Policy changes urgently needed as millions to start receiving early label of Alzheimer's

April 8, 2014, University of Pennsylvania School of Medicine

How will we, as individuals, and a society, live with brains at risk for Alzheimer's disease dementia? As part of Health Affairs' April issue, a theme issue focusing on Alzheimer's, a neurodegenerative disease ethicist and clinician with the Perelman School of Medicine at the University of Pennsylvania offers keen observations to help navigate ethically-charged points on the course of the disease progression.

"The new concept of Alzheimer's disease, as a spectrum of diseases ranging from people with pathological biomarkers but no symptoms, to those with , raises many ethical and policy-related questions for individuals and society as to how we will live with Alzheimer's disease" notes Jason Karlawish, MD, professor of Medicine, Medical Ethics and Health Policy and associate director of the Penn Memory Center. "Unlike other diseases of aging, where people learn they are at a higher risk or in the process of developing symptoms that could precipitate an acute and obvious event, such as a stroke, heart attack or hip fracture, society has not prepared or adjusted for someone to be labeled as 'likely to have Alzheimer's disease ' at some time in the future."

One in three seniors dies with Alzheimer's or another dementia and more than 15 million family and friends serve as caregivers to those with the disease, making Alzheimer's the most expensive condition in the United States. It affects an individual's ability to make decisions and perform daily tasks, such as taking medications safely. The progressive, untreatable illness affects not only patients, but caregivers as well. Progress in diagnostics and studies to develop prevention treatments may, in the coming years, expand the diagnosis to include persons who are asymptomatic but at risk of developing dementia caused by Alzheimer's disease.

Dr. Karlawish offers suggestions for society and individuals to adapt and prepare:

  • Prepare legal, banking and financial service providers to be able to competently assess an individual's decision-making ability. Studies show that Alzheimer's patients - even at mild and moderate stages of the disease - often believe they are more capable at making decisions than their caregivers and physicians see. While patients may be able to express a choice, they may have impairments in their ability to understand and appreciate how an intervention could impact them.
  • Caregivers of Alzheimer's patients should be offered or even prescribed to attend caregiver training, just as nutritional consultations and education are part of routine diabetes care.
  • Electronic Medical Records (EMRs) should be modified to provide access to caregivers and record their roles.
  • Hospice care should be aligned with goals of care for patients with advanced dementia, rather than waiting until the last 6-months of life as currently required for insurance coverage.
  • Prediction models and treatment algorithms will need to be developed as "biomarker positive" people are identified to have a brain at risk before symptoms emerge.
  • Legal reforms should be sought to minimize discrimination in employment and insurability as people are deemed at risk in pre-clinical stages.

"Whether as patients or as caregivers, we all have Alzheimer's disease," says Karlawish. "The question we must engage with is, How should we live with it?"

Dr. Karlawish's work is supported by a Robert Wood Johnson Foundation Investigator Award in Health Policy Research and the Marian S. Ware Alzheimer's Disease Program.

Explore further: Alzheimer's prevention trial to evaluate, monitor participants' reactions to learning of higher disease risk status

Related Stories

Alzheimer's prevention trial to evaluate, monitor participants' reactions to learning of higher disease risk status

March 19, 2014
A new clinical trial will soon begin testing whether early medical intervention in people at risk for Alzheimer's can slow down progression of disease pathology before symptoms emerge, as outlined in Science Translational ...

Alzheimer's strikes women harder than men, report finds

March 19, 2014
(HealthDay)—A 65-year-old American woman has a 1 in 6 chance of developing Alzheimer's disease later in life, while a man the same age has about a 1 in 11 chance.

Need for dementia caregivers grows as boomers age

December 17, 2013
World leaders set a goal for a cure or treatment for dementia by 2025 at the recent G8 summit in London.

Safeguards needed to prevent discrimination of early Alzheimer's patients in the workplace

September 15, 2011
The changing tide of Alzheimer's diagnosis presents new challenges to the public, physicians and lawmakers: if you could find out your Alzheimer's risk, would you want to know? How should doctors tell you your risk? And what ...

New research suggests connection between white matter and cognitive health

April 7, 2014
A multidisciplinary group of scientists from the Sanders-Brown Center on Aging at the University of Kentucky have identified an interesting connection between the health of the brain tissue that supports cognitive functioning ...

Alzheimer's patients with non-spousal caregivers are less likely to participate in clinical trials

December 19, 2012
People with Alzheimer's disease are less likely to participate in a clinical trial if they have non-spouse caregivers, according to a study by a team of researchers including the Perelman School of Medicine at the University ...

Recommended for you

Rocky start for Alzheimer's drug research in 2018

January 19, 2018
The year 2018, barely underway, has already dealt a series of disheartening blows to the quest for an Alzheimer's cure.

Alzheimer's disease: Neuronal loss very limited

January 17, 2018
Frequently encountered in the elderly, Alzheimer's is considered a neurodegenerative disease, which means that it is accompanied by a significant, progressive loss of neurons and their nerve endings, or synapses. A joint ...

Anxiety: An early indicator of Alzheimer's disease?

January 12, 2018
A new study suggests an association between elevated amyloid beta levels and the worsening of anxiety symptoms. The findings support the hypothesis that neuropsychiatric symptoms could represent the early manifestation of ...

One of the most promising drugs for Alzheimer's disease fails in clinical trials

January 11, 2018
To the roughly 400 clinical trials that have tested some experimental treatment for Alzheimer's disease and come up short, we can now add three more.

Different disease types associated with distinct amyloid-beta prion strains found in Alzheimer's patients

January 9, 2018
An international team of researchers has found different disease type associations with distinct amyloid-beta prion strains in the brains of dead Alzheimer's patients. In their paper published in Proceedings of the National ...

Advances in brain imaging settle debate over spread of key protein in Alzheimer's

January 5, 2018
Recent advances in brain imaging have enabled scientists to show for the first time that a key protein which causes nerve cell death spreads throughout the brain in Alzheimer's disease - and hence that blocking its spread ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.