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Volume 20, Number 3Summer 2002

36 Cameron AvenueCambridge, MA 02140

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

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

well Area Office: 978/937-5576stern MA Office: 413/787-1113

En español: 617/868-8599

Mark Your Calendars Now!

Laura’s Story: Meeting the Challenges of Long-Distance CaregivingBy Emily B. Saltz, LICSW

INSIDEFrom the Exec. Director.......2Legal Issues in AD ................3Long-Distance Caregiving .4,5Advocacy Initiatives...........6,7Education Calendar ..........8,9African-American Forum...10Development .................12,13Western MA.........................14Support Group Listings..15,16

Helpline

24/7 Coverage!

See page 13

Laura’s Dilemma

Laura Simon has not slept well for the past six months. Every night she liesawake, worrying about her mother, Sylvia, who lives alone in a small apartment400 miles away.

Did Sylvia take her medications today? Did she remember her appointment with Dr.Crane? Did she get out today to buy groceries? Laura called her mother twice today, butlately, Sylvia seems confused on the phone. And Laura knows that Sylvia’s failing eye-sight and hearing loss further serve to insulate her from others.

Laura has talked to her mother about getting more help at home, and once broached the subjectof having Sylvia come to live with her. But Sylvia insists that she does not need more help, wants toremain at home, and never wants to be a burden to her daughter.

Enough. Laura awakens one morning after a fitful sleep and phones her mother. No answer.After trying again with the same result, she starts to worry. After several repeated attempts to phone,she tracks down the building manager. He opens Sylvia’s door and finds her lying unconscious onthe bathroom floor, after what looks like a fall out of the bathtub.

The building manager calls an ambulance, and Sylvia is transported to the hospital. Laura rush-es to the airport and flies out on the next plane, leaving behind a concerned husband, her own wor-ried children, and mounting job responsibilities.

Stepping BackAs Laura’s story poignantly illustrates, the challenges of long-distance caregiving can be frustrat-

ing, unpredictable, and overwhelming. Could Laura have prevented what happened to her mother?Could she have done more to get her mother to accept help? Could she have coerced her mother tocome live with her?

Alzheimer’s Association advocates shared their ambitious legislative agenda with U.S. Rep.Edward Markey (4th from L) of the Massachusetts 7th District at his Washington, DC offices aspart of the National Public Policy Forum in April. The Massachusetts Chapter delegation included(L to R): Nancy Emerson Lombardo, Jim Wessler, Molly Chambers, Bruce Steiner, Jim Anthony,Betsy Peterson, Susan Kelley-Grasso, Kate Doyle, and Fran Lavin. (Photo by Anelique Skoulas)

Mark Your Calendars Now!Tanglewood EncoreSunday, August 11Summer music lovers will beenchanted by virtuoso violinist GilShaham, performing with the BSO.Don’t miss out! See page 14 fordetails.

Annual MeetingTuesday, September 10Our Massachusetts Chapter welcomesyou to this year’s Annual Meeting atthe College of the Holy Cross inWorcester. See page 9 for details.

Memory Walk 2002Saturday, September 21through Sunday,September 29Make a difference in the lives of loved ones and families by taking part! New this year: Elite Feet!See page 9 for details.

CELEBRATING

YE ARS

10continued on page 4

Alzheimer’s Association, Massachusetts Chapter

We are so close to a catastrophe, we are so close to acure.” These were the words of actor and activistDavid Hyde Pierce, testifying before the United

States Congress April 30 at the National Public Policy Forum.Mr. Pierce, who plays the role of Niles Crane on the televi-

sion show Frasier, was referencing the 14 million babyboomers who will develop Alzheimer’s disease over the next45 years.

Dr. Marilyn Albert of Harvard Medical School and Chairof the national Alzheimer’s Association’s Medical and ScientificAdvisory Council (also see page 11) echoed Mr. Pierce’s point inher testimony before Congress. She stated, “If we don’t ade-quately support research, no health care system in the worldwill be able to cope with the ramifications.”

Tidal wave. The potential catastrophe thatDavid Hyde Pierce identified was reinforcedwhen the MA Chapter recently released data onthe increase in prevalence of Alzheimer’s disease(see story, page 7). In the period between the1990 Census and the 2000 Census, the numberof people in Massachusetts with Alzheimer’s dis-ease increased to 140,000, a 17% increase.

Even more frightening, the population groupaged 45 to 54, the vanguard of the babyboomers, grew by 46% during this same period.This means that starting in 20 years, this babyboom population bulge will begin to reach theage of 75, the period of greatest risk forAlzheimer’s disease.

Ticking clock. On April 25 and April 30, Alzheimer’sadvocates rallied at the State House in Boston and the CapitolBuilding in Washington, DC respectively. The message was sim-ilar in each setting: despite the hard times, our governmentmust step forward to support families, caregivers andresearchers—we have run out of time.

At the Alzheimer’s Association’s April 25th LEAD eventrally at the State House, 235 people with Alzheimer’sdisease joined family and professional caregivers to urge law-makers to protect programs and initiatives benefiting peoplewith Alzheimer’s disease and their families. The State Houseprogram featured a panel of individuals representing TheJourney through Alzheimer’s D isease, this year’s theme for theannual event (see story, page 7).

Brandeis professor Dr. Bernard Reisman, who wasrecently diagnosed with Alzheimer’s disease, spoke movinglyabout its impact. “A professor needs to use his head. This situa-tion is something like that of a pitcher whose pitching armgoes out,” he said.

Dr. Reisman continued by praising the hundreds of advo-cates who traveled to our Massachusetts State House to pressour cause. “Coming into this spacious and awesome room isonly overpowered by the people here who are working to

advance this issue,” henoted. “I say thanks toyou on behalf of allthe people across thestate.”

ProfessorReisman, we offer ourown appreciation. Toyou, to the 235 advo-cates jammed intothe State House, tothe 500 Alzheimer’sAssociation pioneers who gathered in Washington to press formore funding for research . . .to all of you, we say THANKS!

Staff notes. We also say goodbye toRichard Fleiss, Associate Director ofDevelopment, who retired from the Alzheimer’sAssociation in mid-May. Dick first joined theAssociation as a volunteer and has worked withthe Association for the past six years.

He has done a terrific job pursuing founda-tion and corporate support, providing staffingassistance to our golf tournament, and workingwith many of our third-party fundraisers. We aredeeply appreciative of Dick’swork and dedication to ourAssociation.

And we say hello toSandra Gavin, who steps in as our newAssociate Director of Development. Sandrahas worked with our Development staff forthe past 18 months. She recently receivedher MBA from Simmons College, and hasspent many years working in marketing andjournalism. We are excited to welcome Sandra to her new rolewith the Alzheimer’s Association.

Finally, we are extremely pleased to wel-come Debra Katt-Lloyd as our GreaterLowell Coordinator/Chapter Support GroupLiaison. She was hired to fill the position pre-viously held by the late Harriet Udoff. Debrabrings extensive experience to theAssociation, most recently from her workwith patients and families for the pastdecade at McLean Hospital MemoryDiagnostic Clinic.

Prior to her work at McLean, Debra was a social worker atthe Community Family adult day program in Medford. She isan experienced support group leader as well as a long-standingmember of the Chapter’s Support Group Committee. Pleasejoin me in warmly welcoming Debra to our staff and to ourLowell Office.

—Jim Wessler

From the Executive Director: Rallying our Troops

Advocates Sound Clarion for State, Federal Legislators

Sandra Gavin(Photo byJoseph Gavin)

Debra Katt-Lloyd (Photo byBrenda Vitale)

Chapter President Jim Wessler warm-ly welcomes a packed house of familyand professional caregivers at theAfrican-American CommunityForum in Dorchester (see story, page10). (Photo by Shannon Downey)

“If we don’tadequately supportresearch, no healthcare system in theworld will be able

to cope with theramifications.”

—Dr. Marilyn Albert

BOARD OF DIRECTORSOfficersSanford Auerbach, MD,Chairman of the Board

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

Donald A. Davidoff, PhDTreasurer/Chair, Finance Committee

Mary Anne Stout, ClerkOther Executive CommitteeMembersPatricia A. Clark, MS, RN, CS,Chair, Education Committee

Donald N. Freedman, JD, Chair, Public Policy Committee

Paulette Masse, MS, LSW, Chair, PatientCare and Family Support Committee

Ruth C. Moy, Chair, AdministrationCommittee

Kathleen D. Salmon-Robinson, MHSA,Chair, Development Committee

Other DirectorsMark Ailinger, NHATheresa ArrudaJoanne ChaulkHon. Carol C. ClevenCharles V. Keane*Robert Margil, CPABarbara MilenskyNancy Fernandez MillsStephen Moses, PhDJoe PareskyHarold B. Schiff, MDDennis J. Selkoe, MDMarcia Simons*F. Marott Sinex, PhD*Stanley Solomont, BSBMarian G. Spencer, RN, MSSumer Verma, MDStaffJames Wessler, MBA, President and ChiefExecutive Officer

Melissa Arsenault, ReceptionistJeannie Banas, Western MA Education Coordinator

Lawrence Barr, Development SpecialistWendryn Case, Administrative Assistant,Western MA

Kathleen Doyle, Director of Public PolicyGerald Flaherty, Director of Special Projects

Heidi Ganss, MS, Director of DevelopmentSandra Gavin, MBA, Associate Directorof Development

Beatrice Goldberg, Safe Return Asst.Rachel Hawk, RN, MSN, Director of Education

Kathryn Hedgepeth, Director of Western Regional Office

Debra Katt-Lloyd, Greater LowellCoordinator/Chapter Support GroupLiaison

Susan Kelley-Grasso, Advocacy Outreach Coordinator

Michael Kincade, Sr., Outreach ManagerGeraldine Lindsey, Office AssistantMarcia McKenzie, Community ServicesCoordinator, Western MA

Anna Milosavljevic, Office AssistantBetty Jo Prins, Director of Finance andAdministration

Paul Raia, PhD, Director of Patient Careand Family Support

Conchita Rodriguez, Hispanic Outreach Coordinator

Jeanette Rosa-Brady, Media SpecialistGinny Sinkoski, Regional Helpline Coord.Donna Smart Gorham, Office ManagerBrenda Vitale, MSW, MIS CoordinatorSheila Watnick, Associate Director ofDevelopment/Special Events Manager

Erin Whalen, Helpline CoordinatorEditorial BoardRachel Hawk, Chair; Catherine

Votaw, MS, RN, Editor; Gerald Flaherty; Paul Raia, PhD

*Emeritus© 2002 Alzheimer’s Association,

Massachusetts Chapter, Inc.Brian K. Johnson, Design ConsultantPrinted by Fidelity Press

By Cheryl J. Dunn, J.D.

When the time comes for long-term care, most eldersprefer to remain in their present location, even if stay-ing put means living at a distance from their care-

givers. Although the distance factor can create many legal andfinancial pitfalls, you and your elder can take certain steps toavoid them.

When care is being pro-vided on a long-distancebasis, the elder shouldestablish a current estateplan that is recognized inthe elder’s state of resi-dence. Generally speaking,the estate plan includes aWill as well as documentsthat protect the elder in theevent that he or shebecomes incapacitated.

Variations.Remember that the lawvaries from state to state;planning that may beappropriate in your statemay not be appropriate inthe elder’s state. To thisend, it may be best to hirean elder law attorneypracticing in the elder’sstate. In this way, you canbe sure that the advice youand the elder receive willpertain to the law of thatstate, and that any neces-sary state-specific provi-sions will be incorporatedinto the estate plan docu-ments.

The most commonlegal issue confronting caregivers is lack of authority tohandle financial and medical decisions when the elderbecomes incapacitated. With the proper documents in place,this authority can be granted to the person the elder chooses.Thus, family members should discuss with the elder the need tonominate someone to handle financial and medical matterswhile the elder can still express his or her wishes.

In Massachusetts, the elder would execute (1) a durablepower of attorney relative to financial decisions; and (2) ahealth care proxy relative to health care decisions. In eachdocument, the elder names someone to handle his or her

financial and health care decisions when the elder no longercan.

Protection. Together, a durable power of attorney andhealth care proxy protect the elder from guardianship, which isthe time-intensive, emotional, expensive, and very publicprocess of having a decision maker appointed for the elder bythe court. With this in mind, if there is a possibility that the

elder may ultimately move tothe caregiver’s state, it wouldbe wise to consult with anattorney in each state whenthe documents are beingdrafted to ensure that theywould be valid in either state.Otherwise, it is possible thatthe elder could lose the pro-tection of the documents,especially if the elder movesafter losing his or her capaci-ty to execute new documents.

Financing long-term carealso causes many caregiversand elders to falter. Manytimes, the elder and familyhope that public benefits(i.e., Medicaid) will pay forhis or her long term care. Infact, each state is differentwith regard to obtainingapproval, and vast differencesbetween states are likely toexist with regard to variousissues, including asset limitsand the effect of gifts.

Proper planning canensure that the elder receivesbenefits sooner rather thanlater. Furthermore, there aredifferences in each state’sestate recovery efforts,

which are the state’s efforts to recover benefits paid for carefrom the estate of a recipient who has passed away. Here, properplanning can minimize the exposure of the elder’s estate torecovery efforts.

Even though long-distance caregiving is a legal minefield, itis possible to minimize problems by addressing issues beforethey arise. In this regard, long-distance caregivers shouldactively seek information and seriously consider working withan elder law professional in their elder’s geographical area toaid them in avoiding the pitfalls outlined. b

Proper planning canensure that the elder

receives benefits sooner rather

than later.


PatientCare and

FamilySupport

Cheryl J. Dunn, J.D. is aprincipal with the lawfirm of Bacon & Wilson,P.C. in Springfield, MA.She is a member of theNational Association ofElder Law Attorneys(NAELA) and theAlzheimer’s Associa-tion, Western RegionLeadership Committee.

The most commonlegal issueconfrontingcaregivers is lack ofauthority to handlefinancial andmedical decisionswhen the elderbecomesincapacitated. With the properdocuments inplace, thisauthority can begranted to theperson the elderchooses.

When Mom and Dad Won’t Move: Avoiding the Legal and Financial Pitfalls of Long-Distance Caregiving

Patient Careand FamilySupport


We live in an increasingly mobile society, in which familymembers live further and further apart from each other. A 1997survey conducted by the National Council on Aging on long-distance caregiving found that nearly 7 million Americans pro-vide or manage care for a relative or friend aged 55 or olderwho lives at least one hour away. Caring for an elder is rootedin our oldest traditions. It is a difficult but worthwhile task,made harder by our social mobility.

Feelings. It is common to feel overwhelmed, guilty, andeven angry when you live far from an elderly relative whorequires support. You may be commuting back and forth, orspending hours on the phone with doctors, nurses, or other ser-vice providers.

In addition, you may feel trapped between the needs of yourown family and your elderly relative. You may feel pressured atwork as you spend time on the job trying to resolve crises fromafar. And you may feel especially frustrated that, despite yourbest efforts, your relative ignores or resists all your good adviceand suggestions.

Understanding the SolutionIt may be reassuring to learn about several strategies to

make long-distance caregiving more manageable. First, planahead. Assess the needs of your relative and take action now,not later when a crisis is underway. Second, be frank. Talkingopenly with your elderly relative will alleviate anxiety that youare “taking over.”

Third, enlist support from others. Asking for help fromother family members, even when you think they are notinvolved, may yield surprising results. Finally, accept yourown limitations. Caring for an elder involves balancing manysets of competing needs–those of the elder, your family, andyour own.

It is very difficult indeed to assess an individual’s real needsover the telephone. Plan a visit soon to assess the situation. Inplanning your visit, you should include your relative as muchas possible. Let him or her know you’re concerned, and thatyou want to visit and discuss the situation.

Preparation. Schedule appointments with doctors,lawyers, or other service providers in advance. If your relative iswilling to share sensitive information with you, ask him or herto gather medical, financial, and legal information such ascurrent medications, bank accounts, insurance policies, wills,

and advance directives.

MakingAssessments

Be sure to look for spe-cific signals in assessingyour relative’s needs. Havethere been obvious changesin mental or physical func-tioning?

For exam-ple, is he or shesleeping andeating well?Does your rela-tive appearwithdrawn,anxious, ordepressed? Is heor she strug-gling to manage daily activities like bathing, dressing, shop-ping, or meal preparation? Are there any obvious health orsafety problems? Is the house messy or unclean? Are thereunpaid bills or papers lying about?

While you should certainly listen to what your relative tellsyou about these matters, you should also gather your informa-tion by personal observation—directly but unobtrusively. Anelder experiencing memory loss or dementia is likely to havelimited insight into his or her behavior and needs. Many arealso quite adept at “covering” for their losses, and you shouldbe alert to signals that all is not well beneath the surface.

Professional help. If you cannot travel to your relative,you should consider hiring a professional, such as a GeriatricCare Manager (GCM), to assess the elder’s needs. After visitingwith your relative, the GCM can make recommendations aboutcare plan options and provide ongoing monitoring.

Find out what services and programs are available in yourrelative’s town or city. The Internet is a great place to start, butbeware of information overload. In dealing with social servicebureaucracies, be persistent, take notes on services offered, andget the name of a contact person for future reference.

Also, gather information on informal supports, such asfriends and neighbors that your relative can call in a crisis.Keep a list of phone numbers in a visible place near the elder’stelephone, and keep a copy yourself. If your relative is isolatedand lives alone, consider installing a personal emergencyresponse system in the apartment or home.

Launching Your PlanOnce you locate appropriate services and decide to imple-

ment an action plan, you must remain sensitive to your rela-tive’s view of the situation. He or she may be afraid of acceptingstrangers into the home or nervous about the cost of services.Reassure your relative that your goal is to preserve dignity andautonomy, not to control or take away independence. If neces-sary, ask for help from a person outside the family (friend, doc-tor, or clergy member) who your relative knows and respects.

Relocation. If you remain unsuccessful in stabilizing yourrelative’s living situation despite a well-developed action plan,you will need to decide whether you can continue to shoulderthe burden of long-distance caregiving as your relative’s needsincrease. This may be the best moment to consider relocatingyour relative to a facility near you, or even into your own home.

Long-Distance Caregiving continued from page 1

Family time at a care residence is a joy!(Photo by Debi Riquier)

Two friendsshare a light

moment.(Photo by

Janet Taylor)

Emily B. Saltz, LICSW, isDirector of ElderResources, a privategeriatric care manage-ment firm, in Newtonand Boston.

Check ’Em Out!Resources forLong-DistanceCaregiversAlzheimer’s Association,Massachusetts Chapterwww.alzmass.org

National Association ofProfessional GeriatricCare Managerswww.caremanager.org

U.S. Administrationon Agingwww.aoa.dhhs.gov

Elder Care Locatorwww.eldercare.gov


Patient Careand Family

Support

Elders suffering from memory loss are usually resistant tomoving voluntarily. The desire to remain in familiar surround-ings is understandable; it frequently takes a crisis, such as ahospitalization, to initiate the move.

In deciding whether to bring your relative into your home,there are practical, financial, and emotional issuesto consider. What is the quality of your relationshipwith the elder? Has it been loving and respectful, orstressful and conflicted?

Bigger picture. It’s also important to considerthe impact this move will have on your own family.Is there enough space? How much care does yourrelative need? How will your children or spouse reactto sharing you with another family member? Whatfinancial arrangements can you make with your rel-ative to pay for the costs of care?

For the elder, the move will likely represent adrastic lifestyle change. He or she is leaving behind alifetime of stabilizing memories, social supports,and routines.

PartnershipsWhenever possible, include your relative in the

decision making process, and allow as much controland choice as possible during this transition.Emphasize the positive benefits of the change,such as spending more time with children andgrandchildren.

The logistical details of the actual move can feeloverwhelming for everyone. You can aid in the tran-sition process by doing as much advance planningas possible and by remaining calm. Make a list ofmoving details.

Organizer. Consider hiring a professionalorganizer to assist in cleaning, packing, and orga-nizing. If you are accompanying your relative byplane to his or her new home, consider reservingfirst class seats – they are roomier and you willreceive better in-flight attention.

Your loving compassion is essential to providingthe care our elders need, particularly when they liveat a distance. But, as Laura discovered, compassionalone can be insufficient when the elder’s needsmount or even worse, when a crisis occurs.

Compassion must be mixed with careful thought,planning, and when necessary, professional assis-tance in order to ensure the care you provide orarrange for is effective and rewarding for all. InLaura’s case, her mother’s crisis enabled her to per-suade Sylvia to accept more help at home with dailyactivities—and sparked a frank dialogue betweenthem about the future. b

Book Review: Paving the Way, Gently

Moving a Relative with Memory Loss: A Family Caregiver’s GuideBy Laurie White, M.S.W. and Beth Spencer, M.A., M.S.W. Whisp Publications, Santa Rosa, CA (2000): 50 pages.

Reviewed by Catherine J. Votaw, M.S., R.N.

Home-based or residential care for a frail family member? Many ofus have needed guidance in addressing this excruciatingly delicateand difficult issue.

The rich, pure reflections offered by White and Spencer, educators anddementia care consultants, will help readers weave together their ownindividualized family plans for moving memory-impaired relatives intoresidential care. The authors offer a variety of resources and explore theessential components of planning and orchestrating the move in a clear, empathic style.

Prism examined. No emotional nuance or logistical contingency has been omitted or simplywaved away. For example, the research and decision-making process itself is analyzed in detail; as well aswhen and when not to involve the memory-impaired relative in visits to prospective residences, and whatto say.

The authors also help readers prepare themselves for these exploratory visits, and offer a comprehen-sive checklist of points to investigate, from care planning to costs to staff training. Make sure to visitat mealtime!

Rethinking promises. White and Spencer note that the decision to move or not to move the rela-tive with memory impairment generally falls to the family. They encourage family members to writedown the pros and cons of the proposed move, as a way to clarify each person’s thinking.

A list of reasons why moving is hard—not the least of which is the symbolic value of moving itself—helps identify possible reasons for inner conflict people may feel about moving a relative out of herhome and into residential care. The authors rightly observe that clarifying feelings and achieving asmuch harmony among family members as possible surrounding the decision are important prerequi-sites to a successful move.

Creative ideas. Short boxed case studies throughout the book drawn from the authors’ clinicalpractice offer valuable caregiving tips. A particularly effective example of activity modification issketched out in which a mother in residential care and her daughter work out flexible ways to prepareholiday cards together over a period of several years.

Additional sections on personalizing the loved one’s room, visiting after the move has taken place,forging relationships with staff members, and caring for oneself add depth and valuable information.White and Spencer directly confront feelings to expect on the part of everyone involved throughout themoving process, and offer supportive coping mechanisms.

Snapping the locks shut on my mother’s suitcase the night before her nursing home admission morethan five years ago will remain one of the saddest hours of my life. Reading White and Spencer’s hope-ful, sensitive treatment of the moving process helped to release some of the loneliness and pain sur-rounding that time, and to affirm the difficult decision my family had made.

I recommend this book unequivocally to readers facing similar challenges. b

Catherine J. Votaw, M.S., R.N. is the Massachusetts Chapter’s Editor, a family member, and amedical education and communications specialist.

Caring for an elder is rooted in our oldesttraditions. It is a difficult but worthwhile task,

made harder by our social mobility.

This book is on theChapter’s 2002 Publications List. Call (617) 868-6718 or see our web site at www.alzmass.org forordering information.

Advocacy


By Kate Doyle

Eleven Massachusetts advocates attended the NationalAlzheimer’s Association Public Policy Forum April 26-30 in Washington, DC. The four-day event featured a

wide range of workshops on various public policy topics, leav-ing plenty of time for networking among advocates from chap-ters and agencies in other states.

In addition to meeting with Rep. Markey and his aideAnelique Skoulas, advocates held meetings with CongressmenJohn Oliver and James McGovern. They also met with otherstaff members, including Amy Rosenbaum, Policy Director forU.S. Rep. Martin Meehan; Christine Locke,Legislative Aide to U.S. Rep. Michael Capuano;Mike Capsa, Aide to U.S. Rep. John Tierney;Caroline Powers, Aide to U.S. Rep. StephenLynch; Ann Jablon, Chief of Staff to U.S. Rep.Richard Neal; Joe Racalto, Health Care Aide toCongressman Barney Frank; Dr. David O’NeilWashington, Health Policy Fellow for SenatorEdward M. Kennedy; and Michael Leighs,

Senior Staff Aide toSenator John Kerry. Our Massachusettsadvocates met with the state’s congres-sional delegation to lobby for increasedresearch funding, modernization ofMedicare to include prescription drugcoverage, and continued funding for theSafe Return program. b

Legislative Breakfast AffirmsCommitments By Michael P. Kincade, Sr.

The Boston Alzheimer’s Partnership hosted its sec-ond annual legislative breakfast April 18 for morethan 80 attendees. Partnership Co-Chairs Wee

Lock Ooi and Mary Geary kicked off the morning with abrief history of the Partnership and its accomplishments.

Co-host State Representative Peter Koutoujian offereda warm welcome and shared how Alzheimer’s diseasehad touched him personally. He emphasized the impor-tance of being politically active during this time offinancial shortcomings and budget cuts.

All the other politicians who spoke reiterated theircommitment to improving the lives of families affectedby Alzheimer’s disease. It was clear that the issue ofAlzheimer’s was close to the hearts and minds of allattendees from the political and caregivingcommunities. b

Michael P. Kincade, Sr. is the Chapter’s OutreachManager.

Medicare Changes

Has Medicare coverage changed for people withAlzheimer’s disease? Since the recent New York Timesarticle (March 31, 2002) dealt with this topic, the ques-

tion seems to be on everyone’s mind—and the answer is yes.On September 1, 2001 Medicare contractors were informed

that they can no longer automatically deny claims based solelyon the Alzheimer diagnosis. This change does not guaranteethat all claims for Alzheimer’s patients will be paid. Instead,Medicare contractors are being instructed to review theseclaims based on the beneficiary’s overall medical condition.

Rationale. In other words, Medicare may pay for speech,occupational, and rehabilitation therapies for people withAlzheimer’s, including mental health services. The coverage forAlzheimer’s disease has been clarified to make it more evidenthow Medicare processes claims for patients with Alzheimer’sdisease. Medicare had been denying claims for needed medicalcare because of the incorrect belief that an individual withAlzheimer’s cannot benefit from various interventions.

The set of instructions given to Medicare contractors aboutAlzheimer’s disease reflects the commitment of the Centers forMedicare and Medicaid Services (CMS) to ensure that peoplewith Medicare coverage receive the benefits to which they areentitled under the program. If you have any questions, pleasefeel free to contact the MA Chapter at (617) 868-6718. b

Kate Doyle is the Massachusetts Chapter’s Director ofPublic Policy.

National Public Policy Forum

Chapter President Jim Wessler (L to R) with Margaret Law,Lewis Law, and Nancy Emerson Lombardo against the back-drop of the U.S. Capitol Building in Washington, DC.

Advocate Jim Anthony (Lto R) with Nancy EmersonLombardo, Bruce Steinerand Amy Rosenbaum,Policy Director for U.S.Rep. Martin Meehanshared strategies andobjectives. (Photo by KateDoyle)

Advocate Lewis Law (L to R) withChristine Locke, aide to U.S. Rep.Michael Capuano, and Margaret Law.(Photo by Jim Wessler)

Advocate BetsyPeterson takes abreak from legisla-tive meetings. (Photoby Nancy EmersonLombardo)

U.S. Rep. Edward Markey,a family member, sharesfamily photos with advo-cates in his Washington,DC office. (Photo byAnelique Skoulas)


Advocacy

More than 230 advocates and 50 legis-lators and aides gathered at the StateHouse in Boston April 25 for the

Alzheimer’s Association’s annual LegislativeEducation and Awareness Day (LEAD), co-sponsored by theLegislative Caucus on Older Citizens’ Concerns.

This year’s theme, The Journey through Alzheimer’sDisease, was sensitively and effectively explored through apanel presentation. The panel featured an early-stage patient,Dr. Bernard Reisman, Professor of Contemporary Jewish Studiesat Brandeis University; a family caregiver, Pat Wellington; andprofessional caregivers John Ford, Esq. of Greater Lynn LegalServices; Dan O’Leary, Executive Director of Mystic Valley ElderServices; Anne Marchetta, Executive Director of CommunityFamily, Inc.; and Kate Marshall, Director of Special CareProgram at Concord Park.

Following opening remarks, Chapter Board Chair SanfordAuerbach, MD presented a plaque of appreciation to StateRepresentative Carol Cleven for her exceptional work inpublic policy advocacy, and for her dedication to theAlzheimer’s Association. After the panel presentation, audiencemembers engaged in a lively question-and-answer session,voicing their concerns and determination that their loved onesreceive the best possible care.

Clear voices. In response to these issues, the panel mem-bers emphasized the need for advocates to make their voicesheard, and to push for increased state funding to ensure that

agencies involved can continue to meet the needs of the peoplethey serve. The morning’s events concluded with lobbying visitsby audience members to their individual legislators, urgingthem to support our legislative priorities in this year’s state budget.

The Journey through Alzheimer’s Disease touched uponmany facets of our long term care system, a system that willsoon be overwhelmed unless we take steps to meet the pressingneeds of families impacted by Alzheimer’s disease. I would liketo thank all the panelists and advocates who made the day agreat success! b

—Kate Doyle

LEAD Event Advances Mission

Advocates Lobby to IncreaseAlzheimer’s Awareness

New Report Says 140,000 inMassachusetts Have Alzheimer’s

The Massachusetts Chapter and the ExecutiveOffice of Elder Affairs has released a town-by-town prevalence report showing that the num-

ber of older people in the Commonwealth who arecoping with Alzheimer’s disease has risen to almost140,000, a growth of 17% from 1990 to 2000.

“Alzheimer’s disease and population trends are ona collision course,” Secretary of Elder Affairs LillianGlickman said in a statement accompanying thereport, which was released at the Chapter’s annualLegislative Education and Awareness Day rally April25 at the State House in Boston.

The 2000 U.S. Census, which forms the basis of thereport, shows that the single greatest 10-year popula-tion jump in Massachusetts—46%—occurredamong baby boomers between the ages of 45 and 54.Epidemiologists have warned that without a cure forthe disease, these baby boomers, who represent thelargest generation in American history, will not onlyenjoy a longer life span than any previous generation,but will also experience Alzheimer’s in numbers “which are certain to over-whelm—and potentially bankrupt—an unprepared health care system,”Massachusetts Chapter President Jim Wessler said.

“Especially at a time when programs that serve people with Alzheimer’s arebeing victimized by budget cuts, we must focus attention on these alarmingnumbers and work together to address them,” Wessler said.

For a copy of the report, contact Jeanette Rosa-Brady at (617) 868-6718 orvisit our web site at www.alzmass.org. b

Remarks by the 2002LEAD panelists inspiredthe audience at the StateHouse in Boston. Theyincluded (L to R): KateMarshall, Director of Spe-cial Care Program at Con-cord Park; Anne Marchet-ta, Executive Director ofCommunity Family, Inc.;Dan O’Leary, ExecutiveDirector of Mystic ValleyElder Services; Pat Wel-lington, a family care-giver; early-stage patientDr. Bernard Reisman,Professor of Contempo-rary Jewish Studies atBrandeis University; andAtty. John Ford of GreaterLynn Legal Services.(Photo courtesy of StateHouse News Service)

Especially at atime whenprograms thatserve people withAlzheimer’s arebeing victimizedby budget cuts,we must focusattention onthese alarmingnumbers andwork together toaddress them.

LEAD Panelist Pat Wellington, caregiver for her husband,who has Alzheimer’s disease, shared her observationswith a rapt audience. Here are some of her remarks:

A Family Caregiver’s View

My husband, Mark, 83, has had Alzheimer’s disease foreight years. My friend, Dr. Reisman, thinks the term“caregiver” is too clinical. I agree with him, but by

any name, we are the ones who are there in the disorientedhours of the day and in the confused, wandering hours ofthe night. It is confining, it is heartbreaking, and it isexhausting…

Life with an Alzheimer sufferer is a juggling act with a lotof balls in the air at once. It is like a scavenger hunt withoutclues, as when a much-hunted-for eggbeater suddenly turnsup in the freezer…

The writer, Iris Murdoch, had Alzheimer’s disease. It isironic that in the last line of her final published work, shewrites of a character, “He’s come to a place where there is noroad.” That passage struck me as descriptive of my husband’scondition; as a caregiver, I would add, “where there is noroad map.” b

Train the Trainer Program for DementiaCare ProfessionalsA professional education program designed toteach participants to become trainers withintheir community agencies or facilities. One

or two representatives attend to learn aboutAlzheimer’s disease and dementia,

Habilitation therapy, behavior issues, activi-ties, and more. After the program, the repre-sentatives return to their facilities to teach

other staff members. ✏ b Pre-registrationis required for this full day of training. The charge is $500 for two representatives from anagency. Alzheimer’s Association, Cambridge Office, 36

Cameron Ave., Cambridge. Call Donna Smart-Gorham at (617) 868-6718.September 11, October 9

Take Control of Alzheimer’s Disease: for EarlyStage Patients and their Care PartnersA three-week course for people with early stage Alzheimer’sdisease and their care partners. Participants will learnhow to take control of certain aspects of Alzheimer’s dis-ease and to slow its progression. Contact Donna Smart-Gorham in the Cambridge Office at (617) 868-6718.October 4, 11, and 18 (1-3:00 p.m.)

Activity-Based Alzheimer’s CareA new training program for activity and program pro-fessionals. Topics covered include activity-based care forpersons with AD, assessment and care planning, pro-gram design, quality activities, program evaluation,and teamwork. Alzheimer’s Association, CambridgeOffice, 36 Cameron Ave., Cambridge. For moreinformation, contact Erin Whalen at (617) 868-6718,ext. 213.October 23

Home-Based Care Techniques for FamiliesThis free six-part seminar will teach families a newtherapeutic approach to caregiving. Family care-givers will learn how to work with the person withAlzheimer’s disease in order to take more controlover the often-difficult disease symptoms.

Presented by Dr. Paul Raia. Families must planto attend all six sessions. ✏ There is no

charge for the course, but pre-registrationis required. Call Donna Smart-Gorham inthe Cambridge Office at (617) 868-6718.October 30; November 6, 13, 20,& 27; and December 3 (1-3:00 p.m.)

Family OrientationAn education meeting for family members.Topics include diagnosis, treatment, medica-tions, planning, home management, andmore. Each Family Orientation session isrepeated on a monthly basis. The program is

free of charge. Locations, times, and dates arelisted below:

Cambridge: Held at Cambridge Office ofAlzheimer’s Association, 36 Cameron Ave., Cambridge.

Presented by Dr. Paul Raia. Pre-registration is not necessaryand the program is free of charge.August 15, September 19, October 17 (10:00 a.m.-12:00 p.m.)

Lowell: Held at Alzheimer’s Association, Lowell Area Office, HealthSouth at St.Joseph’s, 220 Pawtucket St., Lowell. Presented by Debra Katt-Lloyd. Pre-registration is not necessary and the programis free of charge. Call (978) 937-5576 for more infor-mation.August 14, September 11, October 9(10:00 a.m.-12:00 p.m.)

Newton: Sponsored by the West SuburbanAlzheimer’s Partnership. Held at Newton SeniorCenter, 345 Walnut St., Newton. Presented by PamelaKunkemueller. Pre-registration is not necessary and theprogram is free of charge.August 14, September 11, October 9 (6:45-8:45 p.m.)

Northampton: Held at VNA and Hospice Alliance, 168 Industrial Ave.,Northampton. ✏ Pre-registration is recommended; call (413) 787-1113. Free ofcharge.August 14, September 11, October 9 (3:30-5:00 p.m.)

Roxbury: Held at Community of Color Outreach, 116 Roxbury St., Roxbury.Presented by Michael Kincade. ✏ Pre-registration is recommended and the pro-gram is free of charge. Please call (617) 868-6718, ext. 202.August 22, September 26, October 24 (6:00-8:00 p.m.)

Springfield: Held at Good Life Center, 1600 E. Columbus Ave., Springfield. ✏Pre-registration is recommended. Please call (413) 787-1113 for details.August 14, September 11, October 9 (3:30-5:00 p.m.)

Wellesley: Sponsored by the West Suburban Alzheimer’s Partnership. Held atWellesley Council on Aging, 219 Washington St., Wellesley. Presented by PeggyMullen. Pre-registration is not necessary and the program is free of charge.August 27, September 24, October 22 (1:30-3:30 p.m.)

Westwood: Sponsored by the West SuburbanAlzheimer’s Partnership. Held at Westwood

Council on Aging, 210 Nahatan St.,Westwood. Presented by Peter Byron.

Pre-registration is not necessary andthe program is free of charge.August 15, September 19, October 17 (1:30-3:30 p.m.)

All meetingsare free of charge unless

marked by b. Times may be subjectto change. Please call the number listed

for each program. ✏ indicates pre-registration is required. If in doubt, call our

Helpline at 617/868-6718. Visit www.alzmass.orgfor up-to-date listing.

Alzheimer’s Education/Event Calend

oDebiuier

Save the Dates

Watch for TheseUpcomingEvents!!!Take Steps to End Alzheimer’s10th Annual Memory WalkSeptember 21-22, 28-29

Details of 9 walks statewide are listed at right! ➨

Alzheimer’s at Tanglewood: An EncoreSunday, August 11

Join us for an afternoon performance of the BostonSymphony Orchestra! Renowned violinist Gil Shaham will bethe featured soloist and Neeme Järvi will conduct the orchestrain the music of Tchaikovsky and Prokofiev.

Guests are invited to picnic on the Tanglewood lawn at noonand then enjoy a scrumptious dessert buffet in the HawthorneTent before proceeding to the Tanglewood Shed for the 2:30 p.m.performance. Tickets are priced at $125 and $75 for the recep-tion and concert, and $50 for the reception only.

Contact Kathryn Hedgepeth at (413) 787-1113, [email protected] or visit the Chapter web site(www.alzmass.org) for ticket information.

Annual MeetingTuesday, September 10

The Annual Meeting of the Massachusetts Chapter of theAlzheimer’s Association will be held during the afternoon at theCollege of the Holy Cross in Worcester. It is free of charge andeveryone is welcome—invitations will be available early inAugust. For more information contact our Cambridge Office at(617) 868-6718, or visit our web site after August 1 atwww.alzmass.org.

12th Annual Professionals Conference,Western Regional OfficeWednesday, November 13Empowering the Patient

8:00 a.m.- 4:00 p.m. Springfield Sheraton, One MonarchPlace, Springfield, MA

Contact Jeannie Banas at (413) 787-1113 or [email protected] for further information.

Coming this Fall: Basic Training for New Support Group Leaders

Free training workshops offered to new and prospective lead-ers of Alzheimer family and patient support groups in ourChapter area.

Contact Debra Katt-Lloyd for further information and datesat (978) 937-5576.

Saturday, September 21Northern Quabbin Valley Walk,Athol/Royalston Middle School, Athol. ContactWanda Landry at (978) 248-6334 [email protected].

Sunday, September 22Greater Boston Walk (main walk),Canal Park at the CambridgeSide Galleria,Cambridge. Contact Sheila Watnick at (617) 868-6718 x208 [email protected].

Central Massachusetts Walk, Worcester Senior Center, Worcester. Contact Tamara Cullen at (508) 791-5543 or [email protected].

Northern Essex Walk, Bradley PalmerState Park, Topsfield. Contact Patricia Lavoieat (978) 777-2700 or [email protected].

Northern Middlesex Walk, BoardingHouse Park, Lowell. Contact Donna Koski at(978) 682-3582 or [email protected].

Southeastern Massachusetts Walk,Heritage State Park Visitors Center, Fall River.Contact Judy Elste at (508) 675-2101 x404 [email protected].

Saturday, September 28Berkshire Walk, Shakespeare & Company,Lenox. Contact Diane Weinstein at (413) 499-1992 or [email protected].

Neponset Valley Walk, Bird MiddleSchool, Walpole. Contact (781) 278-6029 [email protected].

Sunday, September 29Pioneer Valley Walk, Stanley Park,Westfield. Contact Ginny Sinkoski at (413)787-1113 or [email protected].

Take Steps to End Alzheimer’s!Introducing Elite Feet, a special recognitionprogram for walkers raising $1,000 or more!

Goal $650,000See website, www.alzmass.org or e-mail [email protected]

or call (617) 868-6718 x208 for team packet materials or to volunteer at a walk.

CELEBRATING

YEARS

10

Photos by Janet

Taylor

Title Sponsor:

Benefactors:

dar: August, September, October 2002

By Michael P. Kincade, Sr.

Against the backdrop of a bright, sunny morning, the firstannual African-American Community Forum onMemory Loss convened April 5 at the George Washington

Carver Den in Dorchester. Multicultural Outreach Manager andconference host Michael P. Kincade, Sr. welcomed an overflow-ing audience of 200 caregivers and concerned family members.

The first speaker, Rev. Ray Hammond of Bethel AMEChurch, set the tone for the day by describing how his mother’sexperience with AD has affected his family. In his remarks, Rev.Hammond thanked the Alzheimer’s Association for providingsupport and education, and closed with an emotional passagefrom The Velveteen Rabbit.

In this passage from the classic children’s storybook, the SkinHorse character explains to the Velveteen Rabbit what it takes tobecome Real. He confides that the process of becoming Realtakes a long time, during which you become old, and may loseyour hair and some of your parts, but once you have becomeReal it is all worth it.

Reverend Hammond utilized this passage to illustrate howour loved ones living with Alzheimer’s disease grow old andfrail, but we love and care for them, for they will always be Real.

The next speaker, Dr. Pamela Sheridan, a researcher atBeth Israel Hospital, discussed the differences between normalmemory loss and AD, bringing a sense of humor to the subject.As she shared stories and insights about past patients and familymembers to help humanize the disease, many audience mem-bers laughed and voiced agreement.

At the end, Dr. Sheridan spent most of her allotted timeanswering questions from the audience. The morningpanel discussion addressed the lack of African-Americansinvolved in research, as well as legal issues many ADpatients and their caregivers encounter.

After a delightful lunch, the afternoon focus turned tocaregivers and their burdens. Dr. Jane Cloutterbuck, a

researcher at the University of Massachusetts, presented herrecently completed study of local African-American caregivers and the burdensthey face.

Some highlights of the study illustratedhow African-American caregivers are able to

get help from their extendedfamilies, as well as the extra-ordinary efforts many make tofind professional services. Thestudy also showed that manyBlack caregivers rearrangedtheir lives to stay home and

provide care before sending a family mem-ber to a residential facility.

Panel. Wrapping up the day was a paneldiscussion of professionals whose familieshad been touched by AD. Shirley Coffey, along-time caregiver, talked about the diffi-

culties she faced findingproper care for hermother, who had diedfrom AD. StateRepresentative Gloria L.Fox, who had participat-ed in an awards ceremo-ny for four local care-givers earlier in theprogram, challenged theaudience to becomemore politically active.

Daphne Jones,Director of Admissionsfor Goddard House, alocal residential facility,addressed the mythsmany African-Americanshave about nursinghomes. She talked abouthow some caregivers believe nursing homes are just placeswhere people go to die, where the level of care is poor andunprofessional.

Myth debunked. Ironically, during her presentation anaudience member stated she was told never to send anyone toGoddard House due to the inferior care they provided. BeforeDaphne could respond, another participant refuted the claim bysharing how her mother was a resident at Goddard House,receiving first-rate care. This interchange formed a perfectexample of how a rumor is formed and spread throughout thecommunity, but in this case was debunked on the spot. bMichael P. Kincade, Sr. is the Chapter’s OutreachManager.

Education


State Rep. Gloria L. Foxlistens to a family care-giver. (All CommunityForum photos by ShannonDowney)

“He was a Real Rabbit atlast, at home with theother rabbits.”

—The Velveteen Rabbit

Text and illustration taken from The Velveteen Rabbit by Margery Williams; illustra-tions by William Nicholson. Courtesy of Doubleday, a division of Random House,Inc., New York City

Panelists Daphne Jones of God-dard House, State Rep. GloriaFox, and caregiver ShirleyCoffey.

Rev. Ray Hammond ofBethel AME Churchinspired the group.

Dr. Pamela Sheridan,Deborah Thomson, andTamara Harding ofBoston UniversityAlzheimer’s DiseaseCenter fielded audiencequestions.

African-American Forum Strikes Harmonious Chord

Chapter OutreachManager Mike Kincadewith Dr. JaneCloutterbuck of U-MassBoston.

Dr. Jane Cloutterbuckpresents her research onAfrican-Americancaregivers.

Conference attendees evaluate the program.

Conference HostMichael P. Kincade,Sr.


Medicineand Science

Chapter Hosts Discussion of Newly Funded Research

Part II: Escaping Alzheimer’s and Other MysteriesBy Gerald Flaherty

Part I of this three-part series appeared in our Spring2002 Newsletter and described the work of Drs. BarbaraShukitt-Hale and David Harper, who were among eightMassachusetts researchers to receive a highly competi-tive grant award from the Alzheimer’s Association in2001.

Drs. Shukitt-Hale, Harper, and the four grantees whosesimilarly outstanding work is detailed below, were hon-ored at a December reception and panel discussion at

the Chapter’s Cambridge Office moderated by Dr. MarilynAlbert, national Chair of the Association’s Medical andScientific Advisory Council. Study descriptions are drawn fromtheir abstracts and comments. In our Fall Newsletter, we willround out the discussion of all eight research studies by high-lighting the work of Drs. Ashley Bush and William Esler, whoseprior commitments prevented their participation on theDecember panel.

“This series helps us keep our readers up-to-date about thetypes of scientific investigations our Association supports,” saidRoberta Rosenberg, Chair of the Chapter’s Medical & ScientificAdvisory Committee, “and strengthens our relationships withleaders in the scientific community.”

Robert D. Moir, Ph.D., of Massachusetts GeneralHospital in Boston, spoke about LRP-Mediated Catabolism ofSecreted and Amyloidogenic APP. A-beta protein is the princi-pal component of amyloid, the insoluble and toxic materialthat accumulates in the brains of people with Alzheimer’s dis-ease. Unraveling the mystery of how and why amyloid accumu-lates in the brain has been the focus of most Alzheimerresearch for the past decade.

Amyloid formation appears to be very sensitive to A-betaconcentration; only modest increases in the amounts of thismolecule are needed to initiate and maintain the diseaseprocess. Most research to date has investigated how A-beta ismade and the factors that can cause or promote the molecule’sover-production. However, recent findings suggest that under-standing the mechanisms involved in A-beta clearance may bejust as important, or indeed more so, for developing effectivetreatment strategies.

Clearance process. Dr. Moir is studying how A-betaclearance may be inhibited by slight elevations in the levels ofcommon brain proteins. An important pathway for A-betaclearance involves a protein called the low-density lipoproteinreceptor related protein (LRP).

Dr. Moir’s research has already shown that at least one LRP-binding protein not involved in A-beta clearance is elevated inthe Alzheimer brain. He is investigating how these LRP-bindingproteins may inhibit A-beta clearance through interaction witheach other and competition for the available LRP binding sites.

Thomas T. Perls, M.D., M.P.H., of Beth IsraelDeaconess Medical Center in Boston, has drawn much atten-

tion for his work on Discovering the Genetic Basis for WhyCentenarians Markedly Delay or Escape Alzheimer’sDisease. According to Dr. Perls, scientists have discovered com-paratively little about genetic factors involved in the more com-mon, late-onset form of Alzheimer’s that occurs randomly. Oneintriguing finding shows that Alzheimer’s rarely strikes cente-narians (people who live to 100). His project attempts to identi-fy genetic variations that enable these individuals to escape ordelay dementia.

Dr. Perls’ research will expand on previous work with 137pairs of brothers or sisters who had achieved the age of 100, inwhich his team found evidence that a region on chromosome 4might be involved in avoiding or delaying Alzheimer’s. Theexpanded project will search for additional Alzheimer-protectiveregions in 280 pairs of centenarian siblings.

Gold standard. In the future, Dr. Perls’ team hopes tofurther expand the project by cataloging up to 10,000 singlesubunit genetic variations on all known genes in centenariansand noncentenarian controls. This extensive analysis may pro-vide a gold standard of genetic characteristics of diseaseresistance, and may eventually lead to discovery of new drugtargets for Alzheimer’s or other disorders.

Carlos A. Saura, Ph.D., of Brigham and Women’sHospital in Boston, received his grant for work on theEvaluation of Presenilins as Antiamyloidogenic Targets inAlzheimer’s Disease through the Characterization of PS1/PS2Conditional Knockout Mice.

A steadily increasing body of research suggests that abnor-mal processing of amyloid precursor protein (APP) is a keyevent in Alzheimer’s disease. During processing, sequentialclipping of APP by two different enzymes produces beta-amy-loid (Ab or A-beta), the protein fragment that aggregates intothe amyloid plaques regarded as one hallmark of Alzheimerabnormality. Steps involved in APP processing and Ab aggrega-tion may offer prime targets for Alzheimer therapies.

Neuropsychologist MarilynS. Albert, Ph.D., Chair ofour national Medical andScientific AdvisoryCouncil, moderated theDecember panel discus-sion at our CambridgeOffice honoringMassachusetts scientistswho received researchgrants in 2001 from theAlzheimer’s Association.Dr. Albert is Professor ofPsychiatry and Neurologyat the Harvard MedicalSchool and directs theHarvard-MahoneyNeuroscience Institute aswell as the GeriatricNeurobehavioral Unit atMassachusetts GeneralHospital. She is a found-ing member and pastBoard Chair of theMassachusetts Chapter.(Photo by Sam Laundon,Natural Light Studios)

(L to R) Dr. Carlos Saura, Dr. Robert Moir, Dr. Thomas Perlsand Dr. Michael Wolfe, part of a group honored at aDecember reception and panel discussion at the CambridgeOffice, received research grants from the Alzheimer’sAssociation in 2001.

continued on page 13

Iris Screening Touches Hearts

More than 70 Association supporters gathered onValentine’s Day in Boston for dinner and the previewscreening of the Miramax film Iris starring Judi

Dench and Kate Winslet. Iris is based on the book Elegy for Irisby John Bayley about his experiences caring for his wife, theacclaimed British writer Iris Murdoch. She had Alzheimer’sdisease and died in 1999.

Actor Jim Broadbent received an Academy Award earlier thisyear for his portrayal of the elder Bayley in the film. Specialthanks to Alzheimer’s care consultant Howard Block for hisinsightful remarks prior to the film screening. b

Development

Graduations,Birthdays,Weddings, Get-WellWishes, Thank-You Greetings,Anniversaries!

Running out of giftideas? Honorsomeone you love!

Do you know people whohave everything? Donate agift to the Alzheimer’sAssociation, MassachusettsChapter to honor thatspecial someone. Your giftwill be put to good usehelping people withAlzheimer’s disease andtheir families inMassachusetts. b


Association supporters including Board member StephenMoses, Ph.D. of the University of Lowell, shown here withTerese Galuszka (front row); and Claude Brenner ofLexington, who attended the screening with Elizabeth Heller(second row), enjoyed the stadium seating at the GeneralCinema Fenway. (Photo by Heidi Ganss)

Night at the Pops com-mittee member DebbieMozes (R) of Needhamand her friend, Sue Lev

(L), enjoyed the pre-screening dinner at

B.B. Wolf’s. (Photo byHeidi Ganss)

In addition to volunteering her time and talents tosing to Alzheimer’s patients in long term care facili-ties, 12-year-old Janelle Guernette of Acushnet put hervoice to work to raise money for the Alzheimer’s Asso-ciation. Janelle’s voice teacher, Sharon Jensen, offeredher students the opportunity to raise money for criti-cal programs and services—the child who raised themost wouldreceive freevoice lessons fora year! Con-gratulations toJanelle andthanks to Sharonfor inspiringphilanthropy inour youth.(Photo bySharon Jensen)

We are for-tunate tohave a cadreof loyal anddedicatedvolunteers,includingArlingtonhigh schoolstudents LizDiamandis(C), an 8thgrader atOttson Mid-dle School in Arlington and third-generation Association vol-unteer; and Nelia Tabares (R), a Somerville High School stu-dent. In addition to serving as volunteers for Memory Walk,Liz and Nelia have volunteered their valuable time duringschool vacations for the past two years to help with adminis-trative responsibilities at the Chapter’s Cambridge Office.

Thanks, also, to Cheryl Meads (L) of North Truro, who servedthe Association as a Development Intern this past spring.Cheryl graduated with honors in May from EmmanuelCollege. The Chapter is appreciative of Cheryl’s outstandingwork as well as her contagious enthusiasm and commit-ment. For information on volunteer opportunities at theAlzheimer’s Association, please call (617) 868-6718(Cambridge Office) or (413) 787-1113 (Springfield Office).(Photo by Heidi Ganss)

Alzheimer’s Association President Jim Wessler (R) andDirector of Development Heidi Ganss (L) recently accepted agenerous gift from the Massachusetts State Elks. Shown herewith Wessler and Ganss are Louis Connolly, State Presidentof the Massachusetts Elks (2nd from R) and his wife, Judie(2nd from L), of Tewksbury. Thanks to Lou, Judie, and themany other members of the Benevolent Society of Elks.(Photo by Dick Fleiss)

Betty Thomson of Danvers, wife of Bob Thomson, who hosted The Victory Garden on PBS for12 years, recently authored the Alzheimer’s Association’s Spring Appeal as a way of reaching outto other families struggling with the challenges associated with Alzheimer’s, and to help raisefunds for critical programs and services. Bob Thomson, who has Alzheimer’s disease, is a residentof a long-term care facility in Massachusetts where Betty visits him every day.

The Alzheimer’s Association is grateful for the many gifts we’ve received inhonor of Bob Thomson, and we thank the entire Thomson family for sharingtheir story with others. For more information on making a gift to the Alzheimer’sAssociation, please contact our Development Office at (617) 868-6718.

By Erin Whalen, Chapter Helpline Coordinator

Coping with Alzheimer’s disease has been characterizedas the 36-hour day, which rings true for many of us.Although we’re glad the day does not contain that

many hours, it does present twenty-four, which is the numberof hours the Helpline will now be open.

Thanks to a collaborative effort with the national office ofthe Alzheimer’s Association, the Helpline will now remain openafter regular office hours and will offer telephone languagetranslation services. By providing round-the-clock servicesseven days per week, the Helpline will enable individuals withAlzheimer’s disease, their caregivers and family members toaccess information, support, and intervention for emergencysituations at any time of day.

Flexibility. The importance of this expansion of serviceswill be realized by anyone who has cared for someone withAlzheimer’s disease. The Helpline will now be able to assistcaregivers with questions about sleep disturbances when theyare actually occurring at 2 a.m. No matter what time of the dayit is, services will be available.

This major Helpline enhancement will further enable theAlzheimer’s Association to meet the needs of a growing popula-tion of people with Alzheimer’s disease. It will allow adult chil-dren who are caregivers to call after their own children have

gone to bed; it will allow caregivers to call in a quiet, privatemoment in the evening; and it will allow working caregiverstime to call from home.

Information and support is now available around the clock.Please call 1-(800)-548-2111 to utilize these services. Help isavailable! b


Development

Athletes CrossFinish Line forAlzheimer’sAssociation

Twenty-six miles,385 yards: that iswhat 10 accom-

plished athletes ran April15 at the 106th BostonMarathon in order to raisemoney for the Alzheimer’sAssociation, MA Chapter.The fundraising efforts ofthese remarkable mara-thoners were as impressiveas their running skills.Donations to our Associa-tion in support of theseathletes has exceeded$25,000!

The many months oftraining for this gruelingevent, often in the face ofnasty winter weather, is amotivational testimony.The Alzheimer’s Associa-tion, Massachusetts Chap-ter would like to express itsgratitude and appreciationto our own outstandingteam:

Alana CullingtonLuke DraheimGreg DwyerKatie FleissJill GanciScott KerryStuart KershnerGreg McGauleyEd NolanHenry Staines

Special thanks toJohn HancockFinancial Servicesfor allowing us toparticipate in thisworld-class event! bGreg McGauley of Harwich and Scott Kerry of Eastham ran

the Boston Marathon in honor of the 140,000 people withAlzheimer’s disease in MA. (Photo by Prudence Kerry)

Dr. Saura’s project focuses on the therapeutic vulnerabilityof proteins called presenilin-1 (PS-1) and presenilin-2 (PS-2),which appear to play a key role in processing APP. Research hasshown that specific variations in the genes that code the prese-nilins cause about 40 percent of familial Alzheimer’s, a rareform of the disorder that tends to strike people in their 40s and50s.

Role of presenilins. Dr. Saura’s team has created a spe-cial strain of genetically engineered mice that produce humanAPP and in which PS-1 and PS-2 are inactivated in adult ani-mals. These mice will provide a living laboratory forexploring whether inactivation of PS-1 and PS-2 affects Notchsignaling (Notch is a protein that influences prenatal celldevelopment) in the adult brain, as well as whether this inacti-vation prevents production of Ab and plaque formation. Theinsights Dr. Saura gains may provide important clues about theusefulness of presenilins as therapeutic targets.

Michael S. Wolfe, M.S., Ph.D., also of Brigham andWomen’s Hospital, spoke about his work In Search ofPresenilinase. Production and deposition of the amyloid-betapeptide is implicated in the etiology of Alzheimer’s disease. Thelast step in the production of the amyloid-beta peptide is a pro-tein-cutting reaction catalyzed by an enzyme (specifically, aprotease) called gamma-secretase.

Gamma-secretase is a complex enzyme composed of multi-ple components, one of which is presenilin, and this protease isconsidered an important therapeutic target for Alzheimer’s dis-ease. In order to activate gamma-secretase, presenilin itselfmust be cut into two pieces, a process carried out by anunknown protease, dubbed presenilinase. Because presenilinaseregulates gamma-secretase activity, this presenilin-cutting pro-tease is likewise central to understanding the biochemicalmechanisms underlying Alzheimer’s disease, and also may bean important therapeutic target.

Molecular scissors. Dr. Wolfe aims to identify presenili-nase using molecules designed to interact with and inhibit thisenzyme. Using a similar strategy, he previously identified prese-nilin as the molecular scissors of the gamma-secretase com-plex. He has designed small molecules that should mimic thesite in presenilin cut by presenilinase—molecules that shouldbe recognized by presenilinase but that should not themselvesbe cut. Presenilinase activity would be blocked by thesemolecules.

With such blocking agents in hand, Dr. Wolfe can thenmodify their structures to create molecular probes for presenili-nase that remain permanently bound to the protease, tagging itfor identification. He is also developing related molecules thatshould be cleaved by presenilinase, allowing simpler means ofmeasuring its activity. b

Gerald Flaherty is the Chapter’s Director of Special Projects.

Medicine & Science: continued from page 11

Education: Breakthrough in Helpline Services!

Technological Advances Streamline Support, Expand Reach

Western MANews

Bravo BroadwayRaises $3,000!

Bravo Broadway, anApril fundraiser with theSpringfield SymphonyOrchestra, raised $3,000for the Chapter’s supportand education programs.One hundred twentyguests enjoyed a pre-con-cert reception and musicby such composers asAndrew Lloyd Webber,Leonard Bernstein, andRichard Rodgers. MercyMedical Center was thePresenting Sponsor andBacon & Wilson Attorneysat Law served as PatronSponsor.

The event alsoacknowledged more than20 years of service andadvocacy by Malfalda“Muffie” Albano. Mrs.Albano, a member of theSilver-Haired Legislators,also volunteers withGreater Springfield SeniorServices, Mass. SeniorAction Council,Springfield SchoolVolunteers, AARP, and theOlder Women’s League.

Special thanks to theplanning committee, espe-cially Co-Chairs CherylDunn and Sheri Iodice, fortheir enthusiasm andmany hours of hardwork. b


The second annual Alzheimer’s at Tanglewood fundraiserwill be held Sunday, August 11, 2002. Guests are invitedto picnic on the grounds and then enjoy a sumptuous

array of desserts in the Hawthorne Tent. The afternoon perfor-mance of the Boston Symphony Orchestra will be led by NeemeJärvi, guest conductor. Renowned violinist Gil Shaham will befeatured in Tchaikovsky’s Violin Concerto.

In a departure from the first event, all tickets forAlzheimer’s at Tanglewood: an Encore are located in TheShed. “This guarantees everyone a seat out of the elements,”said Co-Chair Fredrica Sloan. “Guests may choose to move outto the lawn if the weather is good, but they can still enjoy theconcert if it’s raining or unusually warm.” Tickets also include

a pass for reserved parking near the reception area.Thanks to EPOCH at Melbourne, an assisted living facility

not far from Tanglewood, guests also have an option of park-ing off-site and taking a shuttle bus to the concert. “Some peo-ple don’t want to fight the Lenox traffic. Thanks to DianeWeinstein, EPOCH’s administrator, we are pleased to providecomplimentary bus service to and from the concert,” saidKaren Gold, the event’s other Co-Chair. Anyone interested inbus transportation may call the Western Regional Office at(413) 787-1113.

Tickets may be ordered via e-mail [email protected] or by calling (413) 787-1113.The deadline for ordering tickets is July 7, 2002. b

First Western Regional FamilyConference Draws Raves

More than 50 family caregivers gathered April 18 forthe first Family Conference organized by the WesternRegional Office, Through the Eyes of a Caregiver: a

Family Perspective. The conference was held at the GenesisSpiritual Life Center in Westfield, MA. The morning began witha presentation on healthy caregiving by Gary Davis fromBeverly Healthcare, who encouraged caregiversto put their own emotional safety first.

Workshops. Attendees then split into twogroups. Half heard about local resources andservices from Tom McMullen, Western RegionalCoordinator of the MA Family CaregiverSupport Program, and our very own VirginiaSinkoski, Helpline and Outreach Coordinator inthe Springfield Office. The remaining familiesparticipated in a workshop titled “FamilyDilemma—Placing a Loved One,” led by William Johnson, asocial worker from Geriatric Consulting in Belchertown.

The event ended with a special presentation by Dr. KathyHorvath from the Geriatric Research Education and ClinicalCenter (GRECC) at the E.N. Rogers Memorial VeteransHospital in Bedford, who provided concrete suggestions aboutimproving home safety. The day was truly appreciated by all,

and new contacts and sources of support were established. Weare already looking forward to next year! b

—Jeannie Banas, Education Coordinator

Alzheimer’s at Tanglewood Encore Set for August 11

Gary Davis of BeverlyHealthcare

Tom McMullen of WestMassEldercare

Dr. Kathy Horvath fromGRECC at the BedfordV.A. Hospital.

Family caregivers enjoying aworkshop. (All Family Confer-ence photos by Jeannie Banas)

Honorary Chairperson MuffieAlbano (R) shares a story withCharles Magriel (L) and SharonLiptzin (C). (Photo by KathrynHedgepeth)

Dr. Benjamin Liptzin, Muffie Albano,Bravo Broadway Co-Chair Cheryl Dunn,and Western Regional Office DirectorKathryn Hedgepeth enjoy the pre-concertreception. (Photo by Denise Beaulieu)

Honorary Chair Muffie Albano (R) greetsAryn (L), 4 and Trevor Banas (C), 7, chil-dren of Education Coordinator JeannieBanas and the youngest attendees at BravoBroadway. (Photo by Kathryn Hedgepeth)


Support Groups

Our web site supportgroup leader list atwww.alzmass.org

is also updated more fre-quently. For informationabout support groups onCape Cod or the Islands,call that Chapter at (508)775-5656.

Please call the listedgroup leaders for details.We make every effort tokeep this list up-to-date,but some listings may beincorrect because produc-tion of the Newsletter takesnearly three months, andbecause we are not alwaysnotified of a change. If youhave any problem contact-ing a group leader, pleasecall our Helpline at (617)868-6718.

These support groupsare free and open to thepublic. In addition, manyday programs and long-term care facilities offergroups for families of theirpatients. Support groupsare independently run andthis listing should not beconstrued as a recommen-dation. b

Lynn: Lisa Mercurio 781-596-2992or Mark Hurd 781-581-7197

Malden: Mary Darling 781-324-4999 X216Mansfield: Christine Filocco 508-261-1333

or Deborah SupernantMarlboro: Bonnie Plankey or Jessica Sorgi 508-481-9898

Joyce Henderson 508-485-4040Medford: Douglas Lloyd 781-324-5759

or Sheila Watkus 781-395-5542Mendon: Marlene Fregeau or MaryPat McDavitt 508-473-0862Merrimac: Patricia Lavoie 978-803-3296Methuen: Donna Koski 978-682-3582Middleboro: Robella Coates 508-946-2490

Carol Ann Landreville 508-947-4774Milford: Marlene Fregeau 508-473-0862Millbury: Michelle Stevens 508-793-0088Nahant: Rev. David Dodge 781-581-1202Natick: Judy Sabol 508-650-9003

Lois Pecora 508-655-5000 x3988New Bedford: Jenny Nelia 508-998-7807Newburyport: Patricia Lavoie 978-777-2700Newton: Mara Klein 617-928-0007

Emily Saffer 617-558-6443or Carol Westheimer 781-455-8588

North Adams: Beth Hinkley 413-664-4536Norwood: Mary Beth Whitefield 781-769-4495Peabody: Linda Smith 978-531-2254 x137Pittsfield: Louise Posnick 413-445-2300

Robert Hamilton 413-499-0524Beth Hinkley 413-499-1992

Plymouth: Deborah Feurtado 508-746-7016Quincy: Kathy Prince 617-471-5712

Beverly Moore 617-233-1145Reading: Anne Marie Bourque 781-944-1132

or Marie Ammer 781-942-9059Rockland: Laureen Walsh 978-878-0099Roxbury: Ilene Marsh 617-361-7486

or Michael Kincade 617-868-6718Saugus: Debbie Bennett 781-233-8123Scituate: Marla Kaplan 781-681-1065Somerset: John Rogers 508-679-2240South Hadley: Gerri Bennett 413-532-8098Southbridge: Roger LaMontagne 508-765-9771

Susan Klezcka 508-248-7344Springfield: Ellen Nepomuceno 413-781-5070Stoughton: Denise Conley 781-344-7300

Karen Sprague or Marsha Phillips Young 781-344-7661Tewksbury: Elaine St. Cyr 978-657-0800

Sharon Hooper or Paula Drelick 978-851-3121Turners Falls: Molly Chambers 413-773-5555Wakefield: Lynn Zaloga 781-224-2800Ware: Stasia Wozniak 413-967-2245Wareham: Carolyn Cardoza 508-758-2173 or 508-991-5015Watertown: Ruth Gordon 617-491-1823Webster: Carolyn Racicot 508-949-3598Wellesley: Amy Beck 781-237-6400

Peggy Mullen 508-533-7020West Springfield: Lois Goralski 413-781-1282

Westboro: Julie Palmieri 508-836-4354 x3706Westfield: Ellen Nepomuceno 413-781-5070Weston: Shirley Earle 781-893-0154Westport: Susan Oliveira 508-636-1026Westwood: Peter Byron 781-326-5652Weymouth: Barbara Orlandi 781-337-3121

Denise Moore or Julie Barcelo 781-340-9100Wilbraham: Beth Vettori 413-596-0006Williamstown: Fredrica Sloan 413-458-8127Winchester: Valerie Gramolini 978-897-7455Woburn: Jennifer Jaroch 781-932-0350Worcester: Faith Bandama 508-791-5543

Laurie Googins or Ann Fitman 508-753-4791Allison Leger 508-752-2546Debbie DeRossier 508-754-3800 x126Therese Delongchamp or Martha Danilowicz 508-755-7277

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

Specialized Groups

Adult Child CaregiversWest Roxbury: Susan O’Connell 617-325-1230or Margaret WrightCaregivers of Mentally Retarded Adults with ADKevin Leahy 781-324-4303Families of VA Patients with ADBedford: Jennifer Hill 781-687-2701Interfaith Support GroupFramingham: Malka Young 508-875-3100Springfield: Marcia McKenzie 413-787-1113People under 65 with Early Stage Alzheimer’s and TheirCaregiversCambridge: Elaine Silverio 508-429-1577People with AD and their CaregiversWellesley: Peggy Mullen 508-533-7020People with Early Stage Alzheimer’s and Their CaregiversActon: Arlene Parillo 978-897-2569or Kate Marshall 978-369-4728Amherst: Jeannie Banas 413-787-1113or Wanda LandryChicopee: Beth Hewson 413-592-5199Concord: Kate Marshall 978-369-4728or Joanne Chaulk 978-486-0590Danvers: Carol Owen 978-774-4400 x3064or D’arcy AdamsNatick: Joanne Koenig-Coste 508-879-5338or Lois Pecora 508-655-5000Springfield: Ginny Sinkoski 413-787-1113Westboro: Rosalie Hentz 508-366-9933 x3797or Muriel Baum 508-435-0019Weymouth: Julie Barcelo 781-340-9100Spanish-language Group/En EspanolBoston: Conchita Rodriguez 617-868-8599Spouses’ GroupBrockton: Geralann DiDomenico 508-427-6099Chelmsford: Susan Antkowiak 978-934-0000West Roxbury: Susan O’Connell 617-325-1230or Stephanie WalshYounger Adult CaregiversCambridge: Erin Whalen 617-868-6718

Support Group listing continued from back cover

✉We need yoursupport!We rely on private contri-butions to provide criticalprograms and services forAlzheimer’s patients andtheir families. Please help.We urge you to use theenclosed envelope to makeyour tax-deductible giftand be as generous asyou can.


Abington: Marie Bates 781-871-0200Acton: Joanne Chaulk 978-486-0590

or Jean Fleming 978-264-9643Agawam: Judy Pothul 413-821-9911Amherst: Melissa Rohde 413-548-6800Andover: Rachel Zalvan 978-623-8321Arlington: Laurie August 781-316-3400Athol: Wandra Landry 978-249-3717Attleboro: Mary McCormick 508-222-6655

or Ginny McDermott 508-222-0118 x2122Sharon Leary 978-226-6150Nicole McGurin 508-222-4950

Ayer: Jeannette Coutu or Gary Davis 978-772-1704Belmont: Nava Niv-Vogel 617-484-5501

or Lauren Storck 617-484-0949Beverly: Lorraine Bettencourt 978-927-4227 x23Boston: Barbara Hawley 617-724-0055

or Maureen Tardelli 617-391-7878Bourne: Judy Anthony 508-759-0654Braintree: Denise Hughes 781-848-2714

or Chris TogneriBridgewater: Kathy Hayes 508-697-0929

or Sue Daniels 508-697-4368Brockton: Nancy Bresciani 508-583-2517

Marie Albert, RN 508-587-6556Brookline: Pattie Chase 617-232-8848

or Howard Block 617-277-4289Burlington: Stacey Kohler or Sue Mike 781-744-8114

Ann Cooper 781-270-9008 x202or Nancy Kinton 781-721-0788

Cambridge: Alice McCarter 617-547-3543x22or Mary CostelloTrudy Bauer or Ruth Gordon 617-491-1815

Canton: Susan Sheehan 781-828-7450 x307Chelmsford: Pat Keene 978-251-8491

Susan Antkowiak 978-934-0000Chicopee: Judy Pothul 413-821-9911Concord: Arlene Parillo 978-897-2569

or Kate Marshall 978-369-4728

Danvers: Gwen Kopka 978-750-4540D’arcy Adams 978-774-4400 x3064Jeanne Parent 978-777-5717Gayel Cote 978-762-7625 x14

Dartmouth: Sharon Jensen 508-991-8600Dorchester: Donna Allen 617-825-5000Duxbury: Sandi Wright 781-585-2397East Longmeadow: Ellen Nepomuceno 413-781-5070

Mary Anne Stout 413-525-8150Easthampton: Wendy Perrault 413-527-7737Fall River: Maureen Hebert 508-679-0011

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

Fitchburg: Alice Murphy or Joanne Harris 978-343-5368Judy Wilson 978-632-1230

Foxboro: Diane Caldwell 508-337-8419Framingham: Susan Scheib 508-879-8000

or Catherine ZiesmerGardner: Judy Wilson 978-632-1230

Ray Cormier 978-632-5477Gloucester: Maureen Powers 978-281-1750Great Barrington: Kelly Thorne 413-528-2650Hadley: Linda Wallace or Jennifer Read 413-584-5057Haverhill: John Freeman 978-346-4743

or Nancy Savarese 978-683-2771Hingham: Jo Ann Mitchell 781-749-5417

Eleanor Blair 781-749-4774Holden: Naomi Sohlman 508-829-0270Hyde Park: Wendy Marks 781-449-5368Jamaica Plain: Tara Fleming 617-983-2300

or Susan Kelley-Grasso 617-868-6718Kingston: Holli Spooner 781-585-4100Lee: Dolores Thimot 413-243-4747Leicester: Eva Dawson 508-987-8056Littleton: Gail Mallardo 978-486-3512Longmeadow: Sheila King 413-567-6212Lowell: Scott Souci or Margaret Swanson 978-459-0546Ludlow: Barbara Messler 413-589-7581

Support Groups

Support groups pro-vide a forum forfamily members

and friends of people withAlzheimer’s disease oranother dementing illness.Groups also exist for peo-ple who have early-stageAlzheimer’s disease—referto Specialized Groupsat the end of the alphabet-ized list of communities.

At these groups, peoplelearn about the disease,share concerns and infor-mation, and support eachother in coping with theeffects of Alzheimer’s dis-ease or one of the relateddisorders. Groups may varyin size, frequency of meet-ing, and leadership stylebut are often termed life-saving by their members.

continued on page 15

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