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Palliative Care Center

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.
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Dementia Symptoms: What Caregivers Should Know continued...

It’s true that in the early stages of the disease, people with dementia might fib to cover for memory loss. But most examples of “lying” are dementia symptoms rather than intentional deception. “They’re more like an unconscious defense mechanism,” says Kallmyer. Specifically, it’s called confabulation – unconsciously replacing lost memories with fabrications.

What’s behind this dementia symptom? Our brains are always trying to make sense of things, to impose order on the information we take in. But when a person has dementia, whole experiences are constantly being lost, which makes it difficult for the brain to get its bearings. So the unconscious mind fills in the gaps, swapping in an old memory or coming up with a plausible alternative.

As a caregiver, you might be disturbed when your father sits down to Christmas dinner and says, “Happy Thanksgiving!” But from his perspective, he has no memory of opening gifts 20 minutes ago. Instead, he sees extended family sitting around the dining room table and makes an unconscious guess as to why they’re there. His brain tries to fill in for the missing information. Sometimes it’s right and sometimes wrong.

  • Anxiety and Depression. It can be difficult for a caregiver to see a loved one – who may have been generally optimistic and easygoing when she was well -- become anxious or depressed. Both are common dementia symptoms, and it’s hardly surprising. While their memories may fade, people with dementia are aware of what’s happening to them, at least in the early stages. They know that they have an incurable, degenerative disease. They can feel the scope of their world becoming more and more confined as they lose freedoms like driving. They know that they’re losing part of themselves too.

    “Prior to having this disease, I wasn’t a person who needed to ask for help much,” says Becklenberg. “But now I do, and it’s been a blow to my self-assurance and self-esteem. I can’t participate fully in life like I used to, and it’s a huge loss.”
  • Wandering. It’s not uncommon for a person with dementia to wander – to walk out of the house in a seemingly random direction. Caregivers can find this dementia symptom mysterious. Why would a loved one leave the safety of his home to wander through unfamiliar streets?

Sometimes, it’s aimless, the product of boredom. But in other cases, there’s a reason behind this dementia symptom. When a person has dementia, even the house she lived in for decades might suddenly be unfamiliar. Confused, she wants to get out and search for a place that she recognizes and where she feels safe. “Sometimes people who wander from their homes say that they’re trying to go home,” says Kallmyer. “It confuses caregivers, but the person might mean a different home – maybe the home she grew up in.”

  • Fear and Aggression. As the world becomes more confusing, and even their closest family members seem like strangers, people with dementia can feel defenseless and afraid, trapped and angry. Sometimes they can become physically aggressive, which can be frightening for a caregiver. How could your loved one turn on you?

    Look at this dementia symptom as a defense mechanism -- you’re not the real target of the aggression. Instead, a person with dementia is trying to fight back against the confusion and chaos. Kallmyer says that if a loved one is prone to aggression, it could reflect a specific problem that she can’t articulate. Sometimes just getting more physical activity during the day can reduce this dementia symptom, too.
  • Paranoia. A person with dementia may become irrationally suspicious of the people around him. He might become convinced, again and again, that someone has stolen his wallet. It can be demoralizing – after all the work you do as a caregiver, being called a thief a couple of times a day isn’t fun.

    But Kallmyer urges people to look at this dementia symptom from the other person’s perspective. “Imagine that you go to get your wallet right where you left it and it’s gone,” says Kallmyer. “You positively know you didn’t move it – because you have no memory of doing that. So the only logical conclusion is that someone else did. That’s the reality from the perspective of a person with dementia.”

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