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 of Pennsylvania. The new study, published in the December 19th, 2012, issue of Neurology, the medical journal of the American Academy of Neurology, demonstrates that additional recruitment and retention strategies may be required to increase enrollment of AD patients with caregivers other than spouses.

Alzheimer's trials - which require both the patient with Alzheimer's and a reliable study partner to enroll together - often struggle to recruit enough patients. In this study,two-thirds of Alzheimer's clinical trial participants were accompanied by their spouse, in contrast to the national average showing that 68 percent of people with Alzheimer's primarily receive care from their children, children-in-law or grandchildren. The study also found that AD participants with a study partner who was neither a spouse nor an were more likely to drop out before the study completed. In addition, these participants were more likely to suffer a serious adverse event during the trial.

"The majority of Alzheimer's patients are cared for by caregivers who are not their spouses, but we discovered that in Alzheimer's disease clinical trials, most patients' caregivers are their spouses," said senior study author Jason Karlawish, MD, co-director of the Penn Memory Center and professor of Medicine, and in the Perelman School of Medicine at the University of Pennsylvania. "This result is a call to action. Nonspousal caregivers and the patients they care for represent an untapped opportunity to increase recruitment into Alzheimer's and to assure that the research results reflect the broad community of and their caregivers."

The study also found variations in demographics that may be relevant to clinical trial designs. For example, only five percent of participants across the trial were Hispanic and those with an adult child study partner were twice as likely as those with spouse partners to be Hispanic. In addition, six percent of participants were African-American and those with adult child study partners were nearly three times as likely to be African-American as those with spouse study partners. And, while the ratio of men and women with Alzheimer's disease was similar, the majority of study partners/caregivers were female.

Explore further: Penn expert addresses ethical implications of testing for Alzheimer's disease risk

Related Stories

Penn expert addresses ethical implications of testing for Alzheimer's disease risk

July 17, 2012
Diagnostic tests are increasingly capable of identifying plaques and tangles present in Alzheimer's disease, yet the disease remains untreatable. Questions remain about how these tests can be used in research studies examining ...

Recommended for you

Personality changes don't precede clinical onset of Alzheimer's, study shows

September 21, 2017
For years, scientists and physicians have been debating whether personality and behavior changes might appear prior to the onset of Alzheimer's disease and related dementias.

Newly ID'd role of major Alzheimer's gene suggests possible therapeutic target

September 20, 2017
Nearly a quarter century ago, a genetic variant known as ApoE4 was identified as a major risk factor for Alzheimer's disease—one that increases a person's chances of developing the neurodegenerative disease by up to 12 ...

Is the Alzheimer's gene the ring leader or the sidekick?

September 15, 2017
The notorious genetic marker of Alzheimer's disease and other forms of dementia, ApoE4, may not be a lone wolf.

Potential noninvasive test for Alzheimer's disease

September 6, 2017
In the largest and most conclusive study of its kind, researchers have analysed blood samples to create a novel and non-invasive way of helping to diagnose Alzheimer's disease and distinguishing between different types of ...

Researchers unlock the molecular origins of Alzheimer's disease

September 6, 2017
A "twist of fate" that is minuscule even on the molecular level may cause the development of Alzheimer's disease, VCU researchers have found.

Is dementia declining among older Americans?

September 5, 2017
(HealthDay)—Here's some good news for America's seniors: The rates of Alzheimer's and other forms of dementia have dropped significantly over the last decade or so, a new study shows.

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.