Dementia Paranoia and the Dementia Risk Score

When it was clear my father had dementia, I started to wonder about my own memory.  I've had trouble finding words in the last few years.  Just this week, I couldn't retrieve the word "charger" from my brain's database for two days.  The fact that I couldn't remember the word for a large decorative plate wasn't life-threatening, but it bothered me.  I'm starting to have problems navigating familiar streets, and appointments and must-do items seem to fall off my radar screen altogether.  Last night I left a carton of ice cream in the microwave instead of in the freezer.

I blame my memory problems on several factors:  lack of sleep, the stress of Dad's illness and death piled on top of other family crises, and trying to keep up with more people than any human was meant to know.

But I worry that these are the first signs of my cognitive decline.  Maybe next month I'll have trouble balancing my checkbook, and in December won't be able to match names to faces.  By spring, I could be in a nursing home.  Dementia paranoia is setting in.

Dementia paranoia changes how I see things.  Take the dinner we gave for a family member's 85th birthday the other night - a nice event by any standard.  But during the dinner, my fiance John triggered my problem with the word "charger" by calling the decorative plate a "racer."  I figured this was a sign he's also on the track to cognitive dysfunction.  While John was mumbling about "racers," the normally sharp birthday girl was repeating a story she had told us five minutes before.  I wondered if she's developing serious memory problems.  Meanwhile, our neighbors stopped by with their aging dachshund.  The dog's routine is to hunker down by our front door and bark until we bring her a special organic dog biscuit.  That night she sat by the front door, but forgot to bark.  In fact, she didn't seem to remember the cookies at all.  Seeing dementia everywhere, I diagnosed canine cognitive impairment.

So when I found an abstract of an article in Lancet Neurology about a risk score for the prediction of dementia in 20 years among middle aged people, I immediately took the test.  After weighing the factors that make up the score - blood pressure and cholesterol levels, body mass index, education level, exercise habits, gender and age - I was pleased to find I scored 4 on a scale of 15.  According to the article, a score of 4 means I have less than a 1% chance of developing dementia in the next two decades.

Then I went back and calculated my father's score at my age.  He would have scored a 5, one point higher than me, due to the fact he was male.  A score of 5 still predicts a less than 1% chance of developing dementia in the next twenty years.  But in fact, he was showing the first signs of dementia 18 years later.

Developed by the Karolinska Institute in Sweden, the scoring system is based on a study of 1409 Finns, who were first examined in middle age, then re-examined for signs of dementia twenty years later.  The seven components that make up the dementia risk score were associated with significantly higher rates of dementia in the group of Finns.  The fact that four out of the seven components are related to heart health seems to confirm results of other studies showing that cardiovascular factors have a big influence on your chances of developing Alzheimer's disease.

This risk score may be a good first step towards screening people for dementia risk, but I'm not relying on it.  Like most things about dementia and Alzheimer's research, the relationship between heart health and dementia is fuzzy.  For example, high cholesterol adds two points to your risk score, but recent research shows that cholesterol levels tend to decline a few years before the onset of Alzheimer's disease.

Despite my respectable risk score, my dementia paranoia continues.  I've started to rely more on electronic tools to supplement my brain.  Directions from MapQuest help me navigate, and my PDA reminds me about appointments and to-do items.  But there are some things technology can't fix:  did I tell you I left an ice cream carton in the microwave?

Comments

[Gail Rae Hudson]

Great post, Mona! Weirdly funny! I hope you aren't offended that I chuckled about canine cognitive dysfunction and was grinning when I reached the end of the post.
Perhaps someone will invent a microwave with a built-in transporter that automatically sizes up whether something has sat in the microwave a minute or two without having been nuked, determine what the item is, and transport it to its proper place.
Then, on its heels, someone else will invent a chip one can imbed in one's brain that functions as a graphic dictionary...after 15 seconds of wordlessness surrounding a mental picture, the chip will spring into immediate action, find words for the graphic, transport them to the languaging part of the brain and trigger the connection between thought and speech.
Maybe our generation's fears about cognitive confusion, from witnessing and being unusually aware of our parents and grandparents experiencing this, are the subconscious directive that has heightened our interest in Artificial Intelligence.

[Deb Peterson]

Mona--I am SO afraid to take that test! Another complication is that caregivers (such as myself) are usually so stressed that they don't see their own doctors as often as they should. That reminds me...

My mother's doctor mentioned the cardiovascular/AD link when we saw him last week. And I am such an ice cream lover--I've just started getting Edy's "light" ice cream, which is worth the price, and trying to limit my lunchtime visits to the new gelato place on campus. Well, I understand gelato has less milkfat than ice cream.

[Karma]

You know that dementia paranoia is really common in caretakers of people with AD. We all get it. It is because the disease is so horrific and terrifing, and there's clearly not decent care facilities. I think that my dementia paranoia would lessen if euthenasia was legal for people with late stages of dementia, and I didn't have to fear getting to be like my grandmother.

[Paula]

Mona - This is SO familiar to me: I have big-time dementia paranoia, as does my partner, whose mother had AD. It's the temporary loss (misplacing?) of words that upsets the writer in me most. Wonderfully written post.

[your mom]

Well, I scored a 5, but did not count cholesterol as I haven't a clue what it is. And I probably should add a point for lack of exercise. But I don't think I'm sedentary. I will ride my charger around the plantation more.

[michaelm]

Mona-
I have to admit that I was smiling while reading this post. It was tempered, however, with the knowledge I have of the disease. I have days when I can't wrap my mind around a particular word or name but attribute it to the stresses of my life. I pray to God that's what it is. I've told my wife that if she ever sees me really going down that road to take me to Mt. Washington, strap on some skis, open a bottle of Johnny Walker Blue and send me shusshing down Tuckerman's Ravine.
That I'm an adopted child allows me to leave heredity angle out of the dementia equation. I think...
Great post.

~Michael

[malinda]

I am a caretaker for my 64 yr old dad. he was formally diagnosed last week. I didn't realize that other people have AD paranoia TOO!. I have been paranoid for a few months. I once said....i don't know who has the dementia...my dad or me! thank you for the good laugh (canine cognitive impairment). I needed it as i am trying to fill out the forms for social security disability.