brain autopsy: the gift of knowledge frequently asked ...adrc.ucsd.edu/autopsy.pdf · alzheimer’s...

Alzheimer’s DiseaseCenters AutopsyProgram Directory The word “autopsy” stems from theGreek word autopsia, meaning tosee with one’s own eyes.Researchers have made significantprogress in developing accuratetests to detect AD in living patients,and as a result, a diagnosis of“probable” AD now can be madewith up to 90 percent certainty inspecialized research facilities.However, the disease can be diagnosed conclusively only byexamining the brain after death inan autopsy to see for sure the characteristic plaques and tanglesthat define AD. Autopsy providesvaluable information that can educate and enlighten families,physicians, and researchers, whoare working to discover more reliable tests for AD.

Information gained from autopsiesis a vital part of the research con-ducted at the Alzheimer’s DiseaseCenters (ADCs) supported by theNational Institute on Aging (NIA). Theautopsy results of AD patients whohave been followed over time at anADC are especially valuable. Forthese patients, doctors usually havesubstantial treatment and care

history which can give them insightsinto the disease course and provideinformation essential to the searchfor effective treatments and aneventual cure for AD.

In the past, brain tissue sampleswere essential for AD researchbecause no animal model for ADexisted. According to University ofPennsylvania ADC Director John Q.Trojanowski, M.D., Ph.D. “Autopsymay be even more importanttoday than in the past. The animalmodels we now have for AD providea good “caricature” of the disease,but it is essential that we be able tocompare them to actual diseasedhuman brain tissue obtainedthrough autopsy.”

Marcelle Morrison-Bogorad, Ph.D.,Associate Director of Neuroscienceand Neuropsychology of AgingProgram, NIA agrees with Dr.Trojanowski and adds, ”Ultimately,this research will uncover the chainof events that leads to AD andrelated dementias. Many families of dementia patients make thecommitment in order to help furtherAD research by agreeing to donatethe brain for research. It is vitallyimportant that people without braindisorders also make tissue dona-tions, so that we can understandhow healthy brains work.”

Volume 9, Number 1 Alzheimer’s Disease Education & Referral Center Winter 2001

CHID Autopsy Resources Caregiver CalenderHighlights . . . . 9 Directory . . . . . . 3 Resources . . . . 7 of Events . . . . 12

Brain Autopsy: The Gift of Knowledge

(Continued on page 2)

News From the ADEAR CenterAlzheimer’s Disease Education & Referral CenterA Service of the National Institute on Aging

Frequently AskedQuestions aboutBrain AutopsyQ. Who should get an autopsy?

A. AD patients and research volunteers without dementia.

Q. When should the autopsy be performed?

A. As soon as possible after death.The family should contact theautopsy coordinator immediate-ly—day or night and send themthe signed consent form.

Q. Will the autopsy procedure disfigure the body and delay the funeral?

A. No. The physician, a pathologist,removes the brain through an incision in the back of the head.The face is never touched orscarred during the procedure. An open casket is still an option.The examination will not delaypreparation of the body for burial.

Q. Hasn’t the patient sufferedenough?

A. The person who has died suffered a great deal during hisor her illness, but it is importantto remember that he or she isno longer suffering and that theautopsy will provide valuable information to those who survive.

(Continued on page 2)

2 Connections Winter 2001

Benefits of AutopsyTo Families—Advancing medicalknowledge often is cited as the mostimportant benefit of autopsy. Familymembers also may feel a sense ofrelief once they know the exactcause of death and that their lovedone was given appropriate care during his or her illness.

Findings from an autopsy can helpfamily members understand geneticrisk factors that can be associatedwith AD and related dementias, andprovide an opportunity for geneticcounseling.

Participation in brain autopsy canhelp family members attach mean-ing and purpose to the suffering thatoccurs with AD and related demen-tias. Autopsy can provide familymembers and loved ones with asense of closure to facilitate the grieving process. To Researchers and the MedicalCommunity—Autopsy provides animportant quality control tool by con -firming the diagnosis. In AD clinical trials, autopsy results help researchersconfirm that the people in the trialactually had AD and not some otherdementia. Autopsy results can helpresearchers develop and test better,more accurate diagnostic tools.

Autopsies of non-demented persons and those in the early stagesof AD can help scientists pinpoint theearliest signs of age-related brainchanges and how they differ frombrain changes in early AD. Researchof this type may lead to interventionsthat might help in the earliest stages.To Society—Autopsies provide moreaccurate disease rates of dementia,including vital statistics for State andnational registries. Accurate diagnos-tic data from autopsy can provideinformation to those who advocatefor laws and funding in support of ADpatients and their families. As a result,society as a whole may benefit byadditional services designed to easethe burden caused by AD and related dementias.

Planning For an Autopsy The time immediately after the deathof a family member is stressful and is

not the best time to start makingdecisions about an autopsy. Planningahead allows family members timeto reach a decision and prepare theneeded paperwork. Putting things inplace before the person’s deathhelps ensure that brain tissue can beremoved promptly.

A variety of professionals can helpmake the process of donating tissuethrough an autopsy service easier.Social workers, nurses, and other sup-port staff at the ADCs are available toanswer questions about the donationin advance. This may ease the deci-sion-making process for the family.Often, ADCs have designated anautopsy coordinator who helps people through the entire process.

Once a decision to donate braintissue is made, paperwork giving consent can start. If the patient is in anursing home or other long-term carefacility, staff there should be notified inadvance of the family’s wishes. Next,a funeral home is selected and noti-fied of the arrangement.

Usually, within several weeks of theautopsy, a written report is presentedto the family. The physician or supportstaff at the autopsy service often areavailable to discuss the findings.

For more information aboutplanning for an autopsy or becominginvolved in a research study, familiesmay contact any ADC. For the mostcurrent listing of the ADCs, see page4 or visit the ADEAR Center’s Web site (http ://www.alzheimers.org/pubs/adcdir.html).

Each of the ADCs provides autopsyservices to patients who have partici-pated in their research programs.Some of the ADCs offer broaderautopsy services to patients whohave been seen and followed by anADC physician. In some cases, theywill provide autopsy services to othersby request.

Many of the ADCs refer patientsfrom outside their programs to thepathology departments of their institutions. Typically, this is a fee-for-service arrangement. Other ADCsrefer families to local Alzheimer’sAssociation chapters, area brainbanks, and State medical examiners.

Brain Autopsy(Continued from page 1)

Q. Are there religious objections tobrain donations?

A. Often, there are cultural or religiousconcerns that practitioners needto address in order to help thefamily feel more at ease with thedecision. Most religions and cultural traditions agree that organdonation is valuable. Your own religious advisor is the best personto guide you. You are encouragedto talk with your own minister, priest,or rabbi.

Q. Who may grant permission foran autopsy?

A. The consent for an autopsy islegally binding only when it issigned after death by the legalnext-of-kin. Check with your lawyeror the facility performing theautopsy since these laws differ foreach State. The following is anexample of persons, in order of priority, who may provide suchconsent:

l Spousel Adult son or daughter l Either parentl Adult brother or sisterl Guardian of the deceased at

the time of deathl Any other person authorized

or under obligation to dispose of the body

Q. What can the family expect tolearn from the autopsy report?

A. The report will explain the finaldiagnosis and any major changesfound in the brain. It will saywhether or not the diagnosis ofAlzheimer’s disease was confirmedand if there were any other conditions affecting the brain. The primary, attending physician,or pathologist can interpret the report.

Q. How much will the brain autopsy cost the family?

A. Costs usually range from $500 to$1,500 (can be higher) for theautopsy, which does not includetransportation costs. Research programs at medical institutionslike the ADCs offer free services tothose who qualify.

(Continued from page 1)

Winter 2001 Connections 3

Dementia PostmortemNetwork, Web Sites,and ADC AutopsyProgram DirectoryThe Michigan Dementia Post-mortem Network helps families ofpeople in Michigan who are affect-ed by dementing diseases. It was established to help people toobtain an autopsy.

The network includes four types of medical professionals and volunteers: referral liaisons, autopsyliaisons, pathologists, and neu-ropathologists. Each is trained tohelp families by providing a specif-ic service. Referral liaisons—usuallysocial workers, nurses, or Alzheimer’sAssociation chapter volunteers—provide general information aboutbrain autopsy in Michigan and helpthe family complete enrollment.Autopsy liaisons—often pathologyassistants or funeral directors—helpcoordinate arrangements for theautopsy. Services include obtainingpatient medical information andconsent for autopsy, and helpingthe family arrange transportation forthe body. At autopsy, pathologists(doctors specializing in the study oftissue) remove the brain.Neuropathologists (doctors withadditional training in studying braintissue) examine the brain cells,make a diagnosis, and completean autopsy report for the patient’sphysician and family.

The Michigan Dementia Post-mortem Network serves Michiganresidents, but it has an informativeWeb site available to families andprofessionals across the country. TheWeb site, http://www.mdpn.msu.eduincludes information about thevalue of autopsy, answers frequentlyasked questions and offers guid-ance on how to talk to other familymembers about whether to have anautopsy performed. On the Website, network advisors emphasize theimportance of deciding in advancewhether to request a brain autopsyand include a checklist for familymembers considering autopsy.

The Network’s Web site also provides information, referrals, a listof publications, and recommenda-tions from the Michigan PostmortemExamination Workgroup. All of theinformation on the site is free to thepublic.

The following is a sample of otherweb sites that offer informationabout brain autopsy.

List of Web sites:Alzheimer’s Association GreaterWashington, D.C. Area Local BrainAutopsy Networkhttp://www.alzheimersdcmd.org/localbrain.html

Alzheimer’s Association List of Local Chaptershttp://www.alz.org/chapter/

Alzheimer’s Association San Diego Chapterhttp://www.sanalz.org/support_services/services7.html

The Diagnostic Center for Alzheimer’s Disease andNeuropathology Laboratory at theUniversity of Oklahoma HealthSciences Center in Oklahoma CityAutopsy Networkhttp://w3.ouhsc.edu/pathology/deptlabs/diagnostic_center_for_alzheimer.htm#Autopsy Assistance Network

Tulane University Medical CenterAutopsy Service http://www.tmc.tulane.edu/departments/pathology/Services.html/autopsy.html

Florida Alzheimer’s DiseaseInitiative Brain Bank (affiliated withSuncoast Gerontology Center)http://www.med.usf.edu/suncoast/alzheimer/brainbnk.htm

University of Virginia HealthServices Department of NeurologyBrain Research Facilityhttp://www.med.virginia.edu/medicine/clinical/neurology/facilities/brain-resource.html

A Checklist forFamily Membersl Discuss the autopsy decision

with all involved family members,physician(s), your religious leader,and/or people in your supportgroup.

l Identify the patient’s legal next-of-kin.

l Obtain a consent form from thefacility that will perform the autopsy.

l Keep a copy of the consent formin an accessible place.

l Give your family members andphysician a copy of the consentform.

l Become familiar with the procedure for signing the consentform at the time of death. Thoughyou will not sign the consent formuntil after death occurs, it will behelpful to identify the method youwill use.

l Request to place an informationsheet that explains the proceduresto follow at the time of death andan alert sticker in the patient’schart.

l Give your family members a copyof the procedures to be followedat the time of death.

l Find out who you need to call atthe time of death and how toreach the appropriate person during the daytime, evening hours,weekends, or holidays.

l Discuss arrangements and costsinvolved with transportation of thebody with the facility performingthe autopsy.

l Contact the funeral director andexplain that you are planning abrain-only autopsy for your familymember.

l Notify the director or administrator,director of nursing, hospice nurse,and social worker of the nursinghome or other institution of yourplans for autopsy (if applicable).

l Notify the physician who will needto complete required paperwork.

Autopsy Resources:

The National Institute on Aging currently funds 30 Alzheimer’sDisease Centers (ADC’s) at majormedical institutions across theNation. Researchers at these Centers are working to translateresearch advances into improvedcare and diagnosis for Alzheimer’sDisease (AD) patients while, at the same time, focusing on theprogram’s long-term goal—findinga way to cure and possibly prevent AD.

Areas of investigation range fromthe basic mechanisms of AD tomanaging the symptoms and helping families cope with theeffects of the disease. Center staffconduct basic, clinical, and behavioral research.

Each of the ADCs provides autopsy services to dementiapatients and volunteers withoutdementia who are enrolled in clinical research studies and trials.Some of the ADCs offer autopsyservices to a broader range ofpeople in the community both withand without dementia.

Autopsies of non-demented persons and those in the earlystages of AD are helping ADC

researchers find the first signs ofage-related brain changes andhow they may differ from brainchanges in early AD. Research ofthis type may lead to interventionsthat might help in the first stages of the disease.

For patients and families affectedby AD, many ADC’s offer:

u Opportunities for AD patientsand those without dementia tovolunteer to participate in drugtrials and other clinical researchprojects.

u Diagnostic and medical management (costs may vary).Many Centers accept Medicare,Medicaid, and private insurance.

u Opportunities for AD patients and their families to participatein support groups and other spe-cial programs.

For more information, you maycontact any of the Centers on thefollowing list. While the name of theperson who coordinates autopsieshas been listed, you may ask forinformation about any of the activi-ties described above and aboutoffices and satellite clinics at otherlocations throughout the country.

For the most current listing of theADCs visit the ADEAR Center’s Website at: http://alzheimers.org/adear/adcdir.html

ALABAMAUniversity of Alabama atBirmingham (UAB)South Birmingham, AL

Jo SelfCoordinator of UAB Brain ResourceProgramTelephone: 205-934-7359http://main.uab.edu/show.asp?durki=11627

Cost: Free to those enrolled in ADCresearch; $425 for those not enrolled.

CALIFORNIAStanford UniversityStanford, CA

Edna ChungBrain Donor Program CoordinatorTelephone: 650-852-3234

Cost: Free to those enrolled in ADCresearch.

University of California at DavisSacramento, CA

Mary Beth StampsClinical Program AdministratorTelephone: 916-734-5496http://alzheimer.ucdavis.edu/adc/autopsy.htm

Cost: Free to those enrolled in ADC research.

University of California at IrvineIrvine, CA

Brian Cummings, Ph.D.Outreach ScientistTelephone: 949-824-5032http://www.alz.uci.edu/Repository.html


University of California, LosAngeles, Los Angeles, CA

Michael Mega, M.D., Ph.D.Imaging Sub-Core DirectorTelephone: 301-794-4001http://www.adc.ucla.edu/



Alzheimer’s Disease Centers Autopsy Program Directory

Alzheimer’s Disease Education & Referral Center

PO Box 8250Silver Spring, MD

20907-8250

800-438-4380


University of California, San DiegoLa Jolla, CAMary Sundsmo, M.B.A.Assistant ChiefTelephone: 858-622-5800http://adrc.ucsd.edu/

Cost: Free to those enrolled in ADCresearch; $1,500 for those not enrolled.

University of Southern CaliforniaLos Angeles, CA

Jenny Tang, M.S.Program SpecialistTelephone: 323-442-1602http://www.usc.edu/dept/gero/ADRC/neuro_dementia.htm


FLORIDAMayo Clinic Jacksonville, FLLaura Makavrov, CRCFrancine Parfitt, M.S.H., CRCC, DirectorTelephone: 904-953-7103http://www.mayo.edu/research/alzheimers_center/

Cost: Free to those enrolled in ADCresearch. Transportation costs mayapply in some cases.

Note: The ADC may make exceptionsfor others.

GEORGIAEmory UniversityAtlanta, GA

Felicia D. Flagler, B.S.Autopsy CoordinatorTelephone: 404-728-4881http://www.emory.edu/WHSC/MED/ADC/

Cost: Free to those enrolled in ADCresearch and to those with a medicalrecord at Emory; $500 for others.

Note: Other community cases may be eligible who have made pre-arrangements and have sent medicalrecords ahead of time.

ILLINOISNorthwestern UniversityChicago, IL

Laura Herzog, Ph.D.MDRC CoordinatorTelephone: 645-695-2343http://www.brain.nwu.edu/core/endowment.htm

Cost: Free to those enrolled in ADCresearch. Fee-for-service is available forothers on a limited basis and costsapproximately $700.

Note: The State of Illinois funds 10autopsies each year for patients notenrolled in ADC research.

Rush-Presbyterian-St. Lukes Medical CenterChicago, ILBeth Howard, Brain Bank CoordinatorDanielle Werge, Study CoordinatorTelephone: 312-942-4463http://www.rush.edu/patients/radc/brain_bank.html

Cost: Free to those enrolled in ADCresearch and to those who make pre-arrangements and send medicalrecords ahead of time.

INDIANAIndiana UniversityIndianapolis, IN

Francine Epperson, Research andAutopsy CoordinatorTelephone: 317-274-1590http://www.pathology.iupui.edu/ad/

Cost: Free to those enrolled in ADCresearch. Fee-for service is available forothers.

KENTUCKYUniversity of KentuckyLexington, KYDavid R.Wekstein, Ph.D.Associate DirectorTelephone: 859-323-6040http://www.coa.uky.edu/

Cost: Free to those enrolled in ADCresearch or in the ADC’s MemoryDisorders Clinic; $700 for others at theUniversity of Kentucky PathologyDepartment.

MARYLANDThe Johns Hopkins MedicalInstitutionsBaltimore, MD

Dorothy Wickham, AdministratorTelephone: 410-955-5632Web site: under development

Cost: Free to those enrolled in ADCresearch; approximately $700 for others at the Johns Hopkins Pathology Department.

MASSACHUSETTSBoston UniversityBedford, MAJudy DeCarteret, AdministratorTelephone: 781-687-2927http://www.xfaux.com/Alzheimer/Brain_Quest.htm

Cost: Free to those enrolled in ADCresearch and others. Transportationcosts may apply depending on distance.

Note: Brain donations accepted fromout-of-State.

Harvard Medical School/Massachusetts General HospitalBoston, MA

John H. Growdon, M.D.Telephone: 617-726-1728Web site: under development


Note: Brain donations accepted fromothers on a case-by-case-basis andfee-for-service varies.

MICHIGANUniversity of MichiganAnn Arbor, MI

Chris Campbell, Brain Bank CoordinatorTelephone: 734-764-5479http://www.med.umich.edu/madrc/neuropathology.html

Cost: Free to patients enrolled in ADCresearch.

Note: Fee-for-service available from theUniversity of Michigan PathologyDepartment and the MichiganDementia Program Postmortem Networkat: (http://www.mdpn.msu.edu/).


MINNESOTAMayo ClinicRochester, MN

Kris Johnson, R.N.Telephone: 507-284-1324http://www.mayo.edu/research/alzheimers_center/


MISSOURIWashington UniversitySchool of MedicineSt. Louis, MOJan PalmerTelephone: 314-286-2683http://www.biostat.wustl.edu/adrc/index.html


NEW YORKColumbia UniversityNew York, NY

Arlene Lawton, R.N.Autopsy CoordinatorTelephone: 212-305-9086http://pathology.cpmc.columbia.edu/taub/gift.htm


Mount Sinai School ofMedicine/Bronx VA Medical CenterNew York, NY

Lucia CapitelliTelephone: 718-579-0511http://www.mssm.edu/psychiatry/adrchome.html


Note: The ADC is affiliated with theAlzheimer’s Disease and SchizophreniaBrain Bank operated by the PsychiatryDepartment of the Mount Sinai andBronx VA Medical Center.

New York UniversityNew York, NY

Sadia Faiz, M.D., M.P.H.Autopsy CoordinatorTelephone: 212-263-5108 or 212-263-6262http://aging.med.nyu.edu/


University of RochesterRochester, NY

Eileen Johnson, R.N., M.S.N. Nurse ClinicianTelephone: 716-760-6228http://www.urmc.rochester.edu/adc/index.html


Note: For others, if the primary physician has privileges at StrongMemorial Hospital, there is no chargefor the autopsy, but families pay fortransportation.

NORTH CAROLINADuke UniversityDurham, NCMari Szymanski, R.N., C.Nurse CoordinatorTelephone: 919-286-3228Toll-free: 1-866-444-2372http://www.medicine.mc.duke.edu/adrc/BB.htm


OHIOCase Western Reserve UniversityCleveland, OHAdrienne SchafferResearch Operations ManagerTelephone: 216-844-6411http://www.ohioalzcenter.org/autopsy.htm

Cost: Free to those enrolled in ADC research. Families of those notenrolled but who have been seen byan ADC physician will only pay for transportation; $700 plus transportationfor others.

OREGONOregon Health Sciences UniversityPortland, ORHerlene Benson, M.P.A.Brain Bank CoordinatorTelephone: 503-494-6923http://www.ohsu.edu/som-alzheimers/br-bank.html

Cost: Free to those enrolled in ADCresearch; donation requested from others once the autopsy has beencompleted.

Note: The ADC is affiliated with theOregon Brain Bank.

PENNSYLVANIAUniversity of PennsylvaniaPhiladelphia, PA

Gayle VialeTelephone: 215-662-4708http://www.med.upenn.edu/cndrhttp://www.med.upenn.edu/ADC/


University of Pittsburgh Pittsburgh, PA

Leslie Dunn, M.P.H.AdministratorTelephone: 412-692-2700http://www.adrc.pitt.edu/

Cost: Free to those enrolled in ADCresearch; $600 to $650 plus the cost of transportation for others.

TEXASBaylor College of MedicineHouston, TX

Suzanne Powell, M.D.Assistant Professor of PathologyTelephone: 713-394-6486http://www.bcm.tmc.edu/neurol/struc/adrc/adrc5f2.html

Cost: Free to those enrolled in ADCresearch. The hospital will assess thecost for others.

University of Texas, SouthwesternMedical Center, Dallas, TXDoris Svetlik, R.N., M.S.Administrative DirectorTelephone: 214-648-7444http://www2.swmed.edu/alzheimer/


WASHINGTONUniversity of Washington Seattle, WA

Nancy BrownResearch Study CoordinatorTelephone: 206-277-1491http://depts.washington.edu/adrcweb/

Cost: Free to those enrolled in ADCresearch. Transportation costs mayapply depending on travel distance.


CaregiverResources

New from the NationalInstitute on AgingAlzheimer’s disease puts enormousdemands and stress on the care-giver. Caregiving takes an incredibleamount of time and energy, so thattaking care of oneself can alsobecome challenging. Caregiversmay not recognize their own needs,and even when they do, they don’talways know where to find help. Thefollowing new resources from theNational Institute on Aging (NIA) mayhelp caregivers protect their healthand contribute to their own wellbeing.

NIA Exercise Kit: AVideo and GuideExercise provides great physicaland emotional health benefits.Regular exercise is especially impor-tant for people coping with theextra stresses of caregiving. The NIAExercise Kit includes a 48-minutevideotape and a 100-page guidethat promotes the benefits of physi-cal activity for older people andexplains safe exercise while showingthe viewer how to do strength andbalance exercises properly. Led byMargaret Richard—from PBS’s exer-cise show, Body Electric—the videobegins by explaining the basics of exercise and includes four com-ponents of a complete exerciseprogram: endurance or aerobicactivities, strength exercises, bal-ance exercises, and stretchingexercises. The exercise portion ofthe video consists of a gentle warm-up, strength and balance exercises,and a cool-down and final stretch.

Throughout the video, Ms. Richardfocuses on safety and proper form,and she gives information abouthow to adapt the exercises to theindividual’s ability. The guide paral-lels the video, explaining the bene-fits of exercise and offering safetyprecautions for various chronic ill -nesses. It includes illustrations of theexercises with safety tips, nutritioninformation, charts to track progressand target heart rate, and a list ofresources.

To order the NIA Exercise Kit containing a VHS videocassetteand guide, send a check or moneyorder (prepaid orders only) for $7.00to: NIA Information Center Dept. C,PO Box 8057, Gaithersburg, MD20898-8057.

For those who would like toreceive just the guide, a single freecopy is available from the NIAInformation Center at 800-222-2225or 800-222-4225 (TTY); or fax or mailthe order form on the back of thisnewsletter.

Who? What? Where?Resources for Women’sHealth and AgingMost caregivers are women, usuallywives and daughters. Women whoare AD caregivers may likely be ata time of life, at menopause orafter, when they need to pay closeattention to their own health. Who?What? Where? Resources forWomen’s Health and Aging is a 36-page booklet from the NIA and theAlliance for Aging Research. It pro-vides current telephone numbers,addresses, and Web sites for nearly100 organizations that can be ofhelp with osteoporosis, menopause,nutrition, depression, and takingmedications, as well as caregiving,sexuality, injury prevention, finances,and widowhood.

To order a free copy of Who?What? Where? Resources forWomen’s Health and Aging, call the NIA Information Center toll-free at 800-222-2225; 800-222-4225 (TTY); or fax or mailthe order form on the back of this newsletter.

Coping With Emotionsand Stress: A ResourceList for AD CaregiversTimely resources for caregivers areincluded in this revised ADEARCenter publication. It includes personal accounts that may helpcaregivers prepare and cope withthe challenges of caring for a person with AD.

Coping With Emotions and Stress:A Resource List for AD Caregiversgives an overview of many available books, articles, guides,videos, and audiocassettes aboutcoping with AD. Twenty resourcesare listed that fit into four cate -gories: caregiver coping, copingwhen a spouse or parent has AD,humor and positive attitude, andspirituality and coping.

A full description and orderinginformation are given for eachresource listed. Examples include:Alzheimer’s Sourcebook forCaregivers: A Practical Guide forGetting Through the Day; Do I KnowYou?: Living Through the End of aParent’s Life; Magic of Humor inCaregiving; and God NeverForgets: Faith, Hope, andAlzheimer’s Disease.

All of the items included in CopingWith Emotions and Stress: AResource List for AD Caregivers havebeen reviewed for relevance,accuracy, timeliness, and impor-tance. Readers may be able toborrow or rent some of the items in the resource list from a localAlzheimer’s Association chapter,hospital, or library. Otherwise, theycan be purchased from the organization listed in the “availablefrom” section of each entry.

To receive a free copy of theresource list, call the ADEAR Center,toll-free, at 800-438-4380; or fax ormail the order form on the back ofthis newsletter.


Update: NIA ClinicalTrials Database As reported in ConnectionsSummer/Fall 1999, the NIA, in conjunction with the U.S. Food andDrug Administration, has launchedan Alzheimer’s Disease Clinical TrialsDatabase of AD studies in progressat sites across the United States. TheDatabase now includes 13 trialscurrently recruiting participants.

Each trial in the Alzheimer’sDisease Clinical Trials Databaseincludes information about thesponsoring organization, a descrip-tion of the purpose, eligibilityrequirements, design of the trial,and a list of sites where theresearch will be conducted. Sometrials have direct electronic links toscientific articles that form the basisof the trial.

As of March 2000, all trials in theAlzheimer’s Disease Clinical TrialsDatabase also are posted onClinicalTrials.gov, a comprehensivelisting of clinical studies sponsoredby the NIH, other Federal agencies,the pharmaceutical industry, andnonprofit organizations. ClinicalTrials.gov is provided through theNIH’s National Library of Medicine.

You can access the Alzheimer’sDisease Clinical Trials Database onthe ADEAR Center’s Web site at:www.alzheimers.org. Click on the linkfor “Clinical Trials.” This page can besearched by location, type of therapy, study characteristics, andentry requirements. On this page,you may sign up to receive onlineupdates about new clinical trials andinformation on drug developments.

The following two trials are activelyrecruiting participants:

NINDS AD Clinical TrialResearchers at the NationalInstitutes of Neurological Disordersand Stroke (NINDS), NIH, are seekingadults diagnosed with AD, aged 50

to 89, for a research study. Thestudy is intended to find outwhether a new experimental drug,nefiracetam, improves memoryand/or slows the progression of AD.To be eligible to take part in thestudy, adults must be otherwisehealthy. Participants must have acompanion to help monitor theirprogress in the study. The study isfree of charge and takes place atthe NIH Clinical Center in Bethesda,Maryland. For more information,please call the NIH Clinical StudiesCall Center at 800-411-1222 andask for the NINDS AD study.

NIA’s Alzheimer’sDisease Anti-Inflamma-tory Prevention Trial(ADAPT)

The NIA is sponsoring a nationwidetrial looking at the effectiveness ofcertain nonsteroidal anti-inflamma-tory drugs (NSAIDs) to delay or prevent the onset of AD. The study,which will begin recruiting inJanuary 2001, will take place overa period of several years.Investigators will follow participantsand monitor whether those takingNSAIDs such as naproxen or cele-coxib are less likely to develop AD.Adults age 70 and older may beeligible to enroll if they have no cur-rent diagnosis of dementia, senility,or AD, and have a blood relativesuch as a parent or sibling with ahistory of dementia. About 2,800participants are needed. The studywill take place in the followingcities: Baltimore, MD, Boston, MA,Rochester, NY, and Sun City, AZ.Information on patient recruitmentfor this trial is available through theADEAR Center at: 800-438-4380.

Pressure Points:Alzheimer’s and AngerCaregivers experience a wide variety of emotions: grief, sadness,uncertainty, love, joy, frustration. Lessdiscussed, but often experienced, isanger. Pressure Points: Alzheimer’sand Anger by Edna L. Ballard, MSW,ACSW, Lisa P. Gwyther, MSW, LCSW,and T. Patrick Toal, MSW, is a newguide from the Joseph andKathleen Bryan Alzheimer’s DiseaseResearch Center at Duke UniversityMedical Center.

In 70 easy-to-read pages,Pressure Points: Alzheimer’s andAnger discusses such issues as set-ting limits, managing anger, identi-fying risk factors for anger in ADcare, and what to do when chil-dren or professionals get angry atthe person with AD. It offers tangiblesteps to take for responding appro-priately instead of abusively whenangry. This booklet is full of personalvignettes from participants in ADsupport groups at the Duke FamilySupport Program. They share helpfultechniques for coping and enlight-ening anecdotes about caring fora loved one with AD.

Caregivers, family members of AD patients, pastors, and healthprofessionals may benefit from thisnew publication. Physicians maywant to suggest it to family members and other caregivers.

Pressure Points: Alzheimer’s andAnger is available from the ADEARCenter for $12.50. To order thebook, send a check or moneyorder (prepaid orders only) for$12.50 to the ADEAR Center,PO Box 8250, Silver Spring, MD

20907-8250.


Brain Autopsy: A Guide for FuneralDirectors.

Chicago, IL: Alzheimer’sAssociation. 1999. 2 p.

Available from the Alzheimer’sAssociation. 919 North MichiganAvenue, Suite 1100, Chicago, IL60611-1676. (800) 272-3900; FAX:(312) 335-1110. Internet:http://www.alz.org. PRICE: 1 copyfree. $8 per 100. Contact your localAlzheimer’s Association chapter.Item Number: PF211Z.

This document is designed to helpfuneral directors work with familieswho request a brain autopsy for afamily member with Alzheimer’s disease. First, it outlines the reasonswhy families may request a brainautopsy, including confirmation ofdiagnosis, research advancement,and accurate reporting. Then, itanswers some of the questionsfamilies may have about whether abrain autopsy can cause disfigure-ment, whether it will delay funeralarrangements, how long it will taketo get the results, how much itcosts, and whether the organs canbe donated. Finally, it suggestsways the funeral director can assistfamilies when the necessary pre-arrangements have, and have not,been made.

You Can Give the Gift ofKnowledge.

Los Angeles, CA: University ofCalifornia Los Angeles. 1999.

Available from the University ofCalifornia Los Angeles. Alzheimer’sDisease Center, 760 WestwoodPlaza, Los Angeles, CA 90024-9972.(310) 206-5238; FAX: (310) 206-5287.Internet: http://www.adc.ucla.edu.PRICE: Free.

This brochure produced by the

University of California, Los Angeles(UCLA) Alzheimer’s Disease Center(ADC), is primarily for families ofAlzheimer’s disease patients insouthern California, but also maybe of interest to families in othergeographic areas. The brochureaddresses concerns of many fami-lies, including costs, whole-bodydonations, embalming, and whetherautopsies delay funeral plans or permit open caskets. It also explainswhat information researchers cangain from autopsy results. Contactinformation for the autopsy programat the UCLA ADC is included. Thisbrochure is available in English andSpanish.

Steps To Understanding FinancialIssues: Resources for Caregivers.

Chicago, IL: Alzheimer’sAssociation. 1999. 23 p.

Available from the Alzheimer’sAssociation. 919 North MichiganAvenue, Suite 1100, Chicago, IL60611-1676. (800) 272-3900; FAX:(312) 335-1110. Internet:http://www.alz.org.

PRICE: 1 copy free. $20 per 100.Contact your local Alzheimer’sAssociation chapter.

This brochure discusses the finan-cial issues that people withAlzheimer’s disease and their fami-lies may face. The first section liststhe legal and financial documentsthat should be collected andreviewed and explains how to talkabout financial issues with the per-son who has AD, other family mem-bers, and professionals. The secondsection looks at potential expensesand autonomy when deciding how

to structure the loved one’sfinances. The third section considersa range of financial resources suchas insurance–health care, disability,long-term care, and life insurance;personal resources–employment,employee benefits, retirement ben-efits, and investment assets; govern-ment assistance–Social SecurityDisability Income, SupplementalSecurity Income, Medicaid, veter-an’s benefits, State and local pro-grams, and tax benefits. It also dis-cusses financial help from the care-giver and other family members,and community resources.

Who? What? Where?: Resources forWomen’s Health and Aging.

Washington, DC: Alliance for AgingResearch. Bethesda, MD: NationalInstitute on Aging. 2000. 36 p.

Available from the NationalInstitute on Aging InformationCenter. PO Box 8057, Gaithersburg,MD 20898-8057. (800) 222-2225;TTY: (800) 222-4225; FAX: (301) 589-3014. Internet:http://www.nih.gov/nia. PRICE: Free.

This booklet focuses on health-related issues critical to women asthey age. Topics include agechanges and health promotion,common disorders of later life, taking charge, and research onwomen’s health. A special sectionhighlights Alzheimer’s disease andother brain disorders that affectolder women. A list of helpful strate-gies for caregivers of older peopleis included. Also included are lists ofresources, support groups, organi-zations, and suggested readingswith each topic.

CHID Highlights Fall 2000

Autopsy

Caregiver Resources


Alzheimer’s Caregiving Strategies.

Minneapolis, MN: HealthCareInteractive, Inc. 1998.

Available from HealthCareInteractive. P.O. Box 19646,Minneapolis, MN 55419. (888) 824-3020. PRICE: $29.95 plus $5.00shipping and handling.

This interactive program on CD-ROM is intended for caregivers ofpeople with Alzheimer’s diseaseand related dementias. The CD-ROM is divided into six sections. Thefirst section explains how to effec-tively use the program. The secondsection provides basic informationon dementia, including symptoms,causes, diagnosis, treatment, anddisease progression. Caregiving isthe focus of the third section; topicsdiscussed include enhancing care-giving skills, managing caregiverstress, and caring for the caregiver.In the fourth and fifth sections, usersdetermine the functional level ofthe person they are caring for andreceive caregiving tips based onfunctional ability. An assessmentscale ranges from one to six, withone representing normal functioning,and six representing a bedriddenperson who requires complete care.To determine functional level, care-givers can view videos of patients ateach level and read about com-mon symptoms. The final sectionincludes advice from professionalsand caregivers on issues such asbehavior management and nursinghome placement.

Reaching Communities WithAlzheimer’s Education: AComprehensive, Advanced Train-the-Trainer Manual. Second Edition.

Marks Carlson, D.; Foster, B. Reno,NV: Eymann Publications. 2000.488 p.

Available from EymannPublications. PO Box 3577, Reno,NV 89505. (800) 354-3371; FAX:(702) 358-1476. Internet:http://www.care4elders.com. PRICE:$189.95.

This manual is intended to helpprofessional caregivers train col-leagues, family members, andcommunity members aboutAlzheimer’s disease and the care-giving process. The manual con-tains didactic and case-simulatedclinical experiences, which can beused in a variety of settings, a briefsummary of adult teaching andlearning principles, background onfamily issues, and basic-andadvanced-level information aboutAD and creative caregiving strate-gies. It is divided into 11 freestand-ing units that build upon one anoth-er; elements from any unit can beused separately. The unit topicsinclude the following: adult teach-ing and learning principles; under-standing AD and other dementias;providing care for individuals withAD in various settings; family issues;applying meaningful communica-tion techniques with individuals whohave AD; assessment and man-agement of challenging behaviorsand medication use; enhancingpersonal, physical, and nutritionalcare; principles of therapeutic 24-hour programming; terminal care;and legal and ethical issues inadvanced AD. It also includes unitson caring for professional and fami-ly caregivers. The final section offersselected resources for AD trainingmaterials. Ninety-six handouts and53 transparencies are included.

Diagnosis, Management andTreatment of Dementia: A PracticalGuide for Primary Care Physicians.

Chicago, IL: American MedicalAssociation. 1999. 47 p.

Available from the AmericanMedical Association. Program onAging and Community Health. 515North State Street, Chicago, IL60610. (312) 464-5563. Internet:http://www.ama-assn.org. PRICE: $5for non-AMA members, $3 for AMAmembers. ISBN: 1579470866.

This AMA-accredited continuingmedical education booklet isintended to teach primary carephysicians about the managementof dementia and working with ADpatients and their families. It includessections on making the diagnosisand informing patients, managingcomorbid conditions, and treatingcognitive problems. It details ways ofmaking the office visit more comfort-able, supporting family caregivers,handling concerns about drivingand wandering, and preventing andresponding to elder abuse. It alsoaddresses community resources forpeople with dementia and theirfamilies and end of life issues. Thebooklet has lists of educationalresources, 14 references, and aselected bibliography.

Caregiving StrategiesDiagnosis and

Treatment


Dementia in Primary Care.

London, England: Alzheimer’sDisease International. 1999.

Available from Alzheimer’s DiseaseInternational. 45/46 Lower Marsh,London, SE1 7RG, United Kingdom.+44 20 7620 3011; FAX: +44 207401 7351. Internet:http://www.alz.co.uk. PRICE: Free.

This videotape is for primary carephysicians who diagnose and treatvarious dementias. The first sectionexplains how to screen for demen-tia using the Abbreviated MentalTest. The second section discussesthe role an informant (friend, rela-tive, neighbor, or spouse) plays inthe dementia screening. Itdescribes how informants may helpthe physician assess the patient’sfunctional and behavioral status.The third section covers differentialdiagnosis of the three most com-mon dementias: Alzheimer’s dis-ease, vascular dementia, anddementia with Lewy bodies. Thefourth section covers the pharma-cologic management of thesedementias and treatment of con-current conditions, such as depres-sion. The final section describeshow primary care physicians canassist caregivers; topics include thephysician-caregiver relationship andreferring caregivers to supportgroups and other communityresources.

Alzheimer’s: A True Story.

Princeton, NJ: Films for theHumanities and Sciences. 1999.

Available from Films for theHumanities and Sciences. PO Box2053, Princeton, NJ 08543-2053.(800) 257-5126, (609) 275-1400;FAX: (609) 275-3767. Internet:http://www.films.com. PRICE:$149.00 (purchase), $75.00(rental).

This documentary chronicles themental deterioration of Malcolm, a

husband, father, professor, and gifted pianist, who was diagnosedwith Alzheimer’s disease in 1992 atage 51. The film tells of his firstsymptoms as chronicled in his jour-nal then tracks their progression untilhis death in 1999. Barbara, his wifeand primary caregiver, expressesher feelings about the changes inher husband. She experiencesphysical and emotional strain indealing with his personality changesand losses in everyday functioning.She turns to respite care, and even-tually, nursing home placement.Music therapy proves useful until heno longer is able to play the piano.This documentary shows Malcolm’srelationships with his family in a veryrealistic manner, depictingBarbara’s unyielding commitmentto her husband.

Family Caregiver’s Guide toPlanning and Decision Making forthe Elderly.

Wilkinson, J. A. Minneapolis, MN:Fairview Press. 1999. 260 p.

Available from Fairview Press. 2450Riverside Avenue, Minneapolis, MN55454-1400. (800) 544-8207. EMAIL:[email protected]. PRICE:$16.95. ISBN: 1577490770.

This book is a family caregiver’stool for planning and decision mak-ing for older people. It includespractical advice, forms, and check-lists that caregivers can use to col-lect and organize informationneeded to make informed deci-sions. It addresses home safety,financial planning, medical history,medications, home healthcare andother services, Medicare andMedicaid, assisted-living and otherhousing options, powers of attorney,living wills, long-distance caregiving,types of health professionals, keydocuments, and support networks.A list of eldercare organizations andother community resources, hot-lines, and helpful Internet sites areincluded.

Performance Improvement in LongTerm Care, Subacute Programs,and Dementia Special Care Units.

Oakbrook Terrace, IL: JointCommission on Accreditation ofHealthcare Organizations. 1998.163 p.

Available from the JointCommission on Accreditation ofHealthcare Organizations. OneRenaissance Boulevard, OakbrookTerrace, IL 60181. (630) 792-5800.Internet access:http://www.jcaho.org. PRICE:$40.00. ISBN: 0866885900.

In this book, the Joint Commissionon Accreditation of HealthcareOrganizations presents a frameworkfor performance improvement andits application in long-term care,subacute programs, and dementiaspecial care units. The first chapterprovides an overview of the historyand basic principles upon whichthe framework is built and its pri-mary components: the externalenvironment, the internal environ-ment, and the cycle for improvingperformance. The subsequent fivechapters explore each stage of theimprovement cycle, which includedesigning new processes, measur-ing how these processes perform,assessing data about performance,and improving performance basedon this assessment. Each chapterincludes examples adapted fromexperiences in actual long-termcare facilities, dementia specialcare units, and subacute programsacross the country. Appendicescontain information about team-work skills essential to improvementefforts and a sample of perform-ance-monitoring forms.

Family Caregiving

Special Care Units


February 8-9, 2001Alzheimer’s 2001: TranslatingScience to PracticeDurham, NC

Contact:Bryan Alzheimer’s Disease ResearchCenterBox 3600Duke University Medical CenterDurham, NC 27710919-660-7510

February 23-26,2001American Association for GeriatricPsychiatry Annual Meeting (AAGP)San Francisco, CA

Contact:American Association for GeriatricPsychiatry 7910 Woodmont Avenue, Suite 1050Bethesda, MD 20814301-654-7850 ext.106

March 8-11, 2001First Annual Conference ofAmerican Society on Aging and The National Council on The AgingNew Orleans, LA

Contact:American Society on Aging833 Market Street, Suite 511San Francisco, CA 94103-1824415-974-9600

March 8-11, 2001Council on Social Work EducationAnnual Program Meeting:Workshops on AgingDallas, TX

Contact:Council on Social Work Education1725 Duke Street, Suite 500Alexandra, VA 22314-3457703-683-8080

March 27-30, 2001National Conference of theAlzheimer’s Association of AustralianCapitol Territory: Together on aJourneyCanberra ACT, Australia

Contact:Secretariat of the NationalConference of the Alzheimer’sAssociation of Australian CapitolTerritory - ConSecPO Box 3127Belconnen Delivery CentreACT 2617 Australia61-2-6251-0675 (phone)61-2-6251-0672 (fax)

April 21-24, 2001American Association ofNeuroscience Nurses 33rd AnnualMeetingSan Francisco, CA

Contact:American Association ofNeuroscience Nurses4700 West Lake AvenueGlen View, IL 60025-1485888-557-2266

May 9-13, 2001American GeriatricsSociety/American Federation forAging Research Annual ScientificMeetingChicago, IL

Contact:American Geriatrics Society770 Lexington Avenue, Suite 300New York, NY 10021212-308-1414

July 15-18, 200110th National Alzheimer’s DiseaseEducation Conference: New Directions in Alzheimer CareChicago, IL

Contact:Alzheimer’s Association919 North Michigan Avenue, Suite 1100Chicago, IL 60611-1676800-272-3900 or 312-335-5790

Order FormAlzheimer’s Disease Education and Referral Centerq Coping with Emotions and Stress: A Resource List for AD Caregivers (R–09)

National Institute on Aging Information Centerq Who? What? Where? Resources for Women’s Health and Aging (HP–11)q Exercise: A Guide from the NIA (NIA–48)

You may ask the ADEAR Center for a topical search (a list of materials) on another subject related to Alzheimer’sdisease. Outline the subject for your search in the space below._____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________To ensure that we can contact you with any questions regarding the search, please provide a daytime telephone number: ( ____)________________.

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q Check here if you are a health professional or a professional caregiver and would like your name added to theADEAR Center mailing list to receive future issues of Connections.

To order any of the above materials send this page to:ADEAR Center, PO Box 8250, Silver Spring, MD 20907-8250

You also may call our toll-free telephone number: 800-438-4380; reach us by fax: 301-495-3334; or contact uson the Internet: e-mail = [email protected] and Web site = http://www.alzheimers.org

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