Struggling to Communicate With Someone Who Has Alzheimer’s? Try These Expert Tips
Understanding how to communicate with someone who has Alzheimer’s disease can be challenging. Even when we do our best to look after our loved one’s well-being, moments of miscommunication can arise that further complications. Misunderstandings happen; what matters most is how we navigate them.
When it comes to communicating with someone living with Alzheimer’s, these four experts offer helpful advice. Whether it’s improved listening or non-verbal techniques, we hope these tips improve your relationship with your loved one.
Dr. Natali Edmonds
What are your tips for learning to listen without judgment?
When the person is talking, do your best to actually listen to what they are saying. The judgements may creep into your mind. That’s okay. Gently push these thoughts to the side and refocus yourself on listening. In cases like this, I think it’s important to acknowledge we are human and all have judgements from time to time. When they happen to you, simply notice it and intentionally tell yourself to refocus. Connecting with the person with dementia is more important than believing or agreeing with everything they are saying. If it helps, approach conversations with an intention of simply being present and show active listening skills like eye contact and nodding. Let yourself focus on that intention rather than on needing to agree or understand everything the person is saying.
How might you recommend someone handle “false memories”?
I don’t recommend correcting “false memories.” If the person is recalling a false memory and it seems to be bringing a source of pleasure, join them in the conversation and listen to what they are saying. You might also get some clues as to what they would like to have happen more often. For example, if the person with dementia is telling you about a visitor that stopped by the house earlier today (even though you know no one was there), you can ask them what they talked about, what they enjoyed about the visit, and show interest in their response. Pay close attention to the things they seem to really enjoy and then try to incorporate more of that into their life. If the person is recalling a “false memory” that is upsetting to them, reassure and comfort them and when it seems natural, redirect them into another topic of conversation or activity. I like to call this the art of redirection, but the reassuring and comforting must come first.
How do you recommend a family member or loved one respond if they don’t recognize who you are?
I recommend introducing yourself by name and relationship. For example, “Hi mom, it’s your favorite daughter, Megan. I came by to say hello.” If the person with dementia doesn’t recognize you it’s likely because their memory of you is from a time so long ago that you looked differently than you do in the present. Please don’t take this personally! It has nothing to do with how much they love you. Simply remind them of who you are. If they seem embarrassed, you can respond in a way to put them at ease: “This new hair style of mine makes me look so different”
What do you feel are common concerns or frustrations that come up for caregivers and family members when it comes to communicating with someone with Alzheimer’s?
Communicating with someone with some form of dementia can make you feel as if you’re losing your own mind. Their short-term memory loss means they don’t remember asking or recieving an answer to a question, so they repeat it frequently.
There isn’t much we can do about the repetition, but there are a couple of things people can try. One thing is for the person to remind themselves that IF their loved one could remember, then they wouldn’t ask again. Second, it helps to remind ourselves that they didn’t ask to have a cognitive disease. Third, since this problem may be worse in earlier stages it may be beneficial to have a notebook or white board that reaffirms the answer. If, for example, they ask if they took their meds, you can have them check the board to see if “take meds” is checked off. While this may not decrease the repetition immediately, over time muscle memory may have them checking the board (notebook, whatever you choose) before bugging you. This helps them maintain a sense of independence and helps you keep your sanity.
How can I tell if my loved one is depressed? What can I say or do to help them when they are low?
Depression in someone with Alzheimer’s disease is huge. For some, they know something is wrong, but not exactly what. Understandably, this causes anxiety. Others may be aware of the loss of ability, loss of independence, and then withdraw or become angry and combative. This is definitely a challenge because what they are feeling is usually accurate to their situation. Remind them that you’ll be there no matter what, that you love them, and then just listen to them. We all need to be heard and our fears acknowledged. Where you go from there is soley dependent on your loved one. This is one of the biggest challenges with this disease; one size definitely does not fit all.
How do you recommend a family member or loved one respond if they don’t recognize who you are?
I was lucky in a way when I confirmed my Mom had forgotten our specific relationship. She didn’t forget ME, she forgot I was her daughter. She knew I was a fun person, so she assumed I was her friend. I had lost a tremendous amount of weight and it made sense that the person she was seeing didn’t seem familiar. I didn’t seem familiar to myself! It’s helpful to remember that they haven’t forgotten us, they’ve forgotten the words that describe our relationship. Spending time with them and making them as happy and relaxed as possible is more important than them remembering “daughter” or “husband”. Babies don’t have the word for the relationship, yet they still know which person is the most important in their lives. Focusing on “the relationship” that we want and not the word that describes it will be more comforting and productive in the long run.
As your communication style with your mother has evolved to fit her needs, what personal advice do you want to share with other caregivers who love someone with Alzheimer’s?
Positive verbal and nonverbal communication is the key to winning the battle with Alzheimer’s disease. I’ve had to learn how to adapt to my mother as she’s slowly lost language and change how I communicate with her. Observing her, being patient, and understanding her needs have strengthened our relationship even when she has difficulty communicating. For caregivers, I would suggest leading with love as you navigate this disease. This looks like patience, developing a unique way to communicate after observing your loved one, using positive body language and tone, and providing comfort to your loved one.
What have been some unexpected communication difficulties, and how have you coped with those in a way that might help others cope?
Honestly, I haven’t had any unexpected communication difficulties. As a reading specialist, I’ve always found research-based strategies to implement in my home. However, the most challenging part of the process is working with her in her later stages, and the methods aren’t working like they would for individuals who can “grow out of” communication deficits. Watching my mom struggle to find vocabulary, name objects, or remember events is heartbreaking. I cope by helping her navigate and by accepting where she is now.
Your superpower seems to be helping your mother live with dignity and joy. How can other caregivers pay forward the same respects?
Thank you so much! I believe that individuals who have been diagnosed with Alzheimer’s can live a full life. Unfortunately, negative stigmas have been associated with this disease for so long. My goal is to change the way caregivers view this journey. Our loved ones deserve dignity, to have fun, and to live out their days in joy and love. Providing positive experiences for them such as dinner dates, walks in the park, museum visits, and hanging out at the mall for a few hours will change your outlook on caregiving.
For more information, follow Ty on Instagram or subscribe to her Youtube Channel.
What best practices do you recommend for finding out how a loved one is feeling as they lose their cognitive abilities? Do you think these types of check-ins are helpful or could they make things more difficult?
Finding out how your loved one is feeling becomes much more observational as dementia progresses. A person can find it difficult to identify emotions and feelings because of damage in the limbic system. Asking them how they feel can sometimes be confusing for them and you may not get an accurate answer. Remember Mehrabian’s Rule of Communication: only 7 percent of how we communicate is about the words, 38 percent is about the paralanguage (pitch, tone, volume etc) and 55 percent is about our nonverbals (body language etc). This applies to all human communication not just for those experiencing dementia. So worry less about words and focus more on what you see. There are always signs to how someone is feeling.
Another technique to keep in mind is Naomi Feil’s Validating Technique. This is about validating how someone is feeling. To invalidate will only increase the person’s upset. For example if you felt angry about something, how does it make you feel if the people around you start telling you to “calm down” because “there’s no need to get upset,” or worse, using their nonverbals with hand gestures to indicate you should calm down. It makes you more mad, right? Even if you know they’re right and you’re wrong, in that moment you’re angry and you need to get that out before you can calm down. Acknowledge the feelings you do see from someone experiencing dementia, so that they can feel like (a) you understand and (b) you’re on their side, not against them.
How can caretakers adapt their communication styles to their loved one’s changing needs as their disease progresses? For example, we imagine that communication at earlier stages looks much different than it does at later stages.
You really need to be the person’s communication partner, as their communication skills decrease you need to make up the difference for them. I cover this on the training I deliver when I discuss communication loops. It helps you adapt your usual communication style to aid the other person with theirs. In my training I do demos and role-playing for you to be able to see the various skills in action. Here are my top ten tips for communicating:
1. Use short sentences with the key word first.
2. Use one sentence at a time with silence before the next.
3. Get rid of the fluff: we use a lot of unnecessary filler words. Start cutting those out.
4. Put emphasis on the word you want them to pay attention to.
5. Remember only seven percent of how we communicate is about the words we use. Body language and how it’s said are way more important.
6. Use actions or objects as visual prompts to aid understanding.
7. Don’t correct. As long you know what they mean it doesn’t matter if it comes out a bit wrong.
8. Don’t be disingenuous or patronizing: this annoys anyone.
9. If you’re really stuck, see if you can lighten the mood and laugh together about it.
10. Agree. Often disagreeing starts an argument that they’ll forget, but you won’t.
We often hear people talking to their loved one with Alzheimer’s as if they were talking to a child — won’t that feel demeaning? How should someone talk with them? What tone is appropriate?
Absolutely, talking to an adult like a child will make them feel patronized and it is demeaning. While professionals do not advocate speaking to an adult like a child, it’s important to understand that some of the communication techniques you use with children work for those experiencing dementia. The tips I provided above would all work with a child, but we still use the same paralanguage that I mentioned at the beginning as we would for any adult. So the tone depends on the message you are conveying rather than how capable you think someone is of understanding you.
For more information, follow Debbie on Instagram @DementiaDebbie