We’ve known for years that the number of deaths caused by Alzheimer’s disease has been underreported, and a recent study suggests it's the third-leading cause of death in the U.S. after heart disease and cancer. The study, published last week in Neurology, found that the number of people who die from Alzheimer’s may be five times higher than previously thought, partly because death certificates fail to list Alzheimer’s as a contributing cause of death.
A Difficult Diagnosis
But this is only part of the story. The problems begin many years before death, when the disease is in its earliest stages.
Alzheimer’s disease is poorly diagnosed by healthcare professionals, and very few cases of Alzheimer’s are identified in the early stages. Doctors often fail to recognize early symptoms of cognitive impairment, and some still dismiss mild cognitive decline as a normal part of aging. They may also avoid diagnosing patients with Alzheimer's because of the demanding patient education and care management it requires. Patients and caregivers alike are often hesitant to discuss cognitive issues with their physicians, even after the onset of symptoms, because of the stigma and fear that surrounds the disease.
Even when Alzheimer’s disease is recognized and diagnosed, it is often “under-coded” by healthcare providers in clinical practice and hospitals. Coding systems that record patient symptoms and diagnoses for reimbursement have limitations and biases. But these codes are critical because they help payers (e.g., Medicare) and providers determine where to focus their efforts and resources. Under-diagnosing leads to underestimates of the extent to which Alzheimer's disease contributes to morbidity, mortality, and healthcare costs.
As we move increasingly toward a “managed care” system under healthcare reform, finite resources for clinical programs will be directed to diseases that are documented. In addition, claims data can be used to identify persons with Alzheimer's disease who might be entered into case management and disease management programs to improve their care. If the impact of Alzheimer's disease is underestimated, and individuals with Alzheimer's are not identified, effective care for patients with Alzheimer's disease can not be achieved.
This in turn serves as a roadblock to funding. which is is desperately needed for new research and the development of effective treatments. The result of this roadblock couldn’t be clearer—Alzheimer’s receives a fraction of the annual research funding dedicated to cancer and other diseases. Every year, $550 million is put toward Alzheimer’s research while more than $5.7 billion is dedicated to cancer research, despite that fact that Alzheimer’s deaths are increasing while cancer deaths are declining. In 2013, Alzheimer’s care cost the U.S. a whopping $203 billion, and costs are expected to exceed $1 trillion by 2050.
Alzheimer’s is a chronic, progressive, uniformly fatal disease. The failure to recognize the toll that Alzheimer’s disease takes on our population and the health care system has profound implications for care and research. Across the entire healthcare continuum, we need to take the necessary steps to ensure that diagnosis, reporting, and reimbursement for Alzheimer’s is appropriate and comprehensive. Without a more proactive approach to the problem, proper resources for Alzheimer’s disease will be harder to justify and patients and their loved ones will suffer.
Howard Fillit, MD is the Founding Executive Director and Chief Science Officer at the ADDF.