What is the hippocampus? And why should we care?

My Dad was dating the woman he would marry when the Lancet published research in 1985 about how "the decline of all higher cognitive functions in senile dementia of the Alzheimer type is attributable to histopathological changes in the hippocampal formation."

Twenty-three years later, the year his wife got him settled into Silverado Senior Living, research still focused on the hippocampus, deep in the brain. It seems a larger hippocampus may protect people from the effects of Alzheimer's disease-related brain changes, "an exciting area of research," according to Professor Clive Ballard, director of research for the Alzheimer's Society in London.

It's not that any of this knowledge or experimentation could help my Dad now, or even back in 1985, that I find myself wondering about this structure, this region, this whatever-it-is piece of the brain. It's the purple area in this drawing provided by Dr. Jim Phelps, an Oregon psychiatrist. This is a slice image, looking deep in the temporal lobe, which is above and infront of the ear on either side of the head.

He explains that the hippocampus--part of the innermost fold of the temporal lobe--is instrumental in helping us store memories. And, he gives three reasons why we should care about it:

1. This part of the brain appears to be absolutely necessary for making new memories. Alzheimer's disease affects the hippocampus first and severely, which is why memory (or the ability to make new ones) is usually the first thing to start to falter in Alzheimer's.

2. The hippocampus appears to shrink in severe mental illnesses, including severe depression and schizophrenia.

3. Estrogen has a direct effect on the hippocampus. Research on the role of estrogen in preventing Alzheimer's is underway.

So this is what we know now. We can only imagine what we'll know another 23 years from now.

ScienceDaily report from 2006 on the size of the hippocampus as it relates to Alzheimer's disease

He reminds me of my Dad

I see my Dad in my memories now. He's so far gone, mentally, and so far away, physically, that memories are pretty much all that is left. Then one day, I came across Bruce Bane's blog. And, somehow, this stranger's words make me feel closer to my Dad.

Bruce Bane writes the "Living with Dementia" blog. He has the same diagnosis as my father: Frontotemporal lobe Dementia. He is a writer, a poet.

The first post is from Jan. 19, 2010. It's titled "After Church:"

Too many faces
Too many voices
Like a thundering waterfall
Falling on me
And I can’t remember how to swim

This must be how my Dad felt, when we took him to restaurants, amusement parks, anywhere lots of people were gathered.

Bruce writes about the challenge of just thinking, and I imagine my father could identify:

I start to remember something
But it retreats into the distance
Around a corner, out of reach, lost in the mist

He writes about seeing himself in the mirror, something most certainly my father did and, likely, experienced similarly:

The man in the mirror must be me
But there’s something unfamiliar about him
Something I can’t describe
I recognize him, I know him, but only in part
And then I understand
I know him only in part because that’s how I know myself
I am growing more and more unfamiliar with myself

My father's sense of humor would appreciate Bruce's observation of a "positive" about dementia--that of being able to see the same movie twice, three times, even four, and each time experiencing it like it was the first time.

It makes me sad to think about my Dad's situation, to try to understand what he's going through. (I used to say "what he's suffering," but a friend convinced me how that word may not be precise.) Because he's going through this, I feel it my responsibility to try to understand. Bruce helps me do that, even if he chokes me up at the same time.

"I know what I want to say, but can’t seem to get it out," Bruce writes, and I think how awful that must be.

"Gradually it feels like I’m becoming less of who I am," he writes, and I cringe, thinking how apt a description.

Bruce's blog is like messages from my Dad. They are heart-warming and at once heart-breaking. "There will come a day when I will wake up without wondering, without being tempted by feelings," Bruce writes, "the day when dementia is no longer just a part of me, but all of me.”

Read Bruce Bane's blog for yourself.

Memory, thinking skills deteriorate long before dementia diagnosis, study shows

Memory and thinking skills seem to deteriorate rapidly among people who go on to be diagnosed with Alzheimer's disease--compared to those who are aging normally--says a study in the journal Neurology.

Researchers from Rush University Medical Center in Chicago followed 1,168 older adults, all of whom, at the beginning of the study, did not have dementia. After a mean of five to six years, participants had a detailed clinical evaluation, and 614 were found to have no cognitive impairment, 395 had mild cognitive impairment, and 149 had Alzheimer’s disease. Participants then completed brief cognitive testing at 3-year intervals. Compared with the "no cognitive impairment" group, the annual rate of cognitive decline was increased more than twofold in those with mild cognitive impairment--and more than fourfold in those with Alzheimer’s disease. The results did not vary by race, sex, or age.

"These results show that we need to pay attention to this time before Alzheimer's disease is diagnosed, when people are just starting to have problems forgetting things," lead author Robert S. Wilson, of Rush University Medical Center in Chicago, said in a news release from the American Academy of Neurology.

What the study may be telling us is that by the time of an actual diagnosis, dementia may have progressed into final stages, the disease present (though in a far less debilitating form) for many years.

Read the U.S. News & World Report story.

Read the news release from Rush University Medical Center.

The full text in Neurology (incurs a cost of $20)

Contemplations over the loss of a pet

One of our guinea pigs died today. I raced home from work but missed her last breath by a few minutes. She was about 6 1/2, which is a little longer than the expected lifespan of a guinea pig.

I remember when she joined our family.

My Dad was visiting over the summer of 2004 and while he was here, he got my son (7 at the time) his birthday gift from Grandma and Grandpa: two guinea pigs.

My Dad had grown up in the country, so he was comfortable with rodents. He told many stories about his mother warily opening dresser drawers, fearful of what rodent (or other creature) he might have stashed in there for safekeeping. He set up the cage and bedding with my son and helped him get acquainted with the new little guinea pigs who would become part of our family.

Eventually Allison provided my son with what he describes as the best day of his life. He came home from school to find three baby guinea pigs in her cage. (We had noticed she had been getting rather fat.)

Lately we noticed she had been getting rather frail. My son came home from school today to find her unable to stand. By telephone, he described her limpness, and her legs that were shaking. "Hold her," I coached him. "Let her feel you touching her. Pet her, and love on her."

I arrived home to find him in tears. She was gone. And he felt awful about how she had gone: right there, with him holding her.

I thought about how lucky she was. "Actually," I told my son, "of all the ways there are to die, the way she went is probably the best."

And then I wondered if--prayed that--his Grandpa would be so lucky.

Examining the football-dementia connection

A study that came out in fall 2009 was important because it showed that NFL players suffer dementia at rates vastly higher than those of the general population--including 19 times the normal rate for men ages 30 to 49. It was the first "evidence" showing what the NFL had long denied: that of cognitive decline among its players.

The study was from the University of Michigan Institute for Social Research. Researchers surveyed 1,063 retired players and found that incidence of heart disease was lower, but incidence of arthritis was higher. Noting study limitations, they also found a significantly higher incidence of dementia.

Here's the New York Times story about the study, and a followup story criticizing the study.

Here's a copy of the study.

"We conducted some interviews with a 'proxy reporter,' generally the wife, of some players who are unable to answer for themselves. We did not administer cognitive tests and did not conduct neurological examinations. The only information we collected about dementia was to ask the respondent (or proxy) if they had ever been diagnosed with dementia, Alzheimer’s disease, or other memory-related disease. Diseases of memory are rare, but NFL retirees report higher rates," wrote researchers David R. Weir, James S. Jackson and Amanda Sonnega. The incidence of dementia among American men over age 50 is 1.2 percent. Among retired NFL players over age 50, it was 6.1 percent.

The study raises questions about the connection between concussion and dementia.

When I heard about the NFL study, I thought of my Dad. The place where he lives now--Silverado Senior Living--is the place the NFL has contracted with to provide care to former players and their families who suffer Alzheimer's, Parkinson's or other forms of memory impairment.

What would Dad say about this dementia blog?

Would Dad mind that I mention him, that I post his picture on this DementiAwareness blog? That question nags at me.

My father was always very proud of my work as a journalist. And I enjoyed, when he came to visit, that he could open the daily newspaper and read articles written by his daughter. But those stories weren't about me, or him. They did not publicize our family.

This blog sort of does.

It's too late to ask my Dad how he feels about, well, pretty much anything. We can't trust much of what he says (he often says he's hungry just after finishing a meal) so I have to imagine what his response would be, based on the 44 years I've known him. Would he be proud of my work? Or embarassed of the content and its occasional reference to him? Would he feel shame?

My father never sought publicity, at least not for himself. But he was willing to promote certain causes. When I was little, he posed for a magazine cover during the energy crisis, bundled in a blanket for a story about energy conservation.

He was a lover of science, too, and when he watched TV, it was often a documentary or educational program. I remember watching Mutual of Omaha's Wild Kingdom with Marlin Perkins together every week growing up.

So I'm thinking that if he were in his right mind, my Dad would relish learning about frontotemporal lobe dementia. I think he could appreciate the mystery of the disease, if he weren't suffering from it so. I even think he would forgive me for sometimes referring to him in the past tense, even though he is still alive and, at least physically, well.

Hallucinations? Or deteriorating vision?

What may seem like hallucinations in people with dementia may, in fact, be symptoms of deteriorating vision.

Howard Solomons, PhD, writes in this "Vision and Dementia" paper from 2005 about the way our eyes deteriorate as we age. People with Alzheimer's or dementia face those issues, plus they may face disturbances that originate in their brains, rather than their eyes. "That is, their problem can be having difficulty perceiving what they see rather than how sharply they see it," Solomons describes. "Problems most commonly occur in four areas – motion, depth, colour and contrast. Visual hallucinations have been reported to increase with loss of visual acuity in some Alzheimer’s patients."

It's something of which to be aware.

Teepa Snow, from the video above, trains caregivers and family members of dementia patients. Check out her Web site.

Simple new test can detect early dementia

Sixty percent of Alzheimer's cases do not get diagnosed in primary care medical offices, which means missed opportunities to treat patients in the early stages of dementia.

A new Computerized Self Test, created by researchers from the University of Tennessee, could potentially bring a simple and inexpensive testing tool to family doctors and internists.

CST is a fitness test for the brain. It's a brief, interactive online test that assesses various impairments in the basic thinking functions that are affected by cognitive impairments and dementias including Alzheimer's. Researchers say it provides an objective way to determine what diseases may affect the patient, so providers can begin treatments that could blunt the effects of the disease.

“Early detection is at the forefront of the clinical effort in Alzheimer’s research, and application of instruments like CST in the primary care setting is of extreme importance,” Rex Cannon, an assistant professor in psychology, told Tennessee Today.

His work will be published in the April 2010 issue of the Journal of Alzheimer's Disease.

The study, "The Computerized Self-Test--an Interactive, Internet Accessible Cognitive Screening Test for Dementia"

The story from Tennessee Today, from the University of Tennessee, Knoxville.

Driving with early Alzheimer's even riskier than first believed

Even with early dementia, research is now showing there's no safe time behind the wheel of a car.

"Alzheimer's disease affects memory and navigational skills. These impairments may lead to getting lost, which is a life-threatening problem. Family members and friends of individuals with dementia need to recognize these impairments as serious threats to safety for anyone who has dementia," Linda Hunt told HealthDay. She is an associate professor in the School of Occupational Therapy at Pacific University, Oregon, and author of a study published in the March-April issue of American Journal of Occupational Health.

The study focused on newspaper accounts of 207 Alzheimer's patients who went missing while driving. Thirty-two died, and 35 were found injured, according to the HealthDay article. Seventy had not been located at the time the data was analyzed. "Some had driven for almost two days and covered more than 1,700 miles while lost. Most had set off on routine trips to the post office, store or a relative's house," the article says.

Mom tried hiding the keys from Dad once it was clear he wasn't right. But of course one day he found them and took off in his car. She called me, fearful of what could happen. We weren't sure what to do. Would the police find him if we gave them the license plate number? Eventually Dad called saying he was at a gas station. Mom begged him to let her come get him, but he would have none of it. He said he would drive home. So again we fretted, waiting -- and were relieved beyond belief when he drove into his parking spot in the garage for what would be the last time.

Shortly after that, Dad's car went into the shop for repairs. It was gone for quite a long time. Long enough for him to get used to the idea that he could no longer drive.

Some of this advice from the National Safety Commission would not really apply to a person facing Alzheimer's or dementia, but some of it is useful if you're faced with taking the keys away from someone you love. This article -- "How to Determine Your Elderly Parent's Driving Ability" -- by Leonard Hansen at AgingCare.com may also be of help.

Putting a name on the feelings of loss before death

A therapist / friend put a name on what I've been going through for almost two years, since it became clear that something was wrong with my Dad. She called it "anticipatory grief."

It's a feeling of loss before a death occurs.

Harriet Hodgson explains for the American Hospice Foundation how anticipatory grief "has been described as a 'normal process,' but life is far from normal if you're going through it. ... You may have bouts of crying, for example, a symptom that upsets you and those around you. You may hold back your tears because you have to be strong for your loved one. All through the day you have a choked feeling in your throat. Holding back tears takes lots of energy and, before long, you're exhausted."

Symptoms include: denial, mood swings, forgetfulness, disorganized and confused behavior, anger, depression, feeling disconnected and alone, anxiety and dread, weight loss or gain, sleep problems, nervous behavior and general fatigue.

Hodgson cites author Edward Myers' description of a slow decline as being like that of a glacier "massive and unstoppable, grinding you down," (as compared with a sudden death hitting more like an explosion.)

Beth Erickson writes on the Strength for Caring caregiver Web site about the drawback to witnessing a loved one's slow demise. "As the loved one’s condition worsens, you may grieve with each downturn. You may experience feeling a sense of helplessness as your loved one fights for life. You may feel as if you are living with a pit in your stomach that won’t go away as you await death’s arrival."

I guess it's like anything else. There's value in learning what we can about the glacier, even if it is unstoppable. Knowing why we're ground down, knowing why we feel that pit in our stomachs can help us cope. Just knowing that what we're going through has a name -- anticipatory grieving -- reminds us we're not alone.

What is FTD?

We had never heard of FTD before (other than the flower delivery service) when a doctor gave our family the diagnosis for our patriarch of frontotemporal lobe dementia. He said it was like Alzheimer's disease in some respects. But it was its own disease.

FTD actually refers to a group of rare neurological disorders that affect the frontal and temporal lobes of the brain, which control personality and social behavior, reasoning, movement, language, and some aspects of memory.

It often strikes people earlier than does Alzheimer's, developing as early as 35, (but most are diagnosed in their 50s and 60s.)

Doctors say that FTD makes up about 3 percent of all dementia cases.

The FTD Support Forum lists some of the diseases that get classified as FTD include Pick's Disease, FEDP-17, Supranuclear Palsy, Primary Progressive Aphasia and Corticobasal Degeneration.

It's not Alzheimer's

Frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain, the areas generally associated with personality, behavior and language, according to the Mayo Clinic definition page.

Here's what else it says:

In frontotemporal dementia, portions of the frontal and temporal lobes atrophy, or shrink. Signs and symptoms vary, depending upon the portion of the brain affected.

Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally blunted, while others lose the ability to use and understand language.

Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer's disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer's disease, typically between the ages of 40 and 70.

Introducing Amber Smith, medical journalist interested in dementia and Alzheimer's

This is my Dad, who--like so many others--hovers between the here and the hereafter in a body gripped with dementia. It's a sad situation, one with which many of you can identify.

For 22 years, I've covered health and medicine in some capacity for The Post-Standard in Syracuse, NY. I'm a devoted and passionate journalist who likes learning, enjoys writing and feels grateful to play a role in helping to make sense of our often-confusing healthcare system.

My background includes training (and volunteering) as a paramedic until parenthood provided other things for me to do with my time. I also spent three years to obtain a master's degree in Health Services Management and Policy. For a while, I taught at Syracuse University's S.I. Newhouse School of Public Communications.

I'll blog here regularly, with news and information of interest to people affected by Frontotemporal Dementia (FTD) and Alzheimer's disease. Check back often. You can also follow me on Twitter, where I'll "tweet" each post.

Meanwhile, let me know if you've got a question related to dementia. I don't pretend to know everything, but I am pretty good at digging to find answers.

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