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U C L A A L Z H E I M E R ’ S D I S E A S E C E N T E R A L Z H E I M E R ’ S D I S E A S E R E S E A R C H C E N T E R O F C A L I F O R N I A K AT H E R I N E & B E N J A M I N K A G A N A L Z H E I M E R ’ S D I S E A S E T R E AT M E N T P R O G R A M The UCLA Focal-type Dementias Clinic
The UCLA Focal-type Dementias Clinic (FtD) specializes in the diagnosis and management of frontotem- poral dementia (FTD) and other focal neurodegenerative dementias such as progressive aphasia, semanticdementia, and posterior cortical atrophy. These disorders affect one specific part of the brain for many yearsbefore spreading to other brain regions. Although far less is known about FTD, formerly known as Pick’s dis-ease, than about Alzheimer’s disease, research during the last ten years has greatly increased our understandingof focal dementias. Discoveries indicate that FTD is not one condition but many related conditions, somewith progressive speech and language difficulty or aphasia and others with parkinsonism or other movementdisorders. Most FTD patients, however, begin with early and sometimes devastating changes in personality. The FtD Clinic, which is part of the UCLA Alzheimer’s Disease Center (ADC), is directed by Mario F.
Mendez, MD, PhD, a behavioral and cognitive neurologist and UCLA Professor of Neurology and Psychiatryand Jill Shapira, RN, PhD, a specialist in dementia care with over twenty years of experience in the manage-ment of FTD patients and their caregivers. The FtD clinic evaluates all focal brain degenerations associatedwith dementia and focuses on the unique problems posed by these disorders. In contrast to AD, focal demen-tias develop in persons in their forties, fifties, or early sixties, when they are still working or active. Caregiversneed particular guidance, information, and strategies focused on the unique behaviors caused by these disor-ders. For example, in FTD, changes in personality and social behavior can be difficult to understand andmanage. Patients with primary progressive aphasia, posterior cortical atrophy, and other focal dementia syn-dromes also have unique cognitive problems requiring specialized assessment and interventions. Patients with cognitive or behavioral disorders with a strong suspi- cion of underlying focal brain degeneration may be referred to theUCLA FtD Clinic for consultation. The evaluation process is usuallycompleted in two visits with scheduled tests between the two appoint-ments and may include a neuropsychological assessment, functionalbrain imaging, and specialized behavioral testing. In addition, neuroge-netic assessment is available. The FtD clinic sends referring clinicians asummary consultation report upon completion of the evaluation. Thisconsultation can provide the patient’s physician with medication andbehavioral management strategies, or the patient can be managedthrough the UCLA FtD Clinic. Education and counseling is also pro-vided to patients, families, and caregivers. To schedule an appointment, please call Jill Shapira, RN, PhD, at (310) 206-6516. Additional information may be obtained from Dr.
Mendez (310) 478-3711, ext. 42696 (VA Greater LA Neurobehavioroffice) or by calling the UCLA Alzheimer’s Disease Center at (310) The UCLA ADC is committed to cultivating cul- tural competence in its staff and respecting diversity in its patients. The UCLA ADC in collaboration with the USC ADRC and the Alzheimer’s Association of Los Angeles, Riverside, and San Bernardino Counties spon- sored Ethnicity and Dementia: Improving Patient Care on May 26, 2004 at the Radisson Hotel in Culver City.
This conference was attended by more than 60 faculty and community health care professionals who came together to learn assessment and diagnostic skills related As you will read in the following pages, important to dementia in an ethnically diverse patient population.
new research projects have been funded, exciting clini- The faculty included: Helena Chui, MD, Director Uni- cal trials are on-going, and efforts are continuing to versity of Southern California’s Alzheimer’s Disease bring the results of research to the health professional, Center, Jeanette Hilgert, MSG, MSW, Program Admin- istrator, Health Empowerment Initiative, Venice FamilyClinic, and Evelyn Lee Teng, PhD, Professor of Neurol-ogy, University of Southern California. The UCLA ADC presented a colloquium on Cross- Cultural Issues and Alzheimer’s Disease: An African-American Perspective on May 18, 2004 to UCLA social Usha Toland, MS, CGC is the
work students. This training focused on the specific social work issues related to working with African- American families that have a member diagnosed with Alzheimer’s disease (AD) or other related dementias.
Presenters included: Ernestina Saxton, MD, director, and Gloria Rodriguez, RN, coordinator, Memory Dis- order and Cerebral Function Clinic, Drew University, Kathleen Taylor, program manager, Education and counselor who obtained her master’s degree from UC Outreach, Alzheimer’s Association of Los Angeles, Berkeley. She has a strong interest in the genetics of Riverside, and San Bernardino Counties, and Karen neurodegenerative conditions as well as the psychosocial Lee, MSW, LCSW, field education consultant, UCLA impact that these diseases have on families. Julie Jacobson, BA is a new staff
member of the Kagan Alzheimer’s
Disease Treatment Progam. She
screens and triages all prospective
patients for the UCLA Memory
Disorders Clinic as well as provid-
ing research support to the staff.
Ms. Jacobson graduated from Cali-
fornia State University, Los Angeles in 2002 with a BAin Communication Disorders/Speech Pathology. Shehas decided to change career paths and is preparing toattend nursing school. Jeanette Hilgert, MSG, MSW, Venice Family Clinic, and Evelyn Lee Teng, PhD, Professor of Neurology, University of Southern California The Memory and Disorders Clinic at UCLA is focusing
and 54 Azteca (KAZA TV). In collaboration with the on the struggle to better understand and treat mild cog- Department of Aging, One Generation and the nitive impairments such as MCI (mild cognitive Alzheimer’s Association, the Memory Clinic celebrated impairment) and CIND (cognitive impairment non- “A Special Day For Caregivers,” June 16, 2004 from dementia). MCI is a term used to describe individuals 9:00 AM until 3:00 PM. The event featured presenta- with impairment in cognitive function, mainly mem- tions in Spanish on issues related to dementia and ory, who function normally in other cognitive areas and health risks factors, as well as other health related infor- who can carry out day-to-day activities without assis- mation. The event took place at ONE Generation, tance. Individuals with MCI are at increased risk 18255 Victory Blvd. Reseda, CA 91335. If you are (approximately ten-fold) for developing dementia in interested in more information or wish to make an subsequent years. CIND, on the other hand, is a condi- appointment for yourself or a loved one, please contact tion that causes impairment in one or more non-mem- Mary Anne Sanchez at the OV Memory Clinic at (818) ory domains (such as language or the ability to plan complex activities), yet still does not meet criteria for The Memory Disorders and Cerebral Dysfunction
dementia. The fate of individuals with CIND is not as Clinic at Charles R. Drew University continues to pro-
clearly defined as those with MCI; therefore, more vide initial and follow-up assessments, as well as special careful characterization and longitudinal follow-up is activities for the community in south central Los Ange- les. For example, the popular monthly caregiver break- The clinic plans to recruit many otherwise healthy fast has expanded to include a Men’s Only support MCI and CIND patients as well as normal control group, facilitated by Dr. Tony Strickland. In addition, individuals that would like to participate in clinical trials several of our caregivers have become involved with the and/or be followed longitudinally. We are confident Advocacy Committee of the Alzheimer’s Association.
that the support of our community and professional Turusew Wilson is a Drew caregiver who arrived at our partners together with our own unwavering dedication clinic two years ago desperate for answers and guid- will help us learn more about the treatment of MCI ance. She found the information she needed, but then and CIND. For more information, please contact the she became concerned for those in her community who UCLA Memory and Disorders Clinic at (310) 825-8908.
knew very little about dementia. She took action by The Neuropsychiatric Research Memory Clinic at
hosting a well-attended viewing of “The Forgetting” at the Olive View-UCLA Medical Center (OVMC) is
a local Ethiopian restaurant. Ms. Wilson went on to embarking on several new ventures. OVMC has estab- receive a full scholarship from the Alzheimer’s Associa- lished a collaborative working relationship with the tion to attend the 16th Annual Public Policy Forum in Geriatric Department at the Autonomous National Washington, D.C. March 20-23, 2004. She now serves University in Mexico (Universidad National Autonoma not only as a source of information for her friends and de Mexico, UNAM). It has helped establish the Treat- family from Ethiopia, but as an advocate in the halls of ment Memory Clinic at Olive View-UCLA Medical Congress. Ms. Wilson believes, “The more effectively Center. The Clinic opened its doors May 20, 2004 and we communicate with our elected officials, the more is directed by Shelley Wolf, MD. This Clinic provides effective the representative system of government an important service to patients who are diagnosed at becomes. There is now real hope for a future without the Memory Clinic and then need to seek treatment.
Alzheimer’s disease: keep the faith and keep advocat- The Memory Clinic continues to address the public ing.” We at Drew are very proud of caregivers like through presentations on channels 52/22 Telemundo Turusew who are dedicated to making a difference. Alzheimer’s Disease Genetics Study Seeks Recent estimates indicate that the number of people asked to donate a blood sample that will be made into a with AD will skyrocket in the next few decades to as cell line (a family of cells grown in the laboratory) that many as 13 million by 2050. Scientists are eager to will enable the person’s DNA to be available to quali- speed up research efforts to understand the causes and fied scientists over many years. The data and cell lines risk factors for AD. The National Institute on Aging will be stored at a central repository at Indiana Univer- (NIA), a branch of the National Institute on Health sity’s the National Cell Repository for Alzheimer’s Dis- (NIH), has established a national program to identify ease (NCRAD). An important aspect of the study is families with multiple members affected with the con- patient confidentiality. All blood samples and health dition in order to illuminate the underlying disease information are coded, and identifiers such as name process of AD, open up novel areas of research, and and date of birth are removed from all materials. identify new targets for drug therapy. The UCLA ADC Participants may live anywhere in the U.S., and fam- has been selected as one of the study sites to help iden- ily members do not need to live near each other. There tify 1,000 families with at least two siblings who have is no cost to participants. Families who are interested in been diagnosed with late-onset AD (diagnosed at 60 learning more about the Alzheimer’s Disease Genetics Study or who would like to participate should contact: AD genes as well as the genes for other human dis- eases have been located by studying families with multi- Genetic Counselor & Research Coordinator ple cases of the disease in question. It is very difficult to locate one risk factor gene out of the 30,000 or so genes that are contained within the human cell.
Researchers believe that there are other risk factor genesfor AD and, to date, have identified 4 different chro-mosomal regions where these genes could be located.
The further collection and analysis of families withmultiple affected individuals will help identify these Help fund research for the care and cure of
Alzheimer’s Disease
To be eligible to participate in the study, families must have at least 3 living members who can donate a Enclosed is my tax deductible contribution of__________________ Please note that this contribution is in Memory Of _ Honor Of _ • 2 siblings (brothers or sisters) who developed AD
_____________________________________________________ after age 60,
Please send an acknowledgement of this gift to: and
Name_________________________________________________ • Another family member over age 50 who may have
Address _______________________________________________ memory loss OR a family member over age 60
City______________________ State________ Zip ____________ who does not have any memory loss.
Donor Name ___________________________________________ If a family member is no longer living, but there is Address _______________________________________________ frozen autopsy tissue available, then the family may stillbe eligible to participate.
City______________________ State________ Zip ____________ Participants will be asked to complete a telephone or in-person interview to gather medical and family his- tory information, give permission for their medical records to be reviewed, and have a medical exam with 710 Westwood Plaza, Suite 2238Los Angeles, CA 90095-1769 memory testing, if needed. Participants also will be The Memory Club: An Early Stage Alzheimer’s Disease Program Imagine that you have just been told, “You have early family, the Alzheimer’s Association of Los Angeles, stage Alzheimer’s disease.” What is early stage AD? You Riverside and San Bernardino Counties has started an may have noticed some memory lapses, such as forget- educational support group for people with early stage ting people’s names, getting disoriented when driving, AD and their families. The program is called the Memory or having difficulty with finances. Since many of these Club. The Memory Club includes an initial family changes can be explained by stress or fatigue, why look consultation, participation in a ten-week education/ for a disease diagnosis? However some of these mild support group (information is provided in a large group symptoms also may be the first signs of early stage AD.
setting, and there are separate support groups for indi- Experts have begun to look at AD as a continuum viduals experiencing memory loss and for their care starting with MCI that may or may not lead to early partners), follow-up family consultations, and finally, for those members interested in the continuation of a A first sign of early stage AD is difficulty remember- group, The Graduation Club. For more information ing recent events. It may be accompanied by signs and about The Memory Club, please contact Michelle Bar- symptoms of depression that can exacerbate the mem- clay, MA in the San Fernando Valley at (818) 677- ory loss. Recognizing that early stage AD has unique 4404 or Michelle De Los Santos, LCSW in the Los characteristics and special impact on the individual and The renewal of the ADRC included funding for synapse loss. This project will not only better define the role of oxidative damage, but will also compare current • George Jackson, MD, PhD, assistant professor in and novel therapeutic agents of direct clinical relevance. residence, neurology will lead a project to identify The Alzheimer’s Disease Program of the California and investigate the compounds that suppress neu- Department of Health Services awards grants for rofibrillary pathology, using the drosophila (fly) research projects. The funds for these awards come model. This project contributes to the commitment from California taxpayers who make a tax-deductible of the ADRC to foster research that will lead to iden- contribution on their tax returns. Two ADC investiga- tification of disease-modifying therapies for AD and tors have received these grants, starting July 2004.
Bruce Teter, PhD, assistant adjunct professor, medicine, • George Bartzokis, MD, director, UCLA ADC Clini- will investigate the mechanisms of apolipoprotein E cal Core, Arthur Toga, PhD, professor, neurology, (apoE), the strongest genetic risk factor for sporadic and Paul Thompson, PhD, assistant adjunct profes- AD. John Ringman, MD, director of the Kagan Treat- sor, neurology will lead a project to investigate and ment Program, will investigate: subtests in validated apply strategies with unprecedented sensitivity to Spanish neuropsychological batteries to determine if detect, map, and analyze patterns of brain change they are sensitive to early AD in pre-clinical carriers of (structural and functional) in AD and in those at risk Presenilin-1 (PS1), what psychopathology is prevalent for AD. This project blends neuroscience and engi- in otherwise pre-symptomatic PS1 mutation carriers, neering strategies to address extremely pressing chal- and what biochemical markers of AD are present in persons at-risk for the inheritance of PS1 mutations.
These results will assist in the early diagnosis of AD in • Greg Cole, PhD, associate director of the UCLA general and especially in the underserved Hispanic ADC, and Karen Gylys, PhD, assistant professor, School of Nursing, will lead a project to research therole of oxidative damage in AD pathogenesis and You Can Help Discover the Treatment for Alzheimer’s Disease Researchers have made great strides in the laboratory, con- tributing immensely to our understanding of the causes and the The UCLA Benjamin and Katherine Kagan Alzheimer’s Dis- process of AD. This laboratory work has led to the development ease Treatment Program has multiple studies for various stages of of drugs that may be safe and effective for preventing, slowing the the illness. The following chart provides an overview of these course of, and improving the symptoms of AD. A large number studies. If someone you know has been diagnosed with AD or of drugs, under the auspices of the National Institute on Aging mild cognitive impairment and might be interested in participat- and private pharmaceutical companies, are in various stages of ing, please contact us. We would be very happy to discuss the var- development. The usefulness of these drugs must be tested on ious clinical trial opportunities and answer your questions or humans in clinical trials. We cannot evaluate potential treatments concerns. Please call (310) 206-3779.
for preventing or treating AD without the participation of our Condition Being Studied
Medication Being Tested
Eligibility Criteria
• Two clinic visits with neurologist, 3 • Eight clinic visits with neurologists• Caregiver needed • Eight clinic visits with neurologists • Neuropsychological testing• Clinical Laboratory Testing• Seven clinic visits with neurologists• Caregiver needed • Clinical Laboratory Testing• Twelve clinic visits with neurologists• MRI Testing• Caregiver needed The UCLA Alzheimer’s Disease Center would like to thank our many friends and donors for their support in fighting Alzheimer’s disease. These private donations help fund the innovative health services and clinical and basic science research projects that support the Center’s commitment to Jeffrey L. Cummings, MD
Gregory M. Cole, PhD
improving lives of patients with Alzheimer’s disease. If you would like to Karen Metz, MA
join this list of friends, please contact Karen Metz, ADC Administrator at George Bartzokis, MD
Po Lu, PsyD
Memorial Contributions
Michele Carter, RN
Usha Toland, MS, CGC
John Ringman, MD
Kavita Shankar, PhD
L. Jaime Fitten, MD
Freddy Ortiz, MA
Mary Anne Sanchez
Tony Strickland, PhD
Ernestine Saxton, MD
Paul Longobardi, PhD
David Richardson, PhD
Gloria Rodriguez, RN
Harry Vinters, MD
Dan Geschwind, MD, PhD
Dennis Chute, MD
Martina Wiedau-Pazos, MD, PhD
Janet Frank, DrPH
Diane Katz, MA, MPH
Jim Mintz, PhD
Other Contributions:
Sun Hwang, MPH
Bowen H. & Janice Arthur McCoy Charitable Gary Small, MD
Arthur Toga, PhD
Dan Silverman, MD, PhD
George Bartzokis, MD
Greg Cole, PhD
Sally Frautschy, PhD
Paul Thompson, PhD
George Jackson, MD, PhD
Barbara Vickrey, MD, MPH
Memory Disorders Clinic
General Information
UCLA Medical Center
SEPT. 29 - OCT. 2, 2004
21st Annual Intensive Course in
Geriatric Medicine and
The UCLA ADC Newsletter is pub-
Board Review
Intensive Course in Geriatric
Pharmacy and Board Review
Memory Disorder and Cerebral
publication, or for any inquiries, please Dysfunction Clinic
Drew University School of
Medicine
Neuropsychiatry Research
Memory Clinic
Olive View Medical Center
14445 Olive View Drive

Source: http://www.npistat.org/adrc/newsletters/summer2004.pdf