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Alzheimer’s and Brain Awareness Month

Last month, June, was Alzheimer’s and Brain Awareness Month – you may have seen some information about it on social media. I wanted to add to those voices before everyone moved on.

Alzheimer’s is the most common form of dementia, accounting for 60 to 80% of dementia cases, it affects over 5.5 million Americans. Alzheimer’s is one of those diseases that is all to common, most of us either have someone close to us with the disease or know someone whose loved one has Alzheimer’s. It has a huge affect on our nation because it requires caregivers with enormous patience, it lasts a long time, has no cure and is one of the nation’s costliest diseases. It is estimated that it will cost our nation over 300 billion dollars this year and the cost is going up. This cost doesn’t even figure in the cost to society of unpaid caregivers. While the death rate of other diseases has fallen . . . the death rate of heart disease, the most common cause of death, has fallen 11% . . . the death rate from Alzheimer’s has risen 123% between 2000 and 2015. Alzheimer’s impacts us all, personally and financially.

So, you might ask, “why haven’t we found a cure? It is obvious that we should be working day and night on a cure for this disease.” Well, we have, but it has been rough going. Alzheimer’s is a complicated and multifaceted disease. There have been many promising medicines that have been tested and failed, some of the failures coming at the very end of the clinical trials. It has been heartbreaking to those impacted by Alzheimer’s to have hope and then be disappointed.

Scientists have identified that plaque buildup in the brain seems to be common in those with Alzheimer’s. They have also discovered that a vital brain cell transport system collapses when a certain protein twists into microscopic fibers called tangles. These discoveries have given hints to the cause, but a solution has been elusive. While there have been medicines created that treat some of the symptoms, there is still no cure. But there is hope. Scientists have joined forces by forming the Coalition Against Major Diseases (CAMD), an alliance of pharmaceutical companies, nonprofit foundations and government advisers, that have forged a first-of-its-kind partnership to share data from Alzheimer’s clinical trials. It will take a combined effort like this to tackle this terrible disease.

As a country we need to ensure that our government allows coalitions like this the freedom to pursue a cure for Alzheimer’s. My math says an Alzheimer’s cure could save our nation 3 trillion dollars over 10 years, to say nothing of the impact on the millions of patients and caregivers whose lives are devastated by this disease.

In these times of isolation my sincere thanks goes to those in the Alzheimer’s units throughout the country who have stayed on the front lines, often at the risk of their own health, to care for the millions of Alzheimer’s patients. Find out more about Alzheimer’s and Brain Awareness Month by going to this website. You might also try wearing a nice-looking purple outfit in hopes that someone will ask you about it and you can tell them about Alzheimer’s and the importance of finding a cure.

In the meantime, stay safe and be joyful.

Thair



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It’s Alzheimer’s & Brain Awareness Month

Each June, seniors and advocates celebrate Alzheimer’s & Brain Awareness Month all over the country. As the month concludes, we thought it would be helpful to discuss the importance of preserving brain health a “check up from the neck up”—a critical aspect of maintaining a healthy lifestyle as we get older. The brain is such an important and complex organ, and injuries and diseases affecting its performance can affect the way we think, act, feel, and behave.

Alzheimer’s disease is a type of dementia that causes problems with memory, thinking, and behavior. Dementia is a general term for memory loss and other issues with cognitive ability that are impactful enough to seriously disrupt a person’s day-to-day life. Alzheimer’s disease accounts for the majority of dementia cases in the United States—estimated to be between 60 and 80 percent.

More than 5.8 million Americans are living with Alzheimer’s disease, and this number is projected to grow to 14 million individuals by 2050. According to the Alzheimer’s Association, early diagnosis initiatives can help with managing symptoms, however, only 16 percent of American seniors say that they receive regular cognitive assessments from their healthcare providers. You can watch a quick video here with some important statistics about the disease and ways to get involved with finding a cure.

Similarly, brain injury is thought to increase the likelihood of developing Alzheimer’s, other types of dementia, and overall cognitive decline. Fortunately, Medicare programs cover many testing and treatment options for older Americans who suffer from brain injury, and although Alzheimer’s disease specifically doesn’t currently have a cure, there are a number of treatment options available that can help manage symptoms.

As always, it is critical that we as seniors make sure we know exactly what our specific Medicare plan covers, including inpatient treatments and prescription medications that can help treat brain injuries and related illnesses.  You can learn more about coverage options here to ensure that you are informed about how to take care of your brains!



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November is Alzheimer’s Disease Awareness Month!

The month of November is full of fall leaves, family gatherings, and of course, turkey dinner! But the fall season is also a perfect time to make sure you are educating yourself on ways to stay healthy, and this week, we are focusing on a topic that affects more than 5.5 million Americans over the age of 65.

Alzheimer’s disease is a type of dementia that causes problems with memory, thinking, and behavior. Dementia is a general term for memory loss and other issues with cognitive ability that are impactful enough to seriously disrupt a person’s day-to-day life. Alzheimer’s disease accounts for the majority of dementia cases in the United States—between 60 and 80 percent.

Usually, when one thinks of an Alzheimer’s patient, they may think of someone older. However, it is important to note that developing Alzheimer’s is not a normal or expected aspect of aging. Alzheimer’s is a progressive disease, meaning that it worsens over time, but it is not simply caused by growing older. The Alzheimer’s Association has great resources about this illness, including facts, figures, and information about treatment. You can learn about ten of the early signs and symptoms of Alzheimer’s, and learn the differences between Alzheimer’s warning signs and typical age-related changes here. For example, a sign of developing Alzheimer’s could be losing track of the date or the season, while a typical age-related change could be forgetting the day’s date and then remembering later on.

Although Alzheimer’s currently has no cure, there are a number of treatment options available that can help treat patients’ symptoms. Fortunately, Medicare plans cover many of these symptom-management options and treatments.

An especially great way you can spread awareness about Alzheimer’s this November is by participating in a Walk to End Alzheimer’s, the world’s largest event to raise awareness and money to research a cure. There is an interactive map tool where you can find a walk close to you, and gather with members of your community to show your support for those with the disease and dedication to finding a cure. Raising money for research initiatives, especially while participating in a fun community activity, is one of the best ways we can make progress toward finding a cure for Alzheimer’s.

We would love to see how you plan on commemorating Alzheimer’s Disease Awareness Month this November! If you attend a walk, be sure to share a picture with us on our Twitter and Facebook pages, and remember to keep your health a priority as we enter the holiday season!



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Help Raise Alzheimer’s & Brain Awareness this June

Guest post by Ian Kremer, Executive Director of the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease).

Today, more than 5 million of our fellow Americans – neighbors, friends, relatives – live with Alzheimer’s disease, and if your family has been spared so far, you probably know other families that have not been so fortunate. As researchers pursue scientific breakthroughs to stop Alzheimer’s disease and as 15 million family caregivers strive to improve quality of life for people who have Alzheimer’s disease, every American can help by being better informed, raising awareness, and volunteering to advance the science and make our communities better places for people facing Alzheimer’s disease.

Despite so many of us knowing someone facing Alzheimer’s disease, myths and stigma remain widespread about both the causes and symptoms. Let’s start by educating ourselves and people within our reach about the facts.

According to the Centers for Disease Control and Prevention (CDC), Alzheimer’s is the most common form of dementia. The Alzheimer’s Association reports 5.7 million Americans currently live with the disease, and that number is expected to rise to as many as 14 million by 2050. Alzheimer’s disease occurs primarily in individuals older than 65, with risk increasing as you age, but an estimated 200,000 Americans have younger onset Alzheimer’s disease. Regardless of age, Alzheimer’s is a disease and not a normal part of aging to be taken for granted, accepted or ignored. Age is a risk factor, but not a cause. These 10 early signs and symptoms can help indicate when it may be time to talk with a doctor to request a formal evaluation.

Diagnosing Alzheimer’s and other forms of dementia always should be left to professionals, so it’s best to consult your primary care provider with questions or concerns. If you do receive diagnosis, be sure to ask your doctor to provide an actionable set of next steps that help you take an active role in getting needed family and community support. That means making informed and supportive decisions about medical, legal, financial and care issues, but it also means getting the education and emotional or spiritual support to live life as fully as possible for as long as possible.

For people with Medicare coverage, getting evaluated for possible Alzheimer’s disease by your primary care physician is included as a free benefit in the Annual Wellness Visit. And if Alzheimer’s disease or another form of dementia is diagnosed, your doctor can use a new Medicare code to spend significantly more time helping the person with any form of cognitive impairment and their family caregivers develop a formal care plan. For doctors that don’t know about these Medicare benefits or how to use them, an excellent toolkit makes it easy.

Another great way to raise awareness and improve understanding is to become an advocate. The best way to do so is by volunteering with organizations like UsAgainstAlzheimer’s, the Alzheimer’s Foundation of America, the Alzheimer’s Association, as well as groups in your local community, to educate and encourage elected officials to support Alzheimer’s research and care programs. The next step is to volunteer to be part of the research that will unlock the science to prevent, slow or stop Alzheimer’s. You can also volunteer for research studies that will improve care and quality of life for people already living with any form of dementia. You can find opportunities to volunteer for dementia research through Antidote, Trial Match, and the National Institute on Aging’s clinical trials search engine.

We all have a stake in making our communities as inclusive, supportive and hospitable as possible for people living with dementia, as we have done for people living with any other form of disability. Acting individually, each of us can raise awareness and fight stigma by taking less than 10 minutes to become part of Dementia Friends USA.  If you have a little more time, you can volunteer to start or build your local community’s commitment as part of Dementia Friendly America.

You can also wear your commitment to raising Alzheimer’s awareness and fighting stigma on your sleeve… literally. Throughout June, Go Purple by wearing the color every day and using it as a conversation starter with people you encounter going about your daily routine. Share what you have learned about Alzheimer’s, share your personal stories, and start a broader conversation about how all of us have an opportunity to make a difference in lives of our fellow Americans.

By working together to learn about Alzheimer’s, we can help to normalize conversations about brain health with family and physicians. We can also create a society better suited to support those affected by Alzheimer’s and other forms of dementia, both throughout Alzheimer’s and Brain Awareness Month and year round.

Every member organization in the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease) believes our country can and must lead the way in advancing the science to stop all forms of dementia while improving quality of life for everyone already facing Alzheimer’s and the other diseases that cause dementia symptoms. Together, we raise awareness, we educate, we advocate. We invite you to learn about our collaborative work on the LEAD Coalition website, by subscribing to our free newsletter and connecting with us on Twitter and Facebook.

Ian Kremer is the Executive Director of the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), a diverse and growing national coalition of almost 100 member organizations committed to overcoming Alzheimer’s and other forms of dementia.



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Advocates Speak Out: Rob Gundermann of Alzheimer’s and Dementia Alliance of Wisconsin

Rob Gundermann is public policy director for Alzheimer’s and Dementia Alliance of Wisconsin. He spoke with Seniors Speak Out’s Nona Bear about issues seniors are facing in Wisconsin. Below is an abridged version of the interview.

Nona Bear (NB): What community do you serve and how long have you been advocating for patients?

Rob Gundermann (RG): We are based in Madison, Wisconsin and formed in the 1980s. Originally, we were part of the Alzheimer’s Association, and then years ago, we split off and created our own group.

NB: What changes have you seen the Part D program make in the lives of seniors?

RG: We’ve seen a tremendous change. When I started, we didn’t have any drug programs, so we were seeing people choose between buying food or their medicine. We also saw people cutting their dosages in half to make them last longer. So having this program where people can get their drugs affordably is tremendously helpful. Through Medicare, we have people going in to get their conditions addressed earlier and overall this is saving us money.

NB: What are some issues that seniors still struggle with regarding the Part D program?

RG: The issue I hear about most often is getting the donut hole filled. In Wisconsin, it’s even more complicated as we work with the system we had in place before Part D, our state program Senior Care. We’re still figuring that all out.

The number two issue though is the preferred drug list. Alzheimer’s is unique since there are only a few drugs to choose from to treat the illness. The latest generation drugs are better than the older generation, so we’re trying to get people on those medications. However, if seniors pick the wrong plan or the preferred drug changes on their plan, that becomes a big problem.

NB: Are people aware that the Medicare donut hole will be closed?

RG: Not yet, and currently there’s a lot of uncertainty because people aren’t sure where the ACA is headed. There needs to be more outreach to explain that this donut hole will close in time.

NB: You mentioned the importance of picking the right plan. Are your patients aware they can change plans during the course of the year if they have a one or two star plan? Does that impact your population?

RG: It absolutely does. As the coverage changes, their medications might not be covered. Part of our job is to educate them and make sure they review their plans before that window closes and make needed changes. That’s an issue that I think a lot of seniors in general need to be educated more about.

NB: What are some key questions seniors should discuss with their doctors and pharmacists in relation to their Part D coverage?

RG: They should ask about generics and mail order as two ways to save money. We also find some medications where it’s not any more expensive to get a higher dose, so you can get a higher dose and cut it in half to your actual prescribed dose to save costs, but obviously that’s something you should discuss with your doctor and pharmacist.

NB: How do you think changes to Part D would impact your constituents?

RG: We have two big concerns with potential changes to Part D. One is limitations on current medications. Aricept and Namenda are the two most recent drugs for Alzheimer’s. We are afraid that these medications could be removed from the preferred drug list and that there won’t be an alternative for patients. The other issue is ensuring there is access to new drugs, ones that could potentially stop the progression of the disease, through Part D, so that they are a treatment option for all, not just those who can afford to pay for the medication out of pocket.

NB: How would any changes to Low Income Subsidy affect the people you serve?

RG: Changes would reduce their ability to get their drugs and could delay the point at which they start taking these drugs. The goal with dementia is get patients on medications as soon as possible, so you can slow the onset of symptoms and delay institutionalization.