The Boston University Alzheimer’s Disease Center (BU ADC) is involved in a variety of clinical, research, and educational activities. These activities are funded by grants awarded from the National Institutes of Health and non-profit organizations. Often, research study participants, families, or community leaders wish to contribute to the fight against Alzheimer’s disease (AD), and these private donations are equally important to advancing the BU ADC’s mission. The BU ADC welcomes honorary and memorial donations, as these gifts are an excellent way to pay tribute to a family member or friend while making a contribution to the advancement of research in the field of AD. Please call Harriet Kornfeld at 617-638-5676 or visit us online at www-staging.bu.edu/alzresearch if you would like to make a donation. The BU ADC would like to recognize the following private donors for their greatly appreciated contributions:
In honor of Sylvia Byorkman
Adele A. Madden
In memory of Benjamin Chinitz
In honor of Michael Chinitz
Kim and Thomas Wendt
In memory of Helen Klein
In memory of Kenneth M. Lumsden
In memory of Robert V. Minchello
In memory of Morris Trent Phipps
Sue Wicker Bartolino
Dr. Larry Chesley
Marion and Janan Green
Dr. Rhys Strasia
David and Alicia Woodburn
In memory of Mary Slade
Kim and Thomas Wendt
In memory of Juliette Sombaert
In memory of Robert J. Therrien
In memory of Molly Wagner
Karen and Steven Sisselman
J. Malcolm Beasley
The Boston University Alzheimer’s Disease Center (BU ADC) extends a warm welcome to new staff members: Meenakshi Chivukula, psychometrician for the Health Outreach Program for the Elderly (HOPE) Study; Erin Klopfenstein, senior research coordinator and assistant to Dr. Robert Green; Dorothy Marshall, the new BU ADC African American Outreach Coordinator; and Adrienne Robinson, research assistant to Dr. Angela Jefferson and the BU ADC Education & Information Transfer Core (EITC).
BU ADC EITC co-investigator, Kathy J. Horvath, PhD, RN, recently received funding to conduct a clinical translation study entitled Implementation of the Evidence-based New York University (NYU) Caregiver Intervention for Dementia Family Caregiver Support. Developed in collaboration with Mary Mittelman, DPh, EITC Director at the NYU ADC, the study is funded by the Department of Veterans Affairs (VA) for two years. The goal of the project is to implement an evidence-based dementia caregiver support program in two VA settings and evaluate strategies necessary to add this intervention to clinical services.
Congratulations to Dr. Andrew Budson, who assumed the position of Deputy Chief of Staff at the Boston VA Healthcare System on March 1st. Dr. Budson formerly served as the Director of the Geriatric Research, Education, and Clinical Center (GRECC) at the Edith Nourse Memorial Veterans Hospital in Bedford, MA.
Congratulations to Dr. Peter Morin, who has been appointed GRECC Director at the Edith Nourse Memorial Veterans Hospital.
Congratulations to Dr. Robert Stern, who was appointed as the BU ADC Clinical Core Director on April 1st. Dr. Stern replaces Dr. Robert Green, who stepped down to devote more time to his expanding original research program in gene discovery and genetic risk assessment in AD. Dr. Green will continue in his leadership role as the BU ADC Associate Director.
Congratulations to Dr. Angela Jefferson, who was recently asked to fill a vacated term on the Education and Information Transfer Core Steering Committee for the National Alzheimer’s Coordinating Center. Dr. Jefferson will hold the position through fall of 2011.
Many thanks and best wishes to ADC staff member Natalie Joffe, who recently left the HOPE Study to pursue a position in cancer advocacy in Seattle, WA.
Thank you and best wishes to our recent student trainees: Michael Dombek, who completed dual bachelor’s degrees in biology and human physiology at Boston University and is currently applying to medical school; and Brittany Masatsugu, who completed her master’s degree in psychology at Boston University and has left to pursue career opportunities on the west coast.
Activities of Daily Living in Mild Cognitive Impairment
Dr. Angela Jefferson and colleagues recently investigated relations between brain magnetic resonance imaging markers of cerebrovascular disease and Alzheimer’s disease (AD) in individuals with mild cognitive impairment (MCI). Preliminary findings from the Heart & Brain Aging Study suggest increased white matter hyperintensities, but not hippocampal volume, are associated with worse functional status. These findings, which were presented at the recent International Neuropsychological Society meeting, are consistent with evidence that executive dysfunction, rather than memory impairment, is associated with functional decline and conversion from MCI to AD.
Blood Pressure Treatment and Dementia Prevention
Dr. Benjamin Wolozin recently published a study in British Medical Journal showing that combined use of two blood pressure medications that prevent angiotensin signaling (that is, angiotensin receptor blockers and ACE inhibitors) is associated with a 50% lower incidence of dementia and, for those with dementia, a 70% lower rate of nursing home admission. Previous studies indicate that angiotensin receptor blockers are particularly effective at preventing vascular damage induced by amyloid β, a protein that accumulates in AD. Dr. Wolozin’s findings suggest that this combination of blood pressure medications protects against cognitive decline by reducing neuronal damage associated with vascular dysfunction and stroke.
“I know what you told me, but this is what I think”
Dr. Robert Green, Erin Linnenbringer, MS, CGC, and the REVEAL Study Group recently published a study in Genetics in Medicine evaluating AD risk perceptions among individuals who accurately recalled their genetic-based risk assessment. As part of the REVEAL Study, 246 unaffected relatives of individuals with AD were given a genetics-based risk assessment for AD. Out of 158 individuals who accurately recalled the risk assessment they were given by study investigators, nearly half believed their actual risk was different than what they had been told. These results indicate that individuals who are able to accurately recall their risk assessment do not necessarily take communicated risk estimates at face value.
Impact of AD Genetic Risk Disclosure on Dietary Supplement Use
Dr. Robert Green, Dr. Jacqueline Vernarelli, and the REVEAL Study Group recently published a study in the American Journal of Clinical Nutrition on the impact of risk disclosure for AD on dietary supplement use. They found that after receiving a risk assessment for AD, 16% of all participants in the study reported a change in dietary supplement use. Individuals who learned they carry the AD risk-increasing apolipoprotein (APOE) ε4 genotype were more likely to report an increase in dietary supplement use than those who learned they were APOE ε4-negative.
Late-Life Depression and AD
It is well-known that APOE ε4 is a major genetic risk factor of late onset AD. However, 50% of AD patients do not carry APOE ε4, suggesting other risk factors in the pathogenesis of AD. Using a homebound elderly population in the Boston area, Dr. Wendy Qiu and her research team have found that non-APOE ε4 carriers with depression have similar biomarkers in their blood (for example, low Aβ42 and a high Aβ40/Aβ42 ratio in plasma) as APOE ε4 carriers. Because a high percentage of these depressed elderly individuals have cognitive impairment, the researchers hypothesize that amyloid-associated depression defined by low plasma Aβ42 and high plasma Aβ40 might be a prodromal stage of AD even in the absence of APOE ε4. The finding was recently published in Alzheimer’s Disease & Associated Disorders and may offer an additional target for the prevention and intervention of AD. Dr. Qiu has received an R01 grant from the National Institute on Aging to further study the relationship between late-life depression and AD.
Too often, patients and their family members are told by their doctors that the patient has been diagnosed with “a little bit of dementia.” They leave the doctor’s visit with a feeling of relief that at least they don’t have Alzheimer’s disease (AD). There is great confusion about the difference between “dementia” and “AD.” The confusion is felt on the part of patients, family members, the media, and even healthcare providers. This article provides information to reduce the confusion by defining and describing these two common and often poorly understood terms.
“Dementia” is a term that has replaced a more out-of-date word, “senility,” to refer to cognitive changes with advanced age. Dementia includes a group of symptoms, the most prominent of which is memory difficulty with additional problems in at least one other area of cognitive functioning, including language, attention, problem solving, spatial skills, judgment, planning, or organization. These cognitive problems are a noticeable change compared to the person’s cognitive functioning earlier in life and are severe enough to get in the way of normal daily living, such as social and occupational activities.
A good analogy to the term dementia is “fever.” Fever refers to an elevated temperature, indicating that a person is sick. But it does not give any information about what is causing the sickness. In the same way, dementia means that there is something wrong with a person’s brain, but it does not provide any information about what is causing the memory or cognitive difficulties. Dementia is not a disease; it is the clinical presentation or symptoms of a disease.
There are many possible causes of dementia. Some causes are reversible, such as certain thyroid conditions or vitamin deficiencies. If these underlying problems are identified and treated, then the dementia reverses and the person can return to normal functioning. However, most causes of dementia are not reversible. Rather, they are degenerative diseases of the brain that get worse over time. The most common cause of dementia is AD, accounting for as many as 70-80% of all cases of dementia. Approximately 5.3 million Americans currently live with AD. As people get older, the prevalence of AD increases, with approximately 50% of people age 85 and older having the disease. It is important to note, however, that although AD is extremely common in later years of life, it is not part of normal aging. For that matter, dementia is not part of normal aging. If someone has dementia (due to whatever underlying cause), it represents an important problem in need of appropriate diagnosis and treatment by a well-trained healthcare provider who specializes in degenerative diseases.
In a nutshell, dementia is a symptom, and AD is the cause of the symptom. When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living. Most of the time, dementia is caused by the specific brain disease, AD. However, some uncommon degenerative causes of dementia include vascular dementia (also referred to as multi-infarct dementia), frontotemporal dementia, Lewy Body disease, and chronic traumatic encephalopathy. Contrary to what some people may think, dementia is not a less severe problem, with AD being a more severe problem. There is not a continuum with dementia on one side and AD at the extreme. Rather, there can be early or mild stages of AD, which then progress to moderate and severe stages of the disease.
One reason for the confusion about dementia and AD is that it is not possible to diagnose AD with 100% accuracy while someone is alive. Rather, AD can only truly be diagnosed after death, upon autopsy when the brain tissue is carefully examined by a specialized doctor referred to as a neuropathologist. During life, a patient can be diagnosed with “probable AD.” This term is used by doctors and researchers to indicate that, based on the person’s symptoms, the course of the symptoms, and the results of various tests, it is very likely that the person will show pathological features of AD when the brain tissue is examined following death. In specialty memory clinics and research programs, such as the BU ADC, the accuracy of a probable AD diagnosis can be excellent. And with the results of exciting new research, such as t that being conducted at the BU ADC, the accuracy of AD diagnosis during life is getting better and better.
This contribution was made by Dr. Robert Stern, Director of the BU ADC Clinical Core.
The Boston University Alzheimer’s Disease Center (BU ADC) hosted the Boston premiere screening of “I Remember Better When I Paint” on January 12, 2010. The film by Eric Ellena and BU ADC Board member Berna Huebner, and narrated by actress Olivia de Havilland, is the first international documentary about the positive impact of art and other creative therapies on people with Alzheimer’s disease (AD). It examines the way creative arts, such as painting or museum visits, can transcend the cognitive limitations of AD and other dementia disorders and allow patients an outlet to exercise their intact imaginations.
The concept for the documentary was inspired by Huebner’s mother, famous artist Hilda Goldblatt Gorenstein, known professionally as Hilgos. Suffering from the advanced stages of AD, Hilda was apathetic and non-communicative, until one day her daughter asked, “Mom, do you want to paint?” to which Hilda surprisingly replied, “Yes, I remember better when I paint.” With the encouragement of her family and visiting art students, Hilda started painting again, and her mood and speech soon began to improve. Hilda eventually created over 300 paintings during her final years in a nursing home.
The documentary includes interviews with renowned clinicians who explain how creative activities engage areas of the brain that are not damaged by AD and thus reawaken a sense of personality, identity, and dignity in patients. Among those clinicians featured in the documentary were BU ADC faculty members, Drs. Robert Green and Robert Stern. The film also features Yasmin Aga Khan, president of Alzheimer’s Disease International and daughter of Rita Hayworth, who suffered from AD before dying in 1987. Other prominent members of the field are featured in the film, advocating for increased use of creative therapies in adult day programs, nursing homes, and assisted living facilities.
Following the film screening, the BU ADC presented a panel discussion and took questions from the audience of more than 300 attendees. Panel members included: BU ADC faculty members Drs. Brandon Ally, Robert Green, and Robert Stern; Meg Curtis, who is married to BU ADC participant Charles “Skip” Curtis, who was featured in the film; President and Co-Founder of Hearthstone Alzheimer Care and the I’m Still Here Foundation, Dr. John Zeisel; and the film’s Co-Director and Producer, Berna Heubner. The group discussed current research and development of AD treatments, emphasizing the importance of creative therapeutics in achieving comprehensive care and improving quality of life.
“I Remember Better When I Paint” is presented by French Connection Films and the Hilgos Foundation. For more information about this film and additional projects supporting artistic creation in elderly populations, please visit the Hilgos Foundation website at www.hilgos.org. For those interested in viewing the film, “I Remember Better When I Paint” is now available on DVD and can be purchased online at amazon.com.
African Americans participate in medical research at much lower rates than their White peers both nationally and locally at the Boston University Alzheimer’s Disease Center (BU ADC). This disparity has important and potentially serious implications for the African American community because research findings may not apply to African American elders if they are underrepresented in studies. The BU ADC recognizes this problem and is committed to minimizing the gap by increasing African American elder participation in research.
The BU ADC Education & Information Transfer Core (EITC) is pleased to announce the launch of a brand new project intended to minimize research participation disparities between African American and White elders. Thanks to feedback from focus groups with fifteen African American HOPE participants held in the summer of 2008 and seven African American HOPE participants held in the winter of 2009, the EITC has developed a culturally relevant group discussion guide centered on African Americans, research, and Alzheimer’s disease (AD). The goal of the group discussion is to provide important information about how AD affects the African American community and to increase African American enthusiasm for and participation in medical research projects.
The development and implementation of the group discussion guide specifically for African Americans is one major effort by the BU ADC to put prior focus group feedback into practice. Dorothy Marshall, a recent addition to the BU ADC staff, will lead the new discussion groups. Ms. Marshall serves as the BU ADC African American Outreach Coordinator, and she is a candidate for a master’s degree at the BU School of Public Health with interests in health communication and racial disparities. The discussion groups and Ms. Marshall’s new position are funded by a special supplement grant awarded to Dr. Angela Jefferson, EITC Director, and the BU ADC as a part of the American Recovery and Reinvestment Act of 2009. Dr. Jefferson states, “This innovative project has the capacity to foster significant improvement in an area of disparity that needs our attention. We are delighted that the National Institute on Aging is committed to putting the necessary financial resources behind our efforts.”
The group discussion content covers topics that prior focus group participants identified as most relevant to African American elders. First, it presents an opportunity for African American HOPE participants to discuss and share ideas, concerns, and questions with their peers and the group leader. The discussion addresses barriers that prevent some African Americans from being involved in research, while showing why active participation in research is important and essential to the African American community as well as the scientific community at large. Second, it provides an opportunity for participants to learn more about AD and related research and ask questions about AD risk factors and prevention. Finally, it provides resources for those HOPE participants who want to get more involved or learn more about the services and research opportunities available at the BU ADC.
The first group discussion was held in January with seven HOPE participants and family members, and the feedback so far has been positive. Ms. Helen Young, a HOPE participant for seven years, states, “The discussion was useful, and I learned a lot of new information. A lot of good ideas were thrown around about how to get information out to the African American community. We were able to share our thoughts and ideas with other people in the group.” Her sister, Ms. Barbara Gumes, also a HOPE participant for seven years, states, “I really enjoyed the conversation. I enjoyed meeting other people in the group. The discussion made my mind more settled about what happens when you get older. This is important information for people to hear.” Dorothy Marshall, the group’s facilitator, is excited about the opportunity to hold additional groups and talk with HOPE participants about AD and research participation. She says, “I think that if people knew the impact they have when they get involved in research, participation rates would increase.”
Group discussions for African American HOPE participants are being held monthly. If you are an African American HOPE Study participant and you are interested in joining an upcoming group, please contact Dorothy Marshall at 617-414-8385 or firstname.lastname@example.org.
Wendy Qiu, MD, PhD, a board-certified psychiatrist and an Alzheimer’s disease (AD) researcher, will be joining the Boston University School of Medicine faculty in December 2009 as Assistant Professor of Psychiatry.
Dr. Qiu identified the role of insulin-degrading enzyme in the clearance of amyloid-beta peptides while working in Dr. Dennis Selkoe’s laboratory at Harvard Medical School. Recently, she and her research team have defined a possible depression subtype for a prodromal (or early) stage of AD. Dr. Qiu has been on the faculty at Tufts University School of Medicine for several years, and she recently received an R01 grant from the National Institute on Aging to support her research examining AD risk factors.
Dr. Qiu will be collaborating with the Boston University Alzheimer’s Disease Center (BU ADC) to study the role that depression and type 2 diabetes each play in developing AD.
Brandon Gavett, PhD, recently completed his neuropsychology post-doctoral training at the BU ADC, and he has been appointed to Instructor of Neurology at Boston University School of Medicine.
Dr. Gavett received his PhD in clinical psychology from the State University of New York at Albany, and he completed an internship in clinical psychology/neuropsychology at the Veterans Affairs Connecticut Health Care System in West Haven.
Dr. Gavett’s role at the BU ADC will primarily focus on research and clinical activities. He is seeking career development funding to conduct research and receive training in chronic traumatic encephalopathy as part of Boston University’s Center for the Study of Traumatic Encephalopathy. Dr. Gavett will be overseeing new and ongoing research projects within the BU ADC.