Why the earlier stages of dementia are the hardest

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Christopher had just moved into our senior living community. He was very nice and polite, but it was pretty clear to me that he wasn’t ready for our level of dementia care. It’s incredibly rare that someone moves a loved one into dementia care too early. In fact, I would say it almost never happens: usually, people wait way too long to choose to move someone. Chris, though, wasn’t ready. He spent a lot of time in his room and didn’t talk to the other residents. I went in one day to check on him. “Hi, Chris!” I smiled. “Can I get you anything? We are starting dinner, so I wanted to come down and see if you’re going to be joining us.” He sighed. “Why is everyone here…so confused?” he asked me.

This was a tough situation. Chris was definitely confused. He didn’t have a super firm grasp on reality, he was a bit argumentative at times, he couldn’t drive a car anymore, and he’d gotten lost once in his small neighborhood. However, he was still in the earlier stages of dementia.

People in earlier stages of dementia are really at the hardest point in their disease process. They’re not always 100% aware of their impairments, so they argue with family members or try to hide what’s going on. “I’m fine!” they’ll yell. Others are completely aware of their impairments and feel sad and anxious about the loss. In either case, people in early stages of dementia usually have it pretty hard.

Families have it hard, as well. They are often working with a loved one who is anxious, irritable, and accusatory. Chris couldn’t remember where he’d placed certain items, so when his family came in, he’d pick fights. “Why did you steal my hairbrush!” he’d yell at his son. I did my best to coach his son to “apologize” by saying, “Sorry, dad, I must have put it in the other room,” and then going to get it.

I often call moderate stages of dementia the “sweet spot.” People are no longer aware of their impairments, and it makes it a lot easier for families to embrace their realities. It’s also a lot easier on the person with dementia. They are not aware that they are impaired, so they are much happier!

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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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