Alzheimer’s – The Long Goodbye

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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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