It’d been an exhausting day at the office and Mary just wants to go home, heat up some leftovers, and binge watch her favorite TV show. But she can’t. Instead, Mary visits her dad at his nursing home, just like she does every day. Of course, she loves him and wants to spend time with him, but every time it's the same confusing and frustrating routine. She tries to talk with him about her day or how he’s feeling, but he always floats back to two dreaded questions where they remain stuck for the remainder of her visit: “When am I going home? And where is Clara?”
The questions leave Mary feeling discouraged and sad. His home was in another state and was sold shortly after he moved into the nursing home. Tom’s doctor said it wouldn’t be safe for him to live alone. Tom’s wife Clara died a year ago, just before the big move. Mary keeps trying to tell him, but it doesn’t seem to make a difference. He just gets upset and then starts asking again.
If your clients are caring for someone with Alzheimer’s disease, they may feel frustrated at times, too. Communicating with someone with Alzheimer’s disease can be easier if we understand what is happening in their brain and how it affects memory and communication.
What we’ll cover:
- What’s happening in the brain
- Why they do that
- How to respond
First, What’s Happening in the Brain
Alzheimer’s disease is caused by microscopic changes (plaques and tangles) that disrupt communication between brain cells and cause them to die. These changes typically emerge in the temporal lobes, which are the parts of the brain used for memory and communication.
In a healthy brain, the temporal lobes store new memories, much like putting a file away in a filing cabinet or saving a spreadsheet on a computer’s hard drive. But, in Alzheimer’s disease, the files aren’t saved and therefore can’t be recalled or used. The memory that Mary wants Tom to retrieve may not exist, because the disease has disrupted his ability to form new memories. It can be hard to predict what people with Alzheimer’s disease will and won’t remember, but we know that things that happened after a person develops the disease will be harder to remember than things that happened before.
The longer a person lives with Alzheimer’s disease, the more these changes spread in the brain, and the more they’ll forget. Recent memories are lost first, and older memories are affected as the disease progresses. This is why Tom’s behavior seems so strange to Mary but makes sense to him.
Why Do They Do That?
Tom asks the same questions over and over because he likely has no memory that his beloved wife died or that his longtime home was sold. This leaves him confused and upset as to why he’s in this strange place and why he can’t find his wife.
He feels scared and alone, and thinks that if he can just find Clara and go home, everything will be okay. When he finally sees his daughter Mary, someone he knows and trusts, he desperately asks questions hoping to get the information he needs. Mary is upset by his questions. How could he forget that mom died? Why does he insist on going back home when the doctor says he needs to stay here? We don't even have his home.
So, she tries to reason with him by explaining that Clara died and his home is gone. Tom explodes in anger, but soon ends up sobbing. His memory problems have created communication problems as well.
How Should Clients Respond?
Families often do what seems right—they try to convince the person of the truth, by correcting the person’s mistaken beliefs or confusion. This often does more harm than good. When Mary tries this, it doesn’t stop the repetitive questions and it only upsets Tom further. It won’t help for Mary to keep telling Tom that his wife is dead and they sold the house years ago. Even if Mary manages to answer the questions in a way that he can understand, there’s very little chance that he’ll remember what she’s told him, and the process will start over again. Not only does he not remember what happened to his wife, he likely doesn’t remember that he already asked Mary several times since she arrived.
So, What Should We Do Instead?
Clients should try putting themselves in their love one's shoes. They should consider how they'd react if they were in a strange place where they didn’t know anyone, and theycouldn’t understand how they got there or why these strangers insist that they must stay? Imagine how upsetting it might be if they couldn’t understand what’s happening. What if they woke up tomorrow only to find the person they married wasn’t there, and they couldn’t find them no matter where they looked? They'd probably be upset too.
Mary Can Start by Taking Tom’s Perspective
When people get upset, they seek comfort and help from the people they’re closest to. Tom is looking for his wife because he’s lonely and confused and in need of comfort. If Mary only responds by correcting him, she won’t address his loneliness, even if she means well. She’ll only upset him further, which is the opposite of what they both want. Instead of restating the facts, she might try to distract him and then try to think about what he might need in that moment. Tom’s repeated plea to go home likely stems from a need for comfort and security. Maybe he’s lonely or bored here. Instead of arguing with him about going home, Mary might tell a favorite story from her childhood that involved Tom, Clara, and Mary. These are older memories that are likely clearer in Tom’s mind and can both redirect his attention and make him feel better.
Because of their problems with communication, Alzheimer’s patients can’t always tell your clients what they need. Oftentimes, families have to make educated guesses, which can feel like trial and error. Clients should do their best to try to enter their loved one's world and respond to their feelings.
But, Wouldn’t It Be Better to Reorient Them to Reality and Tell Them When They’re Wrong?
"Shouldn’t I tell them they already asked me that question 10 times?" Although this fits with a client's desire to be honest and factual, this approach simply doesn’t work. Over the long term, their loved one won’t remember what your client told them, and in the short term it will only upset them more. Instead of re-sharing painful information, it would be much better to take an empathetic approach. Clients can espond to how their loved one is feeling and steer the conversation to a new topic or activity. This is much more likely to help the person resume a sense of peace and calm.
But, Isn’t That Lying?
Not really. The goal of caregiving is always doing the best we can for the person based on what they need. People need love and thoughtful care more than they need facts. So if clients reflexively feel guilty about what seems like lying, they can reassure themselves that they're doing the most loving thing. Sometimes they have to listen differently. It’s not just facts, but feelings and needs that matter.
What If Their Loved One Gets Angry? Should They Just Leave?
Sometimes the best thing clients can do is take a break and come back later. If they find that the things they said are upsetting their loved one further, try another conversation. If that doesn’t work, they can take a break. They may not always be able to respond in a way that is helpful, and that’s pretty common. It’s okay for clients to to tell their loved one they love them, but that they have to leave. In dementia care, they'll always get another chance on their next visit. Clients can go ahead and take a break and come back later.
3 Things for Clients to Remember When Caring for a Loved One With Alzheimer’s
First, Alzheimer’s disease affects the area of a brain that handles memory. It especially hinders a person’s ability to create and recall recent memories. Second, a person with Alzheimer’s may keep asking about a loved one that died or a previous home because they have no memory of what happened to them. Third, clients shouldn't keep trying to convince their loved one of the truth. It will only frustrate both the client and their loved one.
Clients' Loved Ones Can’t Remember Memories That Aren’t There
Alzheimer’s disease can make it frustrating for clients to interact with their loved ones. But if they understand the way memory and communication are affected by the disease, they can provide better care.
The next time you’re with your loved one, if you start to feel frustrated, imagine what it might feel like to not remember what happened yesterday or to be unable to express yourself well enough for people to understand you. If you were confused and upset, how would you want people to approach you? Try responding to the way you think the person feels and not to the words they say.
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