A new study suggests advances in medical diagnostics that can detect early stages of Alzheimer’s disease create a host of complex questions.
For example, do you want to know if you have early Alzheimer’s, or if you could find out your Alzheimer’s risk, would you want to know? How should doctors tell you your risk? And what does it mean for the many newly diagnosed, asymptomatic Americans still in the workplace?
To compound the problem, despite new technology that detects early cases of Alzheimer’s, no effective interventions have been identified to stop the progression of the disease.
The new report from the University of Pennsylvania debates the challenges of safely and effectively communicating a diagnosis of pre-clinical Alzheimer’s disease.
The study will appear in the October 11 print edition of the journal Neurology.
Recent medical advances will soon allow physicians to inform patients that they have the disease before symptoms start impacting their ability to function in daily life.
“We need to develop systems now, to navigate the challenges of a pre-clinical Alzheimer’s diagnosis,” said Jason Karlawish, M.D., author of the paper and a leading voice on the ethics of Alzheimer’s.
“It’s only a matter of time before we are able identify Alzheimer’s before the patient is ill, like we’ve done with cholesterol and heart disease. Given the unique nature of this disease, which strips people of their independence as the disease progresses, safeguards are needed to protect those at high risk or with a pre-clinical diagnosis.”
The desire to know individual risk diverges greatly; likewise, an individual’s reaction to learning that they have a high Alzheimer’s risk score or diagnosis in the early stages of the disease is highly variable.
Because of this, Karlawish recommends that researchers and clinicians track the emotional and physical impact of a pre-clinical diagnosis, then develop and disseminate best practices.
The future will also present significant bioethical challenges; for example, when an effective Alzheimer’s intervention is found, a process will be necessary to ensure that patients who stand to benefit most are prioritized accordingly.
Both prognostic and predictive evidence should be gauged against not only an individual’s risk but the entire population at risk, especially if failure to intervene could cause large numbers of people to be impacted by any disease progression.
A “National Alzheimer’s Education Program” is proposed, to address how to translate research results into clinical practice for those with pre-clinical disease.
“The Alzheimer’s disease label does not equate to disability,” said Karlawish. In order to ensure that patients’ daily lives (i.e. driving, financial planning, work status) aren’t negatively or prematurely limited, laws and policies need to be revised to prevent stigma, discrimination and, when patients do suffer disability, exploitation.
“The discovery of pre-clinical Alzheimer’s disease may be how we prevent the tsunami of Alzheimer’s disease dementia, but we must not drown in the challenges created by our own discovery,” warned Karlawish.