Mrs. Smith sat at her kitchen table reading her local newspaper when her eye caught an ad for an Alzheimer’s research trial. Feeling both perplexed and excited, she called the center to schedule an appointment for her husband.
At the clinic, Mr. Smith sat in silence with his head down. His wife sat in the chair next to him and softly cried. He scored much lower on a standard memory test than he did in previous years, too low to qualify for a potentially disease modifying Alzheimer’s study. Mrs. Smith took a deep breath, swallowed back her tears, and then abruptly asked, “Why didn’t the neurologist, or even our primary care doctor, tell us about a clinical research study? I asked him repeatedly over the years if there were any other options, and all he did was prescribe donepezil that isn’t doing anything at this point.” With tears streaming down her face, Mr. Smith took his wife’s hand. As she caressed his hand she continued angrily, “He knew all along studies were happening, but he never said a word. We were not given any resources, nothing other than a drug that he said would slow down the progression, but it didn’t. For so long we had no clue there was more we could do. The memory clinic, the Alzheimer’s resource center’s social worker, no one ever said anything about research.”
Mr. and Mrs. Smith are not alone. Countless families experience the same situation. Physicians and Alzheimer’s health care professionals know that Alzheimer’s research is in full force, but few actually refer to a clinical trial, leaving families angry, puzzled and distressed.
Many neurologists say they do not like to treat Alzheimer’s patients because there is nothing they can do. Many primary care physicians are guilty of the same. Many dismiss their patient’s memory complaints, or simply do not have enough education and appreciation of dementia. Many physicians in general have deterred their patients from seeking out a clinical research trial.
It is curious how a physician chooses to not refer a patient to a clinical trial, when it was a clinical trial that enabled him or her to be able to prescribe a medication, swab for the flu, and maintain a medical practice. Speaking with diverse physicians across the country, their take on Alzheimer’s echoes a common theme: no drugs work and I don’t want to put my patient through that failure, or, there’s too much exclusionary factors to get in a study and I don’t want to add further disappointment, or I didn’t think to refer. But one of the most detrimental actions in not referring a patient was, I don’t like the physician at the research center, I think he’s arrogant. To intentionally withhold any potential treatment options from a patient is mind-blowing.
Not only is there a war going on in defeating Alzheimer’s disease in of itself, the battles between all the various Alzheimer’s resource centers from the local mom and pop centers to the larger ones like the Alzheimer’s Association, who do support and advocate clinical research and have a website: Trial Match. But when you have several clusters of Alzheimer’s resource centers in one community, vying for the same funding, trying to one up each other in their support programs, not providing accuracy in resource information, attempting to divide the community in petty politics, and unwilling to collaborate for the greater good, the mission of actually serving those in need becomes blurred.
Whenever there is a failed Alzheimer’s study, the media tends to publish harsh criticism and focuses on the negatives rather than offering any positive future outcomes, such as this latest story on a Merck trial. If we treated polio, HIV, diabetes, cancer and other diseases in the same way we do Alzheimer’s, the majority of us would be a very sick bunch of people with shortened lives.
Research is pivotal if we are to find effective, disease modifying treatments to slow and stop the progression of Alzheimer’s disease.
Research investigators are dedicated in finding effective treatments in Alzheimer’s, but when participation is low, effective treatments will continue to drag on for years, or may never happen at all. Instead of a clinical trial being sought after, it seems easier for patients to consume coconut oil, spend hundreds of dollars on non-FDA-approved supplements, and/or work on brain games. These appear to be the common types of outlets that media, physicians and other health care professionals tend to focus on. How does disease modifying clinical research compete when there’s Prevagen falsely claiming its supplement improves memory or Lumosity’s false claims to improve cognitive skills (both are in legal lawsuits for such claims). With the lack of government support, attention and funding (Alzheimer’s remains the number one disease that is breaking the system), coupled with the media’s pessimism in research and promotion of propaganda memory boosts, physicians not referring, and some Alzheimer’s organizations’ all dismissing research, the battles are endless.
It is widely understood that knowledge is power. True, Alzheimer’s research has had disappointing results, like the current Eli Lilly study on solanezumab that hit national news late last year. The news was a blow for numerous people; however, science doesn’t give up. “I have not failed. I’ve just found 10,000 ways that won’t work,” as Thomas Edison said. “The advances in research are astounding” as a Johns Hopkins neuropsychiatrist, Principal Investigator, Frederick Schaerf, M.D., Ph.D. from the Neuropsychiatric Research Center of Southwest Florida said.
We know more about the brain in the past ten years then we did in the past 10,000 years. It is an exciting time in Alzheimer’s research because there are instrumental findings that patients can engage in. The more studies and active enrollment, the more we can start to pave a productive way in ruling out what’s not working, and what is.
There are many benefits of participating in an Alzheimer’s research trial. Anyone going into a research study has access into gaining a better understanding of the disease, access to having support from a team of medical specialists dedicated to the field, access to gaining some self-empowerment by taking an active stance, and access to having a sense of altruism. Dr. Schaerf adds, “There are many inclusion and exclusion factors to getting into a study. There are many steps to take in the process, but even for those people who do not qualify for a clinical trial, they still get information, referrals and resources on what they can do and where they can go to remain proactive. No one leaves my office without having something useful they can take away from their assessment. For many folks, this means they gained more important knowledge that they didn’t get from their other providers.”
Effective treatments will never be gained if the decline of participation continues to falter and the mentality of many healthcare providers do not change. The more that scientists can better understand Alzheimer’s disease, the closer research may get in finding disease-modifying treatments to slow and stop disease progression. Lilly didn’t give up; they lost billions as it takes billions of dollars to conduct a research study, but they are moving forward, dedicated to finding that exact needle in the haystack. There is a lot of backlash on “big pharma” that is justifiable in some cases, but without these companies, we wouldn’t have treatments for heart disease, diabetes, cancer, HIV, polio, and countless other conditions. Current Alzheimer’s studies continue to show promise, and time is a factor, but without getting involved, the statistics will inevitably climb, the $236 billion it cost our country in 2016 will continue to rise, and more people will continue to be warehoused because Alzheimer’s care is big business.
Research studies need to be viewed as a potential treatment option, just as much as keeping an active lifestyle: exercising, listening to music, creating art, socializing, eating healthy, and getting creative with what is sacred to you. Research isn’t about a memory problem encapsulating Mr. Smith, but Mr. Smith who happens to have a memory problem and is doing something about it, whether he is living his life as best as he can, and if being involved in a research study is doable, the better Mr. Smith and his family can say, “At least we tried everything within our power.” And through that empowerment, it is up to physicians, Alzheimer’s resource centers and other healthcare providers to do their jobs, and offer exactly that, all the resources.