Alzheimer’s is still the sixth leading cause of death in the United States. Current estimates state that Alzheimer’s costs the United States about $172 billion a year. Even more shocking, only 45% of Medicare patients diagnosed with Alzheimer’s are informed of their diagnosis, according to medical records and Medicare surveys. The reason? Because too many people believe that telling a person that they have an Alzheimer’s diagnosis is sentencing them to “a fate worse than death.”

This disregards the fact that people with Alzheimer’s are still people, first and foremost. Having worked with so many of them, I can attest to the fact that people with Alzheimer’s experience the same complicated range of emotions that those without Alzheimer’s experience: love, happiness, pain, anger, relief, and sadness. They think, they feel, they have opinions. Treating these people as less than human, calling their condition “a fate worse than death,” is an abhorrent insult to the real life struggle that people with Alzheimer’s have to endure every day.

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Furthermore, not informing people of their Alzheimer’s diagnosis violates the most basic freedom that all human beings are born with: the ability to make decisions for oneself. A person who isn’t told that they’ve been diagnosed Alzheimer’s will still feel the symptoms, still notice the memory loss. Perhaps most importantly, one will be robbed of the necessary time to make plans for oneself, to plot out the direction that one’s life will take when the Alzheimer’s begins to set in more deeply, at which point communication becomes more difficult.

A person with Alzheimer’s deserves the same rights as anyone else. We should never forget that.

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More Alzheimer’s Reading:

Vox: I thought I could fix my Alzheimer’s patients. I learned to help them instead.

Alzheimers.net: Why I Wrote a Novel about Alzheimer’s

Headstuff: 10 Surprising Facts about Alzheimer’s

Big Al’s Books & Pals: Guest Post

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7 thoughts on “The Freedom of a Person with Alzheimer’s

  1. That is amazing, 55% are not told their diagnosis, what exactly is the point in a doctor who only chooses to give out certain information, I am sure they wouldn’t only accept 45% of their bill. I wonder how long it will be before the floodgates of the lawyers are opened.

    I think most people would rather know, then they can make arrangements and th rest of the family and friends also have time to come to terms and treasure the times of coherence even more.

  2. My father knew he had some type of dementia. I don’t know if it was Alzheimer’s or not, although I’m pretty sure he knew what form of dementia he had. He made many arrangements before it go too disabling for him. He made plans for his care in a few facilities so that my brother and I had choices when the time came. He handed over power of attorney and sold and gave away items he had no use for while he was still able to determine what was needed and what wasn’t. I think it made the transitions he had to go through easier for him. He may not have remembered all he had done for himself, but I think he sensed it.

    • Thank you for posting this, and yes, this is exactly the reason it’s so important to inform people of a dementia diagnosis instead of hiding it from them: while they still have the ability to make choices for themselves, that freedom should not be robbed from them.

  3. Wow, this is the first time I’ve seen your revamped blog in its fullness (I was using a Kindle fire fire, and you can’t see everything,) and I’m more impressed than ever, man!

    I couldn’t agree more: those with Alzheimer’s SHOULD be informed of their diagnosis. This angers me that many of them aren’t being told! Thank you for being you, Nicholas, as always. It’s a pleasure.

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