What Might They Be Experiencing Right Now?
You ask your loved one to join you at the table, but they stay where they are. You reach out to help with a sweater, and they pull away. During a family visit, someone who usually enjoys company becomes quiet or upset.
These moments can leave caregivers wondering what happened. Are they uncomfortable? Did they understand? Is the activity too difficult today?
Dementia can change how a person takes in and makes sense of information from their senses. Considering that experience can help us better understand their responses and find thoughtful ways to support comfort, participation, independence, and connection.
At a Project Present caregiver support session, Mary Stoinski, founder of Dementia Life STL, led an immersive learning experience exploring cognitive and sensory challenges associated with dementia. The session prompted us to consider how everyday activities might feel to someone whose experience of the world is changing.
One question from our follow-up offers a useful place to begin: “What might this person be experiencing right now?”
We may not know the answer immediately. Asking gives us a reason to pause, look more closely, and consider what could help.
Making sense of the world takes work
Our senses continually bring us information. We hear a voice, see a doorway, feel a sleeve against our arm, or notice the smell of lunch. The brain helps us interpret that information, connect it with what we know, and decide how to respond.
Dementia can interrupt or slow this process. A person might see something clearly but have difficulty recognizing or interpreting it. Judging distances or understanding the space around them can also become harder. These changes vary from person to person. The Alzheimer’s Society’s guidance on changes in perception explains this distinction between seeing something and making sense of it. www.alzheimers.org.uk
A shadow on the floor may look like an obstacle. An object among several others may be difficult to identify. A familiar room may become harder to navigate when the lighting changes.
Attention matters, too. Following a conversation while a television plays and other people talk requires someone to sort through competing information. Dementia can make it harder to stay focused or manage several things at once. What we barely notice in the background may interfere with the interaction for our loved one. www.alzheimers.org.uk
Hearing loss and eyesight problems can add further difficulty. Regular checks and support with glasses or hearing aids remain important. When someone struggles to see or hear, we need to consider those possibilities alongside changes related to dementia. www.alzheimers.org.uk
Look again at the response
When someone does not respond as we expect, it is easy to focus on what they have done: refused help, stopped participating, became upset, or left a task unfinished. Considering their experience opens up other possibilities.
If your loved one pulls away when you approach, did they see you coming? Before moving closer, try entering their field of vision, greeting them, and giving them time to notice you. They may need a moment to understand who is there and what is happening.
If they seem unable to follow your words, listen to the room. Is the television on? Are several people speaking? Try turning off the television or moving somewhere quieter, then give the conversation another chance. Does it seem easier for them to attend to you? Reducing noise and distractions is one practical way to address possible environmental triggers. www.alz.org
A task can bring several kinds of difficulty together. Buttoning a shirt requires someone to locate the button and buttonhole, understand what to do with them, and coordinate the movement. Trouble seeing or interpreting those details is different from trouble planning or carrying out the movement. Dementia can affect both, and we cannot tell which is involved simply by noticing that the shirt remains unbuttoned. www.alzheimers.org.uk
Look at where the person seems to get stuck. Can they find the fastening? Do they begin but struggle to complete it? You might improve the lighting, demonstrate the action, or offer help with the fastening. If the difficulty continues, their care team may help identify appropriate adaptations.
“What might this person be experiencing right now?” can lead us to another useful question: “What could I change to make this moment easier to understand or take part in?”
Support the person’s participation
A thoughtful adjustment begins with the person in front of us. Notice where the difficulty seems to arise and offer support that leaves room for them to participate.
At a meal, look at the table. Are there several objects competing for attention? Try removing the things that are not needed and see whether the person can more easily find what they want. While dressing, help with a difficult fastening and allow your loved one to finish another part themselves. During a visit, try one conversation at a time.
Before taking over a task, consider what the person can do with a little support. They may need you to open a container but still be able to use what is inside. Give them time to do the part they can.
Invite involvement and pay attention to how your help is received. If an adjustment does not help, reconsider. The person may be tired, uncomfortable, uninterested, or finding the task difficult for another reason.
For more on supporting understanding during an interaction, our article When Communication Changes: Meeting Your Loved One Where They Are explores clear instructions, pacing, and nonverbal cues.
Leave room for enjoyment and connection
The senses also offer ways to enjoy being together. Familiar music, a photograph, the feel of a favorite blanket, or an activity someone has always enjoyed may provide a welcome point of connection. Sensory activities can offer opportunities for engagement as verbal communication becomes more difficult. www.alzheimers.org.uk
Pay attention to what seems welcome. If your loved one enjoys music, try listening together when there is little else competing for their attention. Do they sing, tap a foot, relax, or seem bothered by the sound? Their response can help you decide whether to continue, lower the volume, change the song, or turn it off.
The same curiosity applies to touch. Someone may appreciate holding your hand or prefer a little more space. Ask when possible, approach without rushing, and notice whether the contact is welcome.
We also need to consider physical needs. Pain, fatigue, hunger, medication effects, and illness can contribute to changes in behavior. Sudden or rapidly fluctuating confusion or behavior changes should be brought promptly to a healthcare professional’s attention. www.nia.nih.gov
We will not always know what someone is experiencing or find a helpful adjustment on the first try. Start with what you notice. If the room is noisy, reduce one source of sound. If the person seems startled, give them more time to notice you before moving closer. Then pause and watch what happens.
Did that seem to help? Is something still difficult? We can ask, listen, try an adjustment, and use the response to guide what we do next.
If you would like help practicing these approaches in everyday caregiving, connect with Project Present. We can help you find a starting point through our caregiver education and support offerings.
