alzheimer’s disease dementia

I had no idea.

I’ve signed up for email updates from the Alzheimer’s Association and other related organizations. I’ve participated in the Walk to End Alzheimer’s and followed groups on social media to learn snippets about the disease.  I skim through the headlines and occasionally read through the body of a message, but rarely click for more or sit down and really learn something about the people who live with Alzheimer’s Disease. When I saw Still Alice by Lisa Genova I figured it would be a nice chance to get a better understanding of memory impairment.

still alice by lisa genova alzheimer dementia

There are plenty of suggestions out there for keeping your brain active and engaged in hopes of preventing or prolonging the onset of memory impairment.  Some people do a great job making associations and using context clues to essentially fake comprehending a situation – although neither you or those around you necessarily realize you’re faking it.  Or – you might be smart enough to begin with so that when your ability falters, you still have other synapses that cover for the missing and damaged ones so that you don’t even recognize a problem or error right away.

You might know the panic or frustration when you misplace something. But think about forgetting what you’re supposed to be looking for on top of not having the object readily available, and then later finding it in the microwave or freezer, or other location you wouldn’t have normally dreamed it to be.

November is national caregiver month. These are the individuals who sometimes choose, but probably more often get thrown into a situation to care for someone they love providing the best possible environment they can.  They find themselves repeating things, watching so the person doesn’t wander off, or finding the “certain way” routines need to be done. They discover the tasks their loved ones have known how to do forever, but just can’t anymore.

The story made me consider what it feels like to know something isn’t quite right, to have other people talk about you and make decisions for you as if you weren’t there, and to wonder if another diagnosis – like cancer – would be “better” because at least you could fight it and do something active that felt productive even if you eventually lost the battle.  One of the scariest things might be just losing control of what you know and even yourself.

At first I wasn’t completely captivated by the author’s performance on the audio production, but she definitely made me think and kept me interested. Others have complained about the repetitiveness. However, the words are not exactly the same in the parts that might seem to repeat – you actually experience the progression of the disease first hand in the text.

Maybe it was a little more real because my grandma’s name was Alice too. Or because both grandma and grandpa would have been 95 this week, and might have had a better quality of life in their last years if not for dementia.   It’s frustrating.  It’s an unknown. When drug trials fail, when there’s no clear diagnosis that describes everyone,  when there’s dementia, Parkinson’s, Alzheimer’s, memory impairment – over 100 conditions that we’re still learning about and trying to understand.

While it is hereditary, there have been strides in new funding for more research and learning this year. And now I’m one more person has a slightly clearer idea of what dementia entails.

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