the wisconsin alzheimer’s institute 1998-2003 1998 to 2003 summary.pdf · leader in affecting...

Five years of excellence in Alzheimer’s research, outreach, and education

The Wisconsin Alzheimer’s Institute 1998-2003The Wisconsin Alzheimer’s Institute 1998-2003Five years of excellence in Alzheimer’s research, outreach, and education

7818 Big Sky Drive,Suite 215Madison, Wisconsin 53719

Phone: 608-829-3300Email: [email protected]

Fax: 608-829-3315www.medsch.wisc.edu/wai

ABOUT THIS PUBLICATION

The purpose of this booklet isto provide a 5-year report of theactivities of the University ofWisconsin Medical SchoolWisconsin Alzheimer’s Institute.

Further information about theInstitute’s programs can befound at the following Web site:www.medsch.wisc.edu/wai

CONTACT

Wisconsin Alzheimer’s Institute7818 Big Sky Drive, Suite 215Madison, Wisconsin 53719

Phone: 608-829-3300Email: [email protected]: 608-829-3315www.medsch.wisc.edu/wai

ACKNOWLEDGEMENTS

Wisconsin Alzheimer’s Institute

Mark A. Sager, Director

Barbara Lawrence, SeniorOutreach Specialist

Ellen Felix, Outreach Specialist

Heidi Duschak, InformationProcessing Consultant

Judy Smith, Administrative Assistant

Jim Cooper, Research Specialist

Nick Weber, Research Specialist

Robert Rancourt, Administrator

Desktop Publishing

Heidi Duschak

Photographs

UW-Madison UniversityCommunications, Jeff Miller

Wisconsin Alzheimer’s Institute

Cover photo: Clipart.com

The Wisconsin Alzheimer’s Institute (WAI) is committed to creating apublic health environment in Wisconsin in which Alzheimer’s disease(AD) and related dementias are widely recognized, well understood,aggressively and appropriately treated, and in which those who areafflicted and those who care for them receive the education, qualityservices and support they need to effectively cope with this devastatingchronic disease.

As a center within the University of Wisconsin-Madison Medical School,the WAI actively supports the Wisconsin Idea and is recognized as aleader in affecting change by initiating efforts and partnering with othersto educate, research, advocate and develop service programs that haveexcellence, innovation and significant potential to improve currentpractice. The WAI acts as a source of information, as a facilitator ofcollaboration and as a catalyst for efforts to substantially impact thequality of life for persons and families affected by AD.

Mission

In the evolution and growth of any organization, there are organizations and people who are instrumentalin and critical for its success. The Wisconsin Alzheimer’s Institute is no different and is indebted to thefollowing people and organizations:

Mary AndersonFormer Executive DirectorSouth Central Alzheimer’s Association ChapterMadison, Wisconsin

Sanjay Asthana, MDHead, Section of Geriatrics and GerontologyUniversity of Wisconsin Hospital and ClinicsMadison, Wisconsin

Dan BaderPresident, Helen Bader FoundationMilwaukee, Wisconsin

Sharon BeallConsultant, Bureau on Aging and Long-Term CareSupportMadison, Wisconsin

Mary Brintnall-Peterson, PhDProgram Specialist in AgingUniversity of Wisconsin ExtensionMadison, Wisconsin

Philip Farrell, MDDean, University of Wisconsin-Madison MedicalSchoolMadison, Wisconsin

Jack Geller, PhDMarshfield Medical Research FoundationMarshfield, Wisconsin

Janet Greger, PhDDepartment of Nutritional SciencesUniversity of Wisconsin-MadisonMadison, Wisconsin

Bruce Hermann, PhDDirector, NeuropsychologyUniversity of Wisconsin Hospital and ClinicsMadison, Wisconsin

Mark E. LefebvreVice-President, Health SciencesUniversity of Wisconsin FoundationMadison, Wisconsin

Robin MayrlVice-President, Helen Bader FoundationMilwaukee, Wisconsin

Donna McDowellDirector, Bureau on Aging and Long-Term CareSupportMadison, Wisconsin

Beth Meyer-ArnoldVice PresidentWisconsin Adult Day Services AssociationMilwaukee, Wisconsin

Northwestern Mutual FoundationMilwaukee, Wisconsin

Kim Petersen, MDElder AdvocatesSpring Green, Wisconsin

Patty PorterSenior Director For Health SciencesUniversity of Wisconsin FoundationMadison, Wisconsin

Helen RamonExecutive DirectorSoutheastern Wisconsin Area Agency onAgingBrookfield, Wisconsin

Carol Ryff, PhDDirectorInstitute on AgingMadison, Wisconsin

Janice SmithAssociate Director, Bureau on Aging and Long-Term Care SupportMadison, Wisconsin

Kris Thompson (retired)University of Wisconsin FoundationMadison, Wisconsin

Wisconsin Alzheimer’s Association ChapterNetworkMadison, Wisconsin

Thank you

Comments from the Director.................................................................5

History .....................................................................................................6

Advisory Board ........................................................................................7

Program Goals.........................................................................................8

Making A Difference in Medical Education ............................................9

Continuing Medical Education................................................... 10

Medical Student Education ........................................................ 11

General Public.............................................................................. 11

Policymakers ............................................................................... 13

Promoting the Wisconsin IDEA—Outreach ........................................ 15

Rural Program Development ...................................................... 16

WAI Dementia Diagnostic Clinic Network ................................. 17

Dementia Care Enhancement in Adult DayService Program .......................................................................... 19

Contributing to the Future—Research ............................................... 21

Wisconsin Registry for Alzheimer’s Prevention ....................... 22

Alzheimer’s Early Recognition Telephone System ................... 23

Development of a Brief Cognitive Screen forMild Cognitive Impairment ....................................................... 23

Worker Education, Training and Assistance Program .............. 24

The Aging Brain Symposium ..................................................... 25

Thank You ............................................................................................ 27

Table of Contents

4Wisconsin Alzheimer’s Institute

Jeff Miller, UW-Madison University Communications


In the early days of the WAI, it becamevery apparent that any efforts to improvethe quality of long-term care would bewasted if the average work life of a typicaldirect care worker was only 6 months.Workers simply did not remain on the joblong enough to make use of educationand experience. In an effort to gainadditional insight into the worker turnoverproblem, the WAI convened two panelsof national and local experts who wereasked to provide direction to WAI’s effortsto overcome barriers to improving qualityof care in long-term care. Therecommendations of the panels eventuallyled to the development of the WorkerEducation, Training and Assistance (WETA)program which is a model of educationand training patterned after a program inNorth Carolina that had reduced workerturnover in the childcare industry by 50%.The WETA program conducted between

1999-2002 provided participants with aseries of educational and training programsas well as opportunities for advancementand recognition, including salary increasesand other benefits.

The 3-year demonstration project wasconducted in 92 of Wisconsin’s assistedliving facilities and educated over 200direct care workers and their supervisors.The WETA program collected importantinformation about the components of jobsatisfaction, causes of worker turnover andthe demographic characteristics of thelong-term care workforce. The WETAdemonstration and the lessons learnedduring the project have made significantcontributions to Wisconsin’s effort todevelop a well-trained and high-qualityworkforce in the long-term care industry.

The Aging Brain SymposiumIn May of 2000, the WAI co-sponsored a2-day event in Madison with the WilliamS. Middleton Memorial Veteran’s Hospital,Geriatric Research Education ClinicalCenter (GRECC) and MITOS, Inc., tostimulate basic science research into braindisorders. The symposium was entitled,“The Aging Brain: Mechanisms andInterventions,” which brought together anumber of well-known researchers toconvey the most recent research findingsin the area of genetics of aging and AD.Fifty-three researchers and geneticists,mainly from the UW, attended this eventwhich created a scholarly discussion aboutmechanisms of disease and future areasof research.

WETA facilitator providingleadership training to long-term care providers.


The Wisconsin Alzheimer’s Institute (WAI) became a center at the University of Wisconsin-Madison Medical School in 1998. From the very beginning, the WAI was unique. Theconcept for the WAI came not from the academic community but from a statewide coalitionof dedicated service providers and advocates organized by the Bureau on Aging andLong-Term Care Resources and the Helen Bader Foundation in Milwaukee. The WAI isdistinguished from existing centers in the Medical School by these unique origins and byits statewide service orientation mandated by the Legislature in 1995 WI Act 464. WI Act464 provides financial support to the WAI to provide training and technical assistance toother providers of services to persons with Alzheimer’s disease; determine the need for andcreate appropriate services in coordination with local agencies and service providers; andcollect and disseminate information on Alzheimer’s disease (AD) in order to advise thedepartment (Health and Family Services) of public policy issues concerning the disease. Thislegislation requires WAI program areas to encompass service, outreach, and advocacy, inaddition to the Medical School’s traditional activities of education and research.

I am fortunate to have been the Director of the WAI since 1998 and after five years,understand that community partnerships are at the heart of the WAI’s character and success.We are proud of our role in the Medical School and our academic heritage, but have neverforgotten the Wisconsin Idea and the needs of rural and urban communities for education,training, advocacy and service. Our broad mission provides guidance to our program areasand distinguishes us within the larger community of the University.

The impact of the WAI on the Medical School and on the State of Wisconsin is detailed inthis report. We have worked with hundreds of persons, organizations and healthprofessionals to better the care and treatment of persons and families affected by AD. Weare particularly indebted to the Wisconsin Alzheimer’s Association Chapter Network fortheir unwavering support of families and of this Institute’s effort to educate physicians andthe public about the myths of the past and the realities of the future. I personally want tothank Mary Anderson, Mary Brintnall-Peterson, Ph.D., and Robin Mayrl for their visionsabout the future and their dedication to the WAI mission.

AD research is now one of the largest items in the budget of the National Institute ofHealth and new discoveries are changing the Alzheimer’s landscape. The WAI is a majorparticipant in AD research at the Medical School and is a major translator of researchfindings into practice to make a difference in the lives of persons affected by this disease.We are proud of our roots, we are proud of the past five years, and we are looking forwardto the future.

Mark A. Sager, MDDirector, Wisconsin Alzheimer’s InstituteProfessor, Medicine and Population Health SciencesOctober 2003


disability or by deficits in other areas ofcognition, such as reasoning or languageabilities. Approximately 10-15% ofpersons with MCI develop AD each year,and as a result, MCI is considered an earlywarning sign of incipient AD. There issubstantial interest in MCI because of theavailability of pharmacological treatmentsthat can potentially slow the progressionof dementia. Early recognition of MCIcould eventually lead to the treatment ofpersons who may have developed isolatedmemory impairment, but who may notprogress to full-blown symptoms of AD.

This study to identify persons with MCIinvolved 200 healthy normal persons witha mean age of 75 who were recruited fromthe General Internal Medicine and theGeriatric Clinics of the University ofWisconsin Hospital and Clinics. Althoughthe majority of these older adults had nocomplaints of memory impairment, oneout of every five was found to haveundetected cognitive impairment. Tenpercent were found to have classic signsand symptoms of MCI and an additional9.5% were found to have actual symptomsand signs of dementia. The fact that oneout of five persons had unrecognized MCIor early dementia is disturbing, suggestingthat the current health care system doesnot diagnose and therefore, does not treata significant proportion of persons withcognitive disorders.

The results of this study are now servingas the basis for a statewide initiative topromote early diagnosis and treatment ofpersons with AD. This initiative is incollaboration with the WisconsinAlzheimer’s Association Chapter Network,WAI-affiliated dementia diagnostic clinics

and the University of Wisconsin’sDepartment of Continuing MedicalEducation. In this research, the WAI hasidentified an important public healthproblem and is now trying to do somethingabout it.

Worker Education, Training andAssistance (WETA) ProgramDemonstration ProjectPersons with AD and related dementias arethe largest consumers of long-term careservices. Almost 70% of persons nowliving in Wisconsin nursing homes sufferfrom a dementing disorder, the mostcommon of which is AD. Although personswith dementia are the largest consumersof long-term care, they are also consumerswho cannot complain about poor qualityof care. Concerns about quality in long-term care are widespread and became aninterest of the WAI in its role as an advocatefor persons with dementia. Poor qualityhas been attributed in part to the long-term care industry’s reliance on poorly paidand a poorly trained workforce to providecare.

Direct care workers are the nurse’s aidesand personal care workers who provide90% of patient care in our long-term caresystem. As the lowest paid employees inlong-term care, direct care workers havelimited opportunities for promotion ormeaningful pay raises and are often viewedas having dead-end occupations. Notsurprisingly, 50-100% of direct care workersin long-term care leave their jobs eachyear. This worker turnover has a majorimpact on quality of care.

Contributing to the Future—Research Comments from the Director


The Wisconsin Alzheimer’s Institute (WAI)became an academic center in 1998 andwas initially supported by state andMedical School funds as well as by a grantfrom the Helen Bader Foundation,Milwaukee, Wisconsin. The creation of theWAI represented a unique partnershipdeveloped to address a growing need toimprove the quality of care and theavailability of supportive servicesprovided to affected persons and theirfamilies. The WAI is the only MedicalSchool Center dedicated entirely toadvancing knowledge about AD througheducation, research, and service.

The WAI was conceptualized in 1996 by aconsortium of public and private partnersconsisting of numerous community basedorganizations and individuals throughoutWisconsin. The founding WAI partnersrepresented an array of service andeducational organizations throughoutWisconsin who have extensive expertiseand experience in training, education,service provision, information systems andadvocacy and included the following:

History

Founding partners of the WAI. Pictured from topleft to bottom right: Sharon Beall, Consultant, Bureauon Aging and Long-Term Care Support; KrisThompson (retired), University of WisconsinFoundation; Mary Bouche, Executive Director,Alzheimer’s Association of Greater Wisconsin; MarkE. Lefebvre, Vice-President, Health Sciences,University of Wisconsin Foundation; Janet Greger,PhD, University of Wisconsin Department ofNutritional Sciences; Carol Ryff, Ph.D., Director,Institute on Aging; Mary Brintnall-Peterson, Ph.D.,Program Specialist in Aging, University of WisconsinExtension; Mark A. Sager, MD, Director, WisconsinAlzheimer’s Institute; Robin Mayrl, Vice-President,Helen Bader Foundation; David Meissner, retired

• Wisconsin Alzheimer’s Association Chapter Network• Wisconsin Association of Area Agencies on Aging• University of Wisconsin-Extension• Marshfield Medical Research Foundation• Wisconsin Technical College System• Wisconsin Adult Day Services Association• Lutheran Social Services of Wisconsin and Upper Michigan• Institute on Aging, University of Wisconsin-Madison• ElderAdvocates

The unique history of the WAI and the diversity of its founding partners are reflected in itsmission and programs designed to benefit the people of Wisconsin.


delay or prevent the onset of AD. It is ourhope that WRAP will contribute to ourknowledge of the causes and mechanismsof disease and that eventually AD will beviewed much like atherosclerotic heartdisease, a disease developing over alifetime that can be identified at pre-clinical stages and potentially prevented.The success of WRAP and studies like itwill play a major role in determining theimpact that AD will have on our children’sfuture.

Alzheimer’s Early RecognitionTelephone System (ALERTS)The WAI and Healthcare TechnologySystems, Madison, WI, are collaborating tofind new ways to provide the public withinformation about AD. The project,Alzheimer’s Early Recognition TelephoneSystem (ALERTS) is funded by the NationalInstitute of health and consists of aninteractive voice response system. TheWAI is responsible for developing thecontent for ALERTS, marketing theprogram throughout Wisconsin andassisting with data collection for evaluationof the program’s effectiveness. TheWisconsin Alzheimer’s AssociationChapter Network and the WAI affiliateddiagnostic clinics collaborated with theWAI to develop the content, and with otherstatewide and local agencies, haveassisted in the marketing of the system.

The purpose of ALERTS is to makeinformation about AD and dementia careaccessible to persons who are isolated

either socially or geographically and whoare interested in learning more aboutsymptoms of memory loss in themselvesor others.

The content is targeted to the generalpublic and caregivers of persons withdementia and includes:

• A quick screening tool that providesimmediate feed back and referral, ifnecessary, to the person’s primaryphysician or a local WAI affiliatedDementia Diagnostic Clinic.

• Answers to frequently asked questionsabout caring for a person with dementiaas well as referral to the Alzheimer’sAssociation.

• General information about memoryloss, types of memory loss and how toproceed if someone has a problem withmemory loss.

ALERTS is just one WAI program that seeksto promote better public understanding ofAD and earlier recognition and treatmentof dementing conditions.

Development of a Brief CognitiveScreen for Mild CognitiveImpairmentIn 2000, the WAI received a grant fromPfizer Pharmaceutical Corporation to beginwork on developing a screening instrumentto identify mild cognitive impairment(MCI). MCI is characterized by an isolatedmemory impairment that is notaccompanied by a significant functional


No group reflects the mission of the WAI better than the persons comprising the WAIAdvisory Board. Board members represent academic and non-academic partners whoserve without remuneration and who provide the WAI with their perspectives, expertiseand much appreciated support.

Advisory Board

CURRENT MEMBERS

Sanjay Asthana, MD, Associate ProfessorUniversity of Wisconsin Medical School,Madison

Mary Brintnall-Peterson, PhD, ProfessorUniversity of Wisconsin-Extension,Madison

Jim Hartert, MDChanhassen, MN

Bruce Hermann, PhD, ProfessorUniversity of Wisconsin Medical School,Madison

Robin Mayrl, Vice PresidentHelen Bader Foundation, Milwaukee

David Meissner, retiredGrafton, WI

Helen Ramon, Executive DirectorSoutheastern Wisconsin Area Agency onAging, Brookfield

Paul Rusk, Executive DirectorAlzheimer’s Association, South CentralChapter, Madison

Carol Ryff, PhD, ProfessorInstitute on Aging, University ofWisconsin-Madison, Madison

Sig TomkalskiOak Creek, WI

PAST MEMBERS

Mary Bouche, Executive DirectorAlzheimer’s Association, GreaterWisconsin Chapter, Green Bay

Randall Brotherhood, JDMilwaukee, WI

Stewart Gullickson, JD, retiredMadison, WI

David Slautterback, MDAARP, Madison, WI


Wisconsin Registry forAlzheimer’s Prevention (WRAP)A recent study now estimates that thenumber of older persons with AD willincrease dramatically from 4.5 million to13.2 million over the next 50 years. Theincrease in the number of persons withAD will occur primarily in the populationaged 85 and older which is the most rapidlygrowing segment of our society. The agingof our society and the expected rapidincrease in the prevalence of AD will haveimportant consequences for our societyunless science can slow or prevent thedevelopment of the disease. The WAI incollaboration with the Section of Geriatricsand Gerontology and the Department ofNeurology is now participating in researchwhich could lead to early detection andeventually prevention of AD.

With support from the Northwestern Mutualand Helen Bader Foundations inMilwaukee, the WAI has developed theWisconsin Registry for Alzheimer’sPrevention (WRAP) which is a listing ofalmost 500 adult children of Wisconsinresidents diagnosed with AD. Children ofpersons with AD are at increased risk ofdeveloping AD and are the persons mostlikely to benefit from advances in ourunderstanding of preventing AD.Enrollment began in September 2001 andhas been expanded beyond Dane Countyto include adult children of affectedparents living anywhere in the state ofWisconsin. In this project, the WAI isproviding concerned persons from all over

Contributing to the Future—Research

Wisconsin an opportunity to participatein research that may eventually lead to adelay in the onset or prevention of AD.

All WRAP participants are participating ina longitudinal study to contribute to ourunderstanding of why persons at differentlevels of genetic risk either proceed ordo not proceed to develop symptoms ofAD. In addition, many WRAP participantsare participating in collaborative researchprojects designed specifically to preventor slow the onset of AD. The PreventingAlzheimer’s with Statin Therapy (PAST)study, headed by Cynthia Carlsson, M.D.,will determine whether a cholesterol-lowering drug, simvastatin, will reduce theamount of a protein, A-beta42, in thecerebrospinal fluid. The deposition ofamyloid plaques containing A-beta42 hasbeen shown to be associated with anincreased risk of developing AD.

WRAP enrollees are also involved in asecond study, Cognitive Brain Imaging ofNormal Aging and Early Detection of AD,headed by Sterling Johnson, Ph.D. Thegoal of this research is to determinewhether information obtained fromfunctional magnetic resonance imagingcan predict who will go on to developAD.

WRAP currently represents one of the fewregistries to enroll a group of middle-agedpersons who may be at increased risk ofdeveloping AD and who have expressedwillingness to participate in genetic,epidemiologic and clinical studies to


The program goals of the WAI direct staff to work with faculty and students at the MedicalSchool and the University of Wisconsin, as well as with individuals, organizations andcommunities throughout Wisconsin. To be successful, the WAI has developed expertise ineducation, outreach and service, all of which are at the center of WAI activities and reflectthe skills and interests of its staff. The program goals which have guided the WAI includethe following:

Education• Develop innovative, high-quality education and training programs for health care

providers caring for persons with AD and related dementias.

Outreach• Work collaboratively with professionals, agencies and systems throughout Wisconsin

to improve programs and services.• Provide technological expertise to empower local communities to improve quality of

care and the availability of services.• Advocate for services and resources to improve the quality of life for persons affected

by AD and related dementias.

Research• Facilitate and coordinate research relating to the causes, management and treatment of

AD and related dementias.

Program Goals


Contributing to the Future—Research

Wisconsin Registry for Alzheimer’s Prevention

Alzheimer’s Early Recognition Telephone System

Development of a Brief Cognitive Screen for MildCognitive Impairment

Worker Education, Training and Assistance Program

Aging Brain Symposium

1998-2003

Making A Difference in Medical Education

Continuing Medical Education

Medical Student Education

General Public

Policymakers

1998-2003


individuals to adapt existing standards fordementia care; develop and implementeducational programs; recruit and trainmentors to assist ADS providers; andevaluate and disseminate the program.

The WAI continues to work withindividuals and organizations throughoutWisconsin to plan, implement, evaluate andimprove dementia care in ADS. Thisproject is an example of the WAIcommitment to Wisconsin communitiesand the long-term care of persons withdementia.

Day Break Adult Day Care in Barron County—One ofnumerous ADS providers the WAI has been forunateto work with.



Continuing Medical EducationThe WAI strives to improve the diagnosticand therapeutic capabilities of physiciansand other health professionals who carefor persons with AD and related dementias.Because of the rapid advances in the areaof AD, annual continuing medicaleducation (CME) conferences have beenheld in Madison and throughout Wisconsinto provide health care providers with theupdated information they need toappropriately diagnosis, treat, and managethose afflicted with the disease.

Since 1999, the WAI has collaborated withthe UW Medical School, Section ofGeriatrics and Gerontology and the Officeof Continuing Medical Education to offer28 CME opportunities to all who wouldcome. Through such efforts, the WAI haseducated over 1,230 primary carephysicians, nurses, social workers, andother interested health professionalsworking in Wisconsin.

The WAI’s commitment to continuingmedical education goes beyond thoseliving in major metropolitan areas likeMadison and Milwaukee. The WAI hashelped to organize and has participatedin certified learning opportunities in over25 towns and cities, including those as faraway as Cumberland and Ashland,Wisconsin, and as close as Fort Atkinsonand Stoughton, Wisconsin.

In 2002, the WAI collaborated with theOffice of Continuing Medical Educationto offer an on-line version of “Alzheimer’sDisease: An Update.” Focusing on thesame objectives as the annual conference,the on-line version was created becauseof these benefits to participants:

• Credits can be earned without aprovider having to leave his/herpractice or home.

• No travel, meal, or lodging costs areinvolved.

• Material can be reviewed anytime.• Participants can complete the course

and earn CME free of charge (at theWAI’s expense).

To date, over 220 physicians havecompleted the on-line version.

PET Scanning: Measuring the metabolic activity ofthe brain to detect Alzheimer’s disease.


The network of diagnostic clinicsestablished by the WAI serves as a modelof University and communitycollaboration to promote early diagnosisand treatment of persons with AD. In 2002,the Michigan Department of Public Health,the Geriatric Education Center at WayneState University and Michigan StateUniversity began the process ofdeveloping a similar model of dementiadiagnostic clinics in an effort to duplicateWAI’s program in Michigan.

In addition to providing state of the artcare, the WAI dementia diagnostic clinicnetwork is dedicated to contributing toour knowledge of dementia care throughresearch. In May, 2003 a DementiaDiagnostic Screening Study wasimplemented with data collected at allclinics. The goal of this study is todetermine the clinical usefulness ofcommon cognitive screening instruments

Janelle Cooper, MD, Director and staff of The MemoryCenter, Affinity Health System, Oshkosh, Wisconsin.

in identifying cognitive impairment. Thestudy is expected to be complete at theend of 2003 and will have importantpractical implications for the diagnosis andtreatment of dementing conditions.

Dementia Care Enhancementin Adult Day Service ProgramWisconsin Adult Day Services (ADS) arean important part of the long-term carecontinuum and offer a viable alternativeto institutional care by providingsupportive care in the community. ADSare caring environments that offerassistance to families, but moreimportantly, offer a place of acceptancefor persons with various disabilities. Thisis particularly true for persons withdementia who are often isolated from theircommunity. ADS offer persons withdementia opportunities to grow and learnwithin the context of their disability.

Only about 20% of ADS nationally arespecifically trained to provide care formemory-impaired individuals who arelarge consumers of community- andinstitutionally-based care. In 2000, theHelen Bader Foundation awarded the WAIa grant to assist ADS in advancing bestpractices, adopting innovations andimproving the care of persons withdementia. WAI has been fortunate to workwith the Wisconsin Adult Day ServicesAssociation (WADSA), numerous ADSproviders across the state and interested


Medical Student EducationThe WAI received funding from theUniversity of Wisconsin-Madison Schoolof Medicine, Office of Medical Education,Research and Development, theAssociation for American MedicalColleges and John A. Hartford Foundationin 2001 to develop and evaluate a web-based module for teaching the basics ofAD to first year medical students enrolledin the Patient, Doctor and Society 2 course.A pilot of the web-based module debutedfor the Spring 2002 semester.

The web-based module replaces requiredpre-class reading material and consists of25 minutes of didactic information and apictorial presentation by Laura Smail, whocared for her husband with AD. The web-based module is followed by in-classpresentations by caregivers who relate

A slide from the medical student web-based modulefrom the pictoral presentation by Laura Smail whocared for her husband John (pictured) with Alzheimer’sdisease.

their experiences as advocates for parentsand spouses affected by AD. Thepresentations are often emotionalrenditions of the unique challengesconfronting caregivers and providemedical students with a glimpse of thereality that characterizes dementingdisorders.

Three hundred students have nowcompleted the module which has provento be an effective way to teach not onlythe science but also the art of medicine.

The web-based module has beenrecognized for its innovation by theAmerican Geriatrics Society and theAssociation of American MedicalColleges.

General PublicIn the area of public education, the WAIis a resource, not an island, in Wisconsin.The WAI is committed to raising interestand awareness of AD by the general public.The WAI has helped organize and hasparticipated in over 84 educationalprograms reaching over 4,400 people intowns and cities throughout Wisconsin. Inits efforts to educate the general public,the WAI has been fortunate to partner withthe Wisconsin Alzheimer’s AssociationChapter Network, the State of Wisconsinand multiple organizations andindividuals.


Promoting the Wisconsin IDEA—Outreach

• Calumet Area Memory ClinicNelson Family Clinic, LLCHilbert, Wisconsin

• Eau Claire Family Medicine ClinicGeriatric Diagnostic CenterEau Claire, Wisconsin

• Franciscan Skemp HealthcareDementia Care ProgramLa Crosse, Wisconsin

• Friendship VillageMilwaukee, Wisconsin

• Geriatrics InstituteSinai Samaritan Medical CenterMilwaukee, Wisconsin

• Holy Family Memory AssessmentClinic, Park Medical CenterManitowoc, Wisconsin

• Memory Assessment Center,Cedar CommunityWest Bend, Wisconsin

• Memory Assessment ClinicUW-Health Hospital and ClinicsMadison, Wisconsin

• Memory Assessment Clinic LakeviewCenter, Aging and Disability ResourceCenter of Marathon CountyWausau, Wisconsin

• Memory Care Clinic,Beaver Dam Community HospitalBeaver Dam, Wisconsin

• Memory Diagnostic Clinic, Dean ClinicMadison, Wisconsin

• Memory Diagnostic Center ofNorthwest WisconsinCumberland, Wisconsin

• Northeast Wisconsin MemoryAssessment CenterAlgoma, Wisconsin

• Northeast Wisconsin MemoryAssessment CenterGreen Bay, Wisconsin

• Northern Wisconsin MemoryDiagnostic Center, RhinelanderRegional Medical GroupRhinelander, Wisconsin

• Richland Area Geriatric AssessmentClinicRichland Center, Wisconsin

• St. Francis Hospital Memory LossResource CenterMilwaukee, Wisconsin

• St. Michael Hospital Memory LossResource CenterMilwaukee, Wisconsin

• Stateline Area Memory ClinicBeloit, Wisconsin

• The Memory Center, Affinity Health SystemOshkosh, Wisconsin

WAI-Affiliated Dementia Diagnostic Clinic Network



A Visit with Amy Tan: In February 2002,the WAI and the UW Foundation hosted aluncheon in Milwaukee for 270 keycollaborators in the area of AD. Theluncheon featured Amy Tan, best-sellingauthor of The Joy Luck Club, and mostrecently, The Bonesetter’s Daughter. TheBonesetter’s Daughter relates Ms. Tan’spersonal experience with her mother’s AD.Ms. Tan read excerpts from TheBonesetter’s Daughter which were verytouching and thought provoking.

The goals of the event were to raise publicinterest in AD and the work of the WAI, tothank collaborators and to forge newrelationships with organizations interestedin AD research and care.

SAGE: AD and other irreversibledementias create unique challenges forcaregivers living at home and ininstitutional settings. In the past few years,there is an understanding that the physicalenvironment is critically important forpersons with cognitive impairments. Thedesign and structure of home andinstitutional environments should work tomaximize awareness and orientation andto provide a sense of safety, security andmeaningful stimulation. To promotecaring environments, the WAI hascollaborated with the Society for theAdvancement of GerontologicalEnvironments (SAGE) and the WisconsinAssociation of Homes and Services forthe Aging (WAHSA) to host two symposiafor persons interested in improving thequality of built environments for long-term care. Over 200 professionals fromthroughout Wisconsin have attended these1-day events which are designed to createan interactive forum for multi-disciplinarycollaboration, resource-sharing andinnovative thinking. The popularity ofthe symposia is reflected in the diversityof the credentials of the attendees thathave included architects, developers,interior designers, legislators,manufacturers, long-term care facilityadministrators, researchers, state regulatorsand students.

Amy Tan pictured with Mark A. Sager, Dean PhilipFarrell, University of Wisconsin Medical School andhis wife, Alice Farrell.


taskforces that seek their assistance. TheWAI has made valuable contributions toWisconsin in the areas of elder abuse,managing problem behaviors, staff trainingfor community-based residential facilities,caregiver training, community-baseddementia care management anddeveloping dementia care outcomes forlong-term care.

WAI Dementia Diagnostic ClinicNetworkThe new hope created by current therapiesfor AD is counter-balanced by welldocumented and longstanding barriers tothe diagnosis and treatment of personswith the disease. These barriers are theresults of years of neglect by health careprofessionals and a sense of hopelessnessexperienced by patients and familiesaffected by this disease and include:

• The failure of primary care physiciansto diagnose and treat dementingillnesses. Over one-half of personswith dementia are undiagnosed andtherefore, untreated.

• The reluctance of families and personswith AD to seek help early in thecourse of the disease. Many familiesdelay seeking help almost three yearsafter the onset of cognitive symptoms.

• The lack of public awareness about thebenefits of current treatments for AD.

In addition to the failure to diagnose andtreat AD, the current system of care failsto address the needs of caregivers wholive with the long-term burden of care.Family caregivers are the forgotten victimsof this disease, often as a result of thelongstanding disconnect between medical

organizations and social service providersresponsible for providing family educationand support. As a result, families do notreceive the services that are required tolessen the isolation and de-personalizationassociated with caring for a person withAD.

To improve the access to and quality ofdiagnostic services, WAI is collaboratingwith health care providers throughoutWisconsin in developing a network ofinterdisciplinary dementia diagnosticclinics, especially in rural areas. Theseclinics include teams of physicians, nurses,social workers, psychologists andAlzheimer’s Association staff who meetwith both the patient and family at thetime of diagnosis and during follow-upvisits. These teams come to the Universityof Wisconsin Memory Assessment Clinicfor training in the diagnosis and treatmentof dementia and then return to theircommunities as models of dementia care.Long-term relationships with the WAI aremaintained through annual meetings andcontinuing medical educationopportunities which provide theseinterdisciplinary teams with updates onrecent advances in the diagnosis andtreatment of persons with dementia.

The WAI-affiliated clinics provide care tothousands of new and existing patientsand families affected by dementingillnesses each year throughout Wisconsin.The following page provides a list of theWAI-affiliated clinics.


Wisconsin Dementia Services Database: Inpartnership with the Southeast AreaAgency on Aging, the WisconsinAlzheimer’s Association Chapter Network,and the State of Wisconsin Department ofHealth and Family Services, the WAIcreated the Wisconsin Dementia ServicesDatabase in 1998. The database wasavailable on-line and was intended toassist families and other caregivers inlocating dementia service options. Thedatabase provided an extensive listing ofover 2,500 dementia-related facilities,agencies, and services in the State ofWisconsin, including adult day care,community-based residential facilities,home health agencies and others.

One goal of the database was to create acentral repository of information aboutAlzheimer’s related resources that couldbe continuously updated and easilyaccessible to users. To make it uniqueand superior in content, listedorganizations were surveyed aboutservices provided. Responsibility formaintaining and publishing the databasewas transferred to the Southeastern AreaAgency on Aging in April 2002.

PolicymakersLong-Term Care Symposia: Beginning inOctober of 2000, the WAI identified agroup of 30 administrators andpolicymakers from the Division of Healthand Family Services in the State ofWisconsin who agreed to meet regularly,to listen to national experts, like Robert

Konrad, M.D., and Robyn Stone, Ph.D., andto discuss long-term care workforceproblems. The purpose of the symposiawas to create a dialogue that could leadto a Wisconsin solution to workforce andquality of care problems in long-term care.Collaborators have included the State ofWisconsin Department of Health andFamily Services, the Bureau on Aging andLong-Term Care Resources, and theDepartment of Workforce Development.Funding has been provided by the HelenBader Foundation in Milwaukee, John A.Hartford Foundation in New York andRetirement Research Foundation inChicago.

Alzheimer’s Legal Issues Symposium: TheWAI, in collaboration with elder lawattorney, Betsy Abramson, hosted a 1-dayLegal Issues Symposium in Madison in2003. The goal of the symposium was toeducate Wisconsin policymakers andstakeholders about the need to updateWisconsin laws to: 1) better represent andprotect the rights of persons with AD; 2)increase awareness of Alzheimer’s-relatedissues; and 3) stimulate discussion andformulate recommendations for policydevelopment in Wisconsin. Over 90persons accepted invitations to the eventwhich identified key legal issues, describedadvocacy efforts and models from otherstates, and created important dialogueamong participants. The WisconsinAlzheimer’s Association Chapter Networkis using the recommendations from thesymposium to develop public policyagendas for Wisconsin.



Rural Program DevelopmentOne goal of the WAI is to improve accessto and the quality of services available topersons with dementia and their caregiversin rural Wisconsin. This requires the WAIto collaborate with local communities andhealth care providers to develop orenhance diagnostic services, professionaland community education, opportunities,respite care, adult day care and otherservices.

WAI staff meet regularly with communityleaders to discuss ways to overcome localbarriers to service provision, assess theneed for services and in many counties,assist in developing those services. Overthe past five years, the WAI has workedwith 4 Area Agencies on Aging covering64 of Wisconsin’s 72 counties and 4 tribes.The WAI has played a particularlyimportant role in rural Wisconsin in

Crawford, Barron, Ashland, Bayfield,Lincoln, Grant, Lafayette, Juneau, Adams,Calumet, Jefferson, Washington and Dodgecounties. The WAI also has had theopportunity to work with the Ho-Chunk,Menomonie, Oneida and Lac du Flambeautribes as well as the Great Lakes Inter-TribalCouncil.

To expand the outreach of WAI staff,Dementia Care Leader Intensive Programswere developed to enhance the skills andknowledge of persons identified as leadersin their communities. The Intensives haveled to the development of dementiadiagnostic clinics, respite care programs,residential staff training and physician andcommunity education programs.

Recognizing that the WAI has a uniqueresponsibility to advocate for persons withdementia and their families, staff isencouraged to serve on committees and

Barbara Lawrence, Senior Outreach Specialist, WAI presents to particpants of the DementiaCare Leaders Intensive in Hayward, Wisconsin.


Rural Program Development

WAI Dementia Diagnostic Clinic Network

Dementia Care Enhancement in Adult Day Service Program

1998-2003

the wisconsin alzheimer’s institute 1998-2003 1998 to 2003 summary.pdf · leader in affecting...

Documents