Massachusetts Chapter actuales. Miré al pagino 2 y 20 para ... pdfs/07-00.pdf · P.S. With this...

INSIDEFrom the Executive Director .......................2Letter Writing: A Lost Art As Therapy...........3Development Highlights..............................4Education Report.........................................6Advocacy Update ..........................................8

Special Report: Directory of Research Opportunities in Massachusetts .............................11Search and Rescue: Unsung Heroes .........16Important Dates To Remember ................20The Remarkable Noonans ........................22Over 140 Support Group Listings..............24

In celebration of its 20th year anniversary, the Alzheimer’sAssociation’s Massachusetts Chapter hosted a jubilant Night at thePops May 11 at Boston Symphony Hall. Keith Lockhart mas-

terfully conducted a lively collectionfrom “Best of Broadway.”

Coincidentally, the celebration fell on the80th birthday of our Pops event chair StanleySolomont (shown above), and represented aspecial gift in return for all of his and thecommittee’s hard work. Honorary Pops eventchair Kasey Kaufman of WBZ TV Channel 4and presenting sponsor Praecis Pharmaceu-ticals contributed enormously to the evening’ssuccess and to a most worthwhile cause. Closeto 300 friends of the Association enjoyed our“Night at the Pops,” which included a post-event dessert reception. Together, they helpedraise over $60,000 for the critical programs and services our MassachusettsChapter provides to people with Alzheimer’s disease and their families. With sucha positive experience in organizing our first Pops event—there was a substantialunfulfilled demand for seats—we look forward to providing another delightfulevening of music and fun for an even larger group next year. b

“Night at the Pops” at BostonSymphony Hall Raises $60,000

Malcolm Geftner, presidentand CEO of Praecis Pharma-ceuticals, at Pops reception.Photo by Ellen Shub

Conductor Keith Lockhart (right) with Pops event chair Stanley Solomont.

Make the Link Golf TournamentMONDAY, AUGUST 7

At the Woodland Golf Club inNewton, with Honorary Chairand Red Sox pitching legendDennis Eckersley. See page 20for details.

Memory Walk 2000SUNDAY, SEPTEMBER 24

Join us, along withCongressman Ed Markey,our Memory Walk 2000Honorary Chair, for the MassachusettsChapter’s 8th annual Walk. See page 20for details.

Conferencia en EspañolSABADO, OCTUBRE 7

En el barrio de Jamaica Plain de la ciudadde Boston. Los doctores Pascual Leone yAntonia Coppin explicarán la diferencia entreenvejecimiento normal y la enfermedad deAlzheimer asi como los tratamientosactuales. Miré al pagino 2 y 20 para más.

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Volume 18, Numbers 1 & 2Spring/Summer 2000

36 Cameron AvenueCambridge, MA 02140

Tel: 617/868-6718Fax: 617/868-6720

Net: www.alzmass.orgOutside the 617 area:Call 1-800-548-2111

Lowell Area Office:Call 978/937-5576

Western Mass. Office:Call 413/527-0111

En español: 617/868-8599

20th Anniversary

D O U B L E I S S U E

http://www.alzmass.org

BOARD OF DIRECTORSOfficersNina M. Silverman, PhD,

Chairman of the BoardSanford Auerbach, MD Vice Chair/

Chair, AdministrationDonald A. Davidoff, PhD,

Treasurer/Chair, FinanceJoan H. Johnson, ClerkOther Executive

Committee MembersJudith Antonangeli, MSN andAnn C. Turner, RN, BSN, MSW

Co-chairs, Patient Care and Family Support

Kathleen D. Salmon-Robinson, MHSAChair, Development and PublicAffairs

Roberta Rosenberg, MEd, Chair,Med/Sci Advisory Committee

Pamela L. Sheridan, MDChair, Education

Other DirectorsMark Ailinger, NHA,Richard P. BlinnPatricia A. Clark, MS, RN, CSHon. Carol C. ClevenDonald N. Freedman, JDDavid Hayes, PhDNancy Stone Hindlian, MSCharles V. Keane*Sue Levkoff, ScDRobert Margil, CPAMaria Maskaluk, RN, BSNPaulette Masse, MS, LSWRev. Thomas W.O. Mayers, MEdStephen Moses, PhDRuth C. MoySusan McDonough, MPAHarold B. Schiff, MDDennis J. Selkoe, MDMarcia SimonsF. Marott Sinex, PhD*Stanley SolomontMarian G. Spencer, RN, MS Mary Ann StoutJean TylerSumer Verma, MDRosalie S. Wolf, PhDStaffJames Wessler, MBA, Executive DirectorNikki Coleman, ReceptionistVikki Corliss, Media ConsultantGerald Flaherty,

Director of Special ProjectsHeidi Ganss, MS,

Director of DevelopmentRichard Fleiss, MBA,

Development OfficerBeatrice Goldberg, Safe Return Asst.Rachel Hawk, RN, MSN

Director of EducationKathryn Hedgepeth, Director of Western

Regional OfficeSusan Kelly-Grasso, Advocacy Outreach

CoordinatorMichael Kincade, Sr., BS, CE, Outreach

ManagerMichelle LaPoint, Development

SpecialistJerry Levy, BookkeeperGeraldine Lindsey, Office AssistantAnna Milosavljevic, Office AssistantJeff Partyka, MCP, MIS CoordinatorBetty Jo Prins, Director of Finance and

AdministrationPaul Raia, PhD, Director of Patient

Care and Family SupportConchita Rodriguez,

Hispanic Outreach CoordinatorGinny Sinkoski, Regional Helpline

CoordinatorDonna Smart Gorham,

Office ManagerDeborah Thomson, JD,

Director of Public PolicyHarriet Udoff, MSE,

Greater Lowell CoordinatorSheila Watnick, AssociateDirector of Development/Special

Events ManagerErin Whalen, Helpline CoordinatorEditorial BoardNancy Stone Hindlian, ChairGerald Flaherty, EditorRachel HawkJoanne Koenig-Coste, MEd

*Emeritus©2000 Alzheimer’s Association,Massachusetts Chapter, Inc. Brian K. Johnson, design consultant.Printed by Fidelity Press.

At the same time the Commonwealth’s treasury holds itsgreatest surplus in more than a decade, our long termcare system descends further into chaos. As officials con-

tinue to debate whether the state should invest in its health careinfrastructure, our loved ones suffer, or die.

The statistics are sobering. Seventeen percent ofMassachusetts’ nursing homes are in bankruptcy. More thanten percent of direct care nursing jobs are unfilled becausethese positions don’t pay enough to attract qualified appli-cants. Over the past year, approximately 25 home healthproviders have folded and are no longer serving elderly clients.A growing number of adult day health providers are shuttingtheir doors. And although many assisted living residences pro-vide quality care and attractive living environments, too manyelders cannot afford this option.

Add to this mix the increased demands of caring for peoplewith a dementing illness and thousands of families face disas-ter. What are they, and the elders they care for, going to do?Where will caregivers turn when local nursing homes file forChapter 11 bankruptcies or are understaffed, and communitybased alternatives struggle to stay in business? With feweroptions, more and more overworked and exhausted caregiverswill reach their breaking point.

We must invest now in a long term care system that meetsthe needs of our growing elder population. The state needs toestablish Medicaid rates which fairly reimburse nursinghomes. It must invest in adult day health programs and homehealth and home care services, so that workers are paid a liv-ing wage and providers can assure quality care. When hun-dreds of caregivers answer our survey identifying these issuesas their top priorities, decision-makers need to take note. Thealternatives are unacceptable.

As we go to press, astate legislative con-ference committee hasapproved a $42 million“Nursing Home QualityInitiative.” If approvedby the governor, this ini-tiative represents amajor breakthrough in addressing one element in the crisis:competitive wages for Certified Nurse Aides in the state’s nurs-ing homes. On behalf of the Alzheimer’s Association, I wouldlike to thank you all for you help in soliciting the support ofyour state Senators and Representatives, and to thank them fortheir response. (See related story on pages 8-9.)

We Are One OrganizationAfter joining last fall with the former Western Massachusetts

Chapter to form the Alzheimer’s Association, MassachusettsChapter—the first successful merger in the national realign-ment process—we have implemented an integrated Helpline,uniform training programs for professionals, and mentoringfor support group leaders. To assure full participation of ourvoluntary leadership across the state, we arranged a simulta-neous video conference of our recent Board meeting at sites inBoston, Hadley and Lowell (thanks to Board chair Nina Silver-stein and the University of Massachusetts Gerontology Insti-tute), opening proceedings to our Western Mass. and GreaterLowell Advisory Committees.

The Massachusetts Chapter has worked to keep the concernsof our Alzheimer community in the public’s eye in other ways,as well, with volunteers and staff featured over the last monthsin numerous local and national media outlets, including NBCNightly News (twice); Newsweek magazine; Associated Pressinternational and local wire stories; the CBS Healthwatch Website; Long Term Care Provider Magazine; WGBH TV Channel 2;WCVB TV Channel 5; a three-part news series on the Noonanfamily on WLVI TV Channel 56 (see page 22 for more on thisremarkable family); the Boston Globe; the Tab Newspapersand Web chat site; and several other print and radiofeatures. b

—James Wessler

P.S. With this issue, Gerald Flaherty steps down as Editor inorder to focus on other chapter duties. Jerry will remain on theEditorial Board, where he has served since 1988. CatherineVotaw, family member, former chapter volunteer and medicalwriter, joins us as Editor for our next issue. Catherine will workwith the Editorial Board under the supervision of RachelHawk, the chapter’s Director of Education. Material for consid-eration in the Newsletter should be sent to Rachel at the chap-ter address or e-mailed to [email protected].

Conferencia en Español para las Familias.SABADO, OCTUBRE 7

La Asociación de Alzheimer va a tener su primera con-ferencia en Español para las Familias. Esta se llevará a caboen el Curtis Hall Community Center, 20 South Street en elbarrio de Jamaica Plain de la ciudad de Boston. Los doc-tores Pascual Leone del Beth Israel Deaconess Medical Cen-ter y Antonia Coppin del Instituto de Gerontología BostonUMass explicarán la diferencia entre envejecimiento nor-mal y la enfermedad de Alzheimer asi como los trata-mientos actuales. Un pánel formado por tres familiares queprocuran el cuidado a sus parientes enfermos van a hablarde sus experiencias con sus parientes affectados con demen-cia. Esta conferencia será conducida totalmente enEspañol. Para mayor detalles, llame a Conchita Rodrígueza nuestra línea en español marcando 617-868-8599. b(See page 20 for English translation.)

UMass sponsors three-site videoBoard conference

S A V E T H E D A T E !

From the Executive Director: Long Term Chaos

Alzheimer’s Association, Massachusetts Chapter

mailto:[email protected]


Patient Careand FamilySupportIn this age of cellular phones, pagers, e-mail, voicemail,

faxes and lower-than-ever long distance phone rates, letterwriting is fast becoming a lost art. The term “snail mail”

reflects a prevailing attitude about the value of sending a care-fully composed letter in our fast-paced society. “What a lot welost we when stopped writing letters! You can’t re-read a phonecall,” as Washington pundit Liz Carpenter put it.

Articles in professional journals also support the notion thatwriting can have many therapeutic benefits for people copingwith stressful situations. In this spirit, we, as facilitators andmembers of an Alzheimer caregiver support group, haveembraced the idea of letter writing as a way of enhancing com-munication with family, friends and health care providers.Group members share letters which have worked for themunder specific circumstances, and brainstorm about the kindsof letters they may want to write as the changing circumstancesof care dictate.

The group’s letter writing began when Mr. R, a creative andenergetic problem-solver, shared his strategy for reaching out tofriends to help his wife, who has mild memory loss. He knewthat reminiscing was an effective therapeutic activity for her,and wanted help putting together the pieces of his wife’s lifepredating their relationship. In a humorous but heartfelt holi-day letter, he wrote to friends and family, updating her currentsituation and enlisting their help. He told them he was compil-ing a book of memoirs for his wife, and asked that they sendinformation about their earliest history with her, fond memo-ries, “funny stuff,” and updates on their own lives. Theyresponded enthusiastically, appreciative of the chance to beinvolved. Mr. R’s book is an ongoing source of pleasure for himand his wife.

Another demonstration an often-discussed principle of care-giving—operationalizing a request for help—in this casethough letter writing, came from the group’s co-facilitator. Shebrought in a letter written by a colleague who had noticed thedisengagement of her mother’s longtime friends after hermother entered a nursing home. Although the daughter knewthat many of these friends had their own health problems, shewas distressed that they seemed to “fade away” as her motherbecame more confused. She decided to take action during theholiday season, writing a letter accompanying a Christmas cardto each of them. She updated them on her mother’s health, anddiscussed her difficult decision to move her mother to the nurs-ing home. She said she thought her mother would benefit froma brief visit, phone call or note from them, included contactinformation, and ended on the positive note that her motherwas receiving quality care in her new setting. Again, theresponse was overwhelming, as her mother began receivingcalls, visits and notes from old friends. The holiday letters werea way of being clear about how her mother’s friends could behelpful, without overburdening them.

Some group members have found letter writing an effectiveway to communicate with their loved ones’ doctors. Such a let-

ter can compensate for the rushed feeling a medical appoint-ment can have, and allows caregivers to share sensitive infor-mation in advance of the appointment. Caregivers who want tobe frank in chronicling memory or behavioral changes oftenfind that a letter provides an effective way to do so. Mr. R notedthat he uses letters to his wife’s doctors to make clear his desireto be “kept in the loop.” Another group member, Mrs. H, alwayssends a letter before bringing her mother-in-law in for medicalappointments. She includes all current medications, states thereason for the visit, highlights changes and, so they won’t beforgotten during the appointment, lists her family’s questions.

Letter writing is also effective among family members. Mrs.D, for example, knew her children were concerned about theirfather’s care, but felt they were not “putting their energy in theright place” regarding their father’s difficult behavior or her

daily caregiving tasks, issues of greatest importance to her.Group members talked about letter writing as a way to shapethe agenda for an upcoming family meeting, and helped guideher in using of a follow-up letter highlighting her concern thatthey all keep their focus. Letter writing can also be used as a“heads-up” to prepare family members who are planning tovisit so that they’re not caught off guard by changes in thepatient since their last visit.

A final example of the usefulness of letter writing comes inthe form of the “unsent letter.” Caregiving can be a dauntingtask even in the context of a long, loving, committed marriage.Unhappy marriages, however, can beget even unhappier care-giving situations, in which anger can be a profoundly negativefactor. Mrs. F’s marriage has been extremely difficult. Thegroup encouraged her to write a letter to her husband, whichwould remain unsent, as a means of expressing her angertoward him in an appropriate manner. “Getting it down onpaper,” as Mrs. F put it, was her opportunity “to let off somesteam,” releasing her feelings while the letter, by remainingprivate, did no emotional harm to the patient.

Whether snail mail or e-mail, group members found thatwritten correspondence was an important tool in meeting arange of caregiving challenges. Interestingly, the group effort inwriting this article brought members and facilitators even clos-er. It provided an opportunity to organize thoughts and feel-ings, as a letter might, and also to share them with the largercaregiving community. b

Letter Writing and Caregiving: Discovering a Lost Art

Lissa Kapust (center) andsupport group members,pens poised

This article is the col-lective work of LissaKapust, LICSW, seniorsocial work supervisorat the Beth IsraelDeaconess MedicalCenter Neurology Unit;Kelly McCutcheon,LICSW, social worker atSunBridge Care andRehabilitation forNewton; and theAlzheimer’s CaregiversSupport Group theyfacilitate at SunBridge.

Development


On the evening of April 13, volunteers, friends and staffformally dedicated the Massachusetts Chapter’s veryspecial Spirit of Remembrance wall during installa-

tion ceremonies in Cambridge.Spirit of Remembrance is amulti-paneled acrylic etching which features a reproduction of

“Taking Leave,” a woodblock print by nation-ally known artist Eleanor Rubin of Newton.Prominently displayed in the foyer of ourmain office, the Spirit wall provides an oppor-tunity to remember and pay tribute to ourloved ones, whose names can also be etchedthere. Ms. Rubin, whose mother died ofAlzheimer’s disease, attended the dedicationwith her family.

It was a night of dedications. In addition to the Spirit wall,our Education and Training Center was officially named inmemory of Elinor and Lou Hens, parents of Board memberJoan Johnson of Andover, who paid tribute to their influence inher life and on her work on behalf of others affected byAlzheimer’s disease. We also dedicated our Family ConferenceRoom in memory of Myer Saxe, one of our Chapter’s founders

and a long-time supporter and fund-raiser. Mr. Saxe’s daughter Ruth andher husband George Rautenberg ofLexington were also in attendance.Remarks by Joe Paresky of Boston, afriend both to Myer and to our chap-ter, helped us all appreciate Myer’sfull contribution to our work.

The overflow crowd of supportivefamily members challenged our office capacityin a warm and welcome way, as they turned outto commemorate their loved ones. Among themwas Boston’s Secretary of Human ServicesJuanita Wade (and family), whose mother,Violet May Brooks, died late last year and iscommemorated on the Spirit of Remembrance

wall. Also delivering mov-ing presentations wereBoard Chair Nina Silver-stein, chapter ExecutiveDirector Jim Wessler, andPaul Raia, the chapter’sDirector of Patient Careand Family Support.

The night was—andthe Spirit of Remem-brance wall remains—acommemoration whichhelps provide closure tofamilies who have lostloved ones, and offerscomfort to those currentlycoping with the effects of adementing illness. TheAlzheimer’s Association, Massachusetts Chapter, encourages vis-itors to view these beautiful panels at our Cambridge office, andwelcomes your inquiries. Please call us at 617/868-6718. b

Spirit of Remembrance Wall Is Dedicated in Cambridge

Community Health Charities of Massachusetts

Did you know that Community Health Charities ofMassachusetts is the exclusive representative of theAlzheimer’s Association, Massachusetts Chapter, in

public and private sector payroll deduction campaigns? IfCommunity Health Charities of Massachusetts is in your com-pany’s campaign, please ensure that your gift to theAlzheimer’s Association be designated under this umbrellagroup. In the private sector, look for the Agency Code #5002-Alzheimer’s Association. In the public sector, the Agency Codenumbers differ depending upon your work location.

Community Health Charities of Massachusetts has three

offices working to promote the work of the Alzheimer’sAssociation, Massachusetts Chapter.

For more information, please call Holly Boykin, ChiefExecutive Officer, at 781/326-3747.

United WayIf you are in a private company which does not have

Community Health Charities of Massachusetts in its workplacegiving campaign, you can designate your gift to theAlzheimer’s Association, Massachusetts Chapter, by writing it inunder the specific agency section.

Thank you for your continued, and critical, support.

Workplace Giving Campaigns

The family of the late Myer Saxe gathered during the “Spirit” wall ceremoniesfor the dedication of our Family Conference Room, named for Myer in recog-nition of his long support of the chapter.

Emery Currier of SouthHadley, a major supporterof our chapter’s services,with ED Jim Wessler (cen-ter) and Board chair NinaSilverstein at “Spirit” wallinstallation ceremonies.

Spirit of Remembrancephotos by Dick Fleiss

Board member JoanJohnson, seen here by thechapter’s newly dedicatedElinor and Lou HensEducation and TrainingCenter conference roommemorializing her par-ents, also spoke at thechapter’s “Spirit” wallceremonies.

Eleanor Rubin, whose print,“Taking Leave,” graces ourSpirit of Remembrance wall,with granddaughter Emily RoseFischer, 11 months.


Development

The frigid cold weather couldn’t keep 600 people fromattending Winterfest 2000 late in January. Guestsenjoyed good food and convivial conversation, dancing

through the night music by DJ Fran Sullivan. This annualevent, chaired by Heidi Ganss and named in loving memory ofher grandfather James “Vic” Jordan (1918-1994), was againheld at The International on High Street in Boston. Thanks tothe generosity of John Ryan of The International, to FidelityPress and to the many businesses that donated door prizes, giftcertificates and products with values from $15 to over $200, thebenefit raised more than $8,000 to support the MassachusettsChapter’s programs and services.

Hardworking and dedicated Winterfest 2000 committeemembers volunteer their time and efforts because they have allbeen touched by Alzheimer’s disease. Kathy Duffus worked tire-lessly in memory of her father, Donald Duffus, whose photo wasfeatured on the benefit’s Faces of Alzheimer’s display. Alsoremembered on the display was Carl Josephsen, who lost his

battle with the disease on Christmas Day 1999. Another long-time committee member, Pauline Carpenter, has volunteeredher time and energy for many years because her beloved grand-mother and namesake, Polly Carpenter, (1898-1990), alsosuffered from this devastating disease. b

Winterfest 2000 CommitteeJen AnthonyChristine BourassaMichelle BarryMegan Cap-RenziPauline CarpenterKathy DuffusAndrea EvansHeidi GanssTim GanssKristin KlaynerKevin & Patty MolloyEd NolanBetsy & Mike NordmanMelanie ManningElizabeth & Mike ShadeAli ShohBrandi SikorskiKatha WashburnRich & Katie Whelpley

Winterfest 2000 businessdonorsBell Atlantic MobileNew England PatriotsBoston CelticsThe Green Company, DanversBoston BruinsL’Espalier Restaurant, BostonOdyssey Cruise Line, BostonMedieval Manor, BostonWellness Massage Center, NewtonAnderson’s Jewelers, WellesleyAppetito Restaurant, Boston/NewtonArdan Salon and Day Spa, WellesleyAsian Grill, WalthamAustin Grill, CambridgeBluestone Bistro, BrightonBookstore Restaurant, WellfleetBridgewater State College AlumniAssociationBuff’s Pub, NewtonCambridge MarriottCaptain’s Quarters Resort, N. Eastham

Carambola Restaurant, WalthamCorners Framing, Newton/CambridgeDick’s Last Resort, BostonDoubletree Guest Suites, WalthamErawan of Siam, WalthamFire & Ice, CambridgeHair West, WellesleyJesamondo Day Spa, WellesleyJohnny D’s Uptown Restaurant,SomervilleKevin Max Hair Design, NewtonLa Groceria Restaurant, CambridgeMinuteman Car Wash, MedfordMiracle of Science Bar & Grill,CambridgeMoby Dick’s Restaurant, WellfleetMuseum of Fine Arts, BostonN.E. Mobile Book Fair, NewtonSalon Luiz, BostonThe Black Cow, NewburyportThe Hartwell House, LexingtonWayland Golf ShopsWellfleet Cinemas

9th Annual James V. Jordan Winterfest Benefit Draws 600

Al Dente Road Race/Walkathon at $15,000 and Counting!

The 4th annual Al Dente Road Race/Walkathon to benefit the Alzheimer’s Association, Massachusetts Chapter, got offwith a bang May 13 from the VFW Post 1012 in Medford. Walkers and runners not only competed for top honors andraffle prizes, but also enjoyed music, refreshments, the post-race awards presentation and a festive barbecue. This

year’s event topped expectations, exceeding 1999’s 400-plus participants. Special thanks go to Ralph Dente and Ed andMaureen Nolan for all their hard and generous work on the Race.

Keep track of this and other annual events which provide critical support for our programs and services by checking theSpecial Events page of our chapter Web site at www.alzmass.org. b

Winterfest 2000 committee at The International

James “Vic” Jordan, whoselife inspired Winterfest,with grandson Jamie Nyein 1974.

MOREDEVELOPMENT

EVENTS & PHOTOSON PAGES

18-19

The Players raised close to$2,000 for chapter pro-grams and services withtheir presentation of“Miss Mariah,” an origi-nal drama written andproduced by DorotheaWelling at the Holiday InnTheatre in Peabody, whichgenerously donated use ofits ballroom. Thanks alsoto Roland Appleton Inc.for donating the sets.Congratulations on a fineperformance all aroundby The Players!

Family Conference Draws Caregivers to Northeastern UniversityEducation

All Family Conferencephotos by SamLaundon, Natural LightStudios


By John Medina, Ph.D. 1999: CME, Inc. andNew Harbinger Publications, Inc. Softcover,165 pp. Available from the MassachusettsChapter at $14.95 for members, $15.95non-members plus $2.75 postage.

Reviewed by Judith Antonangeli, RN, MSN

John Medina’s 1999 book is an unusually com-prehensive resource, clearly defining Alzheimer’sdisease and its neuropathological effects while alsooffering practical suggestions for professional andlay caregivers. It also includes an informative For-ward by Dr. John Schwartz, Editor-in-Chief of Psychiatric Times.

Part one provides an historical overview of Alzheimer’s dis-ease, its warning signs, and diagnostic, medical, behavior andmood problems. It opens with three case studies that sensitizethe reader to the devastating impact of an Alzheimer diagnosisand the gradual loss of self people with the disease experience asit progresses. As one family member relates, “After a seeminglyendless series of tests, with no one committing to a definite diag-nosis, we got a phone call from our doctor. He said Carol wasprobably in the early stages of Alzheimer’s disease, and I did nothear the rest of what he said because I dropped the phone andbegan to cry.”

In part two, Dr. Medina describes in detail howthe brain works and thoroughly examines why thisdisease causes such destruction. Again, he usesvignettes and case studies to explain some verycomplex neuropathology for the lay reader. A care-giver, for example, observes the seemingly contra-dictory expression of her father’s disease: “As Daddyretained the skill to ride his bicycle, some facet ofimplicit memory was working adequately. Butthere was definitely long term memory loss,because Daddy no longer recognized Beth as hisdaughter.”

Part three is replete with practical suggestions applicable inthe home, or in assisted living or long term care settings.Medina is realistic in summarizing the challenges caregiversface, but focuses more on concrete ideas and good tips forproactive rather than reactive approaches in coping with prob-lem behaviors, structuring personal activities and just makinglife more enjoyable it spite of the disease. One problematic issuefor readers with diminished eyesight, however, is the glossy fin-ish of the pages. But this flaw is more than offset by the remark-able and colorful artwork and the portions of highlighted textthat draw the reader to those sections of the book most useful tocaregivers. b

Book Review

What You Need To Know about Alzheimer’s: A Guide for Caregivers and Patients

Among our other outstanding educational events, theMassachusetts Chapter organized its 16th Annual FamilyConference at Northeastern University in Boston. More

than 250 family caregivers and early stage patients gathered forthis year’s conference, which for the first time offered work-shops three languages: English, Cantonese and Spanish.

Dr. Neil Kowell of Boston University Medical Center beganthe full day event with a comprehensive dementia researchupdate, reviewing promising research, medicines and othertreatments. This year we conducted 21 diverse workshops. Ofparticular interest were three workshops for people with earlystage Alzheimer’s, which drew 30 participants.

Caregivers gathered together again for lunch, and were treat-ed to remarks by state Representative Marie St. Fleur of Dor-chester, who powerfully and eloquently encouraged families tobecome active advocates in the Association’s public policy effort.

Author, lecturer and Alzheimer family care consultantJoanne Koenig-Coste reminded participants in her closingremarks of the importance of their role in guarding thehumanity of people with Alzheimer’s, and of the sustainingpower of perspective, and humor.

“This conference more than met my needs,” one conferenceparticipant noted. “The location was very accessible, the con-ference was affordable, and so many of the speakers werefabulous.” b

State RepresentativeMarie St. Fleur of Dor-chester eloquently ralliedthe audience of familycaregivers to support ourchapter’s legislativeagenda.

Chapter Board memberJudith Antonangeli isauthor of the ground-breaking book, Of TwoMinds: A Guide to theCare of People with theDual Diagnosis ofAlzheimer’s Disease andMental Retardation. Topurchase this book orthe book reviewed here,call the chapter at 1-800-548-2111 or visit our Web site atwww.alzmass.org.

Family Conference keynote speaker Dr. Neil Kowall also con-ducted a workshop for people who have early stageAlzheimer’s disease.

Two participants in the Chinese language workshop at ourFamily Conference break for lunch.


Education

Once again, wewere delighted thatat a time offunding cuts andfinancial stresses,700 professionalsfrom communitybased agenciesand long termcare facilitiescontinued to seethe value of theinclusive, 40-plusworkshops theconferenceoffered them.

Multidisciplinary Conference Draws 700 Dementia Care Professionals

Our year 2000 “Map through the Maze: A Multidisciplin-ary Conference for Professionals,” now in its eighthyear, remains the largest regional conference of its

kind, drawing yet another capacity audience to the Royal PlazaHotel in Marlboro on May 20. Participants represented the mul-tiple disciplines within the dementia care profession. Onceagain, we were delighted that at a time of funding cuts and

financial stresses,700 professionalsfrom communitybased agencies andlong term carefacilities continuedto see the value ofthe inclusive, 40-plus workshops theconferenceoffered them.

Geri RichardsHall, PhD, ARNP,FAAN, AssociateProfessor and

Associate Director for Outreach at the University of Iowa Centeron Aging presented the keynote address, “Where Have We ComeFrom, Where Are We Going.” The workshops that followed

offered a wide and informative range of choice, from “Gettingthe Most out of Medicare Managed Care” with Katie Maslow ofour National Alzheimer’s Association; “Alzheimer’s Disease andMental Retardation” with our Board vice chair, Dr. SanfordAuerbach of University Hospital in Boston; “Addressing theChallenges of Transcultural Care” by Roberta Rosenberg of theHebrew Rehabilitation Center for Aged in Boston; “RiskAssessment and the Prevention of Alzheimer’s Disease” by Dr.Robert Green of the Boston University Alzheimer’s DiseaseCenter; and a special panel presentation, “We Are Still Here,”

moderated by Elaine Silverio of the Boston Alzheimer’s Centerand featuring interchanges with early stage patients—a repeatpresentation of last year’s standout panel.

The lunchtime Vendors’ Fair was lively and crowded, withexhibits from pharmaceutical companies, assisted living andnursing care facilities, and many other agencies and business-es. The day ended on an equally busy and interesting note atour Poster Session, which featured, among other exhibits,“How Dementia Friendly Are Acute Care Hospital Stays inMassachusetts?” presented by Board chair Nina Silverstein’sclass of elder students at the UMass Boston GerontologyInstitute; “Horticultural Therapy with Alzheimer Patients” bythe New England Horticultural Therapy Association; and“Folate Deficiency and Neurodegeneration in Alzheimer’sDisease” by Dr. Thomas Shea of the Center for CellularNeurobiology at UMass Lowell. b

Professionals Conference keynotespeaker Geri Richards Hall alsoconducted two workshops.

Drs. Pamela Sheridan of McLean Hospital (left) and NancyEmerson Lombardo of the Wellesley College Center forResearch on Women.

All ProfessionalsConference photos bySam Laundon, NaturalLight Studios

An overview of the Museum of Science “Secrets of Aging”exhibit was among the displays at the ProfessionalsConference poster session. The chapter collaborated in theMuseum’s kick-off reception in May for the full exhibit,which will travel to five cities across the nation.

Public health and elder services consultant Linda ConnorLacke (left) visits the UMass Gerontology Institute’s poster onAlzheimer’s disease in the acute care setting, staffed by stu-dent Pauline Hogan.


Moving Fast Forward on Advocacy Agenda 2000Advocacyby Deborah Thomson, JD

The Alzheimer’s Association, Massachusetts Chapter,embarked on an ambitious advocacy agenda for theyear 2000 and Chapter advocates are keeping us on

pace to meet it. Thanks to the responses of hundreds of readerswho returned the survey printed in our last newsletter, we iden-tified nursing home staffing and quality as the #1 issue ofconcern to families dealing with Alzheimer’s disease. Otherissues flagged by the survey include expanded access to careand services for patients living at home; guardianshipissues; and prescription drug coverage. Below is a brief reporton some of the progress we’ve made to date on your priorities,

followed by a full list of ourpublic policy initiatives.

Nursing homestaffing and quality

The Association hashelped to form a coalition ofadvocates, nursing homeproviders, family membersand labor representativesworking on improving accessto quality care in nursinghomes. Foremost on thecoalition’s agenda has beenthe problem of shortages ofnursing home direct careworkers. We have been suc-cessful in persuading thestate Legislature to include amajor “nursing home qualityinitiative” in its budget. Theinitiative includes $35 mil-lion to provide a ten percentwage increase for nurse aidesand an additional $7 millionin nurse aide workforcedevelopment initiatives. Weare now working to retainthis provision in the state’sfinal FY01 budget. We willcontinue working with theCellucci Administration andthe Legislature to establishadequate minimum staffingstandards for nursing homes.

Dementia dayprogram rates

As part of our drive toexpand access to communitycare, we have successfullyadvocated for a second year’s

addition of $1 million to the Medicaid rates for dementia-spe-cific adult day health programs. This money will allow demen-tia day care programs to meet the additional costs of staffingand security that dementia patients require. Over the comingyear we will be working toward the implementation of a stateoversight system for adult day programs which recognizesdementia day care as a distinct type of program and sets appro-priate standards of care. Chapter representation on the AdultDay Study Commission was critical to this success.

Prescription drug coverageWorking in concert with other advocacy groups, we succeed-

ed last year in establishing an expanded Pharmacy Programwith a $1,250 benefit for low-income elders and people withdisabilities. We also helped establish a program with unlimitedbenefits for people with catastrophic drug costs. This year wehope to gain legislative authorization of a prescription druginsurance program to provide coverage for all elders and forlow-income individuals with disabilities. This program wouldprovide enrollees with income-scaled premiums, co-pays anddeductibles, and would offer unlimited drug coverage after thedeductible is met.

Safe Return Program fee coverageWandering from home or a facility and becoming lost is a

life-threatening behavior addressed by the Alzheimer’sAssociation’s national Safe Return Program. Advocates succeed-ed in gaining coverage of the one-time $40 cost of Safe Returnregistration for eligible individuals through the state’sASAP/Homecare agencies. Special thanks go to Dan O’Leary,Executive Director of Mystic Valley Elder Services, and to stateElder Affairs Secretary Lillian Glickman for their attention tothis life-saving effort. The chapter will continue its effort tohave Safe Return education and Search & Rescue trainingmaterials used routinely during in-service trainings at thestate’s police academies.

Alzheimer’s Advisory Council reauthorizationThe Advisory Council on Alzheimer’s Disease was originally

established by legislation authorizing its work for a two-yearperiod. Under the leadership of Elder Affairs Secretary LillianGlickman, the Council has produced a series of recommenda-tions for better coordination of state services provided todementia patients and for better education of health care pro-fessionals and the public. The current House and Senate FY01budgets contain language authorizing the Council to continueits work for another two years.

These are just a few of the exciting initiatives in which theAlzheimer’s Association has successfully participated. If youwould like to play a more active role in our advocacy efforts,contact Susan Kelly-Grasso at 617/868-6718. Susan can signyou up for our Public Policy mailing list, which will entitle youto frequent updates on legislative and other advocacy develop-ments.

Additional advocacy priorities for the coming year include:

Legislative Education and Awareness Day

Advocates Lobby for Nursing Home Quality Care

On April 4, approximately 150 advocates and 20legislators and aides gathered at the State Housein Boston for the Alzheimer’s Association annual

Legislative Education and Awareness Day. Co-sponsoredby the Legislative Caucus on Older Citizens’ Concerns, theforums theme this year was “Advocating for Quality Carein Nursing Homes.” It featured a panel presentation by afamily member (Katherine Votaw), a nurse aide (HerbertJean-Baptiste), a clinician (Dr. Paul Raia of our staff)and the state long term care Ombudsman Program direc-tor (Mary McKenna). Following her welcoming remarks,state Representative Carol Cleven of Chelmsford, co-chairof the Legislative Caucus and Massachusetts ChapterBoard member, discussed the work of the Caucus.

Audience members engaged in a lively question andanswer session at the conclusion of the panel presenta-tion, voicing their concern and determination that theirloved ones receive the best possible nursing home care.Nursing home representatives also stressed the need formore state funding to hire staff and to meet residents’care needs. The morning’s events concluded with lobby-ing visits by audience members to their individual legisla-tors, urging them to support increased funding for nurs-ing home direct care workers in this year’s state budget.Massachusetts Secretary of Elder Affairs Lillian Glickmandelivered closing remarks, stressing the need for improvedquality in long term care.

This need has been brought home to all of us in newsstories and other reports alleging neglect or abuse ofAlzheimer residents in long term care facilities. Pleasecall the state long term care Ombudsman or theAlzheimer’s Association if you suspect mistreatment of afamily member or other nursing home resident. b


Advocacy

New FreeConsumerGuide Available

Please call theMassachusetts Chapter at1-800-548-2111 for yourfree copy of our newConsumer Guide on howto select an AlzheimerSpecial Care Unit in a longterm care facility.

• Expanded access to community care and servicesAs indicated in your survey returns, an overriding concern fordementia patients and their families is access to community-based care. In addition to the success of our dementia dayprogram initiative, the Massachusetts’ chapters have advo-cated over the past year for increased access to affordableassisted living; for more social support service funding forASAP/Homecare community agencies; and for the nationalFamily Caregiver Support benefit being considered byCongress.

• Guardianship and competency issuesGuardianship and competency issues are perennial problemsfor people with dementia and their families. Over the pastyear, the chapters have supported bills to make guardianshipproceedings more simple and affordable, and to create aPublic Guardianship Commission for dementia patients whodo not have families, or resources, to assist them. These billsneed your advocacy over the next year in order to be passedby the Legislature.

• Medicare restructuring issuesSince the passage of the Balanced Budget Act of 1997, theMedicare program has severely reduced its payment to healthcare providers. This has destabilized our long term care sys-tem, with many home health agencies and nursing homesentering bankruptcy proceedings. In addition, a number ofHMOs and health care providers have dropped out of theMedicare managed care system, leaving beneficiaries with

reduced access to care under these plans. People with demen-tia are having a much harder time accessing Medicare-cov-ered services such as home health care, and the extra burdenof care frequently falls to families. The chapters have advo-cated for legislation at the state and federal level whichwould offset some of these harmful changes and provideneeded services for patients and families.

• Alzheimer research fundingThe first public policy priority of our national Alzheimer’sAssociation is an increase in research funding for dementingillnesses. The chapters have participated in this nationaleffort and are working with the state’s Congressional delega-tion to ensure adequate funding levels.

• Vision 20/20 ProjectThe aging of the baby boom generation will severely tax ournations’ long term care system in the coming decades. Inorder to plan for meeting long term care needs inMassachusetts, the chairs of the Legislature’s Health CareCommittee have convened a “Vision 20/20 Project.” Thisgroup of academics, legislators, state agency personnel,health care professionals and advocates will develop a longterm care blueprint for Massachusetts to follow into thefuture. Our Massachusetts Chapter is part of the task forceplanning this project and developing the long term plan.

Deborah Thomson is the Massachusetts Chapter’sDirector of Public Policy.

National Public Policy Forum

Fifteen Massachusetts advocates attended the NationalAlzheimer’s Association Public Policy Forum inWashington, D.C. March 18-21. The four-day Forum,

which featured a wide range of workshops on various publicpolicy topics, left plenty of time for networking among advo-cates from chapters and agencies in other states. OurMassachusetts advocates met with the state’s Congressional del-egation to lobby for increased research funding and creation ofa family respite benefit. b

Massachusetts advocates at the NationalPublic Policy Forum’s “Roll Call of theStates” (from right): Deborah Thomson;Nina Silverstein; Nancy Emerson Lombardoof Wellesley College.

Representing Massachusetts at the National Public PolicyForum in Washington (first row, seated, from left): ElizaLake, state Office of Elder Affairs; Kathy Pastva, Cape Chapterdirector; Dan Paris of Mass. General Hospital; DeborahThomson, Mass. Chapter staff; family member BarbaraMalinsky; (standing, from left) Mass. Chapter Board memberMaryanne Stout; Mass. Chapter Board chair Nina Silversteinof the UMass Boston Gerontology Institute; family memberBetsy Peterson; Cape Chapter Board member Fran Lavin;Susan Kelly-Grasso, Mass. Chapter staff; and family memberUmu Kuba.

Medicineand Science

Simons Symposiumphotos by SamLaundon, Natural LightStudios


by Lindsay Mortenson

An audience of 150 family members, researchers, healthcare professionals and the general public crowded theColonnade Hotel in Boston to hear Dr. Marilyn Albert

present her research findings at the chapter’s 9th AnnualMathew and Marcia Simons Symposium on Alzheimer’s dis-ease. Dr. Albert, a neuropsychologist, is director of the GeriatricNeurobehavioral Clinic in the Department of Psychiatry atMassachusetts General Hospital.

In a provocative lecture titled “Predicting Alzheimer’s: Howclose are we?” Dr. Albert described her cutting edge work inusing neuropsychological testing, neuroimaging proceduresand genetic information to predict who will developAlzheimer’s within a three to four year time span. To that end,she has identified selective changes in the brain which occurvery early in the disease process.

“If we measure both the function and the structure of thebrain, we know where to look for signs that tell us who is goingto develop Alzheimer’s disease,” Dr. Albert said.

Over four years, Dr. Albert and her team at MGH interviewedand tested study subjects, some with questionable Alzheimer’sdisease and some with normal memory. The encouragingresults showed that after three years, only 19 percent of subjectswith questionable Alzheimer’s met the clinical criteria for thedisease. None of those in the normal memory group met thosecriteria. Dr. Albert also investigated whether older people withrecent changes in memory experience a continuous decline inmemory. Clinical Dementia Rating tests revealed that whilememory function in 55 percent of subjects did decline, approxi-mately 30 percent remained the same. Roughly 15 percentactually showed improvement on the tests.

Dr. Albert used neuropsychological tests to examine lan-guage, spatial relations, attention, delayed recall and executivebrain function (as an example of executive function, shedescribed the sequencing skills needed to cook an elaborateThanksgiving dinner). The object of this testing was to deter-mine if changes early in the disease process are measurable by

existing methods. She also used several neuroimaging methodsin order to discover if Alzheimer’s disease progresses in a sys-tematic and predictable manner. One of these methods, SinglePhoton Emission Computerized Tomography (SPECT), deter-mined that those in the study who had developed clinical Alz-heimer’s had significantly decreased blood flow to four differentareas of the brain: the hippocampus (involved in memory pro-cessing); the posterior cingulate; the anterior thalamus; andthe middle cingulate (involved in executive function).

Magnetic Resonance Imaging (MRI) and genetic screeningwere also used to help identify those who would eventuallydevelop the disease. Interestingly, study subjects’ APOE genestatus (the APOE gene is implicated in the most common, lateonset type of the disease) predicted the disease in only 66 per-cent of subjects. By using a combination of different types oftests which combined information gathered on age, gender andeducation, from neuropsychological tests and from SPECT andMRI neuroimaging, however, Dr. Albert was able to predict whowould develop Alzheimer’s disease in over 90 percent of herstudy subjects. This impressive statistic, she said, can onlyimprove with additional refinements to the various testing pro-cedures, including functional MRI (fMRI) scans.

The results of Dr. Albert’s research point to the real possibili-ty that accurate prediction of Alzheimer’s disease could soon hit100 percent. She emphasized that as better treatments for thedisease emerge, it will become increasingly important to identi-fy people who are in the very beginning stages of the disease.Dr. Albert and her colleagues have made a significant contribu-tion toward that goal. b

Until her graduation this spring withhigh honors in neuroscience fromBrandeis, Lindsay Mortenson was theMassachusetts Chapter’s Medical &Scientific Advisory Committee internand a Helpline volunteer.

Dr. JeffreyCummings ToSpeak atSimons 10thAnniversarySymposium

The chapter’s Med-ical & ScientificAdvisory Com-

mittee has named Dr.Jeffrey Cummings, directorof the Alzheimer’s DiseaseCenter at UCLA as the pres-tigious year 2000 Matthewand Marcia SimonsAlzheimer Research Sym-posium Lecturer. Dr. Cum-mings’ work studying andtreating behavioral distur-bances in Alzheimer’sdisease and the related dis-orders is an area of enor-mous interest to familyand professional care-givers, clinicians andscientists. His diverse writ-ings include “ProbableAlzheimer’s Disease in anArtist” and transculturalaspects of dementia. (Seepage 20 Save the Dates!for further details.) b

“Predicting Alzheimer’s: How close are we?”

9th Annual Simons Research Symposium Features Dr. Marilyn Albert

From left: Drs. Pamela Sheridan of McLean Hospital; JoanHyde of Hearthstone Assisted Living; Marilyn Albert; andMarott Sinex, emeritus chapter Board member and a founderof both the Massachusetts Chapter and the NationalAlzheimer’s Association. Dr. Sinex will be this year’s honoreeat our 20th Anniversary Annual Meeting, and Dr. Albert oneof three distinguished panelists (see Save the Dates onpage 20).

Mrs. Marcia Simons (left), whose endowment has made theSymposium possible, with Dr. Marilyn Albert.

We are delighted to publish on these pages the fourth edition of ourDirectory of Research Opportunities. The role of our AssociationChapter, through its Medical & Scientific Advisory Committee, is

to educate the public about beneficial research, and to offer a connectionbetween our Alzheimer families and specific research opportunities. Wewelcome the chance to work with local medical and scientific investigators inany way helpful to the thousands of Alzheimer families in our service area.Our goal is to empower families to make informed decisions.

Research of any kind involving human subjects must, by law, be approved by an independent

committee made up of physicians, lay persons and others. All studies listed here received Institutional

Review Board approvals from their respective institutional sponsors before being approved for posting with

our telephone Helpline and on our Web site by the Medical & Scientific Advisory Committee. However,

neither the Committee nor the Alzheimer’s Association can guarantee the safety or efficacy of any study. We

urge you to call the contact listed for the study in which you are interested in order to get as much

information as possible. You may also want to ask your primary care doctor about your decision to join a

particular research study.

Should you choose to participate in a research study, we would be very interested in hearing about your

experience. We need your candid feedback to help guide us in evaluating future listings. Please call, write,

or e-mail your comments to our Committee staff, [email protected].

And please contact us if you need any additional information about participating in research studies, or

any other information about Alzheimer’s disease and related disorders, at:

Alzheimer’s Association, Massachusetts Chapter36 Cameron Avenue, Cambridge MA 02140

Tel: 1-800-548-2111 Fax: 617-868-6720Web: www.alzmass.org.

Note that while we’ve categorized the studies as Behavioral, Caregiving, Control Group, Diagnostic,

Drug, Genetic, Normal Aging, or Tissue Donation, some may actually fall into more than one category.

Please also note that we will be updating these listings regularly, adding new studies and deleting those

which are no longer recruiting volunteers. Thank you.

—Roberta Rosenberg, M.Ed., ChairMedical & Scientific Advisory Committee

Directory of Research Opportunities

for People with Dementia and Their Families

Medicineand Science


The Medical & ScientificAdvisory Committeewould like to thank for-mer intern LindsayMortenson for her helpin compiling thisDirectory.


BEHAVIORAL STUDIES

Acupuncture for People with ADFor people with Alzheimer’s disease or probable

AD. Requires 2-3 months of bi-weekly acupuncturesessions. The goal of this study is to explore the effec-tiveness and feasibility of acupuncture in mitigatingmood or behavioral problems, and to determine thepotential for improving cognition and physical func-tioning in AD. Compensation: free acupuncture val-ued at over $1,300.� Wellesley College Center for Research on Women� Contact: Dr. Nancy Emerson Lombardo at

781-283-2740

Cognition in Aging and AD: A Functional MRI Study

For people with early to mid-stage Alzheimer’swho are not taking medication for the disease, andhealthy people ages 20-89 to serve as control sub-jects. Should be able to remain still in an enclosedarea for a moderate length of time. The goal of thiseducational study is to gain a better understandingof the different types of human memory using fMRIimaging. Compensation: $10/hr or $50/day.� MIT/MGH Memory Disorders Unit (Boston)� Contact: Dr. Sue Corkin at 617-726-1728

or e-mail [email protected]

Cognitive Function in Aging and DementiaFor people with Alzheimer’s ages 45-85 in general

good health. Several tests (written and/or oral) willbe given over the course of two days at the MemoryUnit. The goal of this study is to examine the differ-ent types of memory that are impaired by the disease.Compensation: $10/hr or $50/day.� MIT/MGH Memory Disorders Unit (Boston)� Contact: Dr. Sue Corkin at 617-726-1728


Functional MRI Testing of Memory forNames and Faces

For people with early to mid-stage AD who are nottaking cholinergic drugs (such as Aricept). Shouldbe able to remain still in an enclosed area for a mod-erate length of time. The goal of this 11/2-hour studyis to gain a better understanding of a specific type ofhuman memory using fMRI imaging.Compensation: $50 plus transportation and parking.� Brigham & Women’s Memory Disorders Unit

(Boston)� Contact: Dr. Reisa Sperling at 617-732-8060


Predicting Aberrant Behavior in ADFor people with early to mid-stage Alzheimer’s

with a reliable caregiver who is willing to take part inperiodic interviews. There is an initial test and inter-view at the Medical Center, then follow-up phonecontact every six months over three years. The goalof this study is to discover a pattern in which patientsdevelop behavior problems. Parking paid.� UMass Medical Center (Worcester)� Contact: Dr. Joan Swearer at 508-856-5668

Sentence Comprehension in Aging and ADFor people with Alzheimer’s who are native

English speakers, to complete tests of memory andlanguage during six to eight 1-hour visits. Tests canbe completed at home or at another convenient loca-tion. Compensation: $10/hr.� Boston University� Contact: Dr. Gloria Waters at 617-353-7530

Theoretical Analysis of Learning andMemory in Age-Related Disease

For people with early to mid-stage Alzheimer’s, tocomplete several tests (written and/or oral) over thecourse of three outpatient days (can also be done onan inpatient basis). The goal of this study is to exam-ine the different types of memory that are impairedby the disease. Compensation: $10/hr or $50/day.� MIT Clinical Research Center (Cambridge)� Contact: Dr. Sue Corkin at 617-726-1728


Vision and Cognition in Alzheimer’s andRelated Disorders

For people with early to mid-stage Alzheimer’sand others, who can serve as healthy control sub-jects. Should have eight or more years of education,English as a native language, live at home or in ahome-like residence, and be able to perform at leastone of three main vision tests. Testing takes aboutthree hours at BU. The goal of this study is to exam-ine how visual problems in Alzheimer’s can impairthe ability to understand and use information, and toimprove vision with the goal of improving cognition.Compensation: $50 and free eye exam.� Boston University� Contact: Dr. Alice Cronin-Golomb at 617-353-3911


CAREGIVER STUDIES

Anticipatory Dementia SurveyFor 40-60 year old children of a parent with an

Alzheimer diagnosis, to answer phone survey. Thegoal of this study is to gain a greater understandingabout when, where and how these subjects seek helpfor their parent with Alzheimer’s, and to assess theirattitudes and fears regarding the disease.� Drs. Stephen Cutler and Lynne Hodgson� University of Vermont and Quinniapic College (CT)� Contact: New England Research Institute (Boston)

at 617-923-7747

The Influence of Values and Beliefs onCaregivers of People with MemoryDifficulties

For caregivers of people with Alzheimer’s andrelated disorders. The goal of this study is to examinehow different people deal with the pressures of beinga caregiver. Includes a 1-hour interview and 1-hourtake-home questionnaire.� McLean Hospital (Belmont)� Contact: Dr. Helen Kyomen at 617-855-3458


Quality of Care: Perceptions of People withEarly-stage Dementia and Their Caregivers

For two focus groups consisting of people withearly stage Alzheimer’s or a related dementia and/orfamily members, friends or providers who are re-sponsible for making decisions about the care ofsomeone with early stage Alzheimer’s or a relateddementia. Each focus group will participate in a 1 to2-hour session at The Picker Institute. The goal ofthis study is to evaluate patients’ well-being andquality of care. Compensation: $25.� The Picker Institute (Boston)� Contact: Dr. Amy Stern at 617-667-8613


Internet Caregiver StudyFor primary caregivers of people with Alzheimer’s,

vascular or other progressive dementia whose physi-cian is affiliated with Newton Wellesley Hospital.Must know or be willing to learn how to use a com-puter. Compensation: Computer equipment andtraining. The goal of this NIA-funded study is to testthe potential benefits of a secure Internet-based sitelinking caregivers to a medical, educational andsocial support system.� HealthVision (Waltham)� Contact: Dr. Paul M. Gertman or Laila Vehvilainen

at 781-647-7800 x24or e-mail [email protected]

Research Study Summaries


Physical Activity and Exercise amongSpousal Caregivers

For caregivers ages 65-75 who have been provid-ing care at home for least 20 hours a week over a oneto three year period for a spouse with Alzheimer’s.Requires only 20-30 minutes. The goal of this studyis to design new programs to assist future caregivers.� University of Massachusetts/Lowell� Contact: Dr. Susan Crocker Houde, Teri Dugan-

Frost or Lori O’Leary or [email protected]

Support of Alzheimer Caregivers: A Multi-cultural Perspective

For caregivers of people with Alzheimer’s disease.Requires a 20-30 minute taped telephone interview.The goal of this study is to examine, from a variety ofcultural perspectives, the types of support experiencedby people caring for someone with Alzheimer’s.� Northeastern University School of Nursing/Bouve

College of Health Science� Contact: Drs. Margaret Christensen, Joan Masters,

Mary Ann Gauthier, Magdelena Matzo orAbraham Nehiwame at 617-373-3649

Resilience Traits in African AmericanCaregivers

For caregivers of a family member withAlzheimer’s. Requires a one-hour interview at thecaregiver’s home or other convenient location. Thegoal of this study is to identify the processes andcharacteristics of resilience in African American fam-ily caregivers of people with AD.� University of Massachusetts/Boston� Contact: Kristine Van Lenten, RN at 781-545-5987

or Angela Udenze, RN at 781-848-9662

CONTROL GROUP STUDIES

Cognitive Function in Aging and DementiaFor healthy people ages 45-85 to serve as control

subjects. The goal of this study is to examine the dif-ferent types of memory that are impaired byAlzheimer’s. Several tests (written and/or oral) willbe given over the course of two days. Compensation:$10/hr or $50/day.� MIT/MGH Memory Disorders Unit (Boston)� Contact: Dr. Sue Corkin at 617-726-1728


Cognition in Aging and AD: A Functional MRI Study

(See “Behavioral Studies.”)

Vision and Cognition in Alzheimer’s andRelated Disorders

(See “Behavioral Studies.”)

Diagnosing Dementia Using FalseRecognition

(See “Diagnostic Studies.”)

Pupil Response to a Cholinergic Antagonist(See “Diagnostic Studies.”)

The Molecular Genetics of AD(See “Genetic Studies.”)

Database on Aging(See “Normal Aging Studies.”)

DIAGNOSTIC STUDIES

Diagnosing Dementia Using FalseRecognition

For people with Alzheimer’s or Frontal LobeDementia, and healthy control subjects over age 60,for a diagnostic study over one or two half-day hospi-tal visits. The goal of this study is to develop a com-puterized memory test. Compensation: $10/hr andparking.� Brigham & Women’s Hospital (Boston)� Contact: Dr. Andrew Budson at 617-732-8068


Measurement of Central Nervous SystemFunction with Eye Movements

For people with Alzheimer’s and healthy controlsubjects over age 60. Should be able to sit through aseries of tests during a half-day hospital visit. Thegoal of this study is to develop a way to diagnoseAlzheimer’s through eye movements. Compensation:$10/hr plus transportation and parking.� Brigham & Women’s Hospital (Boston)� Contact: Dr. Kirk Daffner at 617-732-8068


Pupil Response to a Cholinergic AntagonistFor people with Alzheimer’s who are not taking

any cholinergic drugs (such as Aricept), to be giveneye drops containing a cholinergic antagonist duringtwo or three half-day hospital visits. The goal of thisstudy is to measure how the pupil responds to an experimental eye drop, for diagnostic purposes. Compensation: $25/hour plus transportation andparking.� Brigham & Women’s Hospital (Boston)� Contact: Dr. Kirk Daffner at 617-732-8068


DRUG STUDIES

AIT-082For people with mild to moderate Alzheimer’s over

age 50. Study lasts six months and requires seven vis-its, accompanied by a caregiver. The goal of thisstudy is to examine the influence of this agent,which is not a cholinergic drug, on nerve cells inAlzheimer’s. Travel expenses paid.� Boston Clinical Research Center (Wellesley)� Contact: Karen Andrews at 781-431-1158 x30

E2020For people ages 55-70 with mild (mild memory

loss). Study will last up to seven months, and a care-giver must attend three of the six required hospitalvisits. The goal of this multi-center, randomized,double-blind, placebo-controlled study is to evaluatethe efficacy and safety of donepezil hydrochloride(E2020) in treating cognitive impairment. Parkingpaid.� UMass Memorial Health Care (Worcester)� Contact: Carolyn Lester at 508-856-2529


Estrogen For people with dementia over age 60 who exhibit

aggressive behavior and who have a reliable caregiv-er. Experiment runs for nine weeks, with hospital vis-its every week. The goal of this study is to examinethe use of estrogen to decrease aggressive behavior inelderly patients with dementia.� McLean Hospital (Belmont)� Contact: Dr. Helen Kyomen at 617-855-3458


NDD094For people over age 55 with early to mid-stage

probable Alzheimer’s who have a reliable caregiver.Study spans eight months and requires ten 1 to 2-hour visits to the Memory Unit. Subjects must stoptaking any cholinergic medications (such as Aricept)one month prior to study. The goal of this study is toassess the safety and effectiveness of this drug, devel-oped by Novartis, in treating Alzheimer’s. Parkingpaid.� Brigham & Women’s Hospital Memory Disorders

Unit (Boston)� Contact: Dr. Reisa Sperling at 617-732-8060


mailto:@

GalantamineFor people with early to mid-stage probable

Alzheimer’s who have a reliable caregiver. Studyspans five months and is being conducted at threesites. Subjects cannot take any other Alzheimer treat-ments (such as Aricept or estrogen) during the study.The goal of this placebo controlled study is to evalu-ate the safety and efficacy, under a slow-titration reg-imen, of the drug galantamine in the treatment ofAlzheimer’s.� Contacts:

UMass/Worcester: Carolyn Lester at 508-856-3081Boston Clinical Research Center: Irene Axelrod at781-431-1168Brigham & Women’s Hospital: Claire Corwin at617-732-8066

Vitamin E and Donepezil HCL (Aricept)For people over age 50 with early to mid-stage

probable Alzheimer’s who have a reliable caregiver.Study spans three years. The goal of this randomized,double-blind, placebo-controlled national drug trialis to delay the clinical progression from mild cogni-tive impairment.� Mass. General Hospital (Boston)� Contact: National toll-free line at 888-455-0655

or Marsha Tennis at 617-726-1610or e-mail [email protected]

GENETIC STUDIES

Faulty Genes in Familial AD For individuals or families with a positive history

of Alzheimer’s in two or more blood relatives. Bloodsamples will be needed from all subjects. Requires a30-minute, one-time hospital visit. The goal of thisstudy is to examine genetic links to Alzheimer’s.� Brigham & Women’s Hospital (Boston)� Contact: Dr. Dennis Selkoe at 617-525-5200


Genetic Epidemiology in AD: The MIRAGE Study

For people who have a living family member withan Alzheimer diagnosis and a living sibling who isalso willing to participate. Time required is twoweeks. The goal of this five-year, multi-institutionalstudy is to evaluate the association between geneticand non-genetic risk factors for Alzheimer’s disease.Travel expenses and parking paid.� Boston University School of Medicine� Contact: Dr. Lindsay A. Farrer at 617-638-5393


The Molecular Genetics of ADFor people diagnosed with Alzheimer’s disease and

their sibling(s). Blood samples will be needed fromall subjects. Requires a short, one-time hospital visit.The purpose of this study is to look at genetic links toAlzheimer’s. Parking paid.� UMass Memorial Health Care (Worcester)� Contact: Carolyn Lester at 508-856-2529


Risk Evaluation and Education for AD: The REVEAL Study

For adult offspring of living or deceased ADpatients. Requires four 1-2 hour meetings over sixmonths. The goal of this study is to provide risk assess-ment and genetic counseling, preferably to subjectsliving within 100 miles of Boston, New York City orCleveland, who do not exhibit any signs of dementia.� Boston University School of Medicine� Contact: Dr. Robert Green or Tamsen Brown at

617-638-5355

NORMAL AGING STUDIES

Cognitive Assessment of Normal AgingFor healthy people over age 40. The goal of this

study is to examine the processes involved in normalaging. Requires about 1 hour of testing at theMedical Center. Parking paid.� UMass Medical Center (Worcester)� Contact: Dr. Joan Swearer at 508-856-5668

Database on Aging For two different groups: 1) healthy people over

age 60 to serve as control subjects; and 2) peoplewith mild dementia over age 60. Requires two yearlytests lasting 21/2 hours at the subject’s home, at B.U.or at the VA Hospital in Bedford. The goal of thisstudy is to collect information for a database of infor-mation on aging. Compensation: $25.00 plus a giftcertificate to Stop ’n Shop.� Boston University Alzheimer’s Disease Core Center� Contact: Dr. Neil W. Kowall at 781-687-2927


Genetic Epidemiology in AD: The MIRAGE Study

(See “Genetic Studies.”)

Memory Distortion in DementiaFor healthy people over age 80. Must complete a

series of tests for 21/2-31/2 hours either at the hospitalor at home. The goal of this study is to examinememory distortion for diagnostic purposes.Compensation: $10/hr and parking.� Brigham & Women’s Hospital (Boston)� Contact: Dr. Andrew Budson at 617-732-8068


Recall: Forgetfulness—What’s Normal and What’s Not

For people interested in memory loss problemswho are not past or current caregivers of someonewith identified memory loss. Requires a 11/2 hourinterview, viewing and testing the computerized“Forgetfulness Program,” and a brief follow-upphone interview after six months. The goal of thisstudy is to evaluate the usefulness of a new educa-tional tool (a CD-ROM disk) designed to teach peo-ple how to distinguish between normal forgetfulnessand serious memory loss problems.� Hebrew Rehabilitation Center for Aged (Boston)� Contact: Dr. Barbara Tarlow at 617-363-8548


TISSUE DONATION

ADRC Brain BankFor donation of post-mortem brain tissue for

research purposes in a range of projects approved bythe Center, and to examine the tissue to confirmdiagnoses of Alzheimer’s disease. Pre-registrationrequired.� MGH/Neuropathology Core (Boston)� Massachusetts Alzheimer’s Disease Research

Center� Contact: Dr. Tessa Hedley-Whyte at 617-726-5154

AD Brain Tissue ResearchFor donation of post-mortem brain tissue from

people with a positive family history of Alzheimer’sdisease for research purposes. Pre-registrationrequired.� Brigham & Women’s Hospital (Boston)� Contact: Dr. Dennis Selkoe at 617-525-5200


Diagnostic Pathology of ADFor donation of post-mortem brain tissue for

research associated with dementia, and to examinethe tissue to confirm diagnoses of Alzheimer’s disease.� Bedford VA Medical Center� Contact: Dr. Ann McKee at 781-687-2913

Harvard Brain Tissue Resource Center For donation of post-mortem brain tissue as part

of a national program to collect and distribute thetissue for approved research purposes, and to exam-ine the tissue to confirm diagnoses of Alzheimer’sdisease. Pre-registration recommended.� McLean Hospital (Belmont)� Contact: Dr. Francine Benes at 1-800-272-4622

or 1-800-BrainBank


Medicineand Science

Dementia Research Studies: A Guide for People with Memory Impairments and Their Caregivers

Alzheimer’s disease is a progressive, debilitating braindisorder affecting an estimated four million Americans.Symptoms include impaired memory, thinking and

behavior. Alzheimer’s is the most common type of dementia,and the fourth leading cause of death among adults in the U.S.

Although there is currently no cure, the past decade has seenstunning successes in the search for a cause. Some probablecauses include genetic predisposition, abnormal protein build-up in the brain, and environmental effects. With continuedresearch, the future holds exciting possibilities for treatment.

What Is a Research Study?There are two types of research: basic and therapeutic. Basic

research improves knowledge of the nature and cause of thedisease. Therapeutic research investigates treatment and pre-vention strategies. Research studies are designed to find newand better ways to help patients and their families by answeringspecific scientific questions, and by evaluating the safety andeffectiveness of medical procedures or medications.

Why Are Research Studies Important?We would all like people with Alzheimer’ disease and other

dementing illnesses to receive effective treatments. We wantprocedures and drugs that work, that are safe, and cost as littleas possible. Through research studies, scientists are able tolearn what works best, and share this knowledge with thosewho need it the most. Advances in medicine and science are thedirect result of new ideas and approaches developed throughresearch.

Armed with new findings about the onset and progression ofAlzheimer’s, scientists from disciplines such as moleculargenetics, neurology and pharmacology are working together topinpoint the true cause of this disease and to develop moreeffective ways to treat it.

Should You Participate?There is no single reason to make this choice. And while

most are satisfied with it, we should all consider such a deci-sion very carefully.

There are a number of benefits.Some people with dementia and their families feel that by

participating now, they will improve the chances for otherslater. Others believe that a particular research study may lessentheir symptoms or slow the disease process. Research centers

have the mostadvanced diagnos-tic methods avail-able for analyzingthe degree andtype of dementia.Most will providethe testing andevaluation free of

cost. While research staff cannot replace the personal or familyphysician, research patients can receive more medical andother kinds of attention than people seen routinely forAlzheimer’s disease or other dementing illnesses. And researchstaff has more experience with the complicationswhich accompany these illnesses.

There are also some risks to patients, and bur-dens on caregivers.

Some studies require frequent visits and manytests, and often require the close involvement of acaregiver. Some treatments have uncomfortableside effects, other procedures and drugs may haveeven more potentially serious complications. Andsome clinical trials require that a percentage ofparticipants take a placebo rather than the drugbeing studied. Another consideration is that some studies mayrequire that you not be taking prescribed drugs for Alzheimer’s,such as Aricept or Cognex, or certain other medications.

What Else Should You Know?By law, research of any kind involving human subjects must

be approved by an independent committee made up of physi-cians, lay persons and others. Among other things, they mustagree:

� the study will contribute new information to the field

� the benefits outweigh the risks

� participation is entirely voluntary

� participants can drop out of any study at any point withoutpenalty

� Informed Consent forms are understandable and fullydescribe the risks and benefits.

What Is Informed Consent?It is a process which insures that you-or your representative-

completely understand the intent, procedures, risks and benefitsof a study, and includes signing a written agreement indicatingyour willingness to participate. Extra protections apply to vul-nerable populations, such as people with memory impair-ments. The Informed Consent form holds the research physi-cian, the treatment’s manufacturer and the medical institutionconducting the research to the normal standard of care foryour well-being.

People with Alzheimer’s disease and their families are majorcontributors to new research. The only way to improve treat-ment and decrease the burdens and cost of this disease is tostudy people who have it, and those who help care for them.

The research community depends on volunteers to give newtreatments a carefully monitored trial.

For a summary of ongoing dementia research studies orfor more information about participating in a study,drug trial or control group, please call or write theAlzheimer’s Association, Massachusetts Chapter, or visitour Web site at www.alzmass.org.


Copyright © 2000Alzheimer’s Disease andRelated Disorders Asso-ciation, MassachusettsChapter (4th edition).Any reproduction of thismaterial should containthe following credit: Thismaterial provided cour-tesy of the Alzheimer’sAssociation, Mass-achusetts Chapter.

“We weredetermined toparticipate insomething thatmight help ustake some controlover this disease.”

—The Noonan Family

Safe Return

“It’s a greatcollaboration.It’s going to have agreat impact.”

—Norfolk County SheriffMichael Bellotti

Important Note:State AgenciesNow Cover SafeReturn Fee

Advocates succeeded ingaining coverage of theone-time $40 cost of SafeReturn registration for eli-gible individuals throughthe state’s ASAP/Homecareagencies. Safe Return isnow an approved Pur-chased Service for homecare program clients. Tofurther facilitate registra-tions in Safe Return forpeople with memory im-pairments, the Massa-chusetts Chapter will allowASAP/Homecare agenciesthat wish to do so to sub-mit registration applica-tions directly to the chap-ter, which will bill them ona monthly basis. Specialthanks to Dan O'Leary, for-mer Massachusetts Chap-ter Executive Director andcurrent ED at Mystic ValleyElder Services, state ElderAffairs Secretary LillianGlickman and the Gov-ernor’s Advisory Councilon Alzheimer’s Disease fortheir attention to this life-saving effort. b


For an older person with Alzheimer’s disease, wanderingfrom home or from a care facility and becoming lost isnot only a high probability, it is an emergency situation

which police and fire departments are increasingly being calledon to resolve. To address this problem, the Alzheimer’sAssociation’s Massachusetts Chapter and the Norfolk CountySheriff’s TRIAD program conducted aunique and highly practical training June 15for police and fire department personnel inthe 28 cities and towns comprising NorfolkCounty.

An estimated 130,000 people acrossMassachusetts suffer from Alzheimer’s dis-ease or a related dementia. Most will wanderand get lost at some point in their illness.Nationally, 35,000 such cases are reported topolice each year. Many more go unreported.The special skills the training builds will helpto resolve wanderer cases quickly and safely.

“It’s a great collaboration. It’s going tohave a great impact,” Norfolk County SheriffMichael Bellotti said in an interview withRegina Montague of the Boston Globe, whocovered the full daytraining. Reviews fromthe 40 participants wereexcellent.

The TRIAD pro-grams, coordinated bySheriff’s Departments ineach county, connectelders, elder serviceproviders and lawenforcement throughoutreach and education.The June 15 trainingwas held at St. Anthony’sChurch hall in Cohassetand was the second in aseries planned for eachcounty through theTRIAD programs. Inaddition to NorfolkCounty Sheriff MichaelBellotti, co-sponsors ofthe June trainingincluded Norfolk CountyDistrict Attorney WilliamKeating, Sunrise assistedLiving in Cohasset andthe Cohasset PoliceDepartment.

The centerpiece of the training was police search and rescueoperations, taught by Curt Rudge, regional chief park rangerfor the state’s Department of Environmental Management andauthority in search management. Gerald Flaherty of theMassachusetts Chapter staff, who has been involved in over 700lost elder cases, offered a short introductory overview of the

Alzheimer’s Association’s national SafeReturn program, a 24-hour service fundedthrough the U.S. Justice Department. A fur-ther practical benefit of the training was awrap-up section on interpreting laws whichhave a special bearing on memory-impaired elders, taught by author andattorney John Scheft, former director of thestate Attorney General’s ElderProtection Unit.

The series’ first training was sponsoredby the Association’s Cape and IslandsChapter April 24 in Centerville for policeand fire departments in Barnstable County,in cooperation with our chapter and theBarnstable County Sheriff’s and DistrictAttorney’s Offices. Many thanks to Cape

Chapter executive direc-tor Kathy Pastva for herhard work in makingthat kick-off training asuccess.

Additional thanks forthe Cohasset training goto Mary Penny andChristine Haden of Sun-rise Assisted Living, whonot only provided for thefood and site, but alsoraffled off copies of Atty.Scheft’s three books onthe law for police; and toSpecial Deputy SheriffCourtney Cahill. A spe-cial thank-you goes tofamily caregiver LauraSprague, who shared herfather’s wandering expe-rience with BostonGlobe readers. bFor Safe ReturnProgram registrationinformation, call BeaGoldberg at 1-800-548-2111 or visit theMassachusettsChapter’s Web site atwww.alzmass.org.

District Attorneys Also Join Statewide Effort

County Sheriffs Sponsor Safe Return Training

Unsung Heroes: Search and Rescue Volunteers

The Alzheimer’s Association’s Massachusetts Chapter wishes toexpress its most heartfelt appreciation to members of the all-volunteer Central Massachusetts Search and Rescue Team

(CMSART) for their assistance to the Safe Return Program. Under theleadership of president Ron Bruchmann, the team recently wentabove and beyond their usual good work.

Answering a request for assistance from colleagues at the NorthernConnecticut Chapter, our chapter’s Safe Return coordinator contactedCMSART, which had previously responded to several requests from ourchapter for local searches. Ten members of the CMSART team madethe long drive to central Connecticut on June 10 to search for a manwho had wandered from an assisted living facility 12 months ago andhas never been found. Working with the Northern Conn. Chapter, themissing patient’s family, local law enforcement and Conn. StatePolice, team members spent the day slogging through swamps andthickets, and will be returning again for a second search of the area.

Recently, the CMSART team was instrumental in another SafeReturn case, aiding in the successful recovery of a missing Alzheimerpatient from Fitchburg, Mass. Curt Rudge, chief of Ranger Servicesfor the state Department of Environmental Management, also lent hisinvaluable expertise in that case. On behalf of the thousands of peoplewith Alzheimer’s disease and their families who rely on Safe Return,thank you once again to these unsung heroes. b

Norfolk County Sheriff Michael Bellotti


CommunityPartnerships

In each Newsletter,space permitting, wehighlight the good workof some of our 11Alzheimer CommunityPartnerships. For moreinformation about theseenergetic collaborationsof local family and pro-fessional caregivers,call the Alzheimer’sAssociation,Massachusetts Chapter,at 617/868-6718 andask for the Partnershipcontact number for yourcommunity, or visit thechapter’s web page atwww.alzmass.org andclick on “Partnerships.”

Photos on this page byPaulette Masse

BaypathKristen Goldner of the Baypath Alzheimer’s Partnership tells

us the Partnership is sponsoring a conference for elders titled“Everything You Always Wanted to Know about Memory Lossbut Forgot To Ask” on Friday, October 20 from 8:30 to 11:00a.m. at BayPath Home and Community Services inFramingham. For information, call Kristen at 508/879-1771.

North ShorePartnership co-chair Gwen Kopka of North Shore Elder

Services reports that there are now ten family caregiver supportgroups operating in the North Shore Alzheimer Partnershiparea, up from only five when the Partnership formed four yearsago, including a support group for people with early stageAlzheimer’s. The Partnership meets monthly. It has organized atraining seminar for over 100 Certified Nurse Assistants, HomeHealth Aides and other paid caregivers, and also held its thirdannual Alzheimer’s Caregiver Conference. More than 100 fami-ly and professional caregivers turned out at the CommunityLife Center in Peabody to hear Dr. Paul Raia (of the Massa-chusetts Chapter staff) speak on habilitation therapy; MarilynStesonis of Benchmark Assisted Living present on the effect of afamily member’s Alzheimer’s disease on young children andgrandchildren; and Alzheimer consultant and author JoanneKoenig-Coste share her knowledge of early stage issues.

The Partnership also received a grant of $4,000 from theJohn Henry Carr Alzheimer’s and Aging Foundation to providesubsidized respite care in assisted living programs in the area.Partnership member agencies are working to expand the avail-ability on the North Shore of quality assisted living facilitieswith dementia special care units, and to have the active partici-pation of those facilities in the Partnership. Families that couldnot otherwise afford this resource are encouraged to consider aplanned respite break.

Southeastern Mass.Partnership co-chair

Paulette Masse of CountryGardens Nursing andRehabilitation Center inSwansea reports on theLegislative Breakfast spon-sored in June by theAlzheimer’s Partnership ofSoutheastern Mass.Participants gathered at White’s of Westport to hear firsthandthe importance of legislative advocacy from a impressive panelincluding: (from left) state Senator Joan Menard of Somerset;Susan Kelly-Grasso of the Massachusetts Chapter staff;Alzheimer family member Jeannine Ruggeiro; and geriatricnurse practitioner Ameia Yen-Patton of Southcoast HospitalsGroup. Panelists offered different perspectives on the needs ofpeople with Alzheimer’s and their caregivers, but all urgedactive advocacy in support of Alzheimer related items in the

state’s FY01 budget. Many thanks to Beth-Ann McCrae, whosechairmanship of the Partnership’s advocacy committee helpedmake the day such a success. (For more on the statebudget, see pages 2 and 8.)

Another innovative segment at the Southeastern Mass.Family Conference included lively skits from the play “OpeningMinds” by Sharon Jenson of Nichols House in Fairhaven. Theskits portrayed typical caregiving scenarios and dramatizedtheir successful resolution. Shown here in one such skit areSharon Jenson, Partnership co-chair Paulette Masse (in rockingchair) and Tadd Clelland ofMarriott Mapleridge inDartmouth.

White’s of Westport was alsothe scene of the Partnership’sannual Caregiver Conference onMay 20. Dr. Neal G. Ranen, asso-ciate professor of psychiatry atPennsylvania State College ofMedicine, delivered the keynoteaddress on “When, Where andHow Medications Should Be UsedTo Manage Behaviors inAlzheimer’s Disease.” The confer-ence also featured an issue-spe-cific poster session. Shown hereare Beth-Ann McCrae of theVillage at Willow Crossings inMansfield, and furry friend,demonstrating the value ofpet therapy.

West SuburbanSusan Garland reports on an

exciting new program offered byWest Suburban Elder Services,one of the member agencies ofthe West Suburban AlzheimerPartnership. Through theAlzheimer’s Caregiver’s CoachProgram, with Susan as “coach,”family caregivers can get over-the-phone or in-home supportto:1) understand and resolvecrises; 2) learn about Alzheimer’sdisease and related disorders; 3) manage difficult behaviorsstep-by-step; and 4) connect to available services such asrespite, home care, day programs, legal assistance and supportgroups in the West Suburban area.

Susan, a clinical social worker who also volunteers on ourHelpline, has advised us that foundation support for the CoachProgram allows her services to be offered without a fee at thistime. Caregivers can contact her directly at 1-617-972-5692. b

Community Partnership News

Development


Thank You to Our 1999 Memory Walkers, Sponsors and Volunteers

Thanks go also to:In Eastern Mass:Presenting SponsorGenesis EldercarePatronsBlaire House Healthcare CentersProgress SoftwareSunrise Assisted LivingFriendsBoston Alzheimer’s CenterThe Boston GlobeThe Cambridge TabCambridge Trust CompanyLifecare Centers of AmericaMcLean Hospital

NovartisSecure Horizons/Tufts Health Plan for

SeniorsWelch Healthcare and Retirement GroupOther SponsorsArcadian Farms; At Home Care; Au Bon

Pain; Bear Hill Rehab & Nursing Center;Belmont Manor Nursing Home; Bob’sStores; Briarwood Healthcare;Brigham’s, Inc.; Brighton Garden ofDanvers; Cadbury Commons;Cambridgeside Galleria Mall; TheCommunity Family, Inc.; Converse, Inc.;Covenant Health Systems; CoyoteImpressions of Arlington; DunkinDonuts/Watermark Donut Co.; Elihu

White Alzheimer’s Center; Epoch; Esai;Evanswood Center for Older Adults; GlenRidge; Hart Supply; HearthstoneAlzheimer Care; Independent Living;Jewish Healthcare Center; MaplewoodPlace; Marathon Healthcare Group;Marland Place; Masonic Home; MemoryRide, Inc.; Necco/New EnglandConfection Company; Olympus HealthCare; Organization for EnhancedCapability; Park Avenue Nursing &Rehab; Peggy Lawton Cookies; Pfizer;Royal Sonesta Hotel; Sprint; St. MaryHealth Care Center; Standish Vllage;Sunbridge; Veryfine Products; WachusettMountain; Whitney Place; Wilson Farms

In Western Mass:PlatinumSisters of Providence Health SystemsGoldChancellor Gardens of East LongmeadowHealth New England Harvard Pilgrim

HealthcareSweet Brook Care Centers, Inc.SilverThe Arbors at AmherstThe AtriumBerkshire Healthcare SystemsCharlene ManorEast Longmeadow Skilled Nursing CenterFairview ManorKimball FarmLinda ManorMount GreylockSkilled Nursing Unit at Berkshire Medical

CenterWillowood of PittsfieldHearthstone Alzheimer Care at Laurel LakeLittle’s Pharmacy & SurgimedMelbourne Place Assisted Living

CommunityNorthern Berkshire Healthcare SystemQuabbin Valley Health CareRenaissance Holyoke/Westfield+Home

HealthBronzeBerkshire BankEasthampton Savings BankEisai PfizerJewish Geriatric ServicesThe Memory ClinicReeds LandingWestmass EldercareWilliamstown Savings BankCorporate FriendsBacon & WilsonBalise Motor SalesBank of Western MassachusettsBerkshire Life Insurance Co.Coakley, Pierpan,Dolan & Collins

Congressman EdwardMarkey (far left) leads

Memory Walkers. Photo by Ellen Shub

As we prepare for Memory Walk 2000, we would once again like to thank themore than 3,000 walkers, along with our generous corporate sponsors and amarvelous group of volunteers, who made 1999 our most successful Memory

Walk to date. Including the impressive results from the former Western Massachusettschapter, proceeds exceeded $300,000. A special thanks to our satellite Walk site coordi-nators: in Fall River at Heritage Park at Battleship Cove, Paulette Masse and TerrieArruda; in Haverhill at Glynn Memorial Nursing Home, Nancy Savarese; in Lowell atthe Sampas Pavilion on the Merrimack River, Harriet Udoff, Joan Johnson and SusanAntkowiac; in Walpole at the Bird Middle School, Bill McGrory; and in Worcester at theBlair House, Angela Monahan. Kathryn Hedgepeth did a fabulous job coordinating theWestern Massachusetts sites, at the Apple Squeeze Festival in Lenox and at StanleyPark in Westfield.

Hoodsie’s Gang, walking in memory of Hoodsie Maureen Wade, who passed awaylast July, raised over $10,000 and for the fourth year in a row was the top family team.Sherrill House in Jamaica Plain, repeating as top corporate team in EasternMassachusetts, raised over $5,000, while the Winchester Alzheimer Caregiver SupportGroup took top honors in the support group team category, also raising in excess of$5,000. In Western Massachusetts, the top corporate team, with 68 members from theSweet Brook Care Centers in Williamstown, raised $6,000. Our top individual walkerwas Marilyn Hayes, who alone raised over $8,000. For our music, thanks to Linee. TheNational Anthem was sung by Siddhartha Misra.


Country CurtainsCraneville Place of DaltonFranklin County Home Care Corp.Attorney Michael HookerHoosac BankJames E. Kimball, Jr., Inc.Memory Disorders Program at Baystate

Medical CenterPittsfield Cooperative BankQualified Plan ConsultantsTripod, Inc.Umlauf & DunnDonorsChanning L. BeteDevanny Condron Funeral HomeHart’s PharmacyHickey-Birches Funeral HomeOld Country BuffetMount Snow, Vermont

Top Individual WalkersIn Eastern Mass: Marilyn Hayes,

Marion Pollock, Stanley Solomont,Janet Reardon, Marjorie Shea-Burke,Allison Drescher, Joe Walsh, ChristinaKinard, Anne M. Clear, Jeanette Rosa-Brady, Sheila Walsh, Patrick J. Lavoie,Patricia Tuscano, Rory J. Drolet,Carolyn Fleiss, Nora Ghillany, TomRepucci, Roberta Rosenberg, HathieJuliano, and Tim Wade.

In Western Mass: Art Ford, BarbaraMilensky, Jaime Cass, Kathryn Wagner,and Royster Hedgepeth

VolunteersIn Cambridge: Honorary Chair

Congressman Ed Markey, Karen andPaul Bibo, Susan Cook, Geri Crews,Jean and Jim Diprima, LisaDiamandis, Priscilla Gibson, ElizabethHenderson; Elizabeth Kirstein, LouLaider, Don Milotte, Tim Morrison andfamily, Rachel Goldberg, Sue Sharrowand friend Joan, Lil Simons and fami-ly, Stanley Solomont, Carol Steiner,Tracy Stewart, Kathy Walsh and family,and Cathy Yarrow.

In Fall River: Terrie Arruda, TinaBarboza, Judy Elstee, Linda Gerrard,Paulette M. Masse, Linda Mauro,Christine Nelson, and Mary LouSpinelli.

In Haverhill: Administrator JamesSullivan of the Glynn Nursing Home,and the Glynn Alzheimer’s SupportGroup.

In Lowell: Susan Antkowiak of TheAtrium at Drum Hill, the BostonBruins, Paula Campbell, Joanne

Chaulk, state Representative CarolCleven, Community Family ADHC,Community Teamwork, Inc., MayorEileen Donohue of Lowell, George andMarylou Eliades, DeputySuperintendent Paul Goyett and theLowell Auxillary Police, John Hogan,Joan Johnson, Donna Koski, CityManager Brian Martin, Dr. KarenMelillo, Dr. Stephen Moses, EnoreOuellette, state Senator StevePanagiotakos, Skip’s Restaurant,Assistant City Manager James Smith,TJ the DJ, Terry Toland of TolandCommunications, Trinity Ambulance,Veryfine Products, and Drew and JoanWeber and The Spinners.

In Walpole: William McGrory, NancyFerrari, Kathy Vachon, Joanne Giustiand Sue Mcquaid (all of CaritasNorwood Hospital), Beth McCrae ofThe Village at Willow Crossing,Madeleine McNielly of CommunityVisiting Nurse Agency in Attleboro,Dawn Gemme of the Attleboro PoliceDepartment, Monica Young of EpochSenior Living at Norton Place, JamieBrenner Gutner of the VNA CareNetwork, Inc., Julia Manning ofSunrise Assisted Living, Linda Connor-Lacke, DJ Cage of Music Makes It!, andEd Wiseman.

In Worcester: Melissa DesJardins,Claire Gedman, Pat Rourke, LisaMartin, Alicia Kenneway, DavidPoullin, Alicia Nordin, RobertMonahan, Sue Nolan, Caitlin Murphy,Thomas Nolan, and United WayVolunteers.

In Western Mass: Sharon Ashton,Denise Beaulieu, Meredith Brown,

Shirley Burke, Joanne Chuslo, PatClark, Cara Deming, Elaine Farrell, ArtFord, Karen Gold, Beth Hinkley, HaylKephart, Amy Kruger, Janet Laroche,Penny McCoy, Barbara Milensky,Roxanne Mosher, Maryellen FordMougin, Gail O’Hearn, StephaniePeterson, Cathleen Pula, ValerieRuscio, Fredrica Sloan, JenniferSummers, Delores Thimot, KellyThorn, Jill Turomsha, Audrey Walbert,Melanie Walker, Maryann Watson, andMaxine Wisbaum.

Development

With WWLP-TV22 meteo-rologist and master ofceremonies NickMorganelli at the micro-phone, chair GabrielleThomes presents PioneerValley Memory Walkthank-you plaque to JeffGraham of the BerkshireHealthcare System.

Amid the raindrops of early May, golfersin Western Massachusetts enjoyed anunusually bright day for the chapter’sfundraising outing at the Oak RidgeGolf Club in Feeding Hills. Behind thedesigner sunglasses are fourth placefinishers Christine Korona, DarleneGill, Brenda Norton and Pat Vitkas. Theouting raised $4,800 for our programsand services.

“Make the Link” Golf TournamentMONDAY, AUGUST 7

Our 3rd Annual “Make the Link” GolfTournament for the benefit of the Alzheimer’sAssociation, Massachusetts Chapter, is set forMonday, August 7, at the Woodland Golf Clubin Newton. We are thrilled that Red Sox pitch-ing legend Dennis Eckersley will again be joining us as ourHonorary Chair for an event that has emerged as one of the topcharity golf tournaments of the summer. Our 2000 tournamentis sponsored by Verizon Wireless, with presenting sponsorPraecis Pharmaceuticals, Inc. You can look forward to awonderful day for a special cause on a marvelous golf course.And some great prizes! Please join us on the Woodland links.Registration 10:30 a.m. Lunch. Shotgun start 1:00. Cocktails,auction, awards. Dinner 7:00 p.m.

For more information, e-mailDick Fleiss in our developmentoffice at [email protected] orcall Dick at 617/868-6718 x217.Corporate sponsorship oppor-tunities are available. Please alsocall if you have items you wouldlike to donate to the auction por-tion of the evening program. b

Annual Meeting Celebrates 20 YearsTHURSDAY, SEPTEMBER 14

Help celebrate our Massachusetts Chapter’s 20th anniversaryAnnual Meeting. At the Museum of our National Heritage inLexington.. Join moderator Nancy Mills and our distin-guished panel, including research scientist Marilyn Albert,author and lecturer Joanne Koenig-Coste, and Michael Splaineof the National Alzheimer’s Association Public Policy Division,for a lively discussion highlighting our two decades of service topeople with dementing illnesses and their families. Specialhonorees include Dr. F. Marott Sinex, a chapter founder, stateElder Affairs Secretary Lillian Glickman and long time volun-teer Phyllis O’Hara. Dessert reception. For more details, e-mailRachel Hawk in our education office at [email protected] call 617/868-6718. Chapter members will be receiving invi-tations and brochures.

Memory Walk 2000SUNDAY, SEPTEMBER 24

Spirit, hope and lots of fun! Join us, along with Congressman Ed Markey, our

Memory Walk honorary chair, and Dr. Deborah Blacker ofMGH, our honorary medical chair, for the MassachusettsChapter’s 8th annual Memory Walk, sponsored by PraecisPharmaceuticals, Inc. This is our biggest and most importantfundraising event. The main walk site again this year will be inCambridge, in Canal Park at the CambridgeSide Galleria, on

Events

SCU TrainingSeptember 28

Dr. Paul Raia of theMassachusetts Chapterstaff will be featured at theMassachusetts ExtendedCare Federation’s secondSpecial Care Unit trainingon Thursday, September28, from 1:00 to 4:00 p.m.at the Holyoke HospitalTransitional Care Unit. For more information,please call Ann Turner of the Federation at617/558-0202.

G E T R E A D Y ! A L Z H E I M E R ’ S A W A R E N E S S M O N T H I S C O M I N G I N N O V E M B E R !


S A V E T H E D A T E !

Close to 5,000 physicians,hands-on professional careproviders, public policy-

makers, researchers and staff fromAlzheimer organizations world-wide gathered at the WorldAlzheimer Congress 2000 inWashington, D.C. July 9-18 toshare information on pivotalresearch, on bridging the gapbetween research and care, and oncreative care.

On Sunday, July 16, President Clinton announced $50 mil-lion in new federal funding for Alzheimer research. These newfunds will be used to explore some of the exciting areas ofresearch discussed during the Alzheimer Congress.

We are extremely proud to announce that our MassachusettsChapter was one of 17 chapters within the Association’s talented190-chapter network to send presenters to join the world’s lead-ers in Alzheimer research and care at this first-of-its-kind con-

ference hosted by the Alzheimer’sAssociation (USA), Alzheimer’sDisease International, and theAlzheimer Society of Canada. Rep-resenting the Massachusetts Chap-ter were Board chair Nina Silver-stein, PhD., of the University ofMassachusetts Gerontology Insti-tute; chapter training consultant,author and former Board of Direc-tors chairperson Joanne Koenig-Coste, MEd; and the chapter’s

Director of Patient Care and Family Support, Paul Raia, Ph.D.As we welcome a new century, we also face the reality that

more than 22 million people worldwide will developAlzheimer’s disease by 2025. World Alzheimer Congress 2000offered a unique opportunity to share knowledge and identifystrategies for eliminating the threat of Alzheimer’s disease totoday’s citizens, and to future generations. b

Massachusetts Chapter Represented among World Organizations in Washington

World Alzheimer Congress

Listed dates are also highlighted on our Web page atwww.alzmass.org.

Sunday, September 24. Registration 9:00 a.m. Save the datenow for the full 6.2 mile “Spirit” walk or the two mile “Hope”walk along the scenic Charles River. There are also eight satel-lite Memory Walk sites across the state. Six of the eight satelliteWalks—in Athol, Fall River, Haverhill, Lowell, Walpole andWorcester—will also take place September 24. Our MemoryWalk in Lenox will be on Saturday, September 23, and the Walkin Westfield will be on Saturday, October 15. These always fes-tive events feature entertainment, refreshments and incentiveprizes. The walker who raises the most money will receive tworound-trip tickets on Southwest Airlines to a destination ofchoice. For more information, e-mail Sheila Watnick in ourdevelopment office at [email protected] or call Sheila at617/868-6718 x 208. Corporate sponsorship opportunities arealso available for Memory Walk. b

Support Group Leaders ForumFRIDAY, OCTOBER 6

This annual half day training for current and prospectiveAlzheimer family support group leaders will run from 9 a.m. to1 p.m. at the Willows in Westboro. Keynote by Paul Raia,psychologist on staff at our Massachusetts Chapter. Dr. Raia willaddress “The Issues behind the Issues,” a discussion of howgroup leaders enable caregivers to get the greatest therapeuticbenefit in a support group. Includes break-out group discus-sions. For more information, call Harriet Udoff at theMassachusetts Chapter’s Lowell area office at 978/937-5576 ore-mail at [email protected].

Spanish Language Conference for FamiliesSATURDAY, OCTOBER 7

The Alzheimer’s Association will hold its first SpanishLanguage Conference for Families at the Curtis Hall Com-munity Center, 20 South Street in Boston’s Jamaica Plainneighborhood. Drs. Pascual Leone of Beth Israel DeaconessMedical Center and Antonia Coppin of the UMass Boston Geron-tology Institute will explain the difference between normalaging and Alzheimer’s disease, and current treatments. A panelof three family caregivers will also talk about their experienceswith loved ones affected by dementia. Again, this half day con-ference will be conducted entirely in Spanish. For details, callConchita Rodriguez on our Spanish language phone line at617/868-8599. (See page 2 for Spanish translation.)

Simons Research SymposiumTUESDAY, NOVEMBER 14

The chapter’s Medical & Scientific Advisory Committee hasnamed Dr. Jeffrey Cummings, director of the Alzheimer’sDisease Center at UCLA as the prestigious year 2000 Matthewand Marcia Simons Alzheimer Research Symposium Lecturer.Dr. Cummings’ work studying and treating behavioral distur-bances in Alzheimer’s disease and the related disorders is anarea of enormous interest to family and professional caregivers,clinicians and scientists. His diverse writings include “ProbableAlzheimer’s Disease in an Artist” and transcultural aspects ofdementia. At the Colonnade Hotel in Boston. Dessert recep-tion. Public welcome. Free of charge. Chapter members will bereceiving invitations and brochures. b


Events“Sketches of Life” Exhibit

Below is one of the works from “Sketches of Life,” anexhibit of art and artifacts showing July 20-21 in theCarol Schlosberg Alumni Gallery at the Montserrat

College of Art in Beverly and highlighting the stories of peoplein the early stages of Alzheimer’s disease. The show, an inter-generational project opened to the public, combinesthe artistic renderings of Montserrat students withthe oral histories of residents of the OceanView atEllis Square assisted living facility. Its intent is topreserve the memories of OceanView’s residents withearly stage Alzheimer’s while broadening theMontserrat students’ experiences. The studentsbegan the project early in the spring semester bymeeting with the residents in one-on-one sessions.The resulting exhibit, coordinated by Elissa Della-Piana, chair of the college’s IllustrationDepartment, includes students’ interpretative artwork along with photographs and other memora-bilia provided by the residents.

This collaborative project was funded in part bythe Massachusetts Cultural Council, a state agency

that funds the Beverly Cultural Council, in cooperation withthe Alzheimer’s Association, Massachusetts Chapter. Summergallery hours 10 to 4:30, Monday through Friday. The gallery isaccessible to people with disabilities and admission is free. Formore information, please call 978/921-4242. b

S A V E T H E D A T E ! First WeinstockMemorial TriathlonRaises $2,500

On May 21, at theWorkout Club inMarshfield, organizersMaggie Morley and WendySears led 40 participantsthrough the first annualWhitey WeinstockMemorial Triathlon, cover-ing a course which includ-ed stationary cycling, athree-mile run and weightlifting. Participants andlocal businesses raisedmore than $2,500 forAlzheimer research inhonor of Maggie's father,Arthur "Whitey" Weinstock,who died last January afterbeing diagnosed withAlzheimer's in 1995.

For details on nextyear's race or to be placedon the mailing list for arace application, pleasecall Maggie Morley at781/545-7036.

Struggle with Familial AD Leads to Race for Research

In Their Own Words: The Noonan Family HistoryFamilyCorner


In 1967, with our mother Julie’s diagnosis of Alzheimer’sdisease, came the answer to much confusion in our lives.Julie and her identical twin, Agnes, were born in 1924 in

Agawam, Massachusetts. Julie married her high school sweet-heart and settled down to start a family in Stoughton, Mass.The first of Julie’s ten children was born in 1942. In the early1960s, our mother started showing signs that her personalitywas changing. Once a woman who could manage with joy allthe duties of a busy home—with several older children andthree under the age of five—she was now very tearful, confusedand depressed. Our father was the first to notice these subtlechanges.

In the years just before her diagnosis, our mom had notice-ably progressed to forgetting her responsibilities as a home-maker, wife and mother. This affected allthe children in many different ways, butthe common thread for all of us was theconfusion that engulfed our lives.Imagine also the adolescent who isashamed of his mother’s inability to fulfillher responsibilities, or the toddler simplywondering where dinner is. We had noidea why she often forgot to cook dinner,lost our father’s paycheck, forgot to pickone of us up at school. After years of men-tal health diagnoses and treatments,everything but Alzheimer’s was eliminat-ed. At the age of 44, Julia Tatro Noonanwas diagnosed with the disease.

When Mom died in 1978, after years ina nursing home, we thought our strugglewith the disease was finally over. But thenher twin, Agnes, also developedAlzheimer’s, and died from its complica-tions in the late 1980s.

Our lives seemed normal in the ensu-ing years, some of us already starting ourown families. We thought that with Mom’sand Agnes’s deaths we had left the nightmare of Alzheimer’sbehind us. But in 1993 the disease started to plague our familyagain. Our sister, Fran, started to show signs, and we started liv-ing this hell all over again when we realized the disease wasback, having never really left.

The familiar and haunting, empty look in Fran’s eyes as wetalked with her reminded each of us of the same vacant starewe used to receive from our mother as children. And withFran’s diagnosis came the realization that each of us is at greatrisk for this disease, with a 50 percent chance of contracting it.Already two of our siblings have been diagnosed with earlyonset Alzheimer’s, and two more are showing symptoms.

As a family, we decided to band together to fight this disease.We have children and grandchildren who have inherited our

genes. Will their lives be challenged with this mind erasing dis-ease? We have spoken publicly at colleges and nursing homes,at seminars and on national television trying to put a face onthe disease. Fran has testified before Congress about the devas-tating emotional and financial effects on her and her family.We are working with some of the top researchers in the world,based in Boston. We have established an all-volunteer, nonprof-it organization, Memory Ride Inc., which produces a fundrais-ing bike ride from which all proceeds go to research throughthe National Alzheimer’s Association.

As tragic as this disease has become to our family, we try tosee it as we look at all of life: Is the jar half full or half empty?We say half full! And we will continue to put a name and faceto Alzheimer’s disease. b

The Noonans (and fellow riders) are coming! Memory Ride ‘99 arrives in Bostonen route to the State House.

This article is takenfrom the Web site of the remarkableNoonan family, whichreaders can visit at www.memoryride.com.It helps explain theyearly bike ride fromthe Berkshires toBoston that the familyhas organized in eachof the last three years,raising $81,000 for theAlzheimer’s Associationfor research. Thisspring, the family’s dra-matic struggle withearly onset Alzheimer’swas the topic of a three-part series on the WLVIChannel 56 Ten O’clockNews. The final episodealso offered viewers theopportunity for an on-line chat at the Channel56 Web site with theNoonans and ourChapter’s vice-chair, Dr.Sanford Auerbach ofUniversity Hospital.

Memory RideWEEKEND OF AUGUST 26-27

Join us for this year’s challenging, two day Berkshires toBoston year 2000 “Memory Ride” to benefit Alzheimerresearch. Produced by the Noonan family’s Memory Ride, Inc.in cooperation with the Alzheimer’s Association, MassachusettsChapter. Riders are fully supported as they cover a 165 milecourse over Massachusetts’ beautiful backroads. Over the pastthree years, this event has raised $81,000, and we anticipaterecord results in August. For more information, call our chap-ter development office at 617/868-6718. visit our Web site(under Special Events), or connect to the Memory Ride, Inc.Website directly at www.memoryride.org. b


Support Group listing continued from back cover SupportGroups

ReuniónMensual deFamilias

Para familiares quecuiden a seres queridoscon pérdida de memoria,Alzheimer’s u otra demen-cia, las reuniones se efec-tuarán los primeros miér-coles de cada mes.

Desde las 12:30 hasta la1:30 de la tarde. Sera enFarnsworth House, 90South St., Jamaica Plain.Para mas información lla-men a Conchita Rodriguezal 617/868-8599.

Lowell: Daphne Dumont 978/458-8773Ludlow: Barbara Messler 413/589-7581Lynn: Harriet Udoff 978/937-5576

Lisa Mercurio 781/596-2992Malden: Jolyn Eck 781/391-0800 Marlboro: Sean Caulfield 508/481-9898

Joyce Henderson 508/485-4040Medford: Douglas Lloyd 781/324-5759Mendon: Marlene Fregeau 508/473-0862Melrose: Valeri McLernon 781/979-3755Merrimac: Patricia Lavoie 978/803-3296Methuen: Donna Koski 978/682-3582Middleboro: Robella Coates 508/946-2490Milford: Marlene Fregeau 508/473-0862Millbury: Pat Clark 508/793-0088Natick: Jan Chiampa 508/655-1000 x21

Judy Sabol 508/650-9003or Susan Scheib 508/653-3081Lois Pecora 508/655-5000 x3543

New Bedford: Judith Wilde 508/997-9396Jenny Nelia 508/998-7807

Newburyport:Patricia Lavoie 978/803-3296 or 465-5361 x25

Newton: Kelly McCutcheon 617/630-2743North Adams: Beth Hinkley 413/664-4536North Easton: Marsha Shalek 508/238-7053Norwood: Victoria Vandalupe 781/762-7700Palmer: Carol Coiz 413/283-8361Peabody: Linda Smith 978/531-2254 x137Pittsfield: Beth Cerow 413/445-2300

Robert Hamilton 413/499-0524Beth Hinkley 413/499-1992Ann Maynard 413-442-4978

Plymouth: Evelyn Haight 508/746-7016Quincy: Kathy Prince 617/471-5712Reading: Anne Marie Bourque 781/944-1132

or Marie Ammer 781/942-9056Revere: Bill Nadler 617/284-2872Rockland: Laureen Walsh 978/878-0095Saugus: Shelly Peacock 781/233-8123Scituate: Carolyn Housman 781/837-1513Somerville: Sara Demetry 617/868-6323Somerset: Bernadette Mackin

or John Rogers 508/679-2240Southbridge: Roger LaMontagne 508/765-9771

Susan Klesczka 508/248-7344South Lancaster: Harriet Klayman 978/368-6414Springfield: Ellen Nepomuceno 413/781-5070Stoughton: Patty Webster 781/344-7300

Sandy Putney 781/821-4990

Christine Bonfiglio 781/297-8211Carol McLaughlin 781/230-2100

Taunton: Barbara Richards 508/823-4493Tewksbury: Elaine St. Cyr 978/657-0800Turners Falls: Molly Chambers 413/773-5555Wakefield: Lynn Zaloga 781/224-2800Ware: Stasia Wozniak 413/967-2245

or Heather Jackson 413/867-7716Wareham: Carolyn Cardoza 508/758-2173 or 508/991-5015Watertown: Ruth Gordon 617/491-1823Wayland: Candace Steingisser 508/358-3000Webster: Carolyn Racicot 508/949-3598Wellesley: Amy Beck 781/237-6400

Cathy Buckley 781/431-5337Westboro: Julie Palmieri 508/836-4354 x706Westfield: Christy Beaulieu 413/568-2341

Ellen Nepomuceno 413/781-5070Weston: Shirley Earle 781/893-0154Westwood: Peter Byron 781/326-5652Weymouth: Kerry O’Malley 781/337-3121

Marsha Frankel 781/340-9100Williamstown: Fredrica Sloan 413/458-8127Winchester: Valerie Gramolini 978/897-7455Woburn: Jennifer Jaroch 781/932-0350Worcester: Dianne Protano 508/756-7176

Mary Poulin 508/852-0600Faith Bandama 508/791-5543

Worthington/Cummington:Lucille Temple or Sandra Epperly 413/238-5584

Specialized GroupsCaregivers of Mentally Retarded Adults with AD

Linda Bimbo 781/324-4303 People with Early Stage Alzheimer’s and Their Caregivers

Cambridge: Elaine Silverio 508/429-1577Danvers: Carol Owen or D'arcy Adams 978/774-4x3064Natick: (under age 65) Joanne Koenig-Coste 508/879-5338or Lois Pecora 508/655-5000Weymouth: Julie Barcelo 781/340-9100

Families of VA Patients with AD Bedford: Jennifer Hill 781/687-2701

Spanish-language Group/En Español Boston: Conchita Rodriguez 617/868-8599Springfield: Lydia Serrano 413/781-8800

Spouses’ Group Brockton: Geralann DiDomenico 508/427-6099

Youths and TeensNorth Chelmsford: Susan Antkowiak 978/934-0000

Younger Adult Caregivers:Erin Whalen 617/868-6718


SupportGroupsSupport groups provide aforum for family membersand friends of people withAlzheimer’s disease toshare feelings, concernsand information, and tosupport each other in cop-ing with the effects ofAlzheimer’s disease or oneof the related disorders.Each group varies in sizeand frequency of meeting.Please call the supportgroup leaders listed on thispage for furtherinformation.

For information onsupport groups on CapeCod, call the Alzheimer’sAssociation of Cape Codand the Islands at508/775-5656.

These groups are opento the public. In addition,many day programs andnursing homes offergroups open to the familiesof their patients. Supportgroups are independentlyrun and this listing shouldnot be construed as a rec-ommendation.

Acton: Joanne Chaulk 978/486-0590or Jean Fleming 978/264-9643

Agawam: Judy Pothu 413-821-9911Amesbury: Patricia Lavoie 978/803-3296Amherst: Shirley Crites 413/548-6800Andover: Rachel Zalvan 978/623-8321Arlington: Laurie August 781/316-3400Athol: Wanda Landry 978/249-3717Attleboro: Annie Sirois or Patsy Daniels 508/222-6655

or Ginny McDermott 508/222-0118 x2122Sharon Leary 978/226-6150

Ayer: Patty Arakelian 978/772-1704Belmont: Debra Katt-Lloyd 617/855-3600Boston:

Brighton, Mary Ellen Peters 617/789-2618Dorchester, Donna Allen or Eileen Gleason 617/474-1192Downtown, Stephanie Brett 617/726-2639 or Maureen Tardelli 617/391-7878Hyde Park, Carol Westheimer or Wendy Marks 781 /455-8588Jamaica Plain, Denise Reichenbacher 617/983-2300Roslindale, Lisa Talayco 617/363-2329West Roxbury, Susan O’Connell or Stephanie Brinkhaus 617/325-1230

Bourne: Judy Anthony 800/870-1800Braintree: Ailsa LaCoste 781/843-1860 x629 Bridgewater: Jean Giguere 508/697-4368Brockton: Kerrianne Hanley 508/427-6099Brookline: Elizabeth Kirsten 617/232-0291

or Howard Block 781/455-8588Burlington: Sue Mike 781/272-2857Cambridge: Alice McCarter 617/547-3543 x22Chelmsford: Pat Keene 978/251-8491

Sandy Simon 978/250-6122Chicopee: Elaine Mitchell 413/592-7738

Judy Pothul 413/821-9911Clinton: Laura Beckman-Devik 978/365-7376Concord: Carol Symonds 781/863-2376

or Nancy Crowley 978/371-3400Danvers: Lois Stern 978/750-4540

D’arcy Adams 978/774-4400 x3064Jeanne Parent 978/777-5717

Duxbury: Nancy Lee Strowasseror Sandi Wright 781/585-2397

East Longmeadow:Ellen Nepomuceno 413/781-5070

Easton: Carol McLaughlin 508/230-2100Fairhaven: Sharon Jenson 508/997-3193Fall River: Nancy Reed 508/679-0011

Paulette Masse 508/379-9700 or Judy Elste 508/675-2101

Fitchburg: Alice Murphy or Joanne Harris 978/343-5368Ellen Sparrow 978/632-1230

Foxboro: Valerie McKenney 508/543-7336Framingham: Deborah Young 508/879-8000

Jayne Goldman 508/788-6050Gloucester: Janett Lavender or Mary Spittle 978/281-1750Great Barrington: Thoram Kelly 413/528-2650Hadley: Claudia Benoit 413/584-5057Haverhill: John Freeman 978/346-4743

or Nancy Savarese 978/683-2771Fran Eisenman or Pam McCallum 978/469-0169

Hingham: Jo Ann Mitchell 781/749-5417 Eleanor Blair 781/749-4774

Holliston: Lynette Dunn-Nastasi 508/429-3568Hopedale: Charlene Machnik 508/473-2992Hopkinton: Pat McKinney 508/435-0222Kingston: 781/585-4100Lee: Jennifer Pilcher 413/243-4747Leicester: Eva Dawson 508/987-8056

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Support Group listing continues on inside cover

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