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Alzheimer’s – The Long Goodbye

June is Alzheimer’s and Brain Awareness Month, a time when we focus on those with this fatal disease and those caregivers who navigate through the long goodbye. It was Mrs. Reagan who coined the term the “long goodbye” as she talked about her experience with her husband’s bout with this terrible disease. It truly is a long and debilitating trek, first with the patient and then the caregiver. It’s that anxiety you face each day, wondering when your loved one won’t recognize you anymore.

Sadly, almost all of us have some experience with Alzheimer’s. The sobering statistic is that 1 in 3 seniors dies with Alzheimer’s or another dementia. I lost a dear friend and B-52 crew member to Lewy body dementia. I spent hundreds of hours sitting next to him downstairs in a B-52 and developed a love and friendship that weathered the years. It was difficult to see this kind and joyful person slip away. Toward the end we referred to him as the Lewy body guy. It helped us separate that person from the kind and thoughtful person we knew over the years. I continually focused on who he was before the illness. He certainly earned that respect from the way he lived his life before he was stricken with a disease he didn’t deserve. The truth of the matter is – no one deserves this debilitating disease.

While the long goodbye is the worst by-product of Alzheimer’s the impact on our healthcare system is another huge burden brought on by this disease. In 2022, caregivers of people living with Alzheimer’s and other dementias provided an estimated 18 billion hours of unpaid care, a contribution to the nation valued at nearly $340 billion. In 2023, Alzheimer’s and other dementias will cost the United States $345 billion. By 2050, these costs are expected to reach nearly $1 trillion. This begs the question, why isn’t there a cure for Alzheimer’s? Why hasn’t our highly touted research scientists discovered a way to cure, or at least delay, this soul robbing disease.

Well, Alzheimer’s is complicated, and our brain is an extraordinarily complex piece of equipment. The good news is there has been recent advancements in the treatment of early-stage Alzheimer’s, including mild cognitive impairment (MCI) due to Alzheimer’s disease, which is providing hope to millions living with memory loss and early cognitive decline. The bad news is that the Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report found that, too often, individuals with memory concerns and their doctors are not discussing the issue. They are missing a critical first step toward diagnosis and potential treatment. Why is this happening?

Concerns about receiving an incorrect diagnosis, learning of a serious health problem, receiving unnecessary treatment, and believing symptoms might go away on their own often make people reluctant to broach the topic of cognitive impairment. Furthermore, most participants said they would be more comfortable talking to a friend about memory and thinking problems than a medical professional.

“Providing the best possible care for Alzheimer’s disease requires conversations about memory at the earliest point of concern and a knowledgeable, accessible care team that includes physician specialists to diagnose, monitor disease progression and treat when appropriate,” said Maria C. Carrillo, PhD, chief science officer, Alzheimer’s Association. “For the first time in nearly two decades, there is a class of treatments emerging to treat early-stage Alzheimer’s disease. It’s more important than ever for individuals to act quickly if they have memory concerns or experience symptoms.”

Acting quickly is key, I know for me It’s difficult to self-diagnose what’s just part of getting old and what might be the early symptoms of dementia. It’s the problem that everyone who’s over 60 begins to face. I’ve found multiple on-line tests that will help identify symptoms that could be early signs of dementia. Be careful, some are just attempts to get you onto their website. I won’t give you any links but tests on the Alzheimer’s Association website, or the CDC and the HHS government websites are safe. Your yearly Medicare wellness check is another place where your doctor has the opportunity to evaluate your cognitive health and can identify situations where more detailed tests are needed. It would be a sad situation if you didn’t take advantage of some of the new treatments for early-stage dementia because you ignored important symptoms.

Since I don’t want to disappoint anyone and not talk about some policy or legislation that affects seniors, I will take a moment and talk about a situation that I think has some long-term ramifications. Since last year there have been two new drugs approved by the U.S. Food and Drug Administration (FDA) to treat early-stage Alzheimer’s disease. In both cases the Centers for Medicare & Medicaid Services (CMS) has decided not to allow Medicare payments for these treatments without some barriers to access. In one case it required the patient to enroll in a clinical trial in order to have a chance to access the drug. In the other case patients had to become part of a program called registries. Registries are important tools to gather much needed real-world evidence to transform and improve patient care, but it shouldn’t be a requirement for access to the treatment. I don’t know of any other FDA approved drug that has the barriers to access imposed on Alzheimer’s drugs.

“CMS’ role is to provide health care coverage. Their role is not to stand between a patient and a doctor when deciding what FDA-approved treatments are appropriate. Their role is not to single out people living with Alzheimer’s and decide that their lives, their independence and their memories are not necessary,” said Joanne Pike, DrPH, Alzheimer’s Association president and CEO.

Pretty strong words but absolutely true. Alzheimer’s and Brain Awareness Month gives us a chance to reflect and recommit to being vigilant in looking for dementia symptoms in ourselves and our loved ones. There are early-stage medicines that can treat this fatal disease. It is also a chance for us to tell our lawmakers that we don’t want barriers to access for these FDA-approved drugs. Anything that can delay the long goodbye should be available without any barriers.

Best, Thair

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Alzheimer’s Awareness Month – What Are the Signs and Symptoms

As I grow older, I find myself searching for words that have been part of my vocabulary when I was younger but that I can’t seem to find during a conversation. It’s like I know there’s a word that fits perfectly in the conversation I’m having but I can’t remember it. I also have what seems to be a common problem of going into a room and not remembering what I went into the room for. I don’t think I’m alone in having fears that these symptoms are an indication of the onset of Alzheimer’s or some form of dementia. I take some solace in the fact that almost all of my peers suffer many of these same symptoms, but I also know many friends and relatives who do have some form of dementia or have been diagnosed with Alzheimer’s, and I’ve seen the impact it has on their lives and on the lives of their families.

I am going to visit a long time friend on the East coast who is in her sixties and is afflicted with Alzheimer’s. Her condition has continually worsened over the last five years, and she is now in a memory care unit where she doesn’t recognize anyone, including her husband. The saddest part of this story is that a very large percentage of older Americans have a loved one with a similar story. Alzheimer’s has a huge affect on the health of our nation.

November is Alzheimer’s Awareness Month, and its goal is to increase our focus on the disease, both for our own well being and the well being of those we love. Here are some numbers. Today there are about 6.5 million people 65 and older living with Alzheimer’s dementia. By 2050, that number is projected to reach 12.7 million. Right now, about 1 in 9 people (10.7%) age 65 and older has Alzheimer’s dementia. Think about it, if you go to a party with 20 people, there will be an average of over 2 people at that party who will get some form of Alzheimer’s dementia. That is a huge problem, no wonder it worries us.

A true diagnosis of Alzheimer’s can only come from your doctor but there are ways to identify what might be a problem that needs to be addressed. I took a simple memory test that is a simple screening that would identify a need for further investigation. You can take that test here.

I found a great table that can separate typical age-related changes from signs of Alzheimer’s dementia. It helped me understand the difference.

Signs of Alzheimer’s Dementia Typical Age-Related Changes

Signs of Alzheimer’s Dementia                                          Typical Age-Related Changes

Memory loss that disrupts daily life: One of the most common signs of Alzheimer’s dementia, especially in the early stage, is forgetting recently learned information. Others include asking the same questions over and over, and increasingly needing to rely on memory aids (for example, reminder notes or electronic devices) or family members for things that used to be handled on one’s own.Sometimes forgetting names or appointments but remembering them later.  
Challenges in planning or solving problems: Some people experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.  Making occasional errors when managing finances or household bills.  
Difficulty completing familiar tasks: People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people have trouble driving to a familiar location, organizing a grocery list, or remembering the rules of a favorite game.  Occasionally needing help to use microwave settings or record a television show.  
Confusion with time or place: People living with Alzheimer’s can lose track of dates, seasons, and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they forget where they are or how they got there.  Getting confused about the day of the week but figuring it out later.  
Trouble understanding visual images and spatial relationships: For some people, having vision problems is a sign of Alzheimer’s. They may also have problems judging distance and determining color and contrast, causing issues with driving.  Vision changes related to cataracts.  
New problems with words in speaking or writing: People living with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have trouble naming a familiar object or use the wrong name (e.g., calling a watch a “hand clock”).  Sometimes having trouble finding the right word.  
Misplacing things and losing the ability to retrace steps: People living with Alzheimer’s may put things in unusual places. They may lose things and be unable to go back over their steps to find them. They may accuse others of stealing, especially as the disease progresses.  Misplacing things from time to time and retracing steps to find them.  
Decreased or poor judgment: Individuals may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money or pay less attention to grooming or keeping themselves clean.  Making a bad decision or mistake once in a while, such as neglecting to schedule an oil change for a car.  
Withdrawal from work or social activities: People living with Alzheimer’s disease may experience changes in the ability to hold or follow a conversation. As a result, they may withdraw from hobbies, social activities, or other engagements. They may have trouble keeping up with a favorite sports team or activity.  Sometimes feeling uninterested in family and social obligations.  
Changes in mood, personality, and behavior: The mood and personalities of people living with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or when out of their comfort zones.  Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

Remember, there are physical and mental reasons that can cause Alzheimer’s-like symptoms; your doctor knows you and is the one to make the final diagnosis.

I hope you’ve found some information that can help you navigate this strange journey of getting old. I also hope you take the time to focus this month on the brain health of you and your loved ones. As with most diseases, early detection helps as we battle this dilapidating disease.

Best, Thair

p.s. If you haven’t already voted, get out there and do it. Voting is a way to incorporate action into your words.

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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.