The Science Behind Frontotemporal Dementia

When Times staff photographer Rob Gauthier and I first visited the Bryant family last April to begin reporting a story, (“Little-known brain disease rips apart lives of victim, loved ones,”), about a rare type of dementia, known as frontotemporal dementia, we realized that we needed to explore the science behind the malady. FTD, as the disease is known, is similar to Alzheimer's but affects the front portions of the brain and leads to behavioral problems such as the Bryants experienced with Stu.
I knew about Phineas Gage, the railroad foreman who in 1848 lost the front portion of his brain in a terrible construction accident and who survived as a radically changed man. I had read the work of Hanna and Antonio Damasio, neuroscientists who almost 20 years ago pioneered our understanding of the biology of emotions, and I was eager to see how frontotemporal dementia was being studied to further this research.
In the course of our reporting, Rob and I took a number of trips to UCLA and the West Los Angeles Veterans Affairs hospital to interview Mario Mendez, the physician and neuroscientists treating Stu. In our conversations, Mendez helped us understand what Oliver Sacks meant when he wrote, “Without the great development of the frontal lobes in the human brain, civilization could never have arisen.”
By studying the effects of frontotemporal dementia – and its slow diminishment of personality – Mendez is able to see more clearly the so-called social brain, a portion of our frontal and temporal lobes that plays a role in allowing us to successfully interact with each other and build relationships. Take away this portion of the cortex and we are no longer able to moderate our emotions.
Moderation – the inhibition of emotional impulses – can take the form of empathy and embarrassment and is critical in helping us negotiate complex social environments. Without either, as Rob and I learned during the time we spent with Stu, humans grow untethered to the world, unable to read feelings or behave in an appropriate manner.

By steering the discussion about morality, normally the providence of ethicists and philosophers, away from the symposium and putting it inside the laboratory where thoughts are considered to be not so much conscious choices, but instead reflexes based on a neurological network, Mendez and other neuroscientists are furthering the inquiry into the nature of right and wrong. In this light, religion, family, even Freud's notions of superego, ego and id matter less than biology.

Mendez argues that specific behaviors – not harming another person, respecting hierarchy and authority, accepting communal goals, recognizing equity and fairness – evolved among humans. Good manners, therefore, have as much to do with what we are born with as they do with how we were raised and what our parents taught us.
“Much of the social behavior that we take for granted and that we often consider to be learned or cultural or developmental is actually behavior that is deeply ingrained in the nervous system and in the frontal lobes,” Mendez says.
Consider that the next time you’re in a crowded restaurant and watching the kaleidoscope of interactions. Never mind the ability to speak and communicate. Never mind the opposable thumbs. The frontal lobes make humans human.
 
By Thomas Curwen
February 15, 2012

Diabetes...Dementia... Alzheimer's... Pneumonia

Which one would you rather deal with for most of your life? Which one would you rather die from? Which one would you rather your family have to see you die from? Honestly, I pick the one that takes me the soonest, the one that's the least painful for my family. You know why? Because the way you die is the way they remember you... Okay okay, maybe that's not true for every disease or every person. But I see families every day that lose touch with their loved one because mentally that loved one has left the body a long time ago. I see the amazing memory of a person fade away because of disease and a rotting brain, it's disgusting. It's not fair to that person, not fair to the family, it's not fair for our healthcare system. It's not fair to anyone and it's horrible to see in this world. I see people in their 20s and 30s caring for parents with Alzheimer's, I see grandkids that never knew their grandma could talk, that never knew she could walk... And of course they'll never know the amazing person that used to be there. Their grandparents life and memory will be jumbled with this ridiculous disease. And their parents are too busy trying to care for their grandparents!

I see amazing people that are trying to fight against this disease, against the many forms of dementia. But it's not enough, its just not enough.

What are you going to do? Are you going to read this and go to the next page, play the next game? Good luck, it doesn't discriminate. Half the population over 85. No joke.

www.alz.org

Save the Date for the 2012 Alzheimer's Advocacy Forum in Washington, D.C.

Save the Date! Join us for next year's Forum.

April 23-25, 2012

Renaissance Hotel, D.C.

Registration Fees

Registration fees cover only a portion of the total meeting cost. The Association subsidizes the remainder.

Early bird by March 9 $175

ISTAART members $150
March 9 – April 13 $225

After April 13 and on-site registration $275

Monday only $100

Tuesday only $175

Wednesday only $50

Group Registration Policy and Procedures

For every three fully paid registrations from a group, one free registration will be offered. To qualify for group registration: One person from your group must register all four attendees online (no faxed or e-mailed forms). Group must register at the same time with payment to receive the discount. We will not cancel a pre-registered attendee to join a group registration. All group registrations must be entered at the same time to obtain the group discount.
Cancellation and refunds must be made in writing and must be postmarked, emailed (advocacyforum@alz.org) or faxed (866.699.1235) on or before March 8. All refund requests received by March 8 will be refunded, less a $35 processing fee. No refunds will be made for cancellations received after March 8. No refunds for no-shows.


Registration Methods

Fax

Fax registrations ONLY if payment will be made using a credit card. Do not fax group forms. Your email address must be included on the faxed form. Fax completed registration form to 886.699.1235.

Confirmations

Confirmation letters are sent by email. Please include the email address where you would like to receive the confirmation. Contact Darnella Harris at 312.335.5833 or advocacyforum@alz.org if you do not receive a confirmation.
Pre-Registration

Pre-registrations must be received by Friday, April 13, at 5 p.m. Central. After this time, anyone wishing to register must do so on site at the Advocacy Forum. See registration fee schedule.

Events at Registration

Please indicate on your registration form the meal functions and events you will be attending. All meals will be ticketed. If you wish to make a change to your registration, you may do so by calling 312.335.5833 before April 13 or visit the registration desk on site.

On-Site Registration Hours

Pre-registered attendees may pick up their conference materials, and on-site registrants may complete the registration process, during the following hours:


Monday, April 23 10 a.m.–6 p.m.

Tuesday, April 24 6:30 a.m.–5:30 p.m.

Substitutions

If you are unable to attend but would like to send another person in your place, please email the new information indicating it is a substitution to Darnella Harris at Darnella.Harris@alz.org

For More Information

For registration information, call 312.335.5833 or email advocacyforum@alz.org.

Top 10: Holiday Advice for Caregivers and Other Caregiver News

We’ve been reading so much great advice for caregivers this holiday season, we felt it was worth a blog post just to highlight some of these informative articles. If you’re a caregiver to an aging friend or loved one, take a few minutes to read up on some useful tips that can help you travel your caregiving journey with ease.


1.Ryan Malone, of Inside Elder Care, never fails to impress with his expert insights. His latest blog post talks about the recent Gallup poll that really drills down caregiver statistics in the U.S. Some of them are not surprising, but some will be shocked to learn just how many folks are caring for a loved one these days — and the level of sacrifice they make each day in order to do so.

2.Registered nurse, former caregiver (for her father), current long-distance caregiver (for her mother) and our friend (we’re proud to say!), Shelley Webb of Intentional Caregiver, gives us 11 New Year’s resolutions caregivers can make this holiday season in a guest post for Maturity Matters.

3.If you’re planning to move a loved one in the near future, check out these ten tips from AARP. And for more awesomeness from AARP, read this post if you have a caregiver on your shopping list this holiday season for some excellent caregiver gift ideas. Thinking cruises and spa getaways? Think again: an empathetic ear, a little help. You know, those intangibles that are far more valuable than expensive gifts!

4.Montgomery Media offers tips for caregivers to de-stress this holiday season. Top of the list? Don’t forget to take care of yourself, so you can provide better care for your loved one. We’ve heard it many times, but caregivers get so caught up in caring for loved ones they easily forget this very important task.

5.Tax season is rapidly approaching, and Forbes has some information on tax breaks to help caregivers ease the financial burden.

6.American Medical News talks about how technology can connect doctors and caregivers. Easy communication is critical between the two, as caregivers must stay in control of their loved one’s care needs.

7.The San Francisco Chronicle features a press release covering a new approach to caregiving for the Alzheimer’s/dementia patient. The Pines Education Institute of S.W. Florida partnered with Teepa Snow, a nationally-recognized dementia care expert, to produce a series of educational DVDs to aid caregivers.

8.MSN takes a humorous approach to identifying the signs of Alzheimer’s disease with “7 Signs Santa Has Alzheimer’s.” This light-hearted approach excellently conveys critical signs caregivers and loved ones should look out for, especially if visiting a long-distance aging loved one over the holidays.

9.The holidays are supposed to be a joyous time, yet many aging and disabled adults find themselves with a case of the holiday blues. If your loved one is having a difficult time this holiday season, check out these tips from Care.com to help.

10.La Mesa Courier features a great list of tips for making this holiday season a joyous one for your aging loved ones. Try cooking a special meal together, listening to their stories from the past or taking a nostalgic ride around town.

Alzheimer's and the Importance of Early Detection

Alzheimer's disease is one of the top 10 diseases Americans die from each year, but it is the only one on that list that is expanding as the other causes of death are declining. Alzheimer's disease is a degenerative brain disease and the most common form of dementia.

"Alzheimer's is becoming a more common cause of death as the populations of the United States and other countries age," notes the Alzheimer's Association. "While other major causes of death continue to experience significant declines, those from Alzheimer's continue to rise."

One reason for this difference is that the other leading fatal illnesses are preventable, such as stroke and heart disease, but Alzheimer's cannot be prevented with lifestyle changes. According to the Alzheimer's Association, preliminary data from between 2000 and 2008 showed that deaths attributed to Alzheimer's increased 66 percent, while those attributed to the No. 1 cause of death, heart disease, decreased by 13 percent.

Such statistics make the latest Alzheimer's research so vital for those who suspect they may get the disease, those already suffering from it and their friends and family, who may provide some level of in-home caregiver support during the long course of the disease.

Some of the biggest news about Alzheimer's currently is the importance of early detection.

"Biological changes associated with Alzheimer's disease are thought to begin 10 to 15 or perhaps 20 years before an individual displays symptoms," states Dr. Heather Snyder, senior associate director of medical and scientific relations at the Alzheimer's Association. "But there is no single generally accepted way to identify the disease in its earliest stages -- before symptoms are evident. At the same time, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease."

There are efforts underway to update the diagnostic criteria in a variety of ways, including biomarker measures. This spring, the National Institute on Aging (NIA) and the Alzheimer's Association published new diagnostic criteria guidelines for Alzheimer's disease in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.
You might ask: If the disease cannot currently be stopped or cured, what difference does early detection make?
"The benefits of early detection are many," says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "People who are diagnosed early can participate in the planning of their future -- they can talk to their families about advanced directives, how they want to have their finances handled, what they want to have happen when they can't drive anymore."

Not only does this allow the person with Alzheimer's disease to feel empowered, Kallmyer says, but it's a huge relief to their caregivers and loved ones who otherewise may have to make decisions under a great deal of stress later, when the disease is in its advanced stages.

We recently posted an article on Homewatch Caregivers that pulls from the Alzheimer's Association's own 10 Signs of Alzheimer's list. There is a distinct difference between the signs of normal aging and early Alzheimer's disease. For example, someone may answer the phone and simultaneously put down their keys, then not be able to find them a few minutes later. A normal aging brain will retrace their steps and remember the moment that they answered the phone, whereas an individual with Alzheimer's disease will not remember the phone call or be able to retrace their steps.

Kallmyer points out that the role of an in-home caregiver to someone with Alzheimer's is unique in the length of the disease and increased need. "It starts with helping with memory aides and then ends when the person with Alzheimer's can do nothing for themselves," she says.

Another benefit to early detection of Alzheimer's disease is that the individual can decide if they want to be part of future Alzheimer's research by signing up to participate in clinical trials. "When somebody has a fatal illness, clinical trials can be a great way for them to feel like they are making a change," Kallmyer says. "They might feel like they are making a difference for their kids and grandkids."

Ultimately, with hopes that there will be treatments for Alzheimer's disease, the time to intervene will be in the earliest stages of the brain disease. "This approach envisions what is now common practice in heart disease," says Dr. Snyder. "Where early signs of risk -- for example, in genetic markers or in blood cholesterol and/or blood pressure levels -- can be treated to reduce the chances of heart attack or stroke later on."

Dr. Snyder said there is a lot more research to be done on Alzheimer's disease. "There are many unanswered questions in Alzheimer's disease," she says. "We do not yet know the causes of the disease, we do not know risk factors associated with Alzheimer's disease."

By Leann Reynolds

When Lapses Are Not Just Signs of Aging

Who hasn’t struggled occasionally to come up with a desired word or the name of someone near and dear? I was still in my 40s when one day the first name of my stepmother of 30-odd years suddenly escaped me. I had to introduce her to a friend as “Mrs. Brody.”

But for millions of Americans with a neurological condition called mild cognitive impairment, lapses in word-finding and name recall are often common, along with other challenges like remembering appointments, difficulty paying bills or losing one’s train of thought in the middle of a conversation.

Though not as severe as full-blown Alzheimer’s disease or other forms of dementia, mild cognitive impairment is often a portent of these mind-robbing disorders. Dr. Barry Reisberg, professor of psychiatry at New York University School of Medicine, who in 1982 described the seven stages of Alzheimer’s disease, calls the milder disorder Stage 3, a condition of subtle deficits in cognitive function that nonetheless allow most people to live independently and participate in normal activities.

One of Dr. Reisberg’s patients is a typical example. In the two and a half years since her diagnosis of mild cognitive impairment at age 78, the woman learned to use the subway, piloted an airplane for the first time (with an instructor) and continued to enjoy vacations and family visits. But she also paid some of the same bills twice and spends hours shuffling papers.

Dr. Ronald C. Petersen, a neurologist at the Mayo Clinic College of Medicine in Rochester, Minn., described mild cognitive impairment as “an intermediate state of cognitive function,” somewhere between the changes seen normally as people age and the severe deficits associated with dementia.

While most people experience a gradual cognitive decline as they get older (only about one in 100 lives long without cognitive loss), others experience more extreme changes in cognitive function, the neurologist wrote in The New England Journal of Medicine in June. In population-based studies, mild cognitive impairment has been found in 10 percent to 20 percent of people older than 65, he noted.

Dr. Petersen described two “subtypes” of the condition, amnestic and nonamnestic, that have different trajectories. The more common amnestic type is associated with significant memory problems, and within 5 to 10 years usually — but not always — progresses to full-blown Alzheimer’s disease, he said in an interview.
“Subtle forgetfulness, such as misplacing objects and having difficulty recalling words, can plague persons as they age and probably represents normal aging,” he wrote. “The memory loss that occurs in persons with amnestic mild cognitive impairment is more prominent. Typically, they start to forget important information that they previously would have remembered easily, such as appointments, telephone conversations or recent events that would normally interest them,” like the outcome of a ballgame would a sports fan.
The forgetfulness is often obvious to those who are affected and to people close to them, but not to casual observers.

The less common nonamnestic type, which is associated with difficulty making decisions, finding the right words, multitasking, visual-spatial tasks and navigating, can be a forerunner of other kinds of dementia, Dr. Petersen said.

In general, Dr. Reisberg said, “mild cognitive impairment lasts about seven years before it begins to interfere with the activities of daily life.”

The Correct Diagnosis

Distinguishing mild cognitive impairment from the effects of normal aging can be challenging. Typically, new patients take a short test of mental status, provide a thorough medical history and are checked for conditions that may be reversible causes of impaired cognition. Problems like depression, medication side effects, vitamin B12 deficiency or an underactive thyroid can mimic the symptoms of mild cognitive impairment.
Other tests, like an M.R.I. or CT scan of the brain, can look for evidence of a stroke, brain tumor or leaky blood vessel that may be impairing brain function.
It is natural, Dr. Petersen said, for patients and their families to want to know whether and how quickly the disorder might progress. While patients decline by about 10 percent each year, on average, certain factors are associated with more rapid progression. Among these are the presence of a gene called APOE e4, more common among patients with Alzheimer’s disease; a reduced hippocampus, a region of the brain important to memory; and a low metabolic rate in the temporal and parietal regions of the brain.
Amyloid plaques in the brain, while a hallmark of Alzheimer’s disease and a predictor of progression, have also been found at autopsy in people with perfectly normal cognitive function.

Preserving Cognitive Function

Despite a number of clinical trials that tested various medications, no drug to treat mild cognitive impairment has been approved by the Food and Drug Administration. But experts like Dr. Reisberg and Dr. Petersen suggest several approaches that may slow the decline in cognitive function.
Although studies did not show that medications like donepezil (brand name Aricept) and memantine (Namenda), both used to treat Alzheimer’s disease, change the ultimate course of mild cognitive impairment, Dr. Reisberg said they can be useful temporary treatments that may stabilize patients for a few years.
Although the drugs are not approved for this condition, licensed physicians can prescribe approved medications “off label.” “Clinicians have to work with what we have,” Dr. Reisberg said.
There are people who think they are having memory problems, but tests do not show anything definitive. Some may be in Stage 1 of Alzheimer’s disease, Dr. Reisberg said, and perhaps could benefit from early treatment with the drugs.

It is also important to reduce cardiovascular risk factors like smoking, elevated cholesterol and high blood pressure; keep blood sugar at normal levels; minimize stress (which in animal studies can cause the hippocampus to shrink); and avoid anticholinergic drugs that can interfere with brain chemicals important to memory. These include Demerol to treat pain, Detrol to treat a leaky bladder, tricyclic antidepressants, Valium, and over-the-counter medications with Benadryl (diphenhydramine), like Tylenol PM, Dr. Petersen said.

Some cognitive rehabilitation exercises, like computer games that enhance focus, may be helpful, Dr. Petersen said, but there have been few good studies to demonstrate a benefit. Compensatory techniques, like taking notes, creating mnemonics and making structured schedules, can be useful aids, he added.
But most promising is regular physical exercise, which in animal studies was found to reduce the accumulation of amyloid in the brain. An Australian study in patients with memory problems showed that brisk walking for 150 minutes a week improved cognitive function.

By JANE E. BRODY

New York Times

YAAA! Young Advocates for the Alzheimer's Association Meeting & Social

PLEASE NOTE THE NEW LOCATION! Our next meeting is August 9th from 6-8pm in Phoenix. Please see below for more details and we will see you there! ~ Suzette

Applebees Neighborhood Grill & Bar

2547 N 44th St (just South of Thomas Rd)

Phoenix, AZ

YAAA!, Young Advocates for the Alzheimer's Association, will be having Monthly meetings every 2nd Tuesday of the month from 6:00-7:00 pm followed by a supportive social from 7:00 - 8:00 pm. Young adults 18-39 are welcome to attend! We will be reviewing current federal and state priorities of the Alzheimer's Association as well as any advocacy done by our YAAA! members for the previous month.

After the meeting we invite everyone to stay for our supportive social from 7:00 to 8:00pm to further bond with members, prospective members or just enjoy drink and food specials for happy hour! Please calendar this for future reference and let me know when you can make it. I am looking forward to seeing everyone!

YAAA! Facebook page: www.facebook.com/DSWYAAA