From the Executive Director Letter Writing: a lost Art As Therapy
Community Health Charities of Massachusetts
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Community Health Charities of Massachusetts D id you know that Community Health Charities of Massachusetts is the exclusive representative of the Alzheimer’s Association, Massachusetts Chapter, in public and private sector payroll deduction campaigns? If Community Health Charities of Massachusetts is in your com- pany’s campaign, please ensure that your gift to the Alzheimer’s Association be designated under this umbrella group. In the private sector, look for the Agency Code #5002- Alzheimer’s Association. In the public sector, the Agency Code numbers differ depending upon your work location. Community Health Charities of Massachusetts has three offices working to promote the work of the Alzheimer’s Association, Massachusetts Chapter. For more information, please call Holly Boykin, Chief Executive Officer, at 781/326-3747. United Way If you are in a private company which does not have Community Health Charities of Massachusetts in its workplace giving campaign, you can designate your gift to the Alzheimer’s Association, Massachusetts Chapter, by writing it in under the specific agency section. Thank you for your continued, and critical, support. Workplace Giving Campaigns The family of the late Myer Saxe gathered during the “Spirit” wall ceremonies for the dedication of our Family Conference Room, named for Myer in recog- nition of his long support of the chapter. Emery Currier of South Hadley, a major supporter of our chapter’s services, with ED Jim Wessler (cen- ter) and Board chair Nina Silverstein at “Spirit” wall installation ceremonies. Spirit of Remembrance photos by Dick Fleiss Board member Joan Johnson, seen here by the chapter’s newly dedicated Elinor and Lou Hens Education and Training Center conference room memorializing her par- ents, also spoke at the chapter’s “Spirit” wall ceremonies. Eleanor Rubin, whose print, “Taking Leave,” graces our Spirit of Remembrance wall, with granddaughter Emily Rose Fischer, 11 months. Alzheimer’s Association, Massachusetts Chapter Page 5 Development T he frigid cold weather couldn’t keep 600 people from attending Winterfest 2000 late in January. Guests enjoyed good food and convivial conversation, dancing through the night music by DJ Fran Sullivan. This annual event, chaired by Heidi Ganss and named in loving memory of her grandfather James “Vic” Jordan (1918-1994), was again held at The International on High Street in Boston. Thanks to the generosity of John Ryan of The International, to Fidelity Press and to the many businesses that donated door prizes, gift certificates and products with values from $15 to over $200, the benefit raised more than $8,000 to support the Massachusetts Chapter’s programs and services. Hardworking and dedicated Winterfest 2000 committee members volunteer their time and efforts because they have all been touched by Alzheimer’s disease. Kathy Duffus worked tire- lessly in memory of her father, Donald Duffus, whose photo was featured on the benefit’s Faces of Alzheimer’s display. Also remembered on the display was Carl Josephsen, who lost his battle with the disease on Christmas Day 1999. Another long- time committee member, Pauline Carpenter, has volunteered her time and energy for many years because her beloved grand- mother and namesake, Polly Carpenter, (1898-1990), also suffered from this devastating disease. b
Jen Anthony Christine Bourassa Michelle Barry Megan Cap-Renzi Pauline Carpenter Kathy Duffus Andrea Evans Heidi Ganss Tim Ganss Kristin Klayner Kevin & Patty Molloy Ed Nolan Betsy & Mike Nordman Melanie Manning Elizabeth & Mike Shade Ali Shoh Brandi Sikorski Katha Washburn Rich & Katie Whelpley Winterfest 2000 business donors Bell Atlantic Mobile New England Patriots Boston Celtics The Green Company, Danvers Boston Bruins L’Espalier Restaurant, Boston Odyssey Cruise Line, Boston Medieval Manor, Boston Wellness Massage Center, Newton Anderson’s Jewelers, Wellesley Appetito Restaurant, Boston/Newton Ardan Salon and Day Spa, Wellesley Asian Grill, Waltham Austin Grill, Cambridge Bluestone Bistro, Brighton Bookstore Restaurant, Wellfleet Bridgewater State College Alumni Association Buff’s Pub, Newton Cambridge Marriott Captain’s Quarters Resort, N. Eastham Carambola Restaurant, Waltham Corners Framing, Newton/Cambridge Dick’s Last Resort, Boston Doubletree Guest Suites, Waltham Erawan of Siam, Waltham Fire & Ice, Cambridge Hair West, Wellesley Jesamondo Day Spa, Wellesley Johnny D’s Uptown Restaurant, Somerville Kevin Max Hair Design, Newton La Groceria Restaurant, Cambridge Minuteman Car Wash, Medford Miracle of Science Bar & Grill, Cambridge Moby Dick’s Restaurant, Wellfleet Museum of Fine Arts, Boston N.E. Mobile Book Fair, Newton Salon Luiz, Boston The Black Cow, Newburyport The Hartwell House, Lexington Wayland Golf Shops Wellfleet Cinemas 9th Annual James V. Jordan Winterfest Benefit Draws 600 Al Dente Road Race/Walkathon at $15,000 and Counting! T he 4th annual Al Dente Road Race/Walkathon to benefit the Alzheimer’s Association, Massachusetts Chapter, got off with a bang May 13 from the VFW Post 1012 in Medford. Walkers and runners not only competed for top honors and raffle prizes, but also enjoyed music, refreshments, the post-race awards presentation and a festive barbecue. This year’s event topped expectations, exceeding 1999’s 400-plus participants. Special thanks go to Ralph Dente and Ed and Maureen Nolan for all their hard and generous work on the Race. Keep track of this and other annual events which provide critical support for our programs and services by checking the Special Events page of our chapter Web site at www.alzmass.org. b
Family Conference Draws Caregivers to Northeastern University Education All Family Conference photos by Sam Laundon, Natural Light Studios Page 6 Alzheimer’s Association, Massachusetts Chapter By John Medina, Ph.D. 1999: CME, Inc. and New Harbinger Publications, Inc. Softcover, 165 pp. Available from the Massachusetts Chapter at $14.95 for members, $15.95 non-members plus $2.75 postage. Reviewed by Judith Antonangeli, RN, MSN John Medina’s 1999 book is an unusually com- prehensive resource, clearly defining Alzheimer’s disease and its neuropathological effects while also offering practical suggestions for professional and lay caregivers. It also includes an informative For- ward by Dr. John Schwartz, Editor-in-Chief of Psychiatric Times. Part one provides an historical overview of Alzheimer’s dis- ease, its warning signs, and diagnostic, medical, behavior and mood problems. It opens with three case studies that sensitize the reader to the devastating impact of an Alzheimer diagnosis and the gradual loss of self people with the disease experience as it progresses. As one family member relates, “After a seemingly endless series of tests, with no one committing to a definite diag- nosis, we got a phone call from our doctor. He said Carol was probably in the early stages of Alzheimer’s disease, and I did not hear the rest of what he said because I dropped the phone and began to cry.” In part two, Dr. Medina describes in detail how the brain works and thoroughly examines why this disease causes such destruction. Again, he uses vignettes and case studies to explain some very complex neuropathology for the lay reader. A care- giver, for example, observes the seemingly contra- dictory expression of her father’s disease: “As Daddy retained the skill to ride his bicycle, some facet of implicit memory was working adequately. But there was definitely long term memory loss, because Daddy no longer recognized Beth as his daughter.” Part three is replete with practical suggestions applicable in the home, or in assisted living or long term care settings. Medina is realistic in summarizing the challenges caregivers face, but focuses more on concrete ideas and good tips for proactive rather than reactive approaches in coping with prob- lem behaviors, structuring personal activities and just making life more enjoyable it spite of the disease. One problematic issue for readers with diminished eyesight, however, is the glossy fin- ish of the pages. But this flaw is more than offset by the remark- able and colorful artwork and the portions of highlighted text that draw the reader to those sections of the book most useful to caregivers. b
What You Need To Know about Alzheimer’s: A Guide for Caregivers and Patients A mong our other outstanding educational events, the Massachusetts Chapter organized its 16th Annual Family Conference at Northeastern University in Boston. More than 250 family caregivers and early stage patients gathered for this year’s conference, which for the first time offered work- shops three languages: English, Cantonese and Spanish. Dr. Neil Kowell of Boston University Medical Center began the full day event with a comprehensive dementia research update, reviewing promising research, medicines and other treatments. This year we conducted 21 diverse workshops. Of particular interest were three workshops for people with early stage Alzheimer’s, which drew 30 participants. Caregivers gathered together again for lunch, and were treat- ed to remarks by state Representative Marie St. Fleur of Dor- chester, who powerfully and eloquently encouraged families to become active advocates in the Association’s public policy effort. Author, lecturer and Alzheimer family care consultant Joanne Koenig-Coste reminded participants in her closing remarks of the importance of their role in guarding the humanity of people with Alzheimer’s, and of the sustaining power of perspective, and humor. “This conference more than met my needs,” one conference participant noted. “The location was very accessible, the con- ference was affordable, and so many of the speakers were fabulous.” b
Alzheimer’s Association, Massachusetts Chapter Page 7 Education Once again, we were delighted that at a time of funding cuts and financial stresses, 700 professionals from community based agencies and long term care facilities continued to see the value of the inclusive, 40-plus workshops the conference offered them. Multidisciplinary Conference Draws 700 Dementia Care Professionals O ur year 2000 “Map through the Maze: A Multidisciplin- ary Conference for Professionals,” now in its eighth year, remains the largest regional conference of its kind, drawing yet another capacity audience to the Royal Plaza Hotel in Marlboro on May 20. Participants represented the mul- tiple disciplines within the dementia care profession. Once again, we were delighted that at a time of funding cuts and financial stresses, 700 professionals from community based agencies and long term care facilities continued to see the value of the inclusive, 40- plus workshops the conference offered them. Geri Richards Hall, PhD, ARNP, FAAN, Associate Professor and Associate Director for Outreach at the University of Iowa Center on Aging presented the keynote address, “Where Have We Come From, Where Are We Going.” The workshops that followed offered a wide and informative range of choice, from “Getting the Most out of Medicare Managed Care” with Katie Maslow of our National Alzheimer’s Association; “Alzheimer’s Disease and Mental Retardation” with our Board vice chair, Dr. Sanford Auerbach of University Hospital in Boston; “Addressing the Challenges of Transcultural Care” by Roberta Rosenberg of the Hebrew Rehabilitation Center for Aged in Boston; “Risk Assessment and the Prevention of Alzheimer’s Disease” by Dr. Robert Green of the Boston University Alzheimer’s Disease Center; and a special panel presentation, “We Are Still Here,” moderated by Elaine Silverio of the Boston Alzheimer’s Center and featuring interchanges with early stage patients—a repeat presentation of last year’s standout panel. The lunchtime Vendors’ Fair was lively and crowded, with exhibits from pharmaceutical companies, assisted living and nursing care facilities, and many other agencies and business- es. The day ended on an equally busy and interesting note at our Poster Session, which featured, among other exhibits, “How Dementia Friendly Are Acute Care Hospital Stays in Massachusetts?” presented by Board chair Nina Silverstein’s class of elder students at the UMass Boston Gerontology Institute; “Horticultural Therapy with Alzheimer Patients” by the New England Horticultural Therapy Association; and “Folate Deficiency and Neurodegeneration in Alzheimer’s Disease” by Dr. Thomas Shea of the Center for Cellular Neurobiology at UMass Lowell. b
Page 8 Alzheimer’s Association, Massachusetts Chapter Moving Fast Forward on Advocacy Agenda 2000 Advocacy by Deborah Thomson, JD T he Alzheimer’s Association, Massachusetts Chapter, embarked on an ambitious advocacy agenda for the year 2000 and Chapter advocates are keeping us on pace to meet it. Thanks to the responses of hundreds of readers who returned the survey printed in our last newsletter, we iden- tified nursing home staffing and quality as the #1 issue of concern to families dealing with Alzheimer’s disease. Other issues flagged by the survey include expanded access to care
on some of the progress we’ve made to date on your priorities, followed by a full list of our public policy initiatives. Nursing home staffing and quality The Association has helped to form a coalition of advocates, nursing home providers, family members and labor representatives working on improving access to quality care in nursing homes. Foremost on the coalition’s agenda has been the problem of shortages of nursing home direct care workers. We have been suc- cessful in persuading the state Legislature to include a major “nursing home quality initiative” in its budget. The initiative includes $35 mil- lion to provide a ten percent wage increase for nurse aides and an additional $7 million in nurse aide workforce development initiatives. We are now working to retain this provision in the state’s final FY01 budget. We will continue working with the Cellucci Administration and the Legislature to establish adequate minimum staffing standards for nursing homes.
As part of our drive to expand access to community care, we have successfully advocated for a second year’s addition of $1 million to the Medicaid rates for dementia-spe- cific adult day health programs. This money will allow demen- tia day care programs to meet the additional costs of staffing and security that dementia patients require. Over the coming year we will be working toward the implementation of a state oversight system for adult day programs which recognizes dementia day care as a distinct type of program and sets appro- priate standards of care. Chapter representation on the Adult Day Study Commission was critical to this success. Prescription drug coverage Working in concert with other advocacy groups, we succeed- ed last year in establishing an expanded Pharmacy Program with a $1,250 benefit for low-income elders and people with disabilities. We also helped establish a program with unlimited benefits for people with catastrophic drug costs. This year we hope to gain legislative authorization of a prescription drug insurance program to provide coverage for all elders and for low-income individuals with disabilities. This program would provide enrollees with income-scaled premiums, co-pays and deductibles, and would offer unlimited drug coverage after the deductible is met. Safe Return Program fee coverage Wandering from home or a facility and becoming lost is a life-threatening behavior addressed by the Alzheimer’s Association’s national Safe Return Program. Advocates succeed- ed in gaining coverage of the one-time $40 cost of Safe Return registration for eligible individuals through the state’s ASAP/Homecare agencies. Special thanks go to Dan O’Leary, Executive Director of Mystic Valley Elder Services, and to state Elder Affairs Secretary Lillian Glickman for their attention to this life-saving effort. The chapter will continue its effort to have Safe Return education and Search & Rescue training materials used routinely during in-service trainings at the state’s police academies.
The Advisory Council on Alzheimer’s Disease was originally established by legislation authorizing its work for a two-year period. Under the leadership of Elder Affairs Secretary Lillian Glickman, the Council has produced a series of recommenda- tions for better coordination of state services provided to dementia patients and for better education of health care pro- fessionals and the public. The current House and Senate FY01 budgets contain language authorizing the Council to continue its work for another two years. These are just a few of the exciting initiatives in which the Alzheimer’s Association has successfully participated. If you would like to play a more active role in our advocacy efforts, contact Susan Kelly-Grasso at 617/868-6718. Susan can sign you up for our Public Policy mailing list, which will entitle you to frequent updates on legislative and other advocacy develop- ments. Additional advocacy priorities for the coming year include: Legislative Education and Awareness Day Advocates Lobby for Nursing Home Quality Care O n April 4, approximately 150 advocates and 20 legislators and aides gathered at the State House in Boston for the Alzheimer’s Association annual Legislative Education and Awareness Day. Co-sponsored by the Legislative Caucus on Older Citizens’ Concerns, the forums theme this year was “Advocating for Quality Care in Nursing Homes.” It featured a panel presentation by a family member (Katherine Votaw), a nurse aide (Herbert Jean-Baptiste), a clinician (Dr. Paul Raia of our staff) and the state long term care Ombudsman Program direc- tor (Mary McKenna). Following her welcoming remarks, state Representative Carol Cleven of Chelmsford, co-chair of the Legislative Caucus and Massachusetts Chapter Board member, discussed the work of the Caucus. Audience members engaged in a lively question and answer session at the conclusion of the panel presenta- tion, voicing their concern and determination that their loved ones receive the best possible nursing home care. Nursing home representatives also stressed the need for more state funding to hire staff and to meet residents’ care needs. The morning’s events concluded with lobby- ing visits by audience members to their individual legisla- tors, urging them to support increased funding for nurs- ing home direct care workers in this year’s state budget. Massachusetts Secretary of Elder Affairs Lillian Glickman delivered closing remarks, stressing the need for improved quality in long term care. This need has been brought home to all of us in news stories and other reports alleging neglect or abuse of Alzheimer residents in long term care facilities. Please call the state long term care Ombudsman or the Alzheimer’s Association if you suspect mistreatment of a family member or other nursing home resident. b
Alzheimer’s Association, Massachusetts Chapter Page 9 Advocacy New Free
Consumer Guide Available Please call the Massachusetts Chapter at 1-800-548-2111 for your free copy of our new Consumer Guide on how to select an Alzheimer Special Care Unit in a long term care facility. • Expanded access to community care and services As indicated in your survey returns, an overriding concern for dementia patients and their families is access to community- based care. In addition to the success of our dementia day program initiative, the Massachusetts’ chapters have advo- cated over the past year for increased access to affordable assisted living; for more social support service funding for ASAP/Homecare community agencies; and for the national Family Caregiver Support benefit being considered by Congress. • Guardianship and competency issues Guardianship and competency issues are perennial problems for people with dementia and their families. Over the past year, the chapters have supported bills to make guardianship proceedings more simple and affordable, and to create a Public Guardianship Commission for dementia patients who do not have families, or resources, to assist them. These bills need your advocacy over the next year in order to be passed by the Legislature.
Since the passage of the Balanced Budget Act of 1997, the Medicare program has severely reduced its payment to health care providers. This has destabilized our long term care sys- tem, with many home health agencies and nursing homes entering bankruptcy proceedings. In addition, a number of HMOs and health care providers have dropped out of the Medicare managed care system, leaving beneficiaries with reduced access to care under these plans. People with demen- tia are having a much harder time accessing Medicare-cov- ered services such as home health care, and the extra burden of care frequently falls to families. The chapters have advo- cated for legislation at the state and federal level which would offset some of these harmful changes and provide needed services for patients and families.
The first public policy priority of our national Alzheimer’s Association is an increase in research funding for dementing illnesses. The chapters have participated in this national effort and are working with the state’s Congressional delega- tion to ensure adequate funding levels. • Vision 20/20 Project The aging of the baby boom generation will severely tax our nations’ long term care system in the coming decades. In order to plan for meeting long term care needs in Massachusetts, the chairs of the Legislature’s Health Care Committee have convened a “Vision 20/20 Project.” This group of academics, legislators, state agency personnel, health care professionals and advocates will develop a long term care blueprint for Massachusetts to follow into the future. Our Massachusetts Chapter is part of the task force planning this project and developing the long term plan.
National Public Policy Forum F ifteen Massachusetts advocates attended the National Alzheimer’s Association Public Policy Forum in Washington, D.C. March 18-21. The four-day Forum, which featured a wide range of workshops on various public policy topics, left plenty of time for networking among advo- cates from chapters and agencies in other states. Our Massachusetts advocates met with the state’s Congressional del- egation to lobby for increased research funding and creation of a family respite benefit. b
Medicine and Science Simons Symposium photos by Sam Laundon, Natural Light Studios Page 10 Alzheimer’s Association, Massachusetts Chapter by Lindsay Mortenson A n audience of 150 family members, researchers, health care professionals and the general public crowded the Colonnade Hotel in Boston to hear Dr. Marilyn Albert present her research findings at the chapter’s 9th Annual Mathew and Marcia Simons Symposium on Alzheimer’s dis- ease. Dr. Albert, a neuropsychologist, is director of the Geriatric Neurobehavioral Clinic in the Department of Psychiatry at Massachusetts General Hospital. In a provocative lecture titled “Predicting Alzheimer’s: How close are we?” Dr. Albert described her cutting edge work in using neuropsychological testing, neuroimaging procedures and genetic information to predict who will develop Alzheimer’s within a three to four year time span. To that end, she has identified selective changes in the brain which occur very early in the disease process. “If we measure both the function and the structure of the brain, we know where to look for signs that tell us who is going to develop Alzheimer’s disease,” Dr. Albert said. Over four years, Dr. Albert and her team at MGH interviewed and tested study subjects, some with questionable Alzheimer’s disease and some with normal memory. The encouraging results showed that after three years, only 19 percent of subjects with questionable Alzheimer’s met the clinical criteria for the disease. None of those in the normal memory group met those criteria. Dr. Albert also investigated whether older people with recent changes in memory experience a continuous decline in memory. Clinical Dementia Rating tests revealed that while memory function in 55 percent of subjects did decline, approxi- mately 30 percent remained the same. Roughly 15 percent actually showed improvement on the tests. Dr. Albert used neuropsychological tests to examine lan- guage, spatial relations, attention, delayed recall and executive brain function (as an example of executive function, she described the sequencing skills needed to cook an elaborate Thanksgiving dinner). The object of this testing was to deter- mine if changes early in the disease process are measurable by existing methods. She also used several neuroimaging methods in order to discover if Alzheimer’s disease progresses in a sys- tematic and predictable manner. One of these methods, Single Photon Emission Computerized Tomography (SPECT), deter- mined that those in the study who had developed clinical Alz- heimer’s had significantly decreased blood flow to four different areas of the brain: the hippocampus (involved in memory pro- cessing); the posterior cingulate; the anterior thalamus; and the middle cingulate (involved in executive function). Magnetic Resonance Imaging (MRI) and genetic screening were also used to help identify those who would eventually develop the disease. Interestingly, study subjects’ APOE gene status (the APOE gene is implicated in the most common, late onset type of the disease) predicted the disease in only 66 per- cent of subjects. By using a combination of different types of tests which combined information gathered on age, gender and education, from neuropsychological tests and from SPECT and MRI neuroimaging, however, Dr. Albert was able to predict who would develop Alzheimer’s disease in over 90 percent of her study subjects. This impressive statistic, she said, can only improve with additional refinements to the various testing pro- cedures, including functional MRI (fMRI) scans. The results of Dr. Albert’s research point to the real possibili- ty that accurate prediction of Alzheimer’s disease could soon hit 100 percent. She emphasized that as better treatments for the disease emerge, it will become increasingly important to identi- fy people who are in the very beginning stages of the disease. Dr. Albert and her colleagues have made a significant contribu- tion toward that goal. b
Dr. Jeffrey Cummings To Speak at
Simons 10th Anniversary Symposium T he chapter’s Med- ical & Scientific Advisory Com- mittee has named Dr. Jeffrey Cummings, director of the Alzheimer’s Disease Center at UCLA as the pres- tigious year 2000 Matthew and Marcia Simons Alzheimer Research Sym- posium Lecturer. Dr. Cum- mings’ work studying and treating behavioral distur- bances in Alzheimer’s disease and the related dis- orders is an area of enor- mous interest to family and professional care- givers, clinicians and scientists. His diverse writ- ings include “Probable Alzheimer’s Disease in an Artist” and transcultural aspects of dementia. (See page 20 Save the Dates! for further details.) b
9th Annual Simons Research Symposium Features Dr. Marilyn Albert
W e are delighted to publish on these pages the fourth edition of our Directory of Research Opportunities. The role of our Association Chapter, through its Medical & Scientific Advisory Committee, is to educate the public about beneficial research, and to offer a connection between our Alzheimer families and specific research opportunities. We welcome the chance to work with local medical and scientific investigators in any way helpful to the thousands of Alzheimer families in our service area. Our goal is to empower families to make informed decisions. Research of any kind involving human subjects must, by law, be approved by an independent committee made up of physicians, lay persons and others. All studies listed here received Institutional Review Board approvals from their respective institutional sponsors before being approved for posting with our telephone Helpline and on our Web site by the Medical & Scientific Advisory Committee. However, neither the Committee nor the Alzheimer’s Association can guarantee the safety or efficacy of any study. We urge you to call the contact listed for the study in which you are interested in order to get as much information as possible. You may also want to ask your primary care doctor about your decision to join a particular research study. Should you choose to participate in a research study, we would be very interested in hearing about your experience. We need your candid feedback to help guide us in evaluating future listings. Please call, write, or e-mail your comments to our Committee staff, Gerald.Flaherty@alz.org. And please contact us if you need any additional information about participating in research studies, or any other information about Alzheimer’s disease and related disorders, at: Alzheimer’s Association, Massachusetts Chapter 36 Cameron Avenue, Cambridge MA 02140 Tel: 1-800-548-2111 Fax: 617-868-6720 Web: www.alzmass.org. Note that while we’ve categorized the studies as Behavioral, Caregiving, Control Group, Diagnostic,
Please also note that we will be updating these listings regularly, adding new studies and deleting those which are no longer recruiting volunteers. Thank you. —Roberta Rosenberg, M.Ed., Chair Medical & Scientific Advisory Committee
Page 12 Alzheimer’s Association, Massachusetts Chapter BEHAVIORAL STUDIES Acupuncture for People with AD For people with Alzheimer’s disease or probable AD. Requires 2-3 months of bi-weekly acupuncture sessions. The goal of this study is to explore the effec- tiveness and feasibility of acupuncture in mitigating mood or behavioral problems, and to determine the potential for improving cognition and physical func- tioning in AD. Compensation: free acupuncture val- ued at over $1,300. Ⅲ Wellesley College Center for Research on Women Ⅲ Contact: Dr. Nancy Emerson Lombardo at 781-283-2740 Cognition in Aging and AD: A Functional MRI Study For people with early to mid-stage Alzheimer’s who are not taking medication for the disease, and healthy people ages 20-89 to serve as control sub- jects. Should be able to remain still in an enclosed area for a moderate length of time. The goal of this educational study is to gain a better understanding of the different types of human memory using fMRI imaging. Compensation: $10/hr or $50/day. Ⅲ MIT/MGH Memory Disorders Unit (Boston) Ⅲ Contact: Dr. Sue Corkin at 617-726-1728 or e-mail corkin@mit.edu Cognitive Function in Aging and Dementia For people with Alzheimer’s ages 45-85 in general good health. Several tests (written and/or oral) will be given over the course of two days at the Memory Unit. The goal of this study is to examine the differ- ent types of memory that are impaired by the disease. Compensation: $10/hr or $50/day. Ⅲ MIT/MGH Memory Disorders Unit (Boston) Ⅲ Contact: Dr. Sue Corkin at 617-726-1728 or e-mail corkin@mit.edu Functional MRI Testing of Memory for Names and Faces For people with early to mid-stage AD who are not taking cholinergic drugs (such as Aricept). Should be able to remain still in an enclosed area for a mod- erate length of time. The goal of this 1 1 / 2 -hour study is to gain a better understanding of a specific type of human memory using fMRI imaging. Compensation: $50 plus transportation and parking. Ⅲ Brigham & Women’s Memory Disorders Unit (Boston) Ⅲ Contact: Dr. Reisa Sperling at 617-732-8060 or e-mail reisa@bwh.harvard.edu
For people with early to mid-stage Alzheimer’s with a reliable caregiver who is willing to take part in periodic interviews. There is an initial test and inter- view at the Medical Center, then follow-up phone contact every six months over three years. The goal of this study is to discover a pattern in which patients develop behavior problems. Parking paid. Ⅲ UMass Medical Center (Worcester) Ⅲ Contact: Dr. Joan Swearer at 508-856-5668 Sentence Comprehension in Aging and AD For people with Alzheimer’s who are native English speakers, to complete tests of memory and language during six to eight 1-hour visits. Tests can be completed at home or at another convenient loca- tion. Compensation: $10/hr. Ⅲ Boston University Ⅲ Contact: Dr. Gloria Waters at 617-353-7530 Theoretical Analysis of Learning and Memory in Age-Related Disease For people with early to mid-stage Alzheimer’s, to complete several tests (written and/or oral) over the course of three outpatient days (can also be done on an inpatient basis). The goal of this study is to exam- ine the different types of memory that are impaired by the disease. Compensation: $10/hr or $50/day. Ⅲ MIT Clinical Research Center (Cambridge) Ⅲ Contact: Dr. Sue Corkin at 617-726-1728 or e-mail corkin@mit.edu Vision and Cognition in Alzheimer’s and Related Disorders For people with early to mid-stage Alzheimer’s and others, who can serve as healthy control sub- jects. Should have eight or more years of education, English as a native language, live at home or in a home-like residence, and be able to perform at least one of three main vision tests. Testing takes about three hours at BU. The goal of this study is to exam- ine how visual problems in Alzheimer’s can impair the ability to understand and use information, and to improve vision with the goal of improving cognition. Compensation: $50 and free eye exam. Ⅲ Boston University Ⅲ Contact: Dr. Alice Cronin-Golomb at 617-353-3911 or e-mail alicecg@bu.edu
For 40-60 year old children of a parent with an Alzheimer diagnosis, to answer phone survey. The goal of this study is to gain a greater understanding about when, where and how these subjects seek help for their parent with Alzheimer’s, and to assess their attitudes and fears regarding the disease. Ⅲ Drs. Stephen Cutler and Lynne Hodgson Ⅲ University of Vermont and Quinniapic College (CT) Ⅲ Contact: New England Research Institute (Boston) at 617-923-7747
For caregivers of people with Alzheimer’s and related disorders. The goal of this study is to examine how different people deal with the pressures of being a caregiver. Includes a 1-hour interview and 1-hour take-home questionnaire. Ⅲ McLean Hospital (Belmont) Ⅲ Contact: Dr. Helen Kyomen at 617-855-3458 or e-mail hkyomen@warren.med.harvard.edu
For two focus groups consisting of people with early stage Alzheimer’s or a related dementia and/or family members, friends or providers who are re- sponsible for making decisions about the care of someone with early stage Alzheimer’s or a related dementia. Each focus group will participate in a 1 to 2-hour session at The Picker Institute. The goal of this study is to evaluate patients’ well-being and quality of care. Compensation: $25. Ⅲ The Picker Institute (Boston) Ⅲ Contact: Dr. Amy Stern at 617-667-8613 or e-mail astern@picker.org
For primary caregivers of people with Alzheimer’s, vascular or other progressive dementia whose physi- cian is affiliated with Newton Wellesley Hospital. Must know or be willing to learn how to use a com- puter. Compensation: Computer equipment and training. The goal of this NIA-funded study is to test the potential benefits of a secure Internet-based site linking caregivers to a medical, educational and social support system. Ⅲ HealthVision (Waltham) Ⅲ Contact: Dr. Paul M. Gertman or Laila Vehvilainen at 781-647-7800 x24 or e-mail lvehvila@healthvision.com Research Study Summaries
Alzheimer’s Association, Massachusetts Chapter Page 13 Physical Activity and Exercise among Spousal Caregivers For caregivers ages 65-75 who have been provid- ing care at home for least 20 hours a week over a one to three year period for a spouse with Alzheimer’s. Requires only 20-30 minutes. The goal of this study is to design new programs to assist future caregivers. Ⅲ University of Massachusetts/Lowell Ⅲ Contact: Dr. Susan Crocker Houde, Teri Dugan- Frost or Lori O’Leary or e-mail oleary@a1.tch.harvard.edu Support of Alzheimer Caregivers: A Multi-cultural Perspective For caregivers of people with Alzheimer’s disease. Requires a 20-30 minute taped telephone interview. The goal of this study is to examine, from a variety of cultural perspectives, the types of support experienced by people caring for someone with Alzheimer’s. Ⅲ Northeastern University School of Nursing/Bouve College of Health Science Ⅲ Contact: Drs. Margaret Christensen, Joan Masters, Mary Ann Gauthier, Magdelena Matzo or Abraham Nehiwame at 617-373-3649
For caregivers of a family member with Alzheimer’s. Requires a one-hour interview at the caregiver’s home or other convenient location. The goal of this study is to identify the processes and characteristics of resilience in African American fam- ily caregivers of people with AD. Ⅲ University of Massachusetts/Boston Ⅲ Contact: Kristine Van Lenten, RN at 781-545-5987 or Angela Udenze, RN at 781-848-9662 CONTROL GROUP STUDIES Cognitive Function in Aging and Dementia For healthy people ages 45-85 to serve as control subjects. The goal of this study is to examine the dif- ferent types of memory that are impaired by Alzheimer’s. Several tests (written and/or oral) will be given over the course of two days. Compensation: $10/hr or $50/day. Ⅲ MIT/MGH Memory Disorders Unit (Boston) Ⅲ Contact: Dr. Sue Corkin at 617-726-1728 or e-mail corkin@mit.edu Cognition in Aging and AD: A Functional MRI Study (See “Behavioral Studies.”) Vision and Cognition in Alzheimer’s and Related Disorders (See “Behavioral Studies.”) Diagnosing Dementia Using False Recognition (See “Diagnostic Studies.”) Pupil Response to a Cholinergic Antagonist (See “Diagnostic Studies.”) The Molecular Genetics of AD (See “Genetic Studies.”) Database on Aging (See “Normal Aging Studies.”) DIAGNOSTIC STUDIES Diagnosing Dementia Using False Recognition For people with Alzheimer’s or Frontal Lobe Dementia, and healthy control subjects over age 60, for a diagnostic study over one or two half-day hospi- tal visits. The goal of this study is to develop a com- puterized memory test. Compensation: $10/hr and parking. Ⅲ Brigham & Women’s Hospital (Boston) Ⅲ Contact: Dr. Andrew Budson at 617-732-8068 or e-mail aebudson@bics.bwh.harvard.edu Measurement of Central Nervous System Function with Eye Movements For people with Alzheimer’s and healthy control subjects over age 60. Should be able to sit through a series of tests during a half-day hospital visit. The goal of this study is to develop a way to diagnose Alzheimer’s through eye movements. Compensation: $10/hr plus transportation and parking. Ⅲ Brigham & Women’s Hospital (Boston) Ⅲ Contact: Dr. Kirk Daffner at 617-732-8068 or e-mail bsv@bics.bwh.harvard.edu Pupil Response to a Cholinergic Antagonist For people with Alzheimer’s who are not taking any cholinergic drugs (such as Aricept), to be given eye drops containing a cholinergic antagonist during two or three half-day hospital visits. The goal of this study is to measure how the pupil responds to an experimental eye drop, for diagnostic purposes. Compensation: $25/hour plus transportation and parking. Ⅲ Brigham & Women’s Hospital (Boston) Ⅲ Contact: Dr. Kirk Daffner at 617-732-8068 or e-mail bsv@bics.bwh.harvard.edu DRUG STUDIES AIT-082 For people with mild to moderate Alzheimer’s over age 50. Study lasts six months and requires seven vis- its, accompanied by a caregiver. The goal of this study is to examine the influence of this agent, which is not a cholinergic drug, on nerve cells in Alzheimer’s. Travel expenses paid. Ⅲ Boston Clinical Research Center (Wellesley) Ⅲ Contact: Karen Andrews at 781-431-1158 x30
For people ages 55-70 with mild (mild memory loss). Study will last up to seven months, and a care- giver must attend three of the six required hospital visits. The goal of this multi-center, randomized, double-blind, placebo-controlled study is to evaluate the efficacy and safety of donepezil hydrochloride (E2020) in treating cognitive impairment. Parking paid. Ⅲ UMass Memorial Health Care (Worcester) Ⅲ Contact: Carolyn Lester at 508-856-2529 or e-mail carolyn.lester@banyan.ummed.edu Estrogen For people with dementia over age 60 who exhibit aggressive behavior and who have a reliable caregiv- er. Experiment runs for nine weeks, with hospital vis- its every week. The goal of this study is to examine the use of estrogen to decrease aggressive behavior in elderly patients with dementia. Ⅲ McLean Hospital (Belmont) Ⅲ Contact: Dr. Helen Kyomen at 617-855-3458 or e-mail hkyomen@warren.med.harvard.edu NDD094 For people over age 55 with early to mid-stage probable Alzheimer’s who have a reliable caregiver. Study spans eight months and requires ten 1 to 2- hour visits to the Memory Unit. Subjects must stop taking any cholinergic medications (such as Aricept) one month prior to study. The goal of this study is to assess the safety and effectiveness of this drug, devel- oped by Novartis, in treating Alzheimer’s. Parking paid.
Ⅲ Brigham & Women’s Hospital Memory Disorders Unit (Boston) Ⅲ Contact: Dr. Reisa Sperling at 617-732-8060 or e-mail reisa@bwh.harvard.edu Galantamine For people with early to mid-stage probable Alzheimer’s who have a reliable caregiver. Study spans five months and is being conducted at three sites. Subjects cannot take any other Alzheimer treat- ments (such as Aricept or estrogen) during the study. The goal of this placebo controlled study is to evalu- ate the safety and efficacy, under a slow-titration reg- imen, of the drug galantamine in the treatment of Alzheimer’s. Ⅲ Contacts: UMass/Worcester: Carolyn Lester at 508-856-3081 Boston Clinical Research Center: Irene Axelrod at 781-431-1168 Brigham & Women’s Hospital: Claire Corwin at 617-732-8066 Vitamin E and Donepezil HCL (Aricept) For people over age 50 with early to mid-stage probable Alzheimer’s who have a reliable caregiver. Study spans three years. The goal of this randomized, double-blind, placebo-controlled national drug trial is to delay the clinical progression from mild cogni- tive impairment. Ⅲ Mass. General Hospital (Boston) Ⅲ Contact: National toll-free line at 888-455-0655 or Marsha Tennis at 617-726-1610 or e-mail tennis@helix.mgh.harvard.edu
For individuals or families with a positive history of Alzheimer’s in two or more blood relatives. Blood samples will be needed from all subjects. Requires a 30-minute, one-time hospital visit. The goal of this study is to examine genetic links to Alzheimer’s. Ⅲ Brigham & Women’s Hospital (Boston) Ⅲ Contact: Dr. Dennis Selkoe at 617-525-5200 or e-mail selkoe@cnd.bwh.harvard.edu
For people who have a living family member with an Alzheimer diagnosis and a living sibling who is also willing to participate. Time required is two weeks. The goal of this five-year, multi-institutional study is to evaluate the association between genetic and non-genetic risk factors for Alzheimer’s disease. Travel expenses and parking paid. Ⅲ Boston University School of Medicine Ⅲ Contact: Dr. Lindsay A. Farrer at 617-638-5393 or e-mail mirage@bu.edu
For people diagnosed with Alzheimer’s disease and their sibling(s). Blood samples will be needed from all subjects. Requires a short, one-time hospital visit. The purpose of this study is to look at genetic links to Alzheimer’s. Parking paid. Ⅲ UMass Memorial Health Care (Worcester) Ⅲ Contact: Carolyn Lester at 508-856-2529 or e-mail carolyn.lester@banyan.ummed.edu
For adult offspring of living or deceased AD patients. Requires four 1-2 hour meetings over six months. The goal of this study is to provide risk assess- ment and genetic counseling, preferably to subjects living within 100 miles of Boston, New York City or Cleveland, who do not exhibit any signs of dementia. Ⅲ Boston University School of Medicine Ⅲ Contact: Dr. Robert Green or Tamsen Brown at 617-638-5355 NORMAL AGING STUDIES Cognitive Assessment of Normal Aging For healthy people over age 40. The goal of this study is to examine the processes involved in normal aging. Requires about 1 hour of testing at the Medical Center. Parking paid. Ⅲ UMass Medical Center (Worcester) Ⅲ Contact: Dr. Joan Swearer at 508-856-5668
For two different groups: 1) healthy people over age 60 to serve as control subjects; and 2) people with mild dementia over age 60. Requires two yearly tests lasting 21/2 hours at the subject’s home, at B.U. or at the VA Hospital in Bedford. The goal of this study is to collect information for a database of infor- mation on aging. Compensation: $25.00 plus a gift certificate to Stop ’n Shop. Ⅲ Boston University Alzheimer’s Disease Core Center Ⅲ Contact: Dr. Neil W. Kowall at 781-687-2927 or e-mail nkowall@bu.edu Genetic Epidemiology in AD: The MIRAGE Study (See “Genetic Studies.”) Memory Distortion in Dementia For healthy people over age 80. Must complete a series of tests for 2 1 / 2 -3 1 / 2 hours either at the hospital or at home. The goal of this study is to examine memory distortion for diagnostic purposes. Compensation: $10/hr and parking. Ⅲ Brigham & Women’s Hospital (Boston) Ⅲ Contact: Dr. Andrew Budson at 617-732-8068 or e-mail aebudson@bics.bwh.harvard.edu Recall: Forgetfulness— What’s Normal and What’s Not For people interested in memory loss problems who are not past or current caregivers of someone with identified memory loss. Requires a 1 1 /
hour interview, viewing and testing the computerized “Forgetfulness Program,” and a brief follow-up phone interview after six months. The goal of this study is to evaluate the usefulness of a new educa- tional tool (a CD-ROM disk) designed to teach peo- ple how to distinguish between normal forgetfulness and serious memory loss problems. Ⅲ Hebrew Rehabilitation Center for Aged (Boston) Ⅲ Contact: Dr. Barbara Tarlow at 617-363-8548 or e-mail tarlow@athena.hrca.harvard.edu
For donation of post-mortem brain tissue for research purposes in a range of projects approved by the Center, and to examine the tissue to confirm diagnoses of Alzheimer’s disease. Pre-registration required. Ⅲ MGH/Neuropathology Core (Boston) Ⅲ Massachusetts Alzheimer’s Disease Research Center Ⅲ Contact: Dr. Tessa Hedley-Whyte at 617-726-5154 AD Brain Tissue Research For donation of post-mortem brain tissue from people with a positive family history of Alzheimer’s disease for research purposes. Pre-registration required. Ⅲ Brigham & Women’s Hospital (Boston) Ⅲ Contact: Dr. Dennis Selkoe at 617-525-5200 or e-mail selkoe@cnd.bwh.harvard.edu Diagnostic Pathology of AD For donation of post-mortem brain tissue for research associated with dementia, and to examine the tissue to confirm diagnoses of Alzheimer’s disease. Ⅲ Bedford VA Medical Center Ⅲ Contact: Dr. Ann McKee at 781-687-2913 Harvard Brain Tissue Resource Center For donation of post-mortem brain tissue as part of a national program to collect and distribute the tissue for approved research purposes, and to exam- ine the tissue to confirm diagnoses of Alzheimer’s disease. Pre-registration recommended. Ⅲ McLean Hospital (Belmont) Ⅲ Contact: Dr. Francine Benes at 1-800-272-4622 or 1-800-BrainBank
Medicine and Science Dementia Research Studies: A Guide for People with Memory Impairments and Their Caregivers A lzheimer’s disease is a progressive, debilitating brain disorder affecting an estimated four million Americans. Symptoms include impaired memory, thinking and behavior. Alzheimer’s is the most common type of dementia, and the fourth leading cause of death among adults in the U.S. Although there is currently no cure, the past decade has seen stunning successes in the search for a cause. Some probable causes include genetic predisposition, abnormal protein build- up in the brain, and environmental effects. With continued research, the future holds exciting possibilities for treatment.
There are two types of research: basic and therapeutic. Basic research improves knowledge of the nature and cause of the disease. Therapeutic research investigates treatment and pre- vention strategies. Research studies are designed to find new and better ways to help patients and their families by answering specific scientific questions, and by evaluating the safety and effectiveness of medical procedures or medications. Why Are Research Studies Important? We would all like people with Alzheimer’ disease and other dementing illnesses to receive effective treatments. We want procedures and drugs that work, that are safe, and cost as little as possible. Through research studies, scientists are able to learn what works best, and share this knowledge with those who need it the most. Advances in medicine and science are the direct result of new ideas and approaches developed through research. Armed with new findings about the onset and progression of Alzheimer’s, scientists from disciplines such as molecular genetics, neurology and pharmacology are working together to pinpoint the true cause of this disease and to develop more effective ways to treat it. Should You Download 410.63 Kb. Do'stlaringiz bilan baham: 
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