary. Keep questions brief and answerable: "yes" or "no" questions work better than open-ended questions or those with many choices. If you’re giving a patient and/or loved one instructions, limit them to one at a time. Visual cues can add clarity if they are still struggling to understand.
Patience is an essential part of communicating with a patient and/or loved one with memory issues. Offer a prompt if he/she is struggling to find a particular word, but make sure you are open to listening—even if it takes longer for them to reply.
And remember: maintaining a pleasant and encouraging voice can help ease any frustrations the person may be experiencing.
Should you keep trying to communicate?
Family members may frequently ask, “How often should I visit?”, or, “Should I visit at all, because they don’t seem to be understanding what we’re saying, most of the time they don’t seem to recognize me, etc.” Caregivers can encourage family members to visit because it’s important to them. Also, the person with memory loss may catch some things on some days, and if family members can make the interaction a pleasant moment, it can be rewarding for both.
Communication amongst family becomes particularly difficult when the person with dementia and/or Alzheimer’s doesn't recognize family members anymore. In this situation, a spouse or children can think that it doesn’t do any good to go talk to the person—that anyone could talk to him/her because they don’t remember who they are. But there is a richness that happens because of family history together, something that can only come from people that have been family or friends for a long time.
The type of communication families can get out of visits can be pulled from the strength of the patient and/or loved one’s long-term memories. They can still talk about the past, and for family members, to hear those things are perhaps a worthwhile gift.
Even though the patient and/or loved one can no longer communicate the way they used to, there are still other ways to enjoy time together. There is beauty and simplicity in being in the present moment.
The Power of Memory
The brain works in funny ways. While someone with dementia and/or Alzheimer's may not be able to recall what he/she had for breakfast that morning, he/she may remember people, places, and stories from the distant past. Remember: ask the patient and/or loved one to share favorite stories from childhood—family members may even be surprised to learn something new.
Also keep in mind that even though the patient and/or loved one is losing his/her memory, he/she still has feelings and emotions. Humor offers a great way to connect, and everyone can reap the mood-boosting benefits.
Communicating with a patient and/or loved one with memory loss has its challenges, but these proven techniques can help caregivers—whether you are a professional or a family member—overcome the barriers in order to continue to connect.
