Volume 13, Numbers 1-2 Alzheimer’s Disease Education & Referral Center 2005

New Bosnian video on ADavailable ....8

Clinical trialsupdate....5

New additions toCHID ....9

New Spanish publicationsavailable ....8

Calendar ofEvents ....11

News From the Alzheimer’s Disease Education and Referral (ADEAR) Center, A Service of theNational Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services

Earlier AD diagnosis creatingdemand for early-stage supportgroupsMany people are being diagnosed earlier in the course ofAlzheimer’s disease (AD) because of improving sensitivityand specificity of diagnostic techniques and increasedawareness of the disease. Health care professionals, theAlzheimer’s Association, and other organizations areresponding by offering a broader range of support servicesto ease the emotional and social strains of people withearly-stage AD and their families. As these support pro-grams expand, new research is finding that people withearly-stage AD retain more cognitive capacity thanpreviously thought.

People with early-stage AD often have preserved personal-ity and coping skills and remarkable awareness of them-selves and their symptoms. However, they may experienceconsiderable distress, embarrassment, and isolationbecause of perceived stigma of the disease. Thus, theyare seeking, along with their family members, new copingstrategies, meaningful activity, and mental stimulation.They are eager to educate themselves, to share commonexperiences, and to break potential barriers and isolationimposed by the early diagnosis and symptoms of AD.

(see Early-Stage Support Groups, page 2)

NIA adds 2 ADCs to researchnetworkThe National Institute on Aging (NIA) is pleased to an-nounce the addition of two Alzheimer’s Disease Centers(ADCs) serving the southeastern U.S.: the University of SouthFlorida (USF), headquartered in Tampa, and Emory Univer-sity in Atlanta, Georgia. More than 10 percent of theNation’s AD patients—an estimated 600,000—live in thesetwo States. Emory University was fully funded as an ADCfrom 1991 until 2000 and has been an Affiliate Centerunder the NIA program since 2000. USF’s staff and facilitiesare new to the NIA research network.

The NIA has worked with local scientists and officials in thesoutheastern U.S. for some time to expand the ADCnetwork. “Not only are we now able to extend much-needed diagnostic, treatment, and education services to

(see New ADCs, page 6)

New booklet from ADEAR

Can Alzheimer’sdisease beprevented?A new free 28-page booklet fromthe Alzheimer’s Disease Educationand Referral (ADEAR) Center—CanAlzheimer’s Disease be Prevented?—provides the latest researchfindings on risk factors for AD. Itdescribes the ongoing search for prevention strategiesand how heart disease, high blood pressure, diabetes andinsulin resistance, and inflammation may affect develop-ment of AD.

The booklet discusses intriguing new research from obser-vational studies and discusses thought-provoking theories

(see New Booklet, page 5)

Connections Volume 13, Numbers 1-2page 2

EarlyEarlyEarlyEarlyEarly-----Stage SupportStage SupportStage SupportStage SupportStage SupportGroupsGroupsGroupsGroupsGroups(from page 1)

What exactly is a supportgroup?The Alzheimer’s Disease Educationand Referral (ADEAR) Center receivesthousands of calls and e-mails a yearfrom families, professionals, andpeople living with AD who need helpin addition to medical care. Theymay be seeking respite, a safe placeto express concerns, tips for care,resources, or just reassurance thatthey are not alone. ADEAR informa-tion specialists often refer the caller toa local office of the Alzheimer’sAssociation, whose services include avariety of support groups led by acaring, compassionate group ofhealth care professionals and/ortrained volunteers.

Although support groups vary instructure, format, membership, andleadership, all offer a forum foreducation and learning as well as apositive, safe, and nonjudgmentalplace to discuss concerns forpeople with AD and their familymembers, together or separately.Many diagnosed people and theirfamily members acknowledge theneed to connect with others who arefacing similar challenges, loss,anxiety, confusion, depression,isolation, and grief, and specializedsupport groups may offer the righthelp at the right time.

Early-stage supportgroupsWithin the last decade, a number ofsupport groups specific to theunique needs of people with early-stage AD and their families havebeen established. With greaterpublic awareness, earlier diagnosis,and advocacy to reduce the socialstigma of AD, there is greater de-mand for this early-stage support.

Generally, most support groups offerparticipants an opportunity to sharecommon personal experiences with

others in similarsituations. Early-stage supportgroups areusually facilitatedor led by aprofessional and/or a trainedvolunteer andcommonly meetonce a week for6, 8, or 10weeks. Partici-pants canexpect to sharecommonexperiences, andlearn tips fromthe insights and materials prepared bythe professional or trained facilitators.Some sessions are for both carepartners, and others are mainly forpeople living with the diagnosis of AD.When people with AD talk with eachother, common themes come up,such as dealing with loss of indepen-dence and driving, money manage-ment, self-esteem, how to tell othersabout the diagnosis, and how toreduce embarrassment or fear ofmaking mistakes in social situations.

Detecting AD earlyResearchers and experiencedclinicians agree that diagnosing ADin its earliest stages can be highlybeneficial: the patient can seekoptimal early treatment, participate inclinical trials, deal with emotional andpractical issues, and make decisionswith his/her family that reflect long-held values and beliefs. However,knowing the diagnosis earlier can takea significant emotional and psycho-logical toll on the person with AD. LisaGwyther, MSW, CCSW, AssociateClinical Professor, Department ofPsychiatry and Behavioral Sciences atthe Duke University Alzheimer’sDisease Center in North Carolina, saysthat “people with early-stage AD mustaddress questions of how much totell, to whom, and when, long beforetheir disability may be recognized byothers. It is extremely important thatpeople with early-stage AD and theirfamilies get timely, consistent, open-ended support in learning to copeeffectively and even thrive over time.

People with AD retain a capacity forpleasure and take joy in nourishingand sustaining relationships.”

Several types of support groups meetat Duke University Medical Center.Gwyther believes that people with ADneed to find a comfortable level offamiliar routines and social opportuni-ties in their daily lives. Sometimes,because of geographic isolation orother constraints, this can best beachieved in a dependable weekly ormonthly support group. She finds thatpeople with early-stage AD are willingand quite open, in most cases, todiscuss their concerns with othersupport group members who be-come friends over time.

A recent NIA-supported study con-ducted by the Rush University MedicalCenter in Chicago found that whilepeople with early-stage AD hadidentifiable characteristics andmemory problems, they did not havethe more serious cognitive problemsfound in mid-stage AD. These prob-lems include confusion and disorien-tation, performance issues in social orwork settings, or inability to planahead. This research suggests that,although hampered by memorydeficits, people with early-stage ADcan participate in many daily activi-ties, including active involvement in asupport group.

Support group structureGenerally, there are two major typesof early-stage AD support groups.

Volume 13, Numbers 1-2 Connections page 3

One model is the structured, time-limited, 6- to 10-week group of about20 to 30 people (including bothcaregivers and the person with AD)attending for one to two hours at atime. The participants are providedwith a list of topics to be discussed,by whom, and in which session(s).Guest speakers share expertise inparticular subjects, such as the legalor financial burdens facing a familycaring for a person with AD. In someprograms, caregivers and carepartners meet in separate butconcurrent groups. In other pro-grams, the person with AD and his orher caregivers are usually togetherfor half of each session and thenseparated for the second half.Experts say this can encouragefreedom to discuss issues or expressconcerns without the presence ofthe respective caregiver or diag-nosed person.

At the end of the time-limited early-stage AD support group model,participants are encouraged to takeadvantage of existing communityresources for more help, or toattend, if available, support groupsthat cater to the needs of mild-to-moderate AD. Some time-limitedgroups offer monthly “graduategroups” that afford participants theopportunity to continue meeting orto develop social networks. Some-times these graduate groups focuson providing social activities and thesocial framework for leading anormal and healthy life (within thecontext of the limitations of early AD).

Researchers have found that, inmany cases, AD families maywithdraw or be gradually excludedfrom their usual social groups,friendship circles, or network offormer work colleagues. AnAlzheimer’s Association chapter maysponsor multigenerational pot luckdinners or trips to an outdoor concertor a bowling alley. Because of theirnon-demanding social nature, theseactivities would be appropriate forpeople in the moderate stages ofAD. Sue Stone, of the Family DayCenter in Fairfax, Virginia, says,“Alzheimer’s patients need compan-

ionship and laughter through socialsituations almost as much as theyneed to learn what they shouldexpect in the upcoming months andyears ahead. We are focused ongetting through today rather thanwhat’s going to happen tomorrow.”

The second main type of early-stagesupport group is the “ongoing” model.It is less structured and gives partici-pants the opportunity to initiate topicdiscussion and process complexissues over an extended period oftime. Participants with AD may be inthe group anywhere from manymonths to a number of years,depending on the rate of declineand their continued ability to partici-pate meaningfully in group discussion.These weekly ongoing groups canalso give families the opportunity tobuild long-term relationships.

There are many other types ofsupport groups that are organized tohelp meet some of the needs ofpeople with early-stage AD. Theyfeature programs offering participantsvolunteer work, art, writing, andvocational pursuits.

Where are groupsemerging?In many areas of the country, theAlzheimer’s Association, NIA-fundedAlzheimer’s Disease Centers (ADCs),and other organizations have createdearly-stage support groups. As healthprofessionals gain experience andfine tune their approaches, they arealso now offering more specialized,culturallydiverse pro-grams. Butthere are stillmany placeswhere lack ofresources andskilled medicalservices resultsin fewer early-stage diag-noses. Thatmeans lessawareness,less demandfor local

services, less education, and morepotential social stigma of AD.

Who can participate?To participate in an early-stagesupport group, people with AD andtheir care partners are usuallyscreened by a clinical professional ora social worker. A comprehensiveassessment or an interview will estab-lish if the person with AD has theemotional, cognitive, and behavioralskills to function successfully in agroup. Participation also may bebased on whether the person with ADhas a willing and able partner toescort to and, in most cases, partici-pate in the sessions.

Robyn Yale, a social worker in SanFrancisco who pioneered the firstearly-stage support group in 1986and consults for the Alzheimer’sAssociation and other organizations,says, “It’s important to screen peopleto select those who will be comfort-able and do well in the group. Weseek people with AD who haveinsight into their condition, the abilityto articulate their feelings andconcerns, and the desire to have thesupport group experience.” Yalenotes that while having a carepartner to escort the person with ADand attend a concurrent supportgroup is ideal, it is not a mandatoryprerequisite.

Yale’s book, Developing SupportGroups for Individuals with Early-Stage Alzheimer’s Disease, has beenused as a guide for creating groups

(continued next page)

Connections Volume 13, Numbers 1-2page 4

nationally and internationally. In it, shediscusses planning, implementing,and evaluating group sessions. Sheidentifies topics that are likely to ariseand encourages group members toraise issues that are important tothem. Suggested topics includequestions and concerns aboutmemory loss, relationships with familyand friends, adjusting to new situa-tions, and wellness and optimism.Yale’s model has evolved from time-limited to ongoing groups, withindividuals transitioning out of a groupwhen they can no longer participate.

Group leaders vary in how long theypermit participants to remain in thegroup as their cognitive abilitiesdecline. Clear guidelines and ongoingcommunication are essential so thatgroup facilitators and people with ADand their families have a sense ofhow and when transitioning out mayhappen. While challenging, this is anecessary part of the process forindividuals and the group as a whole,and, according to Yale, it can bemanaged successfully. Yale raisesanother concern: “The fact that thereare few regions of the country with anappropriate program as a ‘next step’for this population is also difficult, asthey may not yet be ready for daycare,” she says. At the very least,group leaders hope they have instilleda spirit of camaraderie, coping skills,and emotional support that willcontinue to help people with AD andcaregivers when the sessions end.An important point, many groupleaders say, is that early-stage supportgroups are not for all people withearly-stage AD and their family

members.While mostparticipantsreport positiveoutcomes,such as agreater senseof control overtheir lives andfeeling thatthey are notalone, othersmay notparticipatedue to familyconflict,

denial, significant cognitive impair-ment, or discomfort with the intimacyof a group experience.

How does the early-stagesupport group impactquality of life?Rebecca Logsdon, a ResearchAssociate Professor of Psychosocialand Community Health at theUniversity of Washington Alzheimer’sDisease Research Center, is collabo-rating with the Western and CentralWashington State Alzheimer’s Associa-tion Chapter to evaluate early-stagegroups conducted by the chapter.“Early-stage groups are becomingmore and more popular, but there isa wide range of practices amongAlzheimer’s Association chaptersregarding who may participate andwhat type of group is offered,” saysLogsdon.

“The goal of our 3-year study,funded by the Alzheimer’s Associa-tion, is to evaluate quality of lifeoutcomes of early-stage groupparticipants compared to a controlgroup. We are evaluating specificbenefits that were identified indiscussions with early-stage partici-pants and facilitators, includingoverall quality of life, depression,perceived stress, sense of control,communication between partici-pants and caregivers, and decisionmaking regarding legal, financial,and medical planning, saysLogsdon. She believes her researchultimately “will allow us to providethe most appropriate and effective

interventions and resources forindividuals and families dealing withearly-stage Alzheimer’s disease.”

Veteran social worker Lisa Snyder, ofthe University of California, San Diego,firmly believes that the criteria forparticipating in an early-stage supportgroup should be strict. She believesthat participants must be highfunctioning within the group anddedicated to participating in order tomaximize the experience for every-one. Snyder has adopted an ongoinggroup model to keep the patient-caregiver pair as long as they areable. In Coping with Alzheimer’sDisease and Related Disorders: AnEducational Support Group for Early-Stage Individuals and Their Families,a manual created by Snyder forconducting an early-stage AD supportgroup, an 8-week structured coursehighlights issues such as self-esteem,legal and financial concerns, healthmaintenance, and daily living.

Kathleen O’Brien, Senior Vice Presidentof Program & Community Services forthe Alzheimer’s Association, notesthat the Association has more than 91early-stage support programs offeredacross the country. Most adopt thetime-limited model. O’Brien notes alsothat the Association is working hard tocreate more specialized AD caregiversupport groups, particularly thoseserving minority and bilingual popula-tions such as African-American,Hispanics, and Chinese-Americans, as

Volume 13, Numbers 1-2 Connections page 5

well as groups designed specificallyfor male caregivers.

While the level of resources forsupport group options may beuneven throughout the country,O’Brien encourages people toconsider their options. “Practical andemerging alternatives to classroom-based support groups can be foundin some locations via telephone or e-mail,” she says. More and morepeople with AD and their families arefinding that the Internet and tele-phone “help lines” are proving viablealternatives to classroom-basedsupport groups. “These choices areespecially helpful for those whocannot travel to a nearby supportgroup or who do not have theresources in their area. The mostimportant thing is to get help if theyneed it and to do that by any meanspossible, whether that’s on thephone, on the Web, or in class,” sheemphasized.

Health professionals canhelpSome AD caregiver advocatesbelieve that health professionals areslowly becoming aware that supportgroups are positive options forfamilies who are initially frightenedand depressed by the Alzheimer’sdiagnosis. But more work is neededto inform health care professionalsabout the benefits of support groupsfor their early-stage AD patients.UCSD’s Snyder says, “If health careprofessionals campaign for early-diagnosis for dementia patients, thenthey should also advocate for supportgroups and other services to helpfamilies in the early stages of thedisease.”

While support group models differfrom one another significantly, eachis intended to help people living withAD and ease the family’s burden.Although formal studies of theireffectiveness are ongoing, experi-ence so far suggests that early-stagesupport groups allow those with ADand their caregivers to build theemotional structure they need tocope with the significant demands ofthe disease.

For more informationTo find out if an early-stage ADsupport group is operating in yourarea, contact the Alzheimer’s Asso-ciation at 1-800-272-3900 or visitwww.alz.org. Some ADCs alsoorganize support groups. Call theADEAR Center at 1-800- 438- 4380to receive a print directory of theADCs or visit www.alzheimers.org/adcdir.htm. Other resources include:• Family Caregiving Alliance (FCA)

at 1-800-445-8106 orwww.fca.org

• Children of Aging Parents (CAPS)at 1-800-227-7294 orwww.caps4caregivers.org

Suggested reading:Yale, R. (1995). Developing SupportGroups for Individuals With Early-Stage Alzheimer’s Disease: Planning,Implementation, and Evaluation.Available from Health ProfessionsPress, Inc. P.O. Box 10624, Baltimore,MD 21285-0624. 1-888-337-8808;410-337-9585; FAX: 410-337-8539.PRICE: $32.50.

Copies of Lisa Snyder’s manual,Coping with Alzheimer’s Disease andRelated Disorders: An EducationalSupport Group for Early-StageIndividuals and Their Families, and amanual by Lisa Gwyther designed tohelp families in North Carolina,Working with Family Caregivers ofPeople with Memory Disorders, canbe requested from ADEAR at1-800-438-4380.

New BookletNew BookletNew BookletNew BookletNew Booklet(from page 1)about the possible origins anddevelopment of AD. These findingsand NIA’s continuing research pro-grams are renewing hope thatsomeday we will be able to delay theonset of AD, slow its progress, or evenprevent it altogether.

The booklet can be previewedand ordered on the ADEAR websiteat: www.alzheimers.org/pubs/PreventingAD/TOC.htm.

You can also order copies by:• calling the ADEAR Center at

1-800-438-4380.• using the order form on the back

page of the newsletter.

Clinical trialsupdateTwo large national AD clinical studiessponsored in part by NIA are seekingvolunteers. Contact the ADEARCenter at 1-800-438-4380, orwww.alzheimers.org/trials for moreinformation on:

••••• ADNIADNIADNIADNIADNI—The Alzheimer’s DiseaseNeuroimaging Initiative will useimaging techniques, such as mag-netic resonance imaging (MRI) andpositron emission tomography (PET) tomeasure brain structure and function.ADNI is an NIA public-private partner-ship that also will study biologicalmarkers to see if they can be used toidentify early AD changes andprogression. Researchers are lookingfor participants between age 55 and90 who have been diagnosed withMCI or early AD, and also are seekingparticipants who are in good generalhealth. ADNI investigators hope toenroll 800 participants. Recruitment isnow beginning at some sites.

••••• The Alzheimer’s Disease GeneticsStudy is about halfway to its goal ofenrolling 1,000 families. Funding forthe study has been extended asinvestigators continue recruitmentefforts. Eligible families must have atleast 2 living siblings (brothers/sisters)who developed AD after age 60 andone other living family member age50 or older who may have memoryloss (or age 60 or older with nomemory loss). The study is alsoseeking volunteers to serve as “con-trols”—spouses, friends, and otherinterested people age 60 or olderwithout memory impairment who arenot biologically related to participat-ing family members. Spanish-speakingstaff are available to provide help topotential participating families. TheSpanish-language phone line is 1-800-243-5828 or e-mailvcs2103@columbia.edu.

ADCS clinical trialsSeveral large national studies spon-sored by NIA and the Alzheimer’sDisease Cooperative Study (ADCS)

(see Clinical Trials, page 11

Connections Volume 13, Numbers 1-2page 6

New ADCsNew ADCsNew ADCsNew ADCsNew ADCs(from page 1)

a wider geographic area, but we arelooking forward to expanding the ADresearch portfolio with several excitingprojects,” commented Creighton(Tony) Phelps, Ph.D., Program Director,Alzheimer’s Disease Centers, Neurobi-ology and Neuropsychology of Aging(NNA) Program at the NIA. Florida’spopulation centers—Tampa andMiami—will have access to newservices under the USF umbrella, andthe new ADC will work closely with theState’s 13 Memory Clinics. Based inAtlanta, Emory University will continueexpanding its services to Georgia’s ADpatients and caregivers.

“We are very excited to welcomethese two institutions into NIA’snational research network. Each teamhas produced exceptional basicscience research, and each isproposing several intriguing projectsthat will add much to our growingbody of knowledge about AD,” saysRichard J. Hodes, M.D., Director, NIA.

The USF ADC will be led by HuntingtonPotter, Ph.D. The ADC at Emory will beled by Allan Levey, M.D., Ph.D. Teamsof researchers at each institution willexamine mild cognitive impairment(MCI) from different scientific per-spectives and approaches. At USF,investigators seek to understand theprocess of transition from normalaging to MCI to AD by determiningwhich combinations of clinical,epidemiologic, imaging, neuropsy-chological, and biological markersbest identify individuals who willexperience a rapid rate of cognitivedecline. Researchers hypothesize thatthere is a strong positive correlationbetween the amount of certainbiomarkers and risk factors and therapid cognitive decline that can befound in preclinical AD patients.

At Emory, one of the ways that ADCstaff will explore MCI is by differentiat-ing MCI subgroups through sensitivememory tasks developed in non-human primates at the University’sYerkes National Primate ResearchCenter. The Yerkes Center is

dedicated to biomedical andbehavioral research with nonhumanprimates, including 3,000 monkeysand apes representing eight species,plus about 2,500 rodents. The Centerconducts research on human healthdisorders such as AIDS, Parkinson’sdisease, drug addiction, cardiovascu-lar disease, infantile blindness, andadult visual deficits, as well as AD.

“The more we understand the underly-ing mechanisms of MCI, the betterwe will be able to understand howand when the disease processbegins. Gaining insight into thetransformation from healthy aging toMCI and conversion from MCI to ADis crucial to our overall dementiaresearch program,” said MarcelleMorrison-Bogorad, Ph.D., Director,NNA program.

University of SouthFloridaFlorida is the fourth largest State in thecountry in terms of population andthe second largest in total number ofAlzheimer’s disease patients. Thereare an estimated 430,000 AD patientsin Florida, and, as is true across theU.S., the aging population is ethnicallydiverse and growing rapidly.

In 2002, the Florida Legislatureestablished the Johnnie B. Byrd Sr.Alzheimer’s Center and ResearchInstitute on the campus of USF, as aprivate, non-profit, State-wide institute“dedicated to the cure and preven-

tion of Alzheimer’s disease.” The ByrdInstitute will partner with USF byproviding additional expertise andState financial support to the FloridaADC. Headquartered in Tampa, USFwill direct two clinical researchcenters, one in Miami and one inTampa. In addition, neuropathologyservices will be provided through theMayo Clinic in Jacksonville, and theADC will work with the SuncoastGerontology Center in Tampa toprovide education services. Additionaldiagnosis and treatment services willbe provided at the Wien Center atMount Sinai Medical Center in Miami.USF will also be working closely with anumber of local chapters of theAlzheimer’s Association, and theCaregiver Assistance Program,funded by the State of Florida.

Additional research will be conductedat the University of Miami, and theWien Center has a strong interest inthe early detection of dementia forboth English and Spanish speakers. TheCenter will also be involved in theassessment of genetic and environ-mental risk and protective factors fordementing diseases.

One of the major missions of theSuncoast Gerontology Center is theeducation of patients, caregivers,physicians, and other health careprofessionals in the most currentknowledge about AD research,diagnosis, treatment, and care. Staffat the Center are developing anetwork of professionals who will workwith minority and underserved popula-tions, conducting outreach programs,and producing Spanish-languagematerial on MCI, AD, and the ADC.

“It is a great honor and responsibilityto direct, together with Dr. RanjanDuara from the University of Miami,the new NIA-designated Florida ADC.This represents the effort of manyresearchers from all over the Statewho came together to collaborateon the application. That collaborationwas made possible in no small way bythe people of Florida, whose repre-sentatives established the State-funded Johnnie B. Byrd Sr. Alzheimer’sCenter and Research Institute. Weare very proud that bringing together

Huntington PHuntington PHuntington PHuntington PHuntington Potterotterotterotterotter, Ph, Ph, Ph, Ph, Ph.D.D.D.D.D.....

Volume 13, Numbers 1-2 Connections page 7

many institutions and investigators hasled to Florida receiving its first ADCand look forward to working with otherresearchers across the State and theNation to more effectively understandand attack Alzheimer’s disease, ” saidDr. Potter.

In addition to USF’s research focus onMCI, other major projects will include:• investigating the use of “cognitive

rehabilitation” to intervene in andslow disease progression in MCIand early AD patients. Preliminaryevidence indicates that suchcognitive rehabilitation can slowcognitive decline in AD patients.Cognitive rehabilitation has beenshown to be effective in treatinga wide variety of neurologicaldisorders including traumatic braininjury and stroke.

• using mouse models of AD todetermine which aspects ofenvironmental enrichment(including cognitive rehabilitation)best slow or reverse cognitiveimpairment and might be similarlyapplied to human patients.

The USF ADC is also working on newtherapeutic strategies to promote therepair and regeneration of diseasedbrains. In addition to movementdisorders and AD, the Center re-searches PD, Huntington’s disease,ALS, stroke, and Tourette’s disorder.

Emory UniversityEmory University is a private teachingand research institution and wasfunded as an ADC from 1991 to2000, and from 2000 until this year,was designated as an affiliate ADC.Emory operates from three principallocations: the Center for Neuro-degenerative Disease (housing manyresearch labs), the Wesley WoodsCenter (a geriatrics center with ADspecial care units), and Grady Memo-rial Hospital (a 1000-bed teachinghospital).

Several other specialized researchfacilities will coordinate research withthe ADC, including the Emory SleepDisorders Center, and the YerkesNational Primate Research Center.

Allan Levey, M.D., Ph.D., ADC Direc-tor, stated, “We are delighted to beawarded one of the new ADC grants.The award builds on the spectaculargrowth in the neurosciences andneurodegenerative disease researchat Emory over the past 10 years. TheCenter brings new strengths anddirections in genetics, proteomics(the study of protein structure andfunction), and cognitive neuroscienceto research and clinical care forindividuals with MCI, AD, and otherdementias, together with a mission toserve a large and diverse communityin need.”

The Emory ADC maintains an empha-sis on the overlap between cognitiveand movement disorders, and has astrong outreach program to the largeAfrican-American community in urbanAtlanta.

Among the special research projectsunderway at Emory are:• “Sensitive Memory Tests for

Differentiating MCI Subgroups,”which will adapt novel, highlysensitive memory tasks devel-oped in non-human primates.

• “Crossed Genetics Risks ofAlzheimer’s and Parkinson Dis-ease” to examine significantlyincreased crossed familial risk ofAD and PD. This research will testthe association of novel candi-date genes for AD and PD.Emory has formed a partnershipwith de CODE Genetics, agenomics company based inIceland, which has a relatively

Allan LAllan LAllan LAllan LAllan Leveyeveyeveyeveyevey, M, M, M, M, M.D.D.D.D.D., Ph., Ph., Ph., Ph., Ph.D.D.D.D.D.....

homogenous population, to helpfurther this research.

• “Analysis of Proteomic Patterns inNeurodegeneration” which willapply state-of-the-art proteomicstechnologies to MCI, AD, and PDbrains. Emory investigators believethat although AD and PD oftenrepresent distinct disorders,significant overlap occurs atgenetic, clinical, and pathologi-cal levels, suggesting commonmolecular mechanisms.

The Emory ADC will also addressdementia risk factors such as sleep,vascular co-morbidities, and multicul-tural issues. Researchers believe thatsleep-disordered breathing may playan unappreciated role in AD, PD, andother neurodegenerative diseases.Emory’s emphasis on dementia inAfrican-Americans will examine howracial and cultural factors influenceMCI and that population’s commonlyoccurring co-morbidities such ashypertension, diabetes, and vasculardisease.

Other research will concentrate onenvironmental toxins and their possiblerole in disease, the cell biology ofpresenilins and their role in membranetraffic, protein degradation, andhypoxia and oxidative stress.

Contact the ADCs:EmorEmorEmorEmorEmory Universityy Universityy Universityy Universityy UniversityAllan I. Levey, M.D., Ph.D., DirectorEmory Alzheimer’s Disease Center1841 Clifton Road, NEAtlanta, GA 30329ADC e-mail: emoryadc@emory.eduWebsite: www.med.emory.edu/ADCInformation Line: 404-728-6950Fax: 404-728-6955

University of South FloridaUniversity of South FloridaUniversity of South FloridaUniversity of South FloridaUniversity of South FloridaFlorida Alzheimer’s Disease Research

CenterHuntington Potter, Ph.D., DirectorByrd Alzheimer’s Center and Research

Institute15310 Amberly Drive, Suite 320Tampa, FL 33647Director’s e-mail: hpotter@byrdinstitute.orgWebsite: www.byrdinstitute.orgDirector’s Tel: 813-866-1600Director’s Fax: 813-866-1601

Connections Volume 13, Numbers 1-2page 8

NIA introduces new SpanishpublicationsThe NIA is pleased to announce the addition of threenew free publications in Spanish. The first,Conversando con su médico, is a cultural adapta-tion of the NIA publication Talking with Your Doctor.This new Spanish-language version includes informa-tion to help you choose a doctor, communicateeffectively with the doctor and other health careproviders, work with an interpreter, discuss sensitiveissues such as incontinence or sexuality, and findadditional health information in Spanish.

Two of NIA’s popular Age Page series alsohave been translated into Spanish: Conductores de la tercera edad (OlderDrivers) and Prevención de caídas y fracturas (Preventing Falls and Fractures).

Conductores de la tercera edad provides information on:• how age affects driving,• smart and safe driving for older people,• when to give up driving, and• how to maintain mobility after giving up driving.

Prevención de caídas y fracturas discusses:• ways to adopt exercise programs to build strength and avoid falls and

broken bones,• testing hearing and vision to maintain stability, and• many tips on making the home a safer environment.

You can order copies in several ways:• go to www.niapublications.org.• call the NIA Information Center at 1-800-222-2225.• use the order form on the back page of the newsletter.

Sign up for NIA E-mailalertsYou can now sign up to receive e-mail alerts from the National Instituteon Aging for:• News and announcements and/

or• New NIA publications.Simply go to www.niapublications.org/alerts to select your preference.Or, you can use the order form on theback page of the newsletter.

New booklet on aging heartspublishedThe NIA also recently introduced its newestpublication, Aging Hearts and Arteries: A Scien-tific Quest. This free 64-page booklet offers aninside look at the latest cardiac research fundedby the National Institutes of Health.

Using easy-to-understand diagrams and illustrationsof the heart, Aging Hearts and Arteries discusses thelink between aging and cardiovascular diseases, suchas coronary heart disease and high blood pressure.These illnesses eventually lead to heart attacks andheart failure, and cause more than 40 percent of

deaths of older people every year.Research is providing us with greater understanding of the intimate relation-

ship between aging and heart health. Use this booklet both as a scientificintroduction to the biological processes involved in aging and its effects on thecardiac system, and as your first steps toward a healthier heart.

Topics in Aging Hearts and Arteries: A Scientific Quest include:• anatomy and history of the heart• characteristics and effects of aging on the normal heart• clues about when a good heart goes bad• arteries and their relationship with the heart• exercise, diet, and metabolism and their connection with heart healthYou can order copies in several ways:• go to www.niapublications.org.• call the NIA Information Center at 1-800-222-2225.• use the order form on the back page of the newsletter.

New videoin BosnianlanguageavailableA new VHS videoin the Bosnianlanguage helpsmembers of thatcommunityrecognize symp-toms of memoryloss and how to get help. Producedby the Washington University at St.Louis ADC, the St. Louis chapter ofthe Alzheimer’s Association, theInternational Institute of St. Louis, andBi-Lingual International AssistantServices, the 22-minute video isentitled Prepoznavanje simptomagubljenja pamc'enja i pristupuslugama: Obrazovni program zaBosansku zajednicu (RecognizingSymptoms of Memory Loss andAccessing Services: A Video for theBosnian Community).

This video demonstrates the differ-ences between changes in normalaging and those due to AD byobserving members of a Bosnianfamily as they recognize a problemand subsequently seek medicaladvice and services for a belovedgrandmother with memory loss. Thevideo has English subtitles.

Each video is $7.50 and can beordered by credit card on the ADEARwebsite at www.alzheimers.org. Thevideo can also be ordered by mail byusing the order form on the backpage of the newsletter. Checks mustbe in U.S. funds.

Volume 13, Numbers 1-2 Connections page 9

CHID HighlightsCHID Highlights describes materials recently added to the Alzheimer’s disease file of the Combined Health InformationDatabase (CHID). The items selected represent topics and formats of general interest to readers of Connections andADEAR Center users or their clients. Please order directly from the source listed for each item. Journal articles are avail-able in many university and medical school libraries. CHID is accessible on the Internet at www.chid.nih.gov, by followingthe link at www.alzheimers.org, or by following the National Library of Medicine’s link to CHID at www.nlm.nih.gov/medlineplus/databases.html.

Caregiving Advice

Navigating the AlzheimerNavigating the AlzheimerNavigating the AlzheimerNavigating the AlzheimerNavigating the Alzheimer ’s Journey:’s Journey:’s Journey:’s Journey:’s Journey:A Compass for Caregiving. 2004A Compass for Caregiving. 2004A Compass for Caregiving. 2004A Compass for Caregiving. 2004A Compass for Caregiving. 2004

Sifton, C.B.

Available from the Health Profes-sions Press, P.O. Box 10624,Baltimore, MD 21285-0624.Phone: 410-337-9585; Fax: 410-337-8539. Website: www.healthpropress.com. PRICE: $32.95

This 650 page monograph uses theauthor’s personal and professionalexperience dealing with dementia.Sifton has created a guide withpractical advice designed to man-age the daily struggles and chal-lenges of caring for a loved one whohas dementia. The book discusses thebalance a caregiver must achieve inorder to maintain both the patient’sand the caregiver’s health. It dis-penses advice to avoid caregiverburnout, and, over its 10 chapters,addresses topics such as “living in themoment,” and “understanding,preventing, and responding tobehavioral symptoms.” The authorstresses that caregivers should alwaystry to focus on the positive. Useful forthe informal caregiver, this bookpromotes maintaining a positiveapproach to caregiving and workingwith the patient’s remaining abilitiesand strengths, rather than dwelling onloss and grief.

The Dementias: Diagnosis,The Dementias: Diagnosis,The Dementias: Diagnosis,The Dementias: Diagnosis,The Dementias: Diagnosis,Treatment, and Research. 3rd ed.Treatment, and Research. 3rd ed.Treatment, and Research. 3rd ed.Treatment, and Research. 3rd ed.Treatment, and Research. 3rd ed.20032003200320032003

Weiner, M.F., Lipton, A.M., eds.

Available from the American Psychi-atric Publishing, Inc., P.O. Box97250, Washington DC 20090.Phone: 1-800-368-5777; Fax:703-907-1091. Website:www.appi.org. PRICE: $90.00paperback

This third edition, edited by Myron F.Weiner, M.D., and Anne M. Lipton,MD, Ph.D., updates and expands onthe previous edition by adding newinformation on basic and clinicalresearch findings. The book is de-signed to help medical professionalswho have patients with dementia. Itserves as an introduction to thepathophysiology of dementia. Newto this edition is a section devoted tothe possible molecular and geneticsources of AD, an illustrated chapteron contemporary neuroimaging,and a segment focusing on mildcognitive impairment, frontotemporaldementias, and dementias with Lewybodies. This edition has three majorsections discussing the diagnosis ofdementia in the clinical and researchareas. Many people caring for olderpeople with cognitive impairment,including geriatricians, neurologists,and geriatric psychiatrists, can learnfrom this book.

Physician’s Guide to AssessingPhysician’s Guide to AssessingPhysician’s Guide to AssessingPhysician’s Guide to AssessingPhysician’s Guide to Assessingand Counseling Older Drivers.and Counseling Older Drivers.and Counseling Older Drivers.and Counseling Older Drivers.and Counseling Older Drivers.20032003200320032003

Wang, C.C., et al.

Available from Taylor the OlderDriver’s Project, American MedicalAssociation, 515 North State Street,Chicago, IL 60610. Phone: 312-464-4179; Fax: 312-464-5842.

Website: www.ama-assn.org/go/olderdrivers. PRICE: free

Developed by the American MedicalAssociation and the National HighwayTraffic Safety Administration, this guideis a helpful tool for clinicians andmedical professionals to decidewhether an older person should driveand how to counsel that patient. In its10 chapters, the following are dis-cussed: safety, whether the patient isat risk, assessing driving-relatedfunctions, physician interventions,rehabilitation specialists, clinicians’legal and ethical responsibilities,State-specific licensing requirements,medical conditions and medicationsthat effect driving, and recommen-dations for safer driving. This guidealso is available as a CD-ROM.

The Best FThe Best FThe Best FThe Best FThe Best Friends Book of Alzheimerriends Book of Alzheimerriends Book of Alzheimerriends Book of Alzheimerriends Book of Alzheimer’s’s’s’s’sActivities. 2004Activities. 2004Activities. 2004Activities. 2004Activities. 2004

Bell, V., et al.

Available from the Health Profes-sionals Press, P.O. Box 10624,Baltimore, MD 21285-0624.Phone: 1-888-337-9585; Fax:410-337-8539. Website:www.healthpro press.com.PRICE: $29.95Developed by Best Friends, a trade-mark of the Health Professions Press,this handbook contains 147 fun andeasy activities for caregivers, friends,and families to do with patients withAD and other dementias. The user-friendly format and its simple instruc-tions give ideas on how caregiversand dementia patients can becomeinvolved in sensory- and brain-friendlyactivities. These activities include

Physician Guide:Older Drivers

AD Diagnosis, Treatment

AD Activities

Connections Volume 13, Numbers 1-2page 10

everything from decoupage andcreating your own wrapping paper, towriting poetry, or using the computer.Along with each formal and informalactivity are instructions on how toadapt the activity for people in theearly and later stages of the disease.Each activity also has correspondingpreventive suggestions to head offpotential problems and ways topromote communication andconversation during the event. BestFriends describes the emotional andspiritual benefits of being active andenjoying time with others.

TTTTTalking About Deathalking About Deathalking About Deathalking About Deathalking About Death. 2004. 2004. 2004. 2004. 2004

Morris, V.

Available from Workman Publish-ing, 708 Broadway, New York, NY10003. Phone: 212-722-7202;212-254-5900. Website: www.workman.com. PRICE: $14.95

Author of How to Care for AgingParents, Morris has written this book tohelp make death “gentler and evenmeaningful.” Her sensitive andsurprisingly positive book discusseswhat caregivers, families members,and friends of the dying should knowto prepare for a loved one’s death,and even our own. The book containspersonal stories combined withpractical information about dealingwith death. Some issues raised in thebook include: how to discuss andbring up the subject of death with afamily member; how to make deathless upsetting; and what you need toknow about end of life issues such aslife support, artificial nutrition, painrelief, and hospice care. Morrissuggests adopting a proactivephilosophy as death approaches andmanaging its approach with spirituality.

EthicsEthicsEthicsEthicsEthics, L, L, L, L, Lawawawawaw, and Aging R, and Aging R, and Aging R, and Aging R, and Aging Reviewevieweviewevieweview, V, V, V, V, Vol 8:ol 8:ol 8:ol 8:ol 8:Issues in Conducting Research WithIssues in Conducting Research WithIssues in Conducting Research WithIssues in Conducting Research WithIssues in Conducting Research Withand About Older Persons. 2002and About Older Persons. 2002and About Older Persons. 2002and About Older Persons. 2002and About Older Persons. 2002

Kapp, M.B., ed.

Available from the Springer Pub-lishing Company, Inc., 11 West42nd Street, 15th Floor, New York,NY 10036. Phone: 1-877-687-7476; 212-431-4370. Website:www.springerpub.com. PRICE:$39.95

This volume is part of a series in issuesconducting research with and aboutolder persons. It is designed forclinicians, medical professionals, andanyone who is interested in the legalmatters of the elderly. The book isstructured in two major parts. The firstpart is dedicated to ethical and legalissues, such as informed consent,drug testing and approval, andregulating research for those withcognitive impairment. The secondpart includes several articles discuss-ing surgical intervention in the veryold, long-term legal care, andrespecting patient’s preferences atthe end of life.

Healing Arts Therapies and Person-Healing Arts Therapies and Person-Healing Arts Therapies and Person-Healing Arts Therapies and Person-Healing Arts Therapies and Person-Centered Dementia Care. 2002Centered Dementia Care. 2002Centered Dementia Care. 2002Centered Dementia Care. 2002Centered Dementia Care. 2002

Innes, A., Hatfield, K., eds.

Available from Taylor and Francis-Routledge Books, Inc., 29 West35th Street, 10th Floor, New York,NY 10001. Phone: 1-800-797-3803, ext. 7856; 212-216-7856;Fax: 212-244-1563. Website:www.routledge-ny.com. PRICE:$19.95

This small handbook offers a holisticview on how to deal with dementiausing visual arts, music, and dance.Published by the Bradford DementiaGroup, the book presents advice totherapists and clinicians and empha-

sizes the human aspect of dementia,rather than the disease itself. Its threemajor chapters, devoted to (1) arttherapy, (2) dance/movementtherapy, and (3) music therapy,describe case studies that demon-strate person-centered dementiacare. According to the book, thistype of personal care promotessuccessful group interaction, bettercommunication, better self-esteem,and improved memory. Chapters areillustrated with drawings, photos, andcharts, and the chapter contributorsare all practicing healing arts thera-pists.

The Merck Manual of Geriatrics: AThe Merck Manual of Geriatrics: AThe Merck Manual of Geriatrics: AThe Merck Manual of Geriatrics: AThe Merck Manual of Geriatrics: ANew Generation of Geriatric Care.New Generation of Geriatric Care.New Generation of Geriatric Care.New Generation of Geriatric Care.New Generation of Geriatric Care.3rd3rd3rd3rd3rd ed. 2000ed. 2000ed. 2000ed. 2000ed. 2000

Beers, M.H., Berkow, R., eds.

Available from Merck PublishingGroup, Merck and Company, Inc.,P.O. Box 2000, RY84-15, Rahway,NJ 01065. Phone: 1-732-594-4600. Website: www.merckbooks.com/mgeri/index.html.PRICE: $37.50

This reference covers a broad rangeof health issues affecting the elderlyand also discusses typical symptoms,signs, diagnosis, and treatments formany geriatric conditions. It alsopresents information on nursing care,pharmacy issues, and planning forlater life. Other topics include nutri-tion, geriatric emergencies, homehealth care, cardiovascular disorders,infectious disease, psychiatric disor-ders, and legal, ethical, and socialissues. One section is of particularinterest for readers because it focuseson delirium and dementia. Thissection’s four chapters include: (1) themental status examination, (2)delirium, (3) AD and other dementias,and (4) behavior disorders in demen-tia. The book is useful as a medicalreference for clinicians or health careprofessionals who deal with geriatricpatients.

Research and Ethics

Death and Dying

Therapeutic Strategies

Manual of Geriatrics

Volume 13, Numbers 1-2 Connections page 11

For a complete listing of upcomingconferences, please visit:www.alzheimers.org/calendar

September 25-28, 2005American Neurological AssociationAmerican Neurological AssociationAmerican Neurological AssociationAmerican Neurological AssociationAmerican Neurological AssociationAnnual MeetingAnnual MeetingAnnual MeetingAnnual MeetingAnnual Meeting, San Diego, San Diego, San Diego, San Diego, San Diego, CA, CA, CA, CA, CA

Contact:American Neurological Association5841 Cedar Lake RoadSuite 204Minneapolis, MN 55416Telephone: 952-545-6284Fax: 952-545-6073E-mail: ana@llmsi.comWebsite: www.aneuroa.org

September 26-29, 2005Autumn Series on Aging, WestAutumn Series on Aging, WestAutumn Series on Aging, WestAutumn Series on Aging, WestAutumn Series on Aging, WestCoastCoastCoastCoastCoast, , , , , San FSan FSan FSan FSan Franciscoranciscoranciscoranciscorancisco, CA, CA, CA, CA, CA

Contact:American Society on Aging833 Market Street, Suite 511San Francisco, CA 94117Telephone: 1-800-537-9728, ext. 9675Website: www.asaging.org/autumn-series

October 7-8, 20055th Leonard Berg Symposium:5th Leonard Berg Symposium:5th Leonard Berg Symposium:5th Leonard Berg Symposium:5th Leonard Berg Symposium:Antecedent Biomarkers for Early andAntecedent Biomarkers for Early andAntecedent Biomarkers for Early andAntecedent Biomarkers for Early andAntecedent Biomarkers for Early andPPPPPreclinical Detection of ADreclinical Detection of ADreclinical Detection of ADreclinical Detection of ADreclinical Detection of AD,,,,,StStStStSt. L. L. L. L. Louisouisouisouisouis, MO, MO, MO, MO, MO

Contact:Tom Meuser, Ph.D.Washington UniversityAlzheimer’s Disease Research CenterSt. Louis, MOTelephone: 314-286-2882E-mail: meusert@abraxax.wustl.eduWebsite: http://alzheimer.wustl.edu

Exercising Your BrainOctober 9-10, 2005“““““Branch Out KBranch Out KBranch Out KBranch Out KBranch Out Kentuckyentuckyentuckyentuckyentucky ”””””Conference - Uniting to IdentifyConference - Uniting to IdentifyConference - Uniting to IdentifyConference - Uniting to IdentifyConference - Uniting to Identifyand Care for African-Americansand Care for African-Americansand Care for African-Americansand Care for African-Americansand Care for African-Americanswith ADwith ADwith ADwith ADwith AD, L, L, L, L, Lexingtonexingtonexingtonexingtonexington, K, K, K, K, KYYYYY

Contact:Janice PaulUK Sanders-Brown Center on Aging800 S. Limestone Street, Room 314Lexington, KY 40536Telephone: 859-257-1412, ext. 272Fax: 859-323-2866

October 20-21, 2005UT Southwestern: Genetics ofUT Southwestern: Genetics ofUT Southwestern: Genetics ofUT Southwestern: Genetics ofUT Southwestern: Genetics ofAlzheimer's Disease & RelatedAlzheimer's Disease & RelatedAlzheimer's Disease & RelatedAlzheimer's Disease & RelatedAlzheimer's Disease & RelatedDisorders, Irving, TXDisorders, Irving, TXDisorders, Irving, TXDisorders, Irving, TXDisorders, Irving, TX

Contact:Continuing Education/UT Southwestern5323 Harry Hines BoulevardDallas, Texas 75390-9059Telephone: 1-800-688-8678 or

214-648-3138Fax: 214-648-4804E-mail:cmeregistrations@utsouthwestern.edu

November 12-16, 200535th Annual Meeting of the35th Annual Meeting of the35th Annual Meeting of the35th Annual Meeting of the35th Annual Meeting of theSociety for Neuroscience,Society for Neuroscience,Society for Neuroscience,Society for Neuroscience,Society for Neuroscience,Washington, DCWashington, DCWashington, DCWashington, DCWashington, DC

Contact:Society for Neuroscience11 Dupont Circle, NW, Suite 500Washington, DC 20036Telephone: 1-202-462-6688E-mail: info@sfn.org

Clinical TrialsClinical TrialsClinical TrialsClinical TrialsClinical Trials(from page 5)

coordinated by the University ofCalifornia at San Diego, continue toseek volunteers. Included amongthese trials are:

••••• CLASPCLASPCLASPCLASPCLASP—Cholesterol LoweringAgent to Slow Progression of AD StatinStudy, investigating the safety andeffectiveness of simvastatin (acholesterol-lowering drug or statin) toslow the progression of AD.

••••• VITVITVITVITVITALALALALAL—VITamins to slowAlzheimer’s (homocysteine study), todetermine whether reduction ofhomocysteine levels with high-dosefolate (folic acid), B6, and B12 supple-mentation will slow the rate of cogni-tive decline in people with AD.

••••• TAP/DAPTAP/DAPTAP/DAPTAP/DAPTAP/DAP—Treatment of Agita-tion/Psychosis in Dementia/Parkin-sonism, to determine the safety andefficacy of quetiapine for the treat-ment of psychosis and/or agitation inpatients with primary dementiacomplicated by coexistent parkin-sonism, or patients with Parkinson’sdisease with dementia who haveepisodes of agitation or psychosis.

••••• VALIDVALIDVALIDVALIDVALID—VALproate in Dementia,to demonstrate whether valproatetherapy slows the progression of AD ordelays the emergence of agitationand/or psychosis in outpatients withprobable AD who have not experi-enced agitation and psychosis in theirillness.

••••• HUPERZINE AHUPERZINE AHUPERZINE AHUPERZINE AHUPERZINE A—to determinewhether treatment with huperzine A,a natural cholinesterase inhibitorderived from a Chinese herb, im-proves cognitive function in peoplewith AD.

Visit the ADCS website athttp://adcs.ucsd.edu for moreinformation.

Connections Volume 13, Numbers 1-2page 12

Publications Order Form Quantity Quantity Quantity Quantity Quantity

Aging Hearts and Arteries: A Scientific Quest .............................................

Bosnian language videotape ........ @$7.50 each (check must accompany order)

Can Alzheimer’s Disease be Prevented? ...................................................

Conversando con su Médico (Talking with Your Doctor) ...........................

New Spanish Age Page: Conductores de la tercera edad ......................

New Spanish Age Page: Prevención de caídas y fracturas ......................

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Order ADEAR publications at wwwwwwwwwwwwwww.alzheimers.or.alzheimers.or.alzheimers.or.alzheimers.or.alzheimers.orggggg. Order NIA publications at wwwwwwwwwwwwwww.niapublications.or.niapublications.or.niapublications.or.niapublications.or.niapublications.orgggggOr, order these materials by mail or fax to:

ADEAR Center, PO Box 8250, Silver Spring, MD 20907-8250, fax: 301-495-3334You also may call our toll-free telephone number: 1-800-438-43801-800-438-43801-800-438-43801-800-438-43801-800-438-4380,

or contact us via e-mail: adear@alzheimers.org

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