"Bioethics and Alzheimer's Disease," a daylong conference on the moral, legal and medical issues related to the debilitating neurological disease, will be held from 8:30 a.m. to 4 p.m. Saturday at the Newporter in Newport Beach.
The public is invited to attend the conference, which is sponsored by the Orange County chapter of the Alzheimer's Disease and Related Disorders Assn. (ADRDA). A fee of $30 includes lunch; reservations may be made by calling the ADRDA office at (714) 631-0245.
Dr. Robert Katzman, chairman of the department of neurosciences and director of neurology at the School of Medicine at UC San Diego, will give the opening address.
Dr. Jerome Tobis, professor and director of geriatric medicine at UC Irvine, will introduce the guest speakers, who include: Deborah Ann Pugh, director of education for St. Joseph Health System in Orange, who will speak on the moral perspective; Beverly Hills attorney Vicki Michel, who will discuss the legal perspective; Dr. Bernard Lo of the division of general internal medicine at UC San Francisco, who will explore the medical perspective, and Glen Doyle, assistant clinical professor in the department of family health care nursing at the School of Nursing at UC San Francisco, who will discuss the nursing perspective.
Daniel Wikler, a professor in the medical ethics program and the history of medicine department at the University of Wisconsin, will deliver the closing remarks.
ADRDA is a nationwide, nonprofit voluntary health organization dedicated to family service education and research on Alzheimer's disease, a progressive, debilitating and eventually fatal neurological disease.
The cause of the disease, which affects an estimated 2.5 million American adults, is not known. Typical symptoms include progressive memory loss, decline in ability to perform routine tasks, impairment of judgment, confusion, disorientation, personality change, difficulty in learning and impaired speech and communication. In severe cases, the disease renders its victims totally incapable of caring for themselves.
"It's absolutely devastating for the patient, the family and society as well--it's an overwhelming problem," said Joan Dashiell, founder and president of the Orange County ADRDA chapter.
"Frankly," said Dashiell, "the issue of the terminal Alzheimer patient has become so enormous that the families have very little control over the decisions being made: whether or not to begin, say, tube feeding, or whether or not to initiate antibiotics if the patient develops pneumonia, and basically whether extraordinary means should be made to continue the life of the terminal Alzheimer patient.
"There needs to be much more discussion as to what options are available and, particularly what kind of legal, medical, ethical, emotional and spiritual issues (are involved), in order to help the family explore the decision."
Dashiell anticipates "a good mixture of professionals and family members" at the conference.
"What we'd like to see as the outcome of the conference is to bring the issue to the table so we can get some agreement that there can be decisions made that have the support of all facets of society."
Dashiell has a first-hand knowledge of the disease, which she estimates affects more than 30,000 Orange County residents over the age of 65: She cared for her 83-year-old mother for three years until 1982 when, she said, "the burden got to be too much."
"She's in a board-and-care facility in Mission Viejo and suffers extremely from Alzheimer's," said Dashiell, adding, "I will probably be faced with these decisions down the road."
Dashiell, who founded the Orange County chapter of ADRDA in 1982, said the organization has four major goals: to support research of Alzheimer's disease, to set up family support groups, to educate the public and to support legislation--"because right now the shocking thing is that there is no financial assistance for Alzheimer families."
By the turn of the century, Dashiell noted, "statistics show that 37% of America will be over the age of 65, so that's why this is really a crucial issue. Unless we get a hold on this disease, my God, I don't know how we're going to fund it."