Thursday, March 26, 2015

Most Alzheimer's patients not given diagnosis by their doctors


In the 1950s it was cancer. Hush, hush, whisper, whisper.
"They called it the 'C' word, and it didn't get talked about in doctor's offices," said Beth Kallmyer of the Alzheimer's Association. "It certainly wasn't talked about in the general public, it was whispered."
Today it's Alzheimer's, and 55% of patients and their caregivers say their doctors never told them they have the devastating disease, according to a special report of the Alzheimer's Association released this week. Compare that to one of the big four cancers -- breast, colorectal, lung and prostate -- more than 90% said their doctors had no problem giving them the diagnosis.
"Alzheimer's not being talked about, many doctors are not giving the diagnosis," added Kallmyer in a webcast. "We need to change that. It's a disease, it's nothing to be ashamed about."
"This is very current, very well done, and pretty dramatic findings, let's be honest," said Dr. Pierre Tariot, director of Banner's Alzheimer's Institute. "I am reminded of the rather sobering fact that as many as 60% of people who have a dementia die without the dementia having been diagnosed by their doctor."
Why the silence?
    This is not the first report to show doctors are sidestepping this tough conversation. But why? That's been studied too, and the reasons doctors give range from diagnostic uncertainty and fear of causing emotional distress to time constraints, lack of support, and stigma.
    "There is an element of stigma here towards brain and mental health problems in general," said Tariot. "I would call it professional awkwardness. I can't really help this condition, why invest time and energy talking about it, it makes me squirm."
    "I think the comparison of Alzheimer's to cancer is appropriate," said Dr. Tom Price, Medical Director for Emory University's Geriatric Clinic. "I give patients a new diagnosis of Alzheimer's disease many times a week, and every time it is uncomfortable, and I've been doing it for over 10 years. It is easier to talk about cancer now that there are so many new and effective treatment strategies, and cause of optimism with survival from cancer at an all-time high."
    Alzheimer's advocates stress the importance of giving a patient all the facts, as early as possible, so they can work with their family to organize legal and health directives and have time to fulfill life-long desires. It's just as important for the caregiver.
    "Imagine it's your spouse," said Tariot. "Personality changes, memory is different, language and communication is different, you don't know what is going on. Then you start getting answers, and you get a sense of how to play to his strengths and minimize his weaknesses. Here are travel tips, communication tips, and safety issues; here are ways to stay happy and joyful, even though this is a new chronic illness."
    There's another critical factor as well: access to clinical trials that might help slow the illness.
    "Right now, the big studies that are underway in prevention are really looking at people in the early stages of Alzheimer's," said Kallmyer. "So by waiting, they can lose out on clinical trials as well."
    Addressing the 'gap'
    "We want to be clear that we believe physicians are well meaning, but there's a gap there somewhere," said Keith Fargo, Director of Scientific Programs for the Alzheimer's Association. "We saw doctors say lack of time, lack of resources, so we think the answer to this mostly has to do with education and providing more resources."
    Experts CNN spoke to agreed.
    "As a field, we have failed," Tariot told CNN. "It isn't just the doctors in the trenches. Medical schools, professional organizations and health care systems have not recognized the importance of identification and management of people with dementia."
    "I think that medical school curriculum does need to update to include neurodegenerative diseases in their 'giving bad news' training -- Alzheimer's and Parkinson's diseases, for example," said Price. "We do need to educate all providers to be aware that hesitance to give the diagnosis reduces the ability of the patient and family to make some choices and planning that is essential for emotional and financial well-being."

    Friday, March 20, 2015

    5 Surprising Causes Of Alzheimer's Disease

    It's happened to all of us: we forget where we parked our car or why we walked into a room. Some amount of forgetfulness is normal, especially when you're busy or have a lot on your mind. But for nearly five million Americans, that forgetfulness will progress into Alzheimer's disease. Decades of research have shown that the buildup in the brain of toxic proteins, called beta amyloid and tau, can lead to Alzheimer's. What's less clear is what causes these proteins to accumulate. Some new studies have begun to explain this process, revealing that the causes of Alzheimer's disease go beyond genetics and unhealthy habits (though those are important factors, too). Here, some of the most unusual (and scary!) causes new science is pointing to.

    1. You're on anti-anxiety meds.
    A class of medications called benzodiazepines, which include the popular drugs lorazepam (Ativan), alprazolam (Xanax), and clonazepam (Klonopin), are frequently used to treat anxiety and insomnia. Although studies evaluating the safety and efficacy of these drugs have only evaluated their short term use (generally three months or so), many people take them long-term. A study published in the British Medical Journal followed 1,796 Canadians with Alzheimer's disease and 7,184 healthy controls for six years and found that taking benzodiazepines for more than three months was associated with up to a 51% increase in Alzheimer's disease.The moral of the story? If you need benzodiazepines only on occasion, you're probably safe. If anxiety and insomnia are a regular issue for you, consider cognitive behavioral therapy, which has been found to effectively treat both conditions—without the harmful side effects of drugs.
    2. You've hit your head one too many times.
    With an estimated 300,000 Americans getting a sports-related concussion each year, according to data from the University of Pittsburgh's Brain and Spine Injury Program, lots of us are familiar with the worries that can accompany a head injury. Most people recover without a hitch, but for others, the inflammation that helps to heal the damaged brain tissue becomes chronic. Here is where the potential links to Alzheimer's disease can be found, says Brian Giunta, MD, PhD, a psychiatrist and neuroscientist at the University of Southern Florida.Cells in your brain called microglia play an important role in inflammation. "When the microglia are constantly in a pro-inflammatory state, they are less able to clear amyloid beta from the brain," Giunta says.Without microglia to clear the misfolded proteins, it can build up in the brain and kill neurons. It's still not clear why the inflammatory process stays switched on in some people or how many cases of Alzheimer's disease are potentially linked with traumatic brain injury, Giunta says.
    3. You're regularly sleep-deprived.
    A lack of sleep has hit near-epidemic levels in recent years, as we attempt to juggle career, children, marriages, hobbies, and more. For lots of us, something's gotta give—and many of us choose to sacrifice shut-eye. Besides making you drowsy behind the wheel and giving you the midnight munchies, this sleep loss can also speed up the development of Alzheimer's disease, according to a study published in the Neurobiology of Aging."Sleep problems are common in people with Alzheimer's disease, but it wasn't clear whether this was cause or effect," says Domenico Praticò, MD, a pharmacologist and immunologist at Temple University in Philadelphia. In a mouse model of Alzheimer's disease, Praticò and colleagues found that letting these mice only sleep for four hours a night increased the amount of tau in their brains. It also altered learning and memory, as well as how well neurons were able to communicate with each other. Chronic sleep deprivation, Praticò explains, stresses the brain and body (which is why you may be so tired), which speeds up the harmful processes leading to Alzheimer's disease."Sleep deprivation is a form of chronic stress on the body. It's also the time when the brain gets rid of bad things," such as excess amyloid beta protein, Praticò said.
    4. You're lonely.
    Remaining engaged with friends and the broader community is part of what many of us consider the good life. It's good medicine, too. A study in the Journal of Neurology, Neurosurgery, and Psychiatry identified links between loneliness and the development of dementia. The researchers found that feelings of loneliness in older adults gave them 1.63 times the odds of developing dementia during the three years of the study. Scientists still don't know what's driving this association, but the implications are clear: Staying connected is good for you.
    5. You have diabetes in your brain.
    To neuroscientist Suzanne de la Monte, MD, of Brown University, Alzheimer's disease is really a metabolic disease that affects the brain. The links are so close that she has begun referring to Alzheimer's disease as Type 3 diabetes.Brain cells use glucose as fuel, and insulin tells these cells to slurp up glucose in the blood. De la Monte's big insight was that brain cells can develop insulin resistance, just like other cells in the body."Any organ can be affected by insulin resistance," de la Monte says. "You can have it in the liver- we call that non-alcoholic fatty liver disease. If you get it in the kidney, we call it renal disease. If you get it in the brain, we call it Alzheimer's."Her research over the past few years has revealed that this creates a toxic environment for the brain, leading to the harmful buildup of proteins and neuron death seen in Alzheimer's.In addition to telling us more about how Alzheimer's can be prevented through healthy diet and exercise, it could also help potentially treat the disease. Preliminary studies have shown that inhaled insulin can help reduce symptoms of Alzheimer's dementia.

    Alzheimer's Drug Slows Mental Decline In Early Study

    "It’s a bigger treatment effect than we had hoped for," said the researchers.  (Photo: Getty Images)
    An experimental drug from Biogen Idec became the first Alzheimer’s treatment to significantly slowcognitive decline and reduce what is believed to be brain-destroying plaque in patients with early and mild forms of the disease, according to a small study likely to reignite hopes of a treatment.
    Alzheimer’s is expected to strike as many as 75 million people worldwide by 2030 without effective treatments, likely costing billions of dollars year in care. A successful treatment would pay some of the richest rewards in medicine.
    Biogen is entering a field littered with expensive failures from such players as Pfizer Inc and Eli Lilly and Co.
    The 166-patient trial of the Biogen drug, aducanumab, tested four groups who each received a different dose against a fifth group who received a placebo.
    The treatment led to reductions in brain amyloid, a type of plaque believed to play a key role in the development of Alzheimer’s symptoms, according to interim data presented at a medical meeting in Nice, France, on Friday. The plaque reduction was more pronounced as the dose of the drug increased and over time.
    It marks the first time an experimental drug demonstrated both a statistically significant reduction in amyloid plaque and a slowing of clinical impairment in patients with mild disease, said Alfred Sandrock, Biogen’s chief medical officer.
    "It’s a bigger treatment effect than we had hoped for," Sandrock said.
    Biogen will begin enrolling patients later this year for a large Phase III trial that could be used to seek approval of its drug.
    Biogen said it increased its chances of success by carefully screening patients to exclude those with other forms of dementia misdiagnosed as Alzheimer’s, and by testing only those early in the disease.
    "We imaged every patient coming into study, so we knew that every patient had Alzheimer’s disease and plaque," Biogen Chief Executive George Scangos said in an interview. "It’s hard to think of a reason why these data are not representative of the actual activity of the drug."
    HIGHER DOSES SHOW GREATER EFFECT
    Safety and tolerability was considered acceptable, the company said. There was a big jump in the incidence of amyloid-related imaging abnormalities-edema (ARIA-E), or water surrounding brain tissue, at the two higher doses among patients with a gene associated with the highest risk for developing Alzheimer’s. These highest-risk patients also dropped out of the trial at a higher rate. Most of the ARIA-E was asymptomatic or mild and resolved over time, Sandrock said.
    Using imaging to measure amyloid in six regions of the brain, researchers found plaque levels were virtually unchanged at 26 and 54 weeks into the study for the placebo group.
    Patients who received either 3 milligrams per kilogram of weight, 6 mg/kg or 10 mg/kg of aducanumab showed a significant and dose-dependent increase in plaque reduction at 26 weeks. There was an even greater reduction in plaque for patients at the 3 mg and 10 mg doses when they were tested at 54 weeks.
    Data for those in the 6 mg arm was not available at 54 weeks because that group started later. A fourth group of patients who received a 1 mg dose were not helped by the drug.
    The trial also used two measures to test cognition: a questionnaire with a 30-point scale to test mental acuity and an 18-point Clinical Dementia Rating scale that also tests for loss of ability to function.
    On the first test, placebo patients worsened by 3.14 points after one year versus significantly smaller declines for patients receiving aducanumab 3 mg and 10 mg, of 0.75 and 0.58 points, respectively.
    On the second scale, the placebo group worsened by 2.04 points at one year. While the scores were better for all the drug groups, only the 10 mg dose reached statistical significance, with a decline of 0.59 points. The 6 mg dose could still show a significant slowing on both scales when more data becomes available. 

    Thursday, March 19, 2015

    Big Wall of Empowerment

    The Big Wall of Empowerment
    I am thrilled to announce that I made the 'Big Wall of Empowerment'. This is Maria Shrivers campaign to wipe out Alzheimer's and I am thrilled to be apart of it as well as have my image on the big wall. As I continue with my efforts in my city and town to educate others, bring awareness and be a voice for Alzheimer's. 
    http://wipeoutalzheimers.org/
    Join me ladies as we help wipe out Alzheimer's!
    #wipeoutalz #purpledignity #endalz #beverlyjean #remembermyphoto #bmwphotography
    #68, My Story

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    Wednesday, March 18, 2015

    Meet The ‘MIND’ Diet (It Slashes Alzheimer's Risk By 35%)

    By: Jenna Birch
    Eat a serving of Bean Every Other Day
    The MIND diet promotes consumption of berries — particularly blueberries and strawberries. (Photo: Flickr/storebukkebruse)
    There’s a rising interest in how nutrition fuels cognition and memory function long-term — and now, researchers are on to a winning dietary formula. The bonus? Noshing your way to brain benefits doesn’t involve following a strict regimen.
    Eat Poultry At Least Twice A Week 
    According to a new study published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Associationthe so-called “MIND diet” could slash Alzheimer’s risk by 35 percent, even if a person only moderately adheres to the eating plan. 
    Developed by nutritional epidemiologists at Chicago’s Rush University Medical Center, the regimen’s full name is the Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) diet. 

    Butter is an "Un-Healthy" Brain Food.
    Limit to less than one Table Spoon
    A Day
    The MIND diet consists of: 

    • At least three servings of whole grains a day
    • A salad and one other vegetable a day
    • A glass of wine a day
    • A serving of nuts a day
    • Beans every other day
    • Poultry and berries at least twice a week
    • Fish at least once a week
    • Limit unhealthy-brain foods, especially butter (less than one tablespoon a day), cheese, and fast or fried food
    • To study its effects, the scientists took data on the food intake of 923 Chicago-dwellers between ages 58 and 98 over the course of a decade. 
      "Un-Healthy" Brain Food. Limit Cheese
      They used questionnaires to determine just how closely participants’ eating habits mimicked one of three diet plans: the Mediterranean diet, the DASH diet, or the MIND diet. The researchers also measured the incidence of Alzheimer’s over a 4.5-year follow-up period, as part of an ongoing research project at Rush to examine facets of cognitive health.

      Eat 3 Servings of Whole Grains A Day
      All of the diets seemed to be effective in reducing Alzheimer’s risk. Those who followed DASH saw a 39 percent drop in risk, those who followed the Mediterranean diet saw a 54 percent drop, and those who adhered to the MIND plan saw a 53 percent decrease in cognitive decline.
    • The biggest finding, though? Those who only moderately stuck to the Mediterranean and DASH diets did not see their Alzheimer’s risk decrease. Those who moderately followed MIND, on the other hand, still saw risk drop by 35 percent.
      Eat Fish Once A Week
      “I think that will motivate people [to try it],” says Rush nutritional epidemiologist Martha Clare Morris, PhD, in a statement.
      1 Glass of Wine A Day Approved
      As the name suggests, the MIND diet is a hybrid between the Mediterranean and DASH diets, which are both backed by the National Institute of Health as plans that offer real, research-based benefits to those utilizing them — everything from reducing risk of heart disease and stroke to lowering blood pressure.
    • There are 15 dietary components to the MIND diet, including 10 that are considered “healthy brain” food groups, and five that are considered “unhealthy-brain” food groups. The point is to eat more from the healthy groups, and less from the unhealthy groups — with stricter adherence to this rule leading to greater benefit. The healthy groups are green leafy vegetables, other vegetables, nuts, berries, beans, whole grains, fish, poultry, olive oil and wine. The unhealthy groups are red meats, butter and margarine, cheese, pastries and sweets, and fast food or fried food.
    • Eat A Salad A Day
      Notably, whereas the Mediterranean and DASH diets both emphasize fruit consumption in general, MIND encourages berry intake in particular, especially cognitive-boosting blueberries and strawberries. 
      In the study, the longer men and women followed the MIND diet, the greater their protection against cognitive decline. “As is the case with many health-related habits, including physical exercise, you’ll be healthier if you’ve been doing the right thing for a long time,” says Morris.
      Eat One Veggie A Day
      Past studies have also shown the DASH and Mediterranean diet plans to be tied to a lower risk of dementia, which, as the current study indicates, seems to be true. The results of the MIND diet study also offer strong preliminary evidence that a combination of facets of the two regimens hold cognitive benefits — and luckily, it’s also easier to follow than the Mediterranean or DASH plans.
      Five million people in the United States currently suffer from Alzheimer’s, and that number is expected to jump to 16 million by 2050 — which is even more reason to adopt these dietary practices now.
      Although more studies are needed to confirm the brain-boosting benefits of the MIND diet, science has already shown us the health benefits of the brain-boosting foods, even beyond cognition. “It is hard to come up with a potential downside to adopting these dietary habits,” Morris says.

    Monday, March 16, 2015

    Nevada Legislator Advocacy Day, 5 New Laws. One Day to Spread the Word.

    Alzheimer's Advocacy Day. 3-16-2015
    March 16, 2015 is Alzheimer's Advocacy Day. Located at my state capital in Carson City Nevada I showed up bright and early at 8 \am. This day is dedicated to meeting with legislators, there aides and understanding new policies and laws pertaining to Alzheimer's that are up for the legislative  session.
    Today the different laws that I learned about and helped introduce to Assemblymen, Assemblywoman and Senators were the following:
    1)Bill (Committee on Health and Human Services) Provide: Caregivers with Information and Training to Ease Hospital Transitions. This bill designates that a patient can name a caregiver that the hospital can continue to share discharge treatment with the patient to help them. The object here is if the patient is capable of designating a caregiver being that they are not to far progressed. HIPAA compliance issues have been addressed with in the bill. Over all this would help with the continuation of care for the patient.
    
    Left to Right: Myself, Senator Greg Brower, Team Captain Cathy
    2)AB9 (Assembly Committee on Judiciary) Protects Persons with Dementia from Financial Abuse by Legal Guardians. The goal here is to protect the patient. The one thing that had to be understood when it came to financial abuse was that the courts decided the patients needed to have 10K or more. This over all helps patients that have assets so that they are not taking advantage of by a caregiver or guardian when it comes to there fiances.






    Left to Right: Team Capital Cathy, Myself,
    Daniel Stewart-Policy Analyst Assembly Leader
     to Assemblyman
    Paul Anderson

    3) SCR 2 (By Hardy) Encourages Dementia -Specific Training for Health Care Providers and First Res-ponders. This is a fabulous bill! This bill encourages extra training for first res-ponders when it comes to a Dementia patient. This is both beneficial to the patient, families and healthcare workers involved. The reality is that as the disease with Dementia patient progress so does treatment for these patients. If first res-ponders or other hospital staff do not have proper care when treating these patients, it can make it difficult for both parties. Having extra treatment and education for these healthcare workers would be a huge incentive in understanding different techniques for treatment of patient and how to deal with the patients.
    
    Advocate Bob, Myself Assemblywoman Victoria, and team Captain Cathy.
    4) AB 223 (O'Neille) Protect Persons with Dementia from Negligence by Caregivers. It seems all to often the elderly and Dementia/Alzheimer's patients are targets when it comes to Negligence. Even more important is that these individuals that take advantage of these patients by abusing them or exploiting them need to be prosecuted with either a misdemeanor or felony charge. I fully support this. As elderly patients need to be protected from the predators of the world.
    
    Advocate Bob, Mark Sprinkle for Assemblyman Edwards,
    Myself and Team Captain Cathy
    5)AB 325 (Sprinkle) Protect Person with Dementia from Financial Abuse by Paid Guardian. Some family dynamics when it comes to Alzheimer's patients can be very difficult. One of these that can come up can be having a paid guardian. A paid guardian is a third party that is hired to care for patient who is unable to care for themselves. Part of there responsibility as a guardian is financial responsibility when it comes to the patient. However sometimes these Guardians are over looked and they take advantage of a patient. I fully support this bill as this is an extra layer of security for the patient.

    Ready to Start the Day!

    Left to Right: Team Captain Cathy, Advocate Bob, Tracy Davis for
    Assemblyman Hickey & Myself.
    It was exciting to learn about these bills as well as help educate my state leaders on why myself and the National Alzheimer's association support these state bills in Nevada.






    Sunday, March 15, 2015

    Series 1: Purple Dignity

    Photo 6, Series 1
    Hair By: Me
    Makeup By: Me
    Article By: Brooke Morgan Westlake-Kelley
    Photos: By BMW Photography,
    Brooke Morgan Westlake-Kelley
    Makeup: Brooke Morgan Westlake-Kelley
    
    Photo 7, Series 1
    Hair By: Me
    Makeup By: Me
    My blog is dedicated to Alzheimer's as my readers know. As I would like it to be more about just patients coping with Alzheimer's, my blog has morphed into several different facets that I feel are important to share with readers.  A range of articles I find that are related to Alzheimer's with today's science news or medical treatments. Or a famous person that is in the news speaking on behalf of a loved one or themselves. Over 5 million American's have Alzheimer's and in Nevada, we are the second largest state with 37,000 people that have the disease today. This number will double by 2025. With advocacy comes hope and courage, and with my thought process well I tend to think the sky is the limit. I still love to share individuals stories and photograph them, but I also like to provide extra resources in my blog to help others.

    With my photography, creativity is one thing I love to do. (Ask my family).  I can create and become an image I see in my mind.  There has never been anything I haven't been able to accomplish in my mind and with that I am able to create those things, weather it is a life moment or an art project with my photography. As I go on my long runs and walks, I always think about many different things from my day, to goals I have to my son, etc. My mind tends to just roam. One thing I do think a lot about is Alzheimer's and how I can make a bigger impact on being a voice, breaking stigmas and educating individuals on the topic. I got to thinking one day of a concept of portraits with purple stones on the face, signifying the start of Alzheimer's disease. It is a series of photos where the purple gems take over my face just like an Alzheimer's patient experience with the disease taking over there mind. It starts out slow with symptoms and before the patient knows it those slow symptoms become fast growing. The stones begin to over take my face. This piece of series is part one in a series of self portraits. It is dedicated to anyone that has had a loved one with Alzheimer's or is currently suffering from Alzheimer's.
    #wipeoutalz   #Remembermyphoto  #beverlyjean   #purpledignity   #endalz   #Nevada

    Photo 8, Series 1
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