What We’re Missing in the War Against Alzheimer’s: Early Diagnosis

Meryl Comer

Despite the best efforts of scientists and researchers, clinical trials on Alzheimer’s therapies have had a 99% failure rate and it has been 14 years since the Food and Drug Administration approved any Alzheimer’s-related medication. Like millions of others whose families are personally affected by Alzheimer’s disease, I am increasingly concerned that the medical, scientific, and advocacy communities are disproportionately focused on the hope that a blockbuster drug will suddenly emerge from a biopharmaceutical laboratory.

This is not to say that increased investments in research should not be our foremost priority. NIH funding for Alzheimer’s-related research still lags well behind the dollars devoted to cancer, heart disease and other illnesses, despite the fact that the national cost of caring for patients with dementia is expected to rise by 33% to $4.7 billion in the next eight years. These funding battles will be critical in terms of strengthening the odds of one day finding a cure. However, we also need to do more to fundamentally alter a status quo that is deficient in creating the infrastructure necessary to stimulate research advances and improving the lives of patients and caregivers. In looking at the current Alzheimer’s paradigm, humanizing early diagnosis is just such an imperative.

Improve Early Diagnostic Practices

There is a simple inarguable fact about medical practice in the United States today. If you have cancer, your physician is going to tell you so that all viable clinical options can be put on the table. If you show symptoms of Alzheimer’s disease, there is a very strong likelihood you won’t be made aware of it. A survey conducted by the Alzheimer’s Association found that 55% of those with the disease had not been informed of their condition by their doctor.

This unwelcome degree of paternalism in the medical field is not helpful. There are doctors who do not wish to reveal an Alzheimer’s diagnosis because to do so would only upset patients and their families when there is no cure available. As well-intentioned as this may be, it is indisputably wrong and here’s why.

An early diagnosis can enable the patient and their caregiver to engage in financial, legal and long-term care planning and even take advantage of those medications that are available to manage symptoms. On a broader scale, we need more clinical trials involving individuals in the early stages of the disease. Withholding accurate diagnoses from approximately half of the Americans who have Alzheimer’s is significantly impeding the ability to conduct meaningful research. Given the growing consensus in the research community that pharmacological interventions will be more effective in the early stages of the disease, it places an even greater priority on recruiting clinical trial participants who are pre-symptomatic or at least in the early stages of dementia symptoms. 

The “tell it like it is” approach to early Alzheimer’s diagnosis will only become a priority for primary care physicians and specialists if patients and their families demand it. An individual with dementia has no less right to a candid and accurate health diagnosis than a person with cancer. 

Meryl Comer is president of the Geoffrey Beene Foundation Alzheimer’s Initiative and a member of the UsAgainstAlzheimer’s board of directors.

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If concerted, long-term investments in research are not made, America will lose an entire generation of young scientists.
Brenda Canine, PhD; McLaughlin Research Institute, Montana