lzheimer’s disease (AD) is a relentless, fatal disease creating a health crisis for patients, families, and nations worldwide. And while it is not ebola or coronavirus in its speed, rest assured, it is deadly. As our global population ages, this disease, which is crippling families today, will crush our national economies and handicap our global workforce in ways that are immeasurable. With an estimated 44 million people living with dementia worldwide, this is a truly global crisis. However, while solutions must cut across sectors and nations, due to the variability of healthcare systems, solution implementation and policy recommendations will need to be locally understood and supported.

The Challenge

While we expect to lose physical abilities as we age, we don’t expect to lose our mental abilities, and Americans fear Alzheimer’s disease more than any other chronic illness. Individuals with AD lose their memories, their independence, their relationships, and, ultimately, their lives. If left unchecked, the number of Americans suffering with AD will more than double, from 5.8 million to 13.8 million, by 2050. Family caregivers, who are often pushed to their limits as they care for loved ones, incur economic and healthcare costs of nearly $250 billion every year.

Although the field has seen meaningful scientific advancement, our practice of medicine for the preservation of cognition has not changed significantly since our parents were caring for our grandparents. Even without a new therapy, the opportunity exists to shift the paradigm of well-established beliefs and habits that are anchored in a late orientation, where the disease is most commonly recognized and treated in its latest stages of functional compromise. This orientation doesn’t reflect the evolving scientific understanding of Alzheimer’s disease and the promise that treating earlier than we do today will translate to better patient outcomes. Ironically, this late orientation also slows down the advancement of research, as most diagnoses occur well past the stage of clinical trial availability — our current healthcare system approach is not only suboptimal for care today but is also slowing down tomorrow’s progress.

The Opportunities

Through scientific advancements, we now know that the pathology of Alzheimer’s can appear in the brain ten to twenty years before patients experience symptoms. Recent progress in diagnostic modalities across cognitive testing, brain scans, blood and other fluid tests, and digital technology are making timely detection more attainable. These new technologies also offer the potential for easy and more scalable testing, which may expand access to a broader worldwide population. However, current detection and diagnosis of Alzheimer’s and other dementias occur late, if at all. Half or more of people with dementia are never formally diagnosed—a far higher ratio than for other diseases. Policies to increase early detection can 1) reduce risks and costs today, 2) accelerate a treatment for tomorrow, and 3) help us prepare for the future.

1. Reduce Risks and Costs: Earlier detection can shift Alzheimer’s care to a prevention model (more like our approach to heart disease), helping people with the signs of Alzheimer’s fight the disease. Long-term research studies now show that lifestyle changes earlier in life (such as more physical activity, a Mediterranean diet, and better sleep) may lead to fewer seniors developing AD and other dementias. Those habits could also save money by helping people with Alzheimer’s manage co-morbid conditions. Additionally, the US-GERAS study, published in The Journal of Alzheimer’s Disease, was the first of its kind to show how early stages of cognitive decline economically impact both patients and caregivers — a critical calculation, since many Alzheimer’s caregivers are also over 65.
2. Accelerate a Treatment: While there is no cure for Alzheimer’s disease, obtaining a diagnosis allows people to benefit from current treatments that alleviate symptoms of the disease. Diagnosis also opens the opportunity to participate in clinical trials. More patients in clinical trials raises the chance of a breakthrough therapy that can slow the progression of the disease. And when a breakthrough medicine does arrive, earlier detection will allow patients access when they’ll benefit most, before their disease has impaired their thinking, memory, and function.
3. Prepare for the Future: System readiness is a multi-faceted issue that impacts all aspects of our healthcare system and ultimately prevents patients from productively flowing through the system to get the best care in the most efficient manner. Not only does late diagnosis prevent the identification and care of patients early in the continuum of the disease, it also complicates the healthcare system’s ability to prepare for and apply value-based payment arrangements for future therapies.

The ethics of an early diagnosis of AD have been heavily debated; however, anxiety, depression, and self-harm have been studied by leading ethicists in the field and the fears do not seem to be playing out to the degree expected with presymptomatic diagnosis or communication of genetic predisposition. In this regard, we are advocating for diagnosis as early as subtle symptoms occur, or earlier in certain high-risk populations. Disclosing the diagnosis not only respects the individual rights of the patient, but also maximizes healthcare system utility. Finally and most importantly, without a timely and accurate diagnosis, people living with Alzheimer’s disease lose the opportunity to contribute to their own personal and financial plans, lose their voice in their own medical and treatment planning, and are stripped of the choice to participate in a clinical trial. The current situation leaves families caring for loved ones with AD without the resources and support available to them, such that they often experience a crisis unprepared and with greater burden than necessary.

Recommendations

In order to evolve the current Alzheimer’s paradigm, and to create truly sustainable impact for patients and healthcare systems, we must quickly advance the clinical practice paradigm to align with scientific advancements in the following ways:

• Taking a public health view that moves from “it’s broken, fix it” to a “predict and prevent” mindset, such as encouraging lifestyle modifications that are also beneficial for heart disease, diabetes, and other NCDs.
• Reflecting the complementary roles of diagnostic tools, current treatments, and future therapeutic advancements, and encouraging training of skilled frontline healthcare professionals on the disease and the benefits of research participation.
• Ensuring that Annual Medicare Wellness Visits, which are mandated by CMS, are completed as required and always include the use of standard cognitive assessments approved by the FDA. Today, fewer than one out of five seniors receive these assessments, compared with four out of five who receive cholesterol checks.

Certainly, we must develop diagnostics and therapeutics that are tools for getting to better patient outcomes, but these are only part of the solution. If the healthcare system doesn’t make a dramatic shift regarding our views and actions on cognition and brain health, any drug that we develop simply won’t have the intended impact. It will never benefit the patients that need it most. The important must also become the urgent.

References available upon request (see also Supplemental Resources).

Supplemental Resources

Addressing Dementia, OECD Health Policy Studies

The Four Pillars of the New Retirement: Health, Family, Purpose, Finances

2020 Alzheimer’s Facts & Figure

Rates of Formal Diagnosis in People Screened Positive for Dementia in Primary Care: Results of the DelpHi-Trial

Physical Activity, Brain Volume, and Dementia Risk: The Framingham Study

Addressing Challenges in Payment and Access to Treatments for Early-Stage Alzheimer’s Disease

Issues in Disclosing a Diagnosis of Dementia

Ethics of Genetic and Biomarker Test Disclosures in Neurodegenerative Prevention Trials