I know from personal experience that telecommunicating with a loved one who has Alzheimer’s disease can be frustrating and emotional.
I also know that what’s difficult for me must be a hundred times more challenging for my grandmother living with this neurodegenerative disease.
When my grandma was diagnosed with Alzheimer’s disease 2 years ago, I was working in a memory care facility. There, I saw the trajectory of my grandmother’s disease firsthand.
Through training, trial, and error, I also learned effective techniques for communicating with people in various stages of the disease.
Communicating in person with someone who has Alzheimer’s disease has its challenges, but virtual communication? That’s another story.
As my grandma’s disease progressed, talking on the phone felt more stilted and difficult. Due to the pandemic, phone and video calls are now our only form of communication.
It became clear that I’d have to learn some new techniques for virtual communication to keep our chats going.
How Alzheimer’s affects communication
I knew that the first step to easier video chatting with my grandma was to understand what was causing her difficulties in the first place.
Alzheimer’s disease is much more than memory loss. It’s believed to account for 60 to 80 percent of cases of dementia.
It’s also a neurodegenerative disease with a wide array of symptoms, including visual-perceptual changes. On top of that, it often involves difficulties with problem-solving, speaking, writing, orientation, and otherwise familiar tasks.
All of these symptoms mean that for someone with Alzheimer’s, talking over the phone or video can be disorienting. They can no longer rely on nonverbal cues to help them communicate.
They may not even understand that they can interact with the screen or that it’s you on the screen in the first place.
Kari Burch, OTD, an occupational therapist at Memory Care Home Solutions, has been providing telehealth to people with Alzheimer’s since the beginning of the pandemic.
According to Burch, there are specific symptoms that make telecommunication challenging. These include:
- reduced language processing skills
- visual-perceptual changes
- slower processing times in general
- reduced patience and increased irritability
- disorientation and confusion
- difficulty navigating technology
“If it’s difficult to comprehend what you’re saying, it’s difficult to interact and answer questions appropriately,” Burch says.
She adds that trouble perceiving someone on a screen, along with technology issues like lag time or garbled sound, can further complicate virtual interaction.
Andrea Bennett, OTD, an occupational therapist whose grandmother has dementia, points out that modern technology combined with memory loss can be a perfect storm.
“Most individuals who currently have dementia did not grow up with the modern technology we’re used to in our daily lives, so just the computer or phone itself may be a foreign concept to them,” she says.
Combined with the frustration and confusion of memory loss, the entire experience may be especially challenging.
The video chat learning curve
Due to the pandemic, it’s Facetime with my grandma for the foreseeable future. In the beginning, it was rough.
We’d run out of things to say and there were awkward silences. I’d ask her questions about her day that she couldn’t answer because she didn’t remember. She’d get confused by the paintings behind me. Sometimes I’d call and she was still asleep.
I’m an occupational therapist myself and worked in a memory care facility. Despite my professional experience, I learned that virtual communication adds a whole new layer of difficulty.
Over the past 7 months, I’ve adjusted my communication techniques to have more comfortable, effective, and enjoyable conversations for both of us.
Tips for easier communication
1. Find the right time of day
The first step to easier telecommunication with someone who has Alzheimer’s disease is to call at the right time of day. That’s when your loved one is rested and most alert.
According to the Alzheimer’s Association, Alzheimer’s disease affects the sleep-wake cycle. I’ve noticed this with my grandma, and I definitely noticed this when I worked at a memory care facility.
- sleeping longer
- difficulty sleeping at night
- daytime naps
- drowsiness during the day
Scientists don’t know exactly why this occurs, but believe it’s due to Alzheimer’s-related changes in the brain.
My grandma tends to get out of bed late in the day, around 11 a.m. or noon. She is most alert in the early afternoon, so this is when I call. Since she lives in assisted living, I also avoid calling at mealtimes or when there are group activities.
Instead of trying to change your loved one’s sleep cycle or schedule, recognize the impact of their disease and work with them.
Know that finding the best time of day to call might take some trial and error, and it might change as their disease progresses. Talking to caregivers or keeping a calendar of symptoms can help you find the best time to call.
2. Avoid calling after sunset
Everyone experiences Alzheimer’s differently. While there are no hard and fast rules, you might find it helpful to avoid calling after sunset.
This is due to a phenomenon known as sundowning, which is characterized by behavioral changes in the evening. These changes include increased agitation, confusion, aggression, and delirium.
Bennett compares this to how we might feel after a long, busy day of work.
“A person with dementia might put a lot of energy into their day trying to [orient themselves], or how to complete tasks we take for granted, like eating, moving around, and getting dressed,” she says. “When your brain isn’t working at its best, all these tasks take a lot more effort and can tire one out more easily.”
Not everyone with Alzheimer’s disease experiences sundowning. If your loved one does, call in the morning or early afternoon when they might feel more oriented.
There are also strategies to reduce sundowning.
3. Simplify your language
It’s easier said than done, but one of the best things you can do to aid communication is simplifying your language.
According to Bennett, “Usually we add a lot of fluff and storytelling to our main point, but individuals with dementia might get lost in all that fluff.”
Try using as few words as possible with simple, common phrases. Cut out modifiers and shorten your sentences. Bennett even recommends pairing visual supports like pictures or props over video chat to get your point across.
I’ve found that avoiding open-ended questions can help.
I ask yes or no questions or give two options. This can help prevent overwhelm and limit the cognitive resources required to communicate, saving energy for the rest of the conversation.
4. Slow way, way down
Slowing down is another important change you can make to the way you speak. This is especially true over phone or video when you might face connectivity issues or lag.
I can vouch that this will feel awkward at first, but the benefits can be profound.
“Keep your speech slow and deliberate,” says Burch. “Don’t talk just to fill space.”
It feels unnatural to sit in silence after saying something, but what might feel to me like an awkward silence is actually an important tool.
Because people with Alzheimer’s have slower processing times, they need that silence to comprehend what was just said. It also gives them the opportunity to formulate their response.
By slowing down and incorporating more conscious pauses in our conversations, I’ve noticed that my grandma speaks up more.
5. Incorporate gestures
Communication isn’t just verbal. Nonverbal communication tactics like gesture and touch are also important, especially for people with Alzheimer’s.
A 2015 study concluded that representational gestures like pointing to an object help compensate for speech deficits.
When talking over the phone, we lose the ability to gesture. Our conversations may suffer as a result. Try chatting over video and adding in gestures to your conversations.
Burch recommends gestures like:
- giving a thumbs-up
- giving the “OK” sign
- “talking” with your hands
- facial expressiveness
- pointing to objects you’re talking about
- using fingers to list things (like first, second, and third)
- indicating size with the distance between your fingers or hands
Burch offers an example. Instead of saying, “Thank you so much, that means so very much to me,” you could say, “Thank you,” place your hand on your heart, and offer a meaningful smile.
Not only will this help your loved one understand what you’re trying to say, but you may understand them better by seeing their own gestures.
If they seem at a loss for words, remind them that they can point to an object and you’ll be able to see them do that through the screen.
6. Focus on the present moment
It’s a natural conversational reflex to talk about the past, but this has its obvious challenges for someone with Alzheimer’s disease.
While everyone is different, memory loss in Alzheimer’s disease does follow a pattern.
According to the Alzheimer’s Association, short-term memory loss of newly learned information is a feature of early Alzheimer’s. As the disease progresses, long-term memories such as important past events, dates, and relationships may be affected too.
As my grandma’s disease progressed, I noticed that if I asked her what she did that day or what she had for lunch, she would say “I don’t know.” This often resulted in her getting uncomfortable and confused.
I knew that I had to change our conversation topics.
Now I try to focus on the present moment. I’ll describe my surroundings and ask her to describe hers. I tell her what the weather is like where I am and ask her to look out her window and tell me about the weather there.
Focusing on sensory experiences, like the weather, what you’re wearing, or even if you feel hot or cold helps keep conversation in the present.
7. Talk about the distant past
Memory loss may be a central feature of Alzheimer’s disease, but it’s still possible to talk about the past.
Instead of asking about recent events that might be lost to short-term memory, focus on events from long ago. Even people in advanced stages of Alzheimer’s may still have fully intact memories from childhood.
My grandma may not remember what she had for lunch, but she remembers her wedding, and she remembers my dad’s childhood antics.
Burch points out that if it’s a shared memory, it doesn’t necessarily matter if your loved one remembers.
“It will be nice for them to hear about how much you enjoy remembering it,” she says.
Burch gives examples, like talking about the apple pie your loved one made that you enjoyed so much, or how hard she worked as a lawyer and how that inspired you.
“This may spark some memories or pride that will be enjoyable to talk about together,” she says.
8. Engage their senses
Reminiscence uses verbal and sensory prompts like photos, scents, smells, or textures to spur memories. It may not be possible to have a full sensory reminiscence session via Zoom, but there are still some ways to engage the senses.
Sharing photos can spark memories and conversation.
I print out photos for my grandma and mail them to her. I also made her a photo book with descriptions below each photo. Looking through these over video chat is a fun way to mix up normal conversations.
Music is another great tool, especially if your loved one enjoyed a specific genre, artist, or song in the past.
Research supports this. A 2018 systematic review found that music can improve memory deficits for people with Alzheimer’s, and a 2015 systematic review found that music can reduce anxiety for people with dementia.
Anecdotally, I’ve seen the impact of music from my time working in the memory care facility. People who were completely noncommunicative would perk up as soon as I played Frank Sinatra. They would often start singing along and smiling.
Burch suggests starting your call off with a shared song that your loved one knows well, especially music from their teens or 20s.
On the other hand, while sensory experiences can definitely enhance a video call, they can also create added confusion.
Using a solid color Zoom background or calling from a quiet, well-lit place with a good internet connection can all reduce distractions.
9. Enter your loved one’s reality
The best advice I was ever given while working in the memory care facility is that when communicating with someone who has dementia, you need to enter their reality.
Instead of correcting my grandma, I suspend my disbelief. If she calls me by the wrong name or relation, I brush it off. If she asks the same question ten times, I calmly answer it each time.
It helps me to remember that if my grandma is asking a question for what seems like the millionth time to me, it is actually the “first time” to her. I put myself in her shoes and go with it.
You may also notice that your loved one doesn’t remember their spouse passed away, or other tragic events from the past. Don’t correct them.
I know this can be painful and emotional, especially if that person was your parent or grandparent. But reminding your loved one of their deceased spouse will force them to go through the grief all over again.
“No one enjoys being told that they’re wrong,” Bennett says. “Remember that the goal of connecting with your loved one isn’t to get them to remember who you are… a positive interaction is much more pleasant than reminding someone over and over again that they are wrong, to the point of frustration on both ends.”
It’s not easy, but it can be beautiful
Despite the challenges, communicating with someone who has Alzheimer’s disease can still be joyful. Unlocking a memory or calling on a particularly good day can almost feel like magic.
With these tips, a little bit of experimentation, and a lot of grace, it’s possible to have meaningful virtual interactions with a loved one who has Alzheimer’s.
Sarah Bence is an occupational therapist (OTR/L) and freelance writer, primarily focusing on health, wellness, and travel topics. Her writing can be seen in Business Insider, Insider, Lonely Planet, Fodor’s Travel, and others. She also writes about gluten-free, celiac-safe travel at EndlessDistances.com.