Complaints Force Changes at Center for Dementia Patients

The state Department of Health Services has forced a Los Alamitos facility for dementia patients to change its procedures because of complaints against UC Irvine medical professors performing research there.

The researchers were taking samples from the noses and rectums of patients without their permission or that of their guardians as part of a project to check for the spread of germs resistant to antibiotics.

In addition, the family of Julia Ciolek, 86, a patient at the John Douglas French Center for Alzheimer’s Disease, filed a lawsuit this week based on similar complaints. Among the defendants in the suit are three UCI professors, Drs. Yee-Lean Lee, Lauri Thrupp and Laura Mosqueda and the French Center.

Diana Eastman, director of public relations for the French Center, said the facility’s policy has always required consent for an invasive or experimental procedure or one that involved a risk to the patient. She said taking the samples in the UCI project was not considered invasive.

After finding problems, the state forced the center in May to come up with a plan to correct them.

Under the new policy, consent will be required for patients involved in any research project, even if it merely includes looking at their chart.

Representatives for UCI said they could not comment on the suit because they had not seen it. Karen Newell Young, a spokeswoman for UCI, said no one there was familiar with the state action.

The Department of Health Services investigated last March and April after receiving a complaint, said Jacqueline Lincer, Orange County district manager for the department’s licensing and certification division.

The investigation found problems occurred on three occasions in February and March 1999 involving many residents. Investigators then looked at a sample of six of those residents in the facility and found neither they nor their guardians had given consent to allow the procedures to take place.

The 146-bed French Center, which opened in 1987, is a care, education and research facility for patients with all types of dementia. It continues to undertake research projects with UCI, Eastman said, and has worked with USC and UCLA.

The lawsuit, filed by Ciolek’s family, says that carrying out the tests without consent is a violation of her rights. The suit also says untrained or unlicensed staff obtained the nasal and rectal specimens. It also says the plaintiffs did not have permission to use Ciolek’s confidential medical records.

The suit says the project used “elderly and dependent skilled nursing facility residents as human research subjects.”

The suit charges invasion of privacy, battery, fraud and elder abuse. The suit does not specify money damages.

Eastman said the French Center did not consider gathering the samples with cotton swabs invasive. She said nurses procured them and that many of the patients were having diapers changed several times a day.