I first met Gloria, a 25 year-old woman of Mexican-American descent, when she brought her 42 year-old mother into the general neurology clinic at UC Irvine in 1999. This clinic, located at the UCI Medical Center in Orange, largely serves the un- and under-insured, including many predominantly Spanish-speaking Hispanic persons. Gloria's mother, like 50% of the members of her family, was stricken by Alzheimer's disease (AD) of young onset and by age 42 was already in need of assistance with cooking, dressing, and many of the daily activities we take for granted. I knew from my training in behavioral neurology and dementia at the CADC at UCLA that this likely represented a highly genetic form of AD, the cause of which could be definitively identified through appropriate testing. I discussed this with Gloria and the decision to perform this testing was made. The test confirmed my suspicions. Though there was no cure for the condition, I did what I could to assist Gloria and her mother with pharmacological treatment and appropriate referrals. Little did I know this was the start of a long relationship.
This aggressive form of young-onset AD tends, perhaps not surprisingly, to be associated with downward socioeconomic mobility. Therefore, many such families do not have ready access to the kind of specialized counseling, diagnostic and treatment modalities that are required to manage this rare disorder. Luckily, many such families find their way to the CADCs where they are able to obtain this kind of help. The CADCs therefore help provide a framework in which communication between specialists regarding diagnostic and treatment options for such families can be achieved.
Ten years later, in 2009, I am still in close and frequent contact with Gloria. In the interim I initiated a productive research project based on families such as Gloria's in whom a genetic cause of young-onset AD can identified. Though discussion with other colleagues in dementia, we became aware of more such families being followed at the CADC at USC/Rancho Los Amigos. This collaboration helped us acquire funding from the Alzheimer's Association and the National Institute on Aging and a grant from the Alzheimer's Research Centers of California (the former name of the California Alzheimer's Disease Centers) helped to bolster this work that has led to important observations regarding presymptomatic diagnosis of the disease. It is only through ongoing referrals from the CADCs at UC Irvine, USC, and UCSF that this project can continue.
In California, the majority of persons affected by this familial form of AD are of Mexican descent. Latinos account for over 50% of the population of California. Unfortunately, access to health care for this group is sub-optimal due to socioeconomic, cultural, and language barriers. An unmet need in California (and nationwide) is culturally sensitive, Spanish-language diagnostic and treatment clinics. The CADCs have been pioneering in the effort to establish such clinics with the Centers at UC Davis and UCLA being particularly involved in this effort. Neuropsychologists at the CADC at UC Davis have made great strides in identifying Spanish-language cognitive instruments of utility in identifying cognitive impairment in the Latino persons of various degrees of acculturation and bilingualism. At both UC Davis and at the Los Angeles County Olive View Medical Center associated with UCLA, the clinics have a history of providing appropriate care for Latinos. These efforts are largely bolstered by CADC funds without which these clinics may not be possible.
Gloria's mother died this year and despite, or because of her grief, Gloria had arranged for her mother to make the ultimate contribution to research efforts in AD - her mother's brain was autopsied through the CADC at UC Irvine. Again, in the collaborative spirit of research, her brain will be shared amongst investigators within the CADCs as well as outside of California in an effort we hope will assist us in finding better treatments for this devastating condition.
- John Ringman, MD -