"We need to develop systems now, to navigate the challenges of a pre-clinical Alzheimer's diagnosis," Dr. Jason Karlawish, a professor of medicine and medical ethics at the Perelman School of Medicine at the University of Pennsylvania who was the study author, says in a statement.
"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."
People strongly differ in their desire to know their risk and will react differently to a high Alzheimer's risk score or diagnosis in the early stages of the disease.
In some cases, biomarker test results can be harmful because patients may develop anxiety or serious depression, Karlawish says.
To safely and effectively communicate a diagnosis of pre-clinical Alzheimer's disease, Karlawish recommends researchers track the emotional and physical impact of a pre-clinical diagnosis, then develop and disseminate best practices.
When an effective Alzheimer's therapy or intervention is found, a process will be necessary to ensure the patients who stand to benefit most are prioritized accordingly, the researchers say.
"The Alzheimer's disease label does not equate to disability," Karlawish says. "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."
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