Ten Things in Dementialand and Why We Should Keep Talking Even if Things Get Weird

At the end of a recent presentation, a guy asked me a question. It was a great question–kind of like a huge softball making its way to the plate so I could hit it out out of the park. (Not that I have any idea what it feel like to hit a softball out of a park. When I play slow pitch I’m just lucky to make contact.)

He asked, “What’s one thing about dementia that you want people to know that they don’t know?”

Maybe I was intimidated by having to narrow my thoughts down to one thing. Maybe I was just not on my game. But my response was not a home run. It wasn’t even a ground rule double.

“It’s just that so many are impacted….” I started. Then I went off on some rambling journey with a bunch of statistics that left my poor audience with glazed eyes and an urge to sneak out the back door. (As a speaker, I can tell when someone is eyeing a door and wondering if emergency alarms will sound if they open it.)

My response was not impactful. It was not engaging. It was just pretty lame. Opportunity blown.

I’ve given it some thought, and I want another chance…except I can’t name one thing. So here are 10 things I want people to know about dementia:

  1. Dementia itself is not a disease. It’s a set of symptoms caused by diseases like Alzheimer’s, Lewy-Body dementia, Huntington’s disease, Korsakoff syndrome, and frontotemporal dementia. (Don’t be offended if I left out your disease–there are dozens). People should not be “diagnosed” with dementia because it is not a diagnosis any more than a cough is a diagnosis.
  2. Memory loss is a part of dementia, but it is only part of a constellation of symptoms including (but not limited to) impaired judgement, speech problems, sleep issues, personality changes, paranoia, hallucinations, perceptual issues, irritability, and anxiousness. Memory loss is usually one of the first symptoms noticed if the dementia is caused by Alzheimer’s. However, dementia is much bigger than just memory loss.
  3. Some people who have dementia know they have dementia. Some people who have dementia do not know they have dementia. Many people know something just isn’t quite right but don’t have the cognitive ability and insight to be able to understand their condition.
  4. These diseases that causes dementia….they also cause death. The general public has not yet figured out that dementia is progressive and fatal. And it doesn’t only kill old people. People die from dementia in their 40s and 50s.
  5. Most people with dementia live in the community–sometimes alone, sometimes with their spouses, sometimes with their families. We tend to think most people with dementia live in nursing homes, but they tend to move to nursing homes only at the end of a marathon disease process.
  6. Having dementia is hard work. The dementia brain has to work incredibly hard to to process information and complete what we consider to be routine tasks. Sometimes we think people with dementia just aren’t trying…or that they’ve given up. Nothing could be further from the truth.
  7. When someone with dementia is aggressive or cruel, you can make the assumption this behavior is a result of fear. It is terrifying to live in a world that doesn’t make sense.
  8. Urinary tract infections are common among those with dementia. If you notice dramatic behavioral changes overnight, check the urine. It is not unusual for someone with dementia to die from a series of events that begins with a urinary tract infection.
  9. Drugs cannot stop or slow the progress of dementia. We do have medications that may help with the symptoms, but they do not change the underlying disease process.
  10. Yes, it’s okay if you’re not completely honest with people who have dementia. We call this therapeutic fibbing, and seriously–IT’S FINE! When Grandma asks where Grandpa (who has been deceased for decades) is, it is okay to say that he’s work, Wal-Mart, or bowling with the guys–wherever he liked to spend his time while he was alive.

If you are one of my regular readers, you are likely pretty disappointed by this post. I mean, you know all this stuff. You probably know it better than I do.

Here is my challenge for you….whether you are living with dementia, a family member or friend of someone living with dementia, or a professional who works in the field.

Talk about dementia. Talk about it without embarrassment or shame. If it makes other people uncomfortable, keep talking. The only way we destroy the stigma that still exists is to push right through it.

Part of my job is to educate people about dementia–but people who are impacted by dementia are much better educators than I am. The conversations you have in your daily life with friends, acquaintances, and coworkers can be more impactful than any formal presentation I am invited to do. Many of you aren’t ready to give a speech to a hundred people, but explaining to a waiter why it’s important to seat your mom with Alzheimer’s in a quieter area of the restaurant—that’s education. Explaining to a hairstylist that Grandma is sometimes confused by mirrors, and it’s best to position her so she can’t see herself in the mirror–that’s education. And that’s what we need.

To my friends living with dementia….the next time someone says, “How are you today?”, remember that you don’t have to say, “Fine.” You are allowed to say, “I’ve had a rough few days.” And you are allowed to explain why. If it’s an awkward conversation, that’s okay. Embrace that awkwardness. Don’t be afraid that your health issues will make someone uncomfortable. Keep talking.

To my friends who are care partners…the next time someone says “How are you today?”, remember that you don’t have to say, “I’m doing okay” if you’re not. You are allowed to tell them that caring for someone with dementia is challenging. You are allowed to tell them that you haven’t slept much lately. They might be taken aback–because no one expects a truthful answer to “How are you today?”–but throw it out there anyway.

Do I promise you are going to get helpful responses? Nope. Do I assure you that your friends and coworkers will impress you with their caring and thoughtful reactions? Not at all. I challenge you to keep talking anyway. It’s only by making dementia a topic of conversation that we put ourselves in a position to educate the general public.

And I need your help with that.

 

 

 

 

11 thoughts on “Ten Things in Dementialand and Why We Should Keep Talking Even if Things Get Weird

  1. What a powerful post! Thanks Elaine. My knowledge of dementia has expanded 100 fold (maybe more) ever since my husband was afflicted. I’ve been on a journey ever since to educate myself, and anyone else who would listen to me. It is always surprising to me how little the average person knows about the disease processes that cause dementia. The stereotype of “being forgetful” is rampant.

    The behavior and personality changes I think are one of the toughest for folks to understand. Prior to my husband’s nursing home admission, I used my “companion cards”. I would discreetly hand one over if the situation turned difficult. My husband is relatively young, so it was hard for folks to understand why his behavior was so “odd”. The companion cards served us well when we were in public and things were not going well. (Companion cards say something like “My husband has dementia. He may be confused, answer slowly, or he may upset easily. Thank you for your patience and understanding.”)

    The cards were not exactly the best way to educate others, but it was a start. Hopefully it left the person wanting to find out more about dementia.

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  2. Thank you for this great list and for all of your work to educate the public! Another thing I always share with people is a mantra I learned in one of my online support groups: “If you’ve met one person with dementia you’ve met one person with dementia.” No two dementia patients are exactly the same! It’s mind blowing to me how different my mother is—in almost every way—than every other Alzheimer’s patient I’ve met or read about. When she was first diagnosed seven years ago the neurologist guessed a “variant” of FTD or a “variant” of Alzheimer’s because her presentation was so unusual. Early this year a PET scan confirmed the amyloid plaque throughout her brain, but even in late stage six she often doesn’t look like she has dementia (you can see for yourself if you look for #makingmomentswithmom on Instagram). I find it so fascinating how her past strengths, skills, personality and education all have played into how her brain continues to function with the disease.

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