This isn’t just about old people

Q: What is the biggest risk factor for dementia?

A: Age.

The chance of a person having dementia increases as they age.

But it is NOT just old people who have dementia.

It’s people in their 50’s and early 60’s. I even know a few who were diagnosed in their 40’s, and one who was diagnosed at age 38.

Are there specific challenges to having dementia when you are younger?

Yep.

Recently a young woman came through the dementia simulation. She was the daughter of a woman who had dementia in her early 50’s. She showed me a recent picture of her mom.

I wouldn’t say her mom looked like a woman in her early 50’s. In fact, she looked younger. Maybe 45-ish. Her blonde hair was cut into an adorable shoulder-length bob, and she was wearing hip glasses. In the photo, she was out at restaurant with family and looked to be enjoying a colorful mixed drink.

“This is the problem,” her daughter told me. “She doesn’t look like she has dementia.”

Which brings me to this question….what does dementia look like?

What this woman means, of course, is that people have a picture of dementia in their head. And when people with dementia don’t fit this picture, they struggle to accept that a person could actually have dementia.

They think family members are exaggerating the person’s symptoms. They think maybe the person is just going through a rough time or intentionally being difficult. The situation is so incongruent with what they think dementia is that they create an alternative explanation.

Health care providers do this, too. It’s hard to get a correct diagnosis when you’re younger. The misdiagnoses can be numerous–depression, anxiety, restless leg syndrome, ALS, attention-deficit disorder, obsessive-compulsive disorder, menopause/hormonal imbalance, medication side effects…shall I go on?

My favorite (yeah, that’s sarcasm) is the “mid-life crisis” diagnosis. A woman I know who sought out help for what I would consider classic dementia symptoms was told by her doctor that she was going through a “mid-life crisis.” When symptoms got worse, she went back and was told she probably needed a counselor and some hormone therapy. Oh, and yoga. Things would probably get better if she did some yoga.

A man once told me that his wife, who was 50 years old with younger-onset Alzheimer’s, was often assumed to be drunk, high, or just plain weird. If he mentioned she had dementia, people seemed doubtful. Some would even tell him that he shouldn’t jump to conclusions or be so negative.

He got so frustrated that he hesitated to take her out in the community. At one point, she confronted him about being embarrassed of her.

We need to flip the script on what people think dementia is….we need people to know this isn’t just about old people.

We need people to understand that there is no specific way that dementia looks.

3 thoughts on “This isn’t just about old people

  1. I have to admit to telling my husband that I need to clean him up a bit so he doesn’t look like a homeless person. He’s quit shaving completely and I have to cut his hair because he refuses to go to the beauty shop for a haircut. His posture is stooped and he walks very slowly, especially in the evenings. He has trouble rising from a seated position, especially in booths in restaurants. He looks a bit unkempt and I tell him that people will think I don’t take good care of him if he isn’t better at keeping his body neat. He at least showers every day, so there’s that as a plus. Thanks for this…

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  2. Thank you so much, Elaine. I identify with each of these stories so much. My mom was diagnosed in her early sixties (but looked even younger), so I was constantly getting bizarre looks from people who couldn’t understand what was wrong with her. Physically, she was very strong and looked completely fine. On our final airline experience with her many years ago, the terminal didn’t have a TSA-pre line, so we had to go through regular security. The agent completely ignored me when I told him she wouldn’t be able to follow his directions, and my mom got taken away with female agents to be thoroughly searched in a private room because of her non-compliance. As you can probably imagine, I nearly got arrested because I started yelling at all of the agents trying to stop them. It was horrifying.

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  3. Thank you for writing this! My husband was diagnosed at 58. Devastating disease, thanks for all you do to help people with Alzheimer’s & their families.
    Cindy Gooch

    Sent from my iPhone

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