Ninety medications in development to treat Alzheimer’s, dementias

July 24, 2010

The Pharmaceutical Research and Manufacturers Association shares some encouraging news with its report on medicines to treat mental illnesses. Ninety drugs are in various phases of research to treat dementias, including one that is designed to remove beta amyloid protein from the brain and prevent or reverse progression of Alzheimer’s disease.

I count 11 drugs in what is called “Phase 3″ trials, the final step toward approval and licensing of a new drug.

So, progress is underway.

More studies showing exercise can help stave off dementia, Alzheimer’s

July 14, 2010

Encouraging research being shared at the International Conference on Alzheimer’s Disease in Honolulu this week shows that exercise may be a powerful antidote to cognitive decline in Alzheimer’s and other dementias.

Physical activity has long been related to cognitive decline, through several long-term epidemiological studies, but up until now, published research has not been consistent, and several large studies failed to show an association. Most of the studies followed participants for fewer than six years and/or lacked substantial follow-up. In fact, a panel convened by the National Institutes of Health recently reported that no proof exists for ways of preventing dementia.

Researchers have yearned for a long-term study of people within the age brackets at higher risk for developing Alzheimer’s, in order to show a true relationship between exercise and cognitive decline. The Framingham Study, a population-based study that has followed participants residing in the town of Framingham, Massachusetts since 1948 for cardiovascular risk factors, is one such study, and it is now also tracking cognitive performance.

In work presented in Honolulu, Dr. Zaldy Tan of Boston’s Brigham and Women’s Hospital and Harvard Medical School, and colleagues, estimated the levels of 24-hour physical activity of more than 1,200 elderly participants from the Framingham Study. They included 742 females, within five years of age 76 in 1986 and 1987, and followed them for the development of dementia. They divided the participants into five groups based on level of physical activity, from lowest (Q1) to highest (Q5).

Over two decades of follow-up, 242 of the women developed dementia, including 193 with Alzheimer’s. The researchers found that participants who performed moderate to heavy levels of physical activity had about a 40 percent lower risk of developing any type of dementia. Further, people who reported the lowest levels of physical activity were 45 percent more likely to develop any type of dementia compared to those who reported higher levels of activity.

“This is the first study to follow a large group of individuals for this long a period of time,” Tan says in a news release. “It suggests that lowering the risk for dementia may be one additional benefit of maintaining at least moderate physical activity, even into the eighth decade of life.”

Scientists study jellyfish for ways to preserve cognition in Alzheimer’s and other dementias

July 13, 2010

A biotech company in Madison, Wisconsin believes a protein from a jellyfish (with the scientific name, Aequorea victoria) can improve cognitive function in people with memory problems, Alzheimer’s disease or other dementias.

Quincy Bioscience representatives are at the annual Alzheimer’s Association International Conference on Alzheimer’s Disease this week in Honolulu, presenting interim data that demonstrates the jellyfish protein improved cognitive testing scores by 14 percent in 60 days compared to placebo in the randomized controlled “Madison Memory Study,” which enrolled adults who had a memory concern. The average age in the study cohort of 35 people was 61 years old.

Why the jellyfish?

Partly because of its simplicity. “If you strip down all of the higher functions of thought from the human brain, you really end up with a very simple nervous system…as simple as the jellyfish,” says the Quincy website. Scientists have been studying the design of the jellyfish to understand how it might protect brain cells. Jellyfish make use of apoaequorin to sequester extra calcium ions, which are thought to be protective against neurodegeneration.

In diseases such as Alzheimer’s and Parkinson’s,  calcium-binding proteins decrease and lead to brain cell death, or neurodegeneration. Scientists believe that by managing calcium levels in the cells, they can slow the aging process and preserve some quality of life.

Visiting Dad in the late stages of frontotemporal dementia

July 12, 2010

We were blessed with a few good hours, visiting Dad in Texas recently. Here he is — yes, that’s a smile — with two of his grandchildren. He did quite a bit of wandering. Once, he poured his juice into an envelope. Whether he knew who we were or not, he was glad to interact with us.

But, he seemed tired.

There is no single set of criteria to follow for the “stages” of dementia. It’s a disease that gets progressively worse. “Defeat Dementia” posts signs and symptoms into three stages. The LiveStrong website summarizes three stages from the University of California, San Francisco Medical Center. Dementia Care Central outlines seven stages. Heart Spring, also, uses seven stages.

No matter which list you consult, Dad has “severe cognitive decline.” He is clearly toward the end of the disease, the end of his time on this earth. Soon he’ll need help eating. He walks in a shuffle. He speaks, usually making no sense.

Once during our time with him, we mentioned Luther Clark, a dear family friend who died several years ago.  Dad made sense with his reply, that Luther was “in a better place.”

‘I’m Still Here’ tells us Alzheimer’s does not mean life ends

May 28, 2010

It’s the disease we dread the most, isn’t it? We fear how Alzheimer’s wreaks minds, steals memories and personalities. We don’t want to be condemned to wandering in a fog. We translate a diagnosis to mean “the end.”

But in fact, many people live 10 or 15 years with the disease. A diagnosis is just the beginning, and author John Zeisel argues that Alzheimer’s is not the end of the world. His book, “I’m Still Here” (Penguin, $24.95) explains how to connect with someone who has dementia. Music, art, facial expressions and touch are abilities that don’t diminish with time and can be the foundation for connection.

More than 5 million Americans are living with Alzheimer’s (which represents from 60 to 80 percent of all dementias), and those numbers are set to explode as the Baby Boomers begin celebrating their 65th birthdays next year. So, the practical advice Zeisel offers is assisting a growing number of caregivers.

Though it makes perfect sense, how many of us think to introduce ourselves when greeting a loved one with Alzheimer’s? This is done by sitting down next to the person, holding their hand, looking in their eye and saying, ‘Hi, Mom, I’m your daughter Miriam, and I love talking to you about Oakland, where you were born.’ This is in place of the “test” question, ‘do you know who I am?’ which may frustrate those we care about and will most certainly crush our spirits when we are reminded that, no, they don’t.

Zeisel, who has a background in sociology and architecture, explains in his book how to build memory cues into living environments. He gives advice on preparing for visits with someone who has lost the knack for conversation. And, he reminds us of the importance of telling people with Alzheimer’s that we love them.

“Alzheimer’s is not the end of the world”
article from The Guardian

18 months later: physically healthy — but my how that neuropsychological test was accurate

May 21, 2010

My Dad amiably answered the doctor’s questions, even though the answers he provided were wrong. When asked to extend his arms, or draw shapes on paper, my Dad complied.

On the sidelines of the exam room in this geriatric psychiatrist’s office in October 2008 at a medical center in downtown Dallas, I watched my Dad fail what I have since learned was a neuropsychological test. My Mom sat on my right. My then 10-year-old son sat on my left, and we all watched quietly. We encouraged husband/Dad/Grandpa with reassuring smiles and nods. But we all recognized he was not doing well.

My son stayed with his Grandpa in a waiting room while the doctor gave his assessment. It was most clearly frontotemporal dementia. He explained what that is. He mentioned some signs of Parkinson’s disease, too. He told us Dad would likely live from 18 months to 3 years.

Which kind of knocked the wind out of us.

Physically, my Dad is so healthy. He was then, and he remains so now, 18 months later.

It would be easy–indeed, it was tempting–to dismiss the psychiatrist and the oddball “test” my Dad had “failed.” But the doctor spoke with confidence about signs and symptoms we had not recognized previously. We still think back on things Dad said or did and wonder…was that the beginning of his decline? should that have signaled us that something was wrong with his brain? That gaze in his eyes? The appointments he showed up for a day early? The trouble he had hearing–or was it his comprehension that was off?

I asked the psychiatrist what would kill my Dad. He has this fatal disease, for which there is no treatment, but I wondered what would finally take my father down. Would his heart just stop? Would he just lapse into a coma?

The doctor explained that many people with FTD die after falls, or by choking on food, or by an out-of-control infection. They become incontinent. They forget how to swallow. It was both disconcerting and comforting to hear from a professional what lay ahead. My own subsequent research backed up every word.

So here we are, 18 months later. Dad very distinctly has that Parkison’s gait. On most days, he is unaware of his loved ones, and I doubt that any pictures or memory cards I have sent him make any sense to him anymore–or that he can find them. I bet he still has his sweet tooth, but maybe not, (since some dementias steal taste, too.)

He used to fight the caregivers who tried to undress him for showers; now several of the female residents are on his arm. When we visited him once at Silverado where he lives now, Dad emphatically pointed out baboons in the trees outside his window. Since he managed a wildlife amusement park for several years, this “delusion” made sense. Sometimes I wonder if he still sees them. Or if FTD has replaced those delusions with others. He’s also incontinent, a progression that adds $500 to the monthly bill.

And even though all of this was predicted by the doctor, even though we watched “Away From Her” and read Lisa Genova’s “Still Alice,” even though we prepared ourselves in the best ways possible…. sometimes I want to go back in time to that exam room and hear the doctor blame my Dad’s confusion on his hearing, or a brain tumor. Something that could be fixed. Or if not fixed, treated. Or if not treated, immediately fatal. Anything but this lengthy deterioration that seems to be playing out just as the doctor predicted.

Dementia destroys the father-daughter bond

May 11, 2010

“Do you have a boyfriend?” he asked me. He was about 84 years old and interested in a date.

Sitting before him with my young son on my lap, I gave him the bad news: “No, but I have a husband and two kids. And I am your daughter, Dad.”

My father’s confusion was the consequence of his battle with Alzheimer’s disease. One day he recognized me, the next, maybe not. Though my brain could process that, my heart could not. No matter how realistic I tried to be about my father’s decline and our awkward exchanges, I found it impossible to accept that he really didn’t know me.

Kathy Tyrer writes in the Los Angeles Times about realizing that the father-daughter connection she had with her dad is gone. That’s something to which I can relate.

In my case, it has been a gradual realization. Did our relationship disintegrate when he could no longer safely drive, and I was the one driving his car? Was it when he stopped saying my name or recognizing my voice? Or when I knew I could no longer seek his guidance?

If I lived close enough to visit at his memory care center, would that just prolong the process, make it more evident, more painful? Probably. Though, distance doesn’t seem to make it easy. If I lived near my Dad, I could have transitioned if not from daughter to caregiver, at least to care helper or care over-seer, or even to daughter who dutifully visits.

From afar, I’m just daughter who reads about frontotemporal dementia and feels frustration and anger at how the disease has taken my Dad away from me.

Amusement parks as a metaphor for life

April 24, 2010

Whenever we visited amusement parks together–whether at a park he ran, or one at which he was a visitor like everyone else–my Dad always picked up trash. He could not help himself.

If someone had discarded a cigarette butt, a drinking cup, a candy wrapper onto the ground, my Dad would pick it up and carry the trash in his hands until he found a proper receptacle.

Having a father in the amusement industry meant my brother and I got to spend lots and lots of time at amusement parks. We would go to Six Flags over Texas after school each day. One summer, when Dad ran Old Chicago, we spent the summer riding rides and playing carnival games. Another summer we stayed in Knoxville, Tennessee for the World’s Fair, since Dad ran the midway there. My brother has followed Dad’s footsteps into the amusement industry. I’ve watched from the sidelines.

I’ve watched, over the years, how Dad pays attention to keeping the lines moving. There’s a whole science to those queues we stand in to ride roller coasters. Park managers don’t want us standing in line all day; if we’re standing in line, we’re not buying lemonades and souvenir T-shirts and balloons. I’ve watched how Dad pays the same respect to the parking lot attendant as to the visiting dignitary. And, of course, how he picks up trash without qualm, in order to keep the park–his or someone else’s–looking nice.

I suspect he loved his industry from the very first job he had as a ride operator. I know he loved roller coasters and thrill rides; I inherited that gene from him. He told me he wants to be cremated rather than buried because he would rather have cemetery land available for an amusement park.

When I was a baby, above, he would carry me through the park on his shoulders or in his arms. Two years ago, on our last trip to an amusement park together, I tried to hold hands so he would not wander. Eventually, we came to The Scream, below.

And of course my Dad could not help himself. He rode that ride with gusto, like the grandchild sitting next to him, not dwelling on the ups and downs or what lays ahead, but just enjoying the moment.

*** UPDATE ***
The morning after I posted this article, I was brushing my teeth. That picture you see at the very top of this post sits in that porcelain frame atop a high shelf in my bathroom. Very securely, I might add.

Well, it leapt from its perch, landing on my arm. It did not break. And, though heavy, did not hurt me.

Of course I risk sounding loony, but…I suspect the frame was my dad, somehow, reaching out to me.

Orange prompts pondering on life with dementia

April 24, 2010

He’s always in my heart, of course, but once my Dad is in heaven, I’m sure that he’ll pop into my mind often–like when my daughter grabs an orange at breakfastime.

I was reading the newspaper. She was digging her fingernails into the skin of an orange and removing small chunk after small chunk of rind. Eventually she got to pulling away the stringy pith. Juice ran down her hands. I told her I would have sliced the orange for her, if she had asked.

“One of my friends puts the orange in his mouth and bites the skin off,” she told me.

“You know who else does that?” I asked, suddenly remembering. “Your Grandpa.”

From my childhood all the way into my adulthood, my Dad would bite into the skin to start peeling an orange. Often he could peel the entire fruit in one intact piece. He probably started perfecting his trick in childhood, maybe about the age of 9, Sabrina’s age. It’s something I never picked up.

Sabrina was mildly impressed. “Do you think he still does?” she asked.

What a good question.

I wondered. I wonder, still. Is orange-peeling a skill that dementia would allow? Is it a habit so well-ingrained as to not be taken from my Dad by his disease? He can’t reliably recognize his grandchild, or child, or wife. But I bet he can still peel oranges.

So instead of getting all sad about how oranges have made a longer-lasting impression on my Dad than I have, I look at that piece of fruit and say a quiet little ‘thank you’ for the memories.

To my daughter, I say: “I think he probably does.”

Big money going toward new therapies for FTD

April 7, 2010

Three scientists will receive $1.2 million in research grants over four years to help accelerate the development of novel therapies for Frontotemporal Dementias. The money comes from the Alzheimer’s Drug Discovery Foundation and the Association for Frontotemporal Dementias.

“This year’s recipients are all engaged in the type of research that offers both caregivers and patients the optimism they need to face the chalenges of living with FTD,” Phil Lovett, a foundation board member and research liaison, said in a news release.

Recipients include:

* Dr. Philip Van Damme of Leuven University in Belgium.

Recently he was involved in research published in the Annals of Neurology that examined mutations that lead to a loss of progranulin, or PGRN, in a “considerable portion” of frontotemporal lobar degeneration.

* Einar M. Sigurdsson, Ph.D., of New York University School of Medicine.

His recent work in the journal, Current Alzheimer Research explains the challenge of getting immunotherapies that target the amyloid-beta peptide in Alzheimer’s disease ready for clinical trials.

* W. Haung Yu, Ph.D., of The Taub Institute of Columbia University Medical Center.

The Journal of Neuroscience recently featured work from Yu about protein processing at the cellular/molecular level.


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