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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.
By
WebMD Feature

You know how frustrating and heartbreaking dementia symptoms are from the point of view of a caregiver. You know the pain of slowly seeing a loved one slip away. But what is it like for her? What is it like for a person to slowly -- or sometimes quickly -- forget almost everything she ever knew?

Dementia is ultimately a lonely condition, and you can never truly know what it’s like for your loved one. But by asking experts – and people who are themselves in the early stages of the disease – we can get some idea.

“It’s devastating,” says Mary Ann Becklenberg, of Dyer, Ind., who was diagnosed with Alzheimer’s disease in 2008 at the age of 62. “I am acutely aware of all those areas in which I am not competent anymore, both small and large. Coming to terms with my own deficiencies is so hard.”

Learning something about the other side, beyond the dementia symptoms you see, could make you feel closer to your loved one. It could also make you a more understanding and effective caregiver.

Memory Loss: “Everything Became Fuzzier”

Dementia symptoms result from damage to the brain caused by disease or injury. As brain cells die, it becomes difficult or impossible to store new memories or access old ones. Sometimes dementia comes on suddenly, after a stroke or head injury. Often it comes on more slowly as the result of conditions like Alzheimer’s disease or Parkinson’s disease. Most causes of dementia cannot be reversed.

Mary Ann Becklenberg is in the early stages of Alzheimer’s disease, but her dementia symptoms have already had an enormous impact on her life. In 2006, she had to leave her position as a clinical social worker because she could no longer meet the responsibilities. “The world became much less defined than it had been,” says Becklenberg. “Everything became fuzzier.”

The diagnosis didn’t come until later. John Becklenberg says that he first knew that his wife had Alzheimer’s disease after she returned from a monthlong trip to California. “I was there with her for a week of her stay,” he says. “But when she got back, she didn’t remember that I’d been there at all.”

“That was so hard,” says Mary Ann Becklenberg, who now serves as an Alzheimer’s Association early stage adviser. “John listed all these things we did and places we went, and I didn’t remember any of them. That was when we knew.”

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.

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