The Tangled Neuron

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?

Alzheimer's Posts at the 100th Edition of Grand Rounds

The 100th edition of Grand Rounds, another blog carnival, is up at The Examining Room of Dr. Charles.  Along with my post about hormones and Alzheimer's, you can read 56 (!) other posts on topics ranging from emergency room imaging to the health hazards of air pollution in Borneo.  Alzheimer's is a hot topic, with contributions from The Yellow Wallpaper, The Mom & Me Journals, and a blog called All Blogged Up:  A Moof's Tale.

The Patient-Consumer Parade

Lately I've been thinking how difficult it is for dementia patients, caregivers and concerned laypersons to participate in dementia research or even individual treatment decisions.  When Dad was alive, this left me frustrated and uncertain, and I'm sure it was worse for him.

Part of the problem is the nature of dementia, and how complex and confusing the research is.  But there's another reason it's difficult to participate:  they way most healthcare is "dispensed."  It often seems to me that medical care is done "to you" instead of "for you."  I don't blame doctors or researchers - it's really a system-wide problem.  So I was interested to find the Patient-Consumer Parade, a blog carnival focused on the question "Why can't patients be treated with the same respect consumers elsewhere get every day?"

One of my posts is part of Patient-Consumer Parade #6 hosted at Six Until Me.  The theme of Parade #6 is how patient-consumerism is woven into our daily lives.  After reading through the posts by caregivers, diabetics, med students, migraine sufferers and others, I see that other people besides me are rethinking the patient's role in the healthcare universe. 

Memory Lane Webring

Michael Murphy, author of Smoke and Mirrors, has set up the Memory Lane Webring as a resource for dementia patients, caregivers and concerned family members.  I'm honored that The Tangled Neuron is listed on his page of Alzheimer's-related blogs. 

Memory Lane Webring Logo

The Memory Lane Webring blogs are a great source of information and comfort for the millions of caregivers of Alzheimer's and dementia patients.  Thanks Michael - I look forward to watching your Webring grow.

Beta Amyloid in Alzheimer's and CAA: Dr. Jekyll or Mr. Hyde?

Two weeks ago, I met with Dr. Craig Atwood at the University of Wisconsin to talk about the theory that mid-life hormonal changes trigger a chain of events leading to Alzheimer's and similar neurodegenerative diseases.  It turns out this isn't the only area in Alzheimer's research in which his thinking diverges from the mainstream.

During our discussion on reproductive hormones, I gave him Dad's autopsy report to read.

"Hmmm, severe CAA [cerebral amyloid angiopathy].  Well, I would suggest that the amyloid deposits were your dad's brain's attempt to protect itself by sealing off ruptures to prevent hemorrhage.  I don't think the amyloid caused his problems."  He opened a file cabinet and pulled out a copy of a review he wrote on this topic.  Published in Brain Research Reviews in 2003, the article lays out the logic behind the theory that amyloid [the protein found in Alzheimer's plaques and on the brain's blood vessel walls in CAA patients] could be protective, not destructive as most researchers believe.  The logic goes something like this:

• Normally, when damaged parts of the body start bleeding, the blood coagulates, or clots, and this seals off any "leakage," but can prevent blood flow through damaged vessels to neighboring tissue...
• If this happened to the blood vessel walls deep within the brain, the resulting clot would block the supply of glucose and oxygen carried by the blood to that part of the brain, depriving neurons of essential nutrients and leading to dysfunction...
• The brain has developed a different mechanism to stop bleeding:  amyloid aggregates around the blood vessel wall, sealing the lesion and preventing blood from clotting.  This allows continuous blood flow through the damaged vessel, in the way that repairing a corroded or cracked plumbing pipe would allow water to flow through the pipe...
• Amyloid has properties that make it a good sealant...
• The fact that amyloid deposits have been observed near injury sites in the brains of people who have had head trauma [see an early report, for example] can be seen as support for this theory...
• Therefore, amyloid could be a protective molecule that is formed when there is damage to the brain caused by injury, stroke, Alzheimer's or age-related changes to blood vessel walls.

Dr. Atwood is not alone in questioning whether beta amyloid is really the evil Mr. Hyde of Alzheimer's.  The Wall Street Journal summarized the larger controversy in articles published on April 9, 2004 and April 16, 2004.  But the idea that amyloid could be a vascular sealant is in direct opposition to the widely held belief that amyloid is toxic and causes Alzheimer's and brain hemorrhages like Dad's.

The theory that amyloid is a "good" protein is important in the context of researchers' and pharmaceutical companies' efforts to develop vaccines to clear amyloid from the brain.  The first clinical trial of such a vaccine in humans was halted in 2002 after some of the participants developed inflammation of the brain and spinal cord.  Despite the safety issues, the vaccine appeared to have slowed memory loss in twenty of the thirty patients followed after the trial was stopped.  Trials of vaccination against amyloid in mice have had similar results:  University of South Florida scientists report that vaccination clears amyloid plaque deposits and improves memory in mice, but increases amyloid on blood vessel walls and causes hemorrhages.

Researchers are developing new, hopefully safer, ways to vaccinate against amyloid, but Dr. Atwood remains unconvinced that these efforts will succeed.  "If you believe that amyloid is protective, then it's no surprise, that mice and humans develop problems when they are immunized," he says.

Of course, Dr. Jekyll and Mr. Hyde were one and the same.  The evil Mr. Hyde could only be suppressed if Dr. Jekyll continued to take the potion he'd developed in his lab.  Could the beta amyloid in Dad's brain have been somehow both helpful and harmful?  Maybe someday we'll have the magic potion we need to harness its good properties while suppressing the bad.

Birthday Presents

Today would have been Dad's 74th birthday.  If he were still alive, he would have been opening the usual presents:  sheet music for the piano, gear for his sailboat, plants for the yard.  He loved the mixed nuts my brother always sent, along with the steady stream of Florida T-shirts from me and my sister.  But what I remember best are all the joke gifts we gave him:  the wigs, weird hats and other tasteless items he had so much fun with.  My mother told me this morning she still keeps his fake "dog poop" in a drawer.

Dad models a surfer dude hat and wig on his 69th birthday

Dad also loved animals.  Several times a year, someone dumps an unwanted dog in my parents' neighborhood on the Pamlico River.  My father doted on these dogs, taking them for medical care and visiting them in the animal shelter, even housing them temporarily.  Two years ago, he fell in love with a young, energetic black lab-ish "stray" who followed my mother home.  By the end of the day, "River" was ensconced in the garage.  After weeks of working to find a new home for the dog, Dad took him to an animal adoption fair.  When I called to see how it went, he was thrilled that a woman with a large, fenced-in yard had taken River home.  "I saw her the other day," Mom said this morning.  "She just loves that dog."

So this year, instead of sheet music, mixed nuts or a wig, we'll buy Dad a brick for the new animal shelter at the Humane Society of Beaufort County, North Carolina.  Happy Birthday, Dad.