Understanding the limitations of a person with dementia

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A reader of my blog wrote in recently to ask me about a woman who was taking care of her mother. This woman was trying to get her mom with advanced dementia to sit at a table, eat with utensils, hold and pay attention to conversation, and eat regular foods. The reader was frustrated by this, as I would have been, too. ”It’s insensitive to [the mom with dementia] abilities and self-esteem.”

I’ve had a lot of residents with dementia at my care communities. I have, subsequently, worked with a lot of their families. While probably 90% of them are really fantastic families who “get it,” and understand dementia and their loved ones’ limitations, every once in a while you have families who just DON’T get it. And they never will.

“Somebody needs to be walking with dad up and down the hallway,” Cheryl insisted. “His legs are strong, and he needs to be walking,” she said.

I sighed. Cheryl’s dad, Jim, was not going to be doing any walking anytime soon. He was in a wheelchair, and although he could walk with the help from our therapy team, it was a potentially dangerous situation without trained therapists around. 

“Cheryl, the problem is not how strong his legs are,” I offered. “It’s that his brain, because of his dementia, is not telling his legs to walk. This is only going to continue to get worse,” I said. “I just want you to be prepared for that.”

Cheryl paused, seeming as though she was thinking over what I had said. “Well…it won’t get worse if someone is walking with him. He can learn to walk again,” she insisted.

It is impossible to convince a family member of a loved one’s obvious decline if that person doesn’t want to believe it. I always do my best to try and reframe a family caregiver’s expectations when they are having trouble understanding, but it’s often a fruitless task. 

Positive dementia caregiving is as much about the caregiver’s expectations and understanding of dementia as it is their ability to communicate with their loved one.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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