November Is Alzheimer’s Awareness Month


Imagine how it feels to know you are of a certain age and believe yourself to be functioning normally, living your best life, only to realize that you are forgetting a little more than just a few names. The fear and reticence to get tested and, the terror of waiting for results can feel like a lifetime. The diagnosis? Alzheimer’s. Knowing you have an incurable and fatal disease is devastating. For spouses, family members and friends, it is life-altering.

Alzheimer’s is the most common type of dementia. It is also the sixth leading cause of death for all adults. The disease is a progressive one, involving the parts of the brain that control thought, memory and language.

According to the Centers for Disease Control and Prevention (CDC), there are an estimated 5 million Americans living with Alzheimer’s disease.

“The number is projected to nearly triple to 14 million people by 2060.”

The cause is unknown, but researchers and scientists are pouring huge amounts of time, money and resources to not only learning more about the disease, but diligently working to find a cure for this fatal disease.

Most of us have experienced the devastating impact that occurs when a loved one starts declining. There is a difference between dementia and Alzheimer’s. As with most of the other health topics we cover throughout the year, Alzheimer’s is another disease that early detection can make a difference in treatment options, planning and caregiving.

I had to watch the decline of my grandparents with Alzheimer’s and now, most of my close circle of friends are dealing with caring for aging parents. Myself included. None of us want to admit or see physical and mental changes in our loved ones. However; denial of an apparent problem or, refusal to get a formal diagnosis hurts your loved ones in the long run.

Spouses have a particularly difficult time handling the ongoing changes. No longer remembering things that were automatic for most of their lives, unable to hold scintillating conversations or, searching for words that no longer will come to mind. Frustration abounds, both with the patient with Alzheimer’s, as well as spouses and family members. Losing patience is very common. There are numerous training classes to teach us how to care for our loved ones and to navigate the terrible decisions that will have to be made. 

One thing that is prevalent for Alzheimer’s patients is age. Genetics play a role as well. There are ongoing studies that are examining other factors that may increase risk for Alzheimer’s.

There are warning signs of Alzheimer’s. Here are a few according to the CDC:

  • Memory loss that disrupts daily life, such as getting lost in a familiar place or repeating questions.
  • Trouble handling money and paying bills.
  • Difficulty completing familiar tasks at home, at work or at leisure.
  • Decreased or poor judgment.
  • Misplacing things and being unable to retrace steps to find them.
  • Changes in mood, personality, or behavior.

Even if you or someone you know is experiencing any of these symptoms, that does not necessarily mean it is Alzheimer’s. This is why it is so important to get screened by your treating physician. There could be problems with medications or a vitamin deficiency that may be causing these symptoms. Again, early detection is critical.

While there is no cure for this disease, it may be possible to slow down or delay the worsening of symptoms with medical management. There are three medications that are currently being used to treat dementia. These medications provide some benefits, and may delay worsening of their condition. Unfortunately, the benefits are not long-term. This is why the need for continued research is so very important.

You may have seen in recent news reports that the FDA has approved a new drug for use in the treatment of Alzheimer’s. This drug is intended for people in the early stages of the disease. Yet another reason for memory screenings and complete physical examination. This is the first drug to be approved in close to two decades, but it is not without controversy.

The name of the drug is Aduhelm, and it is manufactured by Biogen.

So why is this drug controversial? Here is what we found out: 

There were two studies presented before the advisory panel of the FDA. Only one demonstrated positive results. Nor, did Aduhelm clearly demonstrate a slowing of  progression of the disease. Apparently, it was approved on a risk versus benefit premise. This approval did not demonstrate to several members of the advisory board that it was effective. Particularly, in light of the fact that two previous studies were halted because the drug did not demonstrate effectiveness at higher doses. Three members have since resigned from the advisory board.

 

When the drug was finally approved by the FDA, it was with the stipulation that a third study would be performed to demonstrate the efficacy after use of Aduhelm. That means that if the study does not demonstrate positive results, the FDA could withdraw its approval of this drug.

There are a few other issues with this drug:

  1. The cost of this drug is approximately $56,000 per year. It is not yet apparent what the insurance reimbursable amount will be for major carriers as well as Medicare. Medicare does not plan to make a decision until mid-2022.
  2. With use of this drug, regular scans are required to monitor the effectiveness of this drug. It is unknown as to how many scans will be insurance reimbursable or, the frequency of such scans.
  3. A common side affect of this drug is brain swelling and brain bleeding. This is called ARIA (amyloid-related imaging abnormalities).
  4. Biogen has stated that most people, even those without insurance should be able to negotiate the price to afford Aduhelm.

Several of the foremost experts in the country are reluctant to prescribe this drug without irrefutable evidence that it not only reduces the plaque buildup, but that it also demonstrably slows the progression of the disease.

It has been intimated that the rush to approve this drug without substantial evidence to support its use will cause future problems for other drugs seeking approval for use with Alzheimer’s patients. Biogen has reaped enormous monetary benefits (stock prices) with this approval.

Personally, no one would like to see an effective treatment for Alzheimer’s more than I would. Watching the decline of one’s parents is heartbreaking in so many ways. Being a person that tries to fix everything, and not being able to provide answers or a solution is indescribable. With baby boomers aging, this problem is continuing to grow at an alarming rate.

As we age, more and more medications are necessary to sustain our health and quality of life. One of the first things that my friends are having to deal with is our loved ones medications. Either they are not be taken properly or worse, not at all. This is a prevalent problem when dealing with dementia related issues.

Remembering that the person with dementia is not making rational decisions is super important. We want to allow them their independence for as long as possible. That is not always possible. The elderly tend to get combative when addressing their decline and the issues associated with them. The last vestige of their independence is their ability to drive. By far, that is the hardest thing to remove from our loved ones.

Knowing your family health history can assist you to make better choices now to prepare you for your future. Each Thanksgiving, we encourage our subscribers to find out information about your family health history while family is gathered together. November 25th is National Family Health History Day which is why it is celebrated on Thanksgiving. 

While genetics play a big part in Alzheimer’s, proper diet and exercise, regular physicals and being proactive can help you to lower your risks for your senior years.

There are three ongoing clinical trials for new drugs to treat Alzheimer’s. These clinical trial are estimated to conclude by the end of 2022. There is urgency to find a mechanism to slow down the symptoms before they occur or progress into full blown Alzheimer’s. Fingers crossed that one of these will prove to be the miracle drug that millions are hoping for.

Meanwhile, we manage as best we can with the tools available. Again, being proactive and taking action sooner rather than later can help to keep our loved ones with us for maybe just a little while longer.

You have to be patient with Alzheimer’s. Once you understand that it’s a medical condition, you become a little more compassionate. You get less frustrated.” – Kim Campbell

 

 

Please remember the real me when I cannot remember you.” – Julie White