We've known for years that the number of deaths caused by Alzheimer's disease and related dementias have been underreported, but a recent study identified the disease as the potential third-leading cause of death in the U.S. after heart disease and cancer. The study, published last week in the journal Neurology, found that the number of people who die from Alzheimer's may be five times higher than previously thought, partly because death certificates often fail to list Alzheimer's as a contributing cause of death. 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 often not properly recognized or diagnosed by health care professionals, and most cases of Alzheimer's are not identified in the early stages. Health care providers often fail to recognize early symptoms of cognitive impairment, and may even dismiss mild cognitive decline as a normal part of aging.1 They may also avoid diagnosing the disease because of the demands related to patient education and care management that the diagnosis requires. Additionally, because of the stigma and fear that surrounds the disease, patients and caregivers alike are often hesitant to discuss cognitive issues with their physicians, even after the onset of symptoms.
Even when Alzheimer's disease is recognized and diagnosed, Alzheimer's is often "under-coded" by health care providers in clinical practice and hospitals. This is partially the result of limitations and biases in the diagnostic and reimbursement coding systems, including diagnostic coding in clinical practice and for hospital reimbursement.
These codes are critical because they serve as claims data for payers like Medicare, and providers such as managed care organizations, to determine where to focus their efforts and resources to manage care and improve quality.2 These barriers to recognition, diagnosis and reporting cause an underestimate 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 health care reform, finite resources for clinical programs will be directed to diseases that are documented, through diagnostic and reimbursement coding, to have the most impact on capitated budgets. 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.2,3
This in turn serves as a roadblock to funding -- funding that is desperately needed for new research and the development of effective treatments and a cure. The result of this roadblock couldn't be clearer than when one reflects on the fact that Alzheimer's receives only 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. 4
Alzheimer's disease is a chronic, progressive, uniformly fatal neurodegenerative 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 health care continuum, and from early diagnosis to death, we need to take the necessary steps to ensure that recognition, diagnosis, reporting and reimbursement for Alzheimer's is appropriate and comprehensive for the needs of patients. Without a more proactive approach to the problem of under-recognition, under-diagnosis, under-coding and lack of appropriate reimbursement, as well as better care models, proper resources for Alzheimer's disease will be harder to justify and patients and their loved ones will suffer. The real toll is not just the number of deaths.
As the increasing magnitude of the problem of Alzheimer's emerges, then and only then will we experience an appropriate focus on Alzheimer's research, with the hopes of conquering the disease and stopping its crippling burden on our society.
1 Journal of American Medical Association. Effectiveness of collaborative care for older adults with Alzheimer disease in primary care: a randomized controlled trial. Accessed March 7, 2014.
2 Journal of the American Geriatrics Society. Optimizing coding and reimbursement to improve management of Alzheimer's disease and related dementias. Accessed March 7, 2014.
3 Alzheimer's & Dementia. Potentially avoidable hospitalizations among Medicare beneficiaries with Alzheimer's disease and related disorders. Accessed March 7, 2014.
4 Neurology. Alzheimer disease in the United States (2010-2050) estimated using the 2010 census. Accessed March 7, 2014.