From the Executive Director Letter Writing: a lost Art As Therapy

INSIDE

From the Executive Director .......................2

Letter Writing: A Lost Art As Therapy...........3

Development Highlights..............................4

Education Report.........................................6

Advocacy Update ..........................................8

Special Report: Directory 

of Research Opportunities 

in Massachusetts

.............................11

Search and Rescue: Unsung Heroes .........16

Important Dates To Remember ................20

The Remarkable Noonans ........................22

Over 140 Support Group Listings..............24

I

n celebration of its 20th year anniversary, the Alzheimer’s

Association’s Massachusetts Chapter hosted a jubilant Night at the

Pops May 11 at Boston Symphony Hall. Keith Lockhart mas-

terfully conducted a lively collection

from “Best of Broadway.”

Coincidentally, the celebration fell on the

80th birthday of our Pops event chair Stanley

Solomont (shown above), and represented a

special gift in return for all of his and the

committee’s hard work. Honorary Pops event

chair Kasey Kaufman of WBZ TV Channel 4

and presenting sponsor Praecis Pharmaceu-

ticals contributed enormously to the evening’s

success and to a most worthwhile cause. Close

to 300 friends of the Association enjoyed our

“Night at the Pops,” which included a post-

event dessert reception. Together, they helped

raise over $60,000 for the critical programs and services our Massachusetts

Chapter provides to people with Alzheimer’s disease and their families. With such

a positive experience in organizing our first Pops event—there was a substantial

unfulfilled demand for seats—we look forward to providing another delightful

evening of music and fun for an even larger group next year. 

b

“Night at the Pops” at Boston

Symphony Hall Raises $60,000

Malcolm Geftner, president

and 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 Tournament

MONDAY, AUGUST 7

At the Woodland Golf Club in

Newton, with Honorary Chair

and Red Sox pitching legend

Dennis Eckersley. See page 20

for details.

Memory Walk 2000

SUNDAY, SEPTEMBER 24

Join us, along with

Congressman Ed Markey,

our Memory Walk 2000

Honorary Chair, for the Massachusetts

Chapter’s 8th annual Walk. See page 20

for details.

Conferencia en Español

SABADO, OCTUBRE 7

En el barrio de Jamaica Plain de la ciudad

de Boston. Los doctores Pascual Leone y

Antonia Coppin explicarán la diferencia entre

envejecimiento normal y la enfermedad de

Alzheimer asi como los tratamientos

actuales. Miré al pagino 2 y 20 para más.

M

assa

ch

usetts Chapter

Volume 18, Numbers 1 & 2

Spring/Summer 2000

36 Cameron Avenue

Cambridge, MA 02140

Tel: [phone]

Fax: [phone]

Net: 

www.alzmass.org

Outside 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

BOARD OF DIRECTORS

Officers

Nina M. Silverman, PhD,

Chairman of the Board

Sanford Auerbach, MD Vice Chair/

Chair, Administration

Donald A. Davidoff, PhD,

Treasurer/Chair, Finance

Joan H. Johnson, Clerk

Other Executive 

Committee Members

Judith Antonangeli, MSN and

Ann C. Turner, RN, BSN, MSW

Co-chairs, Patient Care 

and Family Support

Kathleen D. Salmon-Robinson, MHSA

Chair, Development and Public

Affairs

Roberta Rosenberg, MEd, Chair,

Med/Sci Advisory Committee

Pamela L. Sheridan, MD

Chair, Education

Other Directors

Mark Ailinger, NHA,

Richard P. Blinn

Patricia A. Clark, MS, RN, CS

Hon. Carol C. Cleven

Donald N. Freedman, JD

David Hayes, PhD

Nancy Stone Hindlian, MS

Charles V. Keane*

Sue Levkoff, ScD

Robert Margil, CPA

Maria Maskaluk, RN, BSN

Paulette Masse, MS, LSW

Rev. Thomas W.O. Mayers, MEd

Stephen Moses, PhD

Ruth C. Moy

Susan McDonough, MPA

Harold B. Schiff, MD

Dennis J. Selkoe, MD

Marcia Simons

F. Marott Sinex, PhD*

Stanley Solomont

Marian G. Spencer, RN, MS 

Mary Ann Stout

Jean Tyler

Sumer Verma, MD

Rosalie S. Wolf, PhD

Staff

James Wessler, MBA, Executive Director

Nikki Coleman, Receptionist

Vikki Corliss, Media Consultant

Gerald Flaherty, 

Director of Special Projects

Heidi Ganss, MS,

Director of Development

Richard Fleiss, MBA,

Development Officer

Beatrice Goldberg, Safe Return Asst.

Rachel Hawk, RN, MSN

Director of Education

Kathryn Hedgepeth, Director of Western

Regional Office

Susan Kelly-Grasso, Advocacy Outreach

Coordinator

Michael Kincade, Sr., BS, CE, Outreach

Manager

Michelle LaPoint, Development

Specialist

Jerry Levy, Bookkeeper

Geraldine Lindsey, Office Assistant

Anna Milosavljevic, Office Assistant

Jeff Partyka, MCP, MIS Coordinator

Betty Jo Prins, Director of Finance and

Administration

Paul Raia, PhD, Director of Patient

Care and Family Support

Conchita Rodriguez,

Hispanic Outreach Coordinator

Ginny Sinkoski, Regional Helpline

Coordinator

Donna Smart Gorham,

Office Manager

Deborah Thomson, JD,

Director of Public Policy

Harriet Udoff, MSE,

Greater Lowell Coordinator

Sheila Watnick, Associate

Director of Development/Special

Events Manager

Erin Whalen, Helpline Coordinator

Editorial Board

Nancy Stone Hindlian, Chair

Gerald Flaherty, Editor

Rachel Hawk

Joanne Koenig-Coste, MEd

*Emeritus

©2000 Alzheimer’s Association,

Massachusetts Chapter, Inc. 

Brian K. Johnson, design consultant.

Printed by Fidelity Press.

A

t the same time the Commonwealth’s treasury holds its

greatest surplus in more than a decade, our long term

care system descends further into chaos. As officials con-

tinue to debate whether the state should invest in its health care

infrastructure, our loved ones suffer, or die.

The statistics are sobering. Seventeen percent of

Massachusetts’ nursing homes are in bankruptcy. More than

ten percent of direct care nursing jobs are unfilled because

these positions don’t pay enough to attract qualified appli-

cants. Over the past year, approximately 25 home health

providers have folded and are no longer serving elderly clients.

A growing number of adult day health providers are shutting

their doors. And although many assisted living residences pro-

vide quality care and attractive living environments, too many

elders cannot afford this option.

Add to this mix the increased demands of caring for people

with 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 for

Chapter 11 bankruptcies or are understaffed, and community

based alternatives struggle to stay in business? With fewer

options, more and more overworked and exhausted caregivers

will reach their breaking point.

We must invest now in a long term care system that meets

the needs of our growing elder population. The state needs to

establish Medicaid rates which fairly reimburse nursing

homes. It must invest in adult day health programs and home

health 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 issues

as their top priorities, decision-makers need to take note. The

alternatives are unacceptable. 

As we go to press, a

state legislative con-

ference committee has

approved a $42 million

“Nursing Home Quality

Initiative.” If approved

by the governor, this ini-

tiative represents a

major 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 would

like to thank you all for you help in soliciting the support of

your state Senators and Representatives, and to thank them for

their response. (See related story on pages 8-9.)

We Are One Organization

After joining last fall with the former Western Massachusetts

Chapter to form the Alzheimer’s Association, Massachusetts

Chapter—the first successful merger in the national realign-

ment process—we have implemented an integrated Helpline,

uniform training programs for professionals, and mentoring

for support group leaders. To assure full participation of our

voluntary leadership across the state, we arranged a simulta-

neous video conference of our recent Board meeting at sites in

Boston, 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 Greater

Lowell Advisory Committees.

The Massachusetts Chapter has worked to keep the concerns

of our Alzheimer community in the public’s eye in other ways,

as well, with volunteers and staff featured over the last months

in numerous local and national media outlets, including NBC

Nightly News (twice); Newsweek magazine; Associated Press

international and local wire stories; the CBS Healthwatch Web

site; Long Term Care Provider Magazine; WGBH TV Channel 2;

WCVB TV Channel 5; a three-part news series on the Noonan

family on WLVI TV Channel 56 (see page 22 for more on this

remarkable family); the Boston Globe; the Tab Newspapers

and Web chat site; and several other print and radio

features.

b

—James Wessler

P.S. With this issue, Gerald Flaherty steps down as Editor in

order to focus on other chapter duties. Jerry will remain on the

Editorial Board, where he has served since 1988. Catherine

Votaw, family member, former chapter volunteer and medical

writer, joins us as Editor for our next issue. Catherine will work

with the Editorial Board under the supervision of Rachel

Hawk, 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 [e-mail].

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 cabo

en el Curtis Hall Community Center, 20 South Street en el

barrio 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 Boston

UMass explicarán la diferencia entre envejecimiento nor-

mal y la enfermedad de Alzheimer asi como los trata-

mientos actuales. Un pánel formado por tres familiares que

procuran el cuidado a sus parientes enfermos van a hablar

de sus experiencias con sus parientes affectados con demen-

cia. Esta conferencia será conducida totalmente en

Español. Para mayor detalles, llame a Conchita Rodríguez

a nuestra línea en español marcando 617-868-8599. 

b

(See page 20 for English translation.) 

UMass sponsors three-site video

Board conference 

S A V E

T H E

D A T E !

From the Executive Director: Long Term Chaos

Page 2

Alzheimer’s Association, Massachusetts Chapter

Alzheimer’s Association, Massachusetts Chapter

Page 3

Patient Care

and Family

Support

I

n this age of cellular phones, pagers, e-mail, voicemail,

faxes and lower-than-ever long distance phone rates, letter

writing 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 we

lost we when stopped writing letters! You can’t re-read a phone

call,” as Washington pundit Liz Carpenter put it.

Articles in professional journals also support the notion that

writing can have many therapeutic benefits for people coping

with stressful situations. In this spirit, we, as facilitators and

members of an Alzheimer caregiver support group, have

embraced 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 them

under specific circumstances, and brainstorm about the kinds

of letters they may want to write as the changing circumstances

of care dictate.

The group’s letter writing began when Mr. R, a creative and

energetic problem-solver, shared his strategy for reaching out to

friends to help his wife, who has mild memory loss. He knew

that reminiscing was an effective therapeutic activity for her,

and wanted help putting together the pieces of his wife’s life

predating their relationship. In a humorous but heartfelt holi-

day letter, he wrote to friends and family, updating her current

situation and enlisting their help. He told them he was compil-

ing a book of memoirs for his wife, and asked that they send

information about their earliest history with her, fond memo-

ries, “funny stuff,” and updates on their own lives. They

responded enthusiastically, appreciative of the chance to be

involved. Mr. R’s book is an ongoing source of pleasure for him

and his wife.

Another demonstration an often-discussed principle of care-

giving—operationalizing a request for help—in this case

though letter writing, came from the group’s co-facilitator. She

brought in a letter written by a colleague who had noticed the

disengagement of her mother’s longtime friends after her

mother entered a nursing home. Although the daughter knew

that many of these friends had their own health problems, she

was distressed that they seemed to “fade away” as her mother

became more confused. She decided to take action during the

holiday season, writing a letter accompanying a Christmas card

to each of them. She updated them on her mother’s health, and

discussed her difficult decision to move her mother to the nurs-

ing home. She said she thought her mother would benefit from

a brief visit, phone call or note from them, included contact

information, and ended on the positive note that her mother

was receiving quality care in her new setting. Again, the

response was overwhelming, as her mother began receiving

calls, visits and notes from old friends. The holiday letters were

a way of being clear about how her mother’s friends could be

helpful, without overburdening them.

Some group members have found letter writing an effective

way 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 to

be frank in chronicling memory or behavioral changes often

find that a letter provides an effective way to do so. Mr. R noted

that he uses letters to his wife’s doctors to make clear his desire

to be “kept in the loop.” Another group member, Mrs. H, always

sends a letter before bringing her mother-in-law in for medical

appointments. She includes all current medications, states the

reason for the visit, highlights changes and, so they won’t be

forgotten 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 their

father’s care, but felt they were not “putting their energy in the

right 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 shape

the agenda for an upcoming family meeting, and helped guide

her in using of a follow-up letter highlighting her concern that

they all keep their focus. Letter writing can also be used as a

“heads-up” to prepare family members who are planning to

visit so that they’re not caught off guard by changes in the

patient since their last visit.

A final example of the usefulness of letter writing comes in

the form of the “unsent letter.” Caregiving can be a daunting

task 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 negative

factor. Mrs. F’s marriage has been extremely difficult. The

group encouraged her to write a letter to her husband, which

would remain unsent, as a means of expressing her anger

toward him in an appropriate manner. “Getting it down on

paper,” as Mrs. F put it, was her opportunity “to let off some

steam,” releasing her feelings while the letter, by remaining

private, did no emotional harm to the patient.

Whether snail mail or e-mail, group members found that

written correspondence was an important tool in meeting a

range of caregiving challenges. Interestingly, the group effort in

writing 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 larger

caregiving community. 

b

Letter Writing and Caregiving: Discovering a Lost Art

Lissa Kapust (center) and

support group members,

pens poised

This article is the col-

lective work of Lissa

Kapust, LICSW, senior

social work supervisor

at the Beth Israel

Deaconess Medical

Center Neurology Unit;

Kelly McCutcheon,

LICSW, social worker at

SunBridge Care and

Rehabilitation for

Newton; and the

Alzheimer’s Caregivers

Support Group they

facilitate at SunBridge.

Development

Page 4

Alzheimer’s Association, Massachusetts Chapter

O

n the evening of April 13, volunteers, friends and staff

formally dedicated the Massachusetts Chapter’s very

special Spirit of Remembrance wall during installa-

tion ceremonies in Cambridge.Spirit of Remembrance is a

multi-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 our

main office, the Spirit wall provides an oppor-

tunity to remember and pay tribute to our

loved ones, whose names can also be etched

there. Ms. Rubin, whose mother died of

Alzheimer’s disease, attended the dedication

with her family.

It was a night of dedications. In addition to the Spirit wall,

our Education and Training Center was officially named in

memory of Elinor and Lou Hens, parents of Board member

Joan Johnson of Andover, who paid tribute to their influence in

her life and on her work on behalf of others affected by

Alzheimer’s disease. We also dedicated our Family Conference

Room in memory of Myer Saxe, one of our Chapter’s founders

and a long-time supporter and fund-

raiser. Mr. Saxe’s daughter Ruth and

her husband George Rautenberg of

Lexington were also in attendance.

Remarks by Joe Paresky of Boston, a

friend both to Myer and to our chap-

ter, helped us all appreciate Myer’s

full contribution to our work.

The overflow crowd of supportive

family members challenged our office capacity

in a warm and welcome way, as they turned out

to commemorate their loved ones. Among them

was Boston’s Secretary of Human Services

Juanita Wade (and family), whose mother,

Violet May Brooks, died late last year and is

commemorated on the Spirit of Remembrance

wall. Also delivering mov-

ing presentations were

Board Chair Nina Silver-

stein, chapter Executive

Director Jim Wessler, and

Paul Raia, the chapter’s

Director of Patient Care

and Family Support.

The night was—and

the Spirit of Remem-

brance wall remains—a

commemoration which

helps provide closure to

families who have lost

loved ones, and offers

comfort to those currently

coping with the effects of a

dementing illness. The

Alzheimer’s Association, Massachusetts Chapter, encourages vis-

itors to view these beautiful panels at our Cambridge office, and

welcomes your inquiries. Please call us at 617/868-6718. 

b

Spirit of Remembrance Wall Is Dedicated in Cambridge