What It's Like to Have Dementia
Understanding dementia symptoms from the inside can make you a better caregiver – and bring you closer to your loved one.
Dementia Symptoms: What Memory Loss Means
Some people think of memory loss superficially, as merely forgetting words or names. But it’s much more profound than that. Everything we do is premised on memory. When you walk into the kitchen to make dinner, your actions are almost unconscious. You grab food from the fridge, turn on the oven, take out plates and silverware – your memories are a foundation, and they give you a context for what you’re supposed to do in a given situation.
For a person with dementia, that context is ripped away. A woman with Alzheimer’s disease may walk into a kitchen and have no idea why she’s there or what she’s supposed to be doing. She might still be able to make dinner – especially in the early stages of the disease – but it’s a struggle. Each step has to be reasoned out and thought through. That’s why people with dementia tend to act more slowly than they once did.
In the advanced stages of the disease, the actions of a person with dementia may seem irrational. But Beth Kallmyer, MSW, director of client services for the national office of the Alzheimer's Association in Chicago, says that they often make a kind of warped logic.
“Our brains are built to reason,” says Kallmyer, “and even when the brain has been affected by a disease like Alzheimer’s, it’s still struggling to reason.” The problem is that as memories are lost, the brain just doesn’t have enough information to interpret situations correctly.
Dementia Symptoms: What Caregivers Should Know
As a caregiver, you may find certain dementia symptoms frustrating, baffling, and sometimes frightening. But what is the other side of the story? What is your mother doing -- and feeling -- when she puts her wedding ring in the freezer or accuses you of stealing from her? Here are some clues to understanding dementia behavior.
Forgetting. Obviously, memory loss is the essential dementia symptom. What is it like? We’ve all experienced the frustration of losing our keys seconds after we had them in our hands. Imagine that frustration, magnified and repeated constantly throughout the day.
In the early stages, people are well aware of this particular dementia symptom. They know that they’re losing their memories.
“Think about how you’d feel if someone brought in your granddaughter and you didn’t know who she was,” says Kallmyer. “You know you should know who she is, but you just don’t. You’d feel humiliated, frustrated, and afraid.”
What’s especially confusing to caregivers is that while the condition may be progressive, individual memories may pop in and out. One day, your mother doesn’t remember how to turn on the oven. The next, she successfully roasts a turkey. That sort of inconsistency is just a typical dementia symptom.
Difficulty communicating. One early-stage dementia symptom is difficulty following conversations, even though the person might cover it up well. “Sometimes, it really is easier to go along -- to laugh and pretend that I know what a person is talking about,” says Becklenberg. “I guess you could say I’m doing it to save face.”
It’s understandable, experts say. It’s a natural desire to avoid the humiliation of having to say, “I don’t’ remember,” over and over again.
As the disease progresses, these dementia symptoms worsen. A person’s language might become artificially complex and contorted, as he navigates around the countless words that have dropped out of his vocabulary. There will come a point where he’ll have difficulty articulating even basic needs. “Sometimes, the best a caregiver can do is guess,” says Kallmyer.
“Lying” and Confabulation. Pretty quickly, caregivers learn that they can’t trust their loved one’s answers even to very basic questions like “What did you have for lunch?” These apparent lies can make caregivers feel betrayed and angry.