BRANDEIS UNIVERSITY Health: Science, Society and Policy HSSP 110A: Integrative Seminar on Health Spring 2016 Monday and Wednesday, 5:00 to 6:20 p.m. Section 4: Alzheimer’s Disease Walter Leutz, PhD Heller School 215 Schneider x6-3934 leutz@brandeis.edu Office Hours: Wednesdays, 2-5 PM Classroom: _______________ COURSE DESCRIPTION “S/he has Alzheimer’s.” These seem like the most devastating words you can hear about your father or mother or grandparent – or yourself. Prevailing wisdom says that it’s downhill from now on. There’s no cure and here come loss of self, loss of control, becoming a burden to your family, and in the U.S. – the possibility of spending all your assets on expensive care. Is Alzheimer’s Disease (AD) really a slow-drip sentence of decline and tragic loss, or are there more hopeful paths? How fast is neuroscience moving to improve understanding of AD? Will science soon find ways to cure or even prevent AD? Will drug regimens follow and will the drugs be affordable? What are the known risk factors for AD, and are there things that individuals and public health efforts can do to lower risks? What are the impacts of AD on family members, and are there effective ways to reduce caregiver burden and help families to care for their loved ones with AD? Is the care covered by public and private health insurance? What are the most effective new approaches to long-term services and supports, and what are the policy supports and barriers to seeing them implemented? These are the kinds of questions we will explore in this capstone class. The instructor’s ties with local scientists, professionals, and provider organizations will be used to facilitate face-to-face interviews and field experiences for students. At the end of the semester, students will make recommendations for AD research, practice, and policy. The format of this course is based on a “problem based learning” (PBL) format. This will require students to be active learners for the course. An initial list of background reading will be supplied, after which the work will be student-directed. Students will decide (with guidance) how to tackle the problem of Alzheimer’s Disease in America and learn about it in all its “science” “society” and “policy” aspects. Students will be responsible (again with guidance) to generate readings and discussion materials for most classes. The instructor will suggest and DRAFT 1/4/16 1 recruit a preliminary list of outside speakers, which will be open to discussion and possible supplementation by students. With the PBL approach, students will use all resources available to obtain information about the problem at hand depending on their section. This means exploring the scientific literature, contacting experts, evaluating claims-makers and stakeholders, locating and evaluating advocacy or self-help groups, etc. Students will be asked to develop a group presentation on a significant approach to solving specific aspects to the problem. Based on these presentations, each student will develop an Op-Ed making a concise argument for a specific solution. In-class time will be made available for some of the group work. Grading will be based on participation (class attendance, active classroom participation, and online discussion participation) and evaluation of written and presentation material. COURSE OBJECTIVES 1. To examine Alzheimer’s Disease, an important health problem in terms of “Science, Society and Policy.” 2. To bring together information and perspectives students learned in other HSSP courses. 3. To learn to work together as teams to research and present information. 4. To identify key issues, major debates and leading organizations focused on Alzheimer’s Disease. 5. To learn to independently use a range of resources to interrogate the issues around the problem. 6. To present verbal and written findings to instructor and class in a coherent and professional style. ASSIGNMENTS, COURSE GRADING The final grade will be determined as follows: 25% Class participation/preparation 10% Two reflective essays 25% Group presentation and annotated PowerPoint 15% Field Interview and reflection 25% Op-Ed on a solution to a major Alzheimer’s Disease issue 25% Class participation/preparation: The success of this class depends on full preparation by all students for each class, demonstrated by participation and contribution to class discussions, and participation in discussions in the LATTE Forum throughout the semester. There are different styles for demonstrating class participation and preparation and no one style is preferred over others. The goal is to demonstrate engagement and investment in the class and evidence of interest in the material under study. Attendance is required and recorded at every class. Absences will be excused only for exceptional circumstances. If an absence is anticipated, please request it in writing by DRAFT 1/4/16 2 submitting an e-memo to the professor no later than the day before the scheduled class. If an unanticipated need to be absent arises, please submit a written memo or email explaining the circumstances as soon as possible before the next class. 10% Two reflective essays: At the beginning of the semester, each student will write a short essay (no longer than two double-spaced pages) to address the following: 1) What do you know about Alzheimer’s Disease? 2) What do you think are the consequences of AD for individual adults, individual children, and society overall? 3) Do you know of any effective approaches to prevent or treat the disease? 4) What do you predict will be recommendations to address this issue? This essay is due January 20 by 5:00 pm. There are no wrong answers here, but rather the goal is to consider your baseline knowledge and thoughts as the class starts. Near the end of the semester, each student will write a second essay on: 1) What have you learned about AD that was new or unexpected? 2) What was consistent with your expectations? 3) How do you think that the issue of AD will be a factor in your professional career? This essay is due April 13 by 5:00 pm. Each of these essays will be graded as pass if turned in on time and show a thoughtful effort. 25% Group presentation and annotated PowerPoint: Much of the class will be designed and led by the students themselves. In small groups (about 5 students), students will organize and lead a class session. The groups will be responsible for researching the topic, assigning background reading to their peers, presenting their findings, and leading class discussion on how this topic fits with the overall course theme. Background reading should be forwarded to the professor at least two class sessions prior to presentation in order for it to be posted on LATTE and available to other students in time for them to prepare. Each student will receive an individual grade based on a combination of the following: o Group presentation o Quality of Power Point including notes (revised final version based on feedback due two days after in-class presentation). This PowerPoint with notes will be a resource for everyone in the class for the OpEd assignment. o Peer assessment of self and of team members on: reliability/responsibility, participation in group work, intellectual contribution, contribution to annotated PowerPoint (Team Peer Assessment Form and Instructions on Latte) o Whole class assessment of presentation and Power Points through an online survey -- due two days after the presentation (See specific link for feedback DRAFT 1/4/16 3 survey under the date of each presentation. Students are required to post feedback for each of the four teams they are not members of). In preparing for the group presentation, each team should schedule a meeting with the instructor. In addition, after you have developed a draft of the PowerPoints and plan for presentation, each team is required to meet with the Brandeis Experiential Learning staff to consult on your presentation (http://www.brandeis.edu/experientiallearning/contact.html) 15% Field Interview and Reflection: The context and nuance of the problem of and solutions to Alzheimer’s Disease cannot be found exclusively in the published, peer-reviewed literature. It is important to extend beyond the classroom and absorb the experiences those with first-hand experience and expertise. Either individually or in pairs, students will be required to select and interview a person who can offer unique insights. These interviewees can range from a scientist studying Alzheimer’s, any of several types of clinicians (physician, nurse, social worker) who treat AD clients, makers of drugs for AD, advocates (e.g., from the Alzheimer’s Association), or managers of services for individuals with AD. Before interviewing, each student (or two person team) is expected to hand in a profile of interviewee, including their bio, their organization, how the individual connects to the topic at hand, and an interview guide/questionnaire. Once approved by the professor, the student(s) will conduct an interview by phone or in person (in person is preferable) and then present their findings to the class. The class presentation should take 6-7 minutes, allowing ~3 minutes for questions at the end. The in-class presentation should include a very brief bio, brief explanation of interview subject’s relevance to Alzheimer’s, as well as highlights of what you found most interesting in the interview, what you learned, and your feelings about how the interview went. Each student separately will write a 2-3 page “reflection” of their interview, outlining important findings, key quotes (paraphrased is acceptable), and a discussion of how the interview fits within the larger themes of the course; the interview guide should be included as an addendum. Please obtain all appropriate permissions before conducting the interview. The “reflection” is due at 5 PM on the day you present. 25%: Op-Ed or Issue Brief on Solution to addressing AD: This assignment is to draft an opinion editorial piece or an Issue Brief of between 750 and 800 words focused on a path for addressing AD at the local, state, and/or national level. The goal will be to develop a concise and cogent argument using factual information and/or data. The piece should catch the reader’s attention and be persuasive. You can identify a “dream target” newspaper based on the content of your Op-Ed. For example, a locally focused solution might appropriately target at a local or regional newspaper. A Policy Brief might focus on a policy-making audience. Use the PowerPoint (annotated pages DRAFT 1/4/16 4 particularly) as a source of information. You are not limited to your own team’s solution. Your Op-Ed or Policy Brief should be uploaded on Latte by 5 pm on April 13. Also please bring a hard copy to class that day. When you save the document, include your name, Op-Ed/Policy Brief, brief title, and version/date/#of words in the header. The word limit is real, and papers must be on time. In class on April 13, we will randomly assign you a colleague’s paper to critique and to discuss in class on April 20. Bring in a hard copy of your critique to share with the author. Authors will also have independent feedback from the instructor and Teaching Assistant. Please revise your Op-Ed/Policy Brief and upload a final version by 5:00 pm on May 2. LIBRARY RESEARCH and CITATION PROTCOL All students must know how to research library and web resources and proper citation protocol. When in doubt, please consult a reference librarian or the Instructor and Teaching Assistant. DISABILITY STATUS If you are a student with a documented disability on record at Brandeis University and wish to have a reasonable accommodation made for you in this class, please see me immediately. ACADEMIC INTEGRITY Academic integrity is central to the mission of educational excellence at Brandeis University. Each student is expected to turn in work completed independently, except when assignments specifically authorize collaborative effort. It is acceptable to use the words or ideas of another person provided the source is properly acknowledged. This means that you must use footnotes and quotation marks to indicate the source of any phrases, sentences, paragraphs or ideas found in published volumes, on the internet, or created by another student. Violations of the Brandeis University policy on academic integrity may result in failure in the assignment or course, and could end in suspension from the University. f you are in doubt about the instructions for any assignment, ask for clarification. (See Rights & Responsibilities Handbook (http://www.brandeis.edu/studentlife/srcs/rr/index.htmlI) CLASSROOM ETIQUETTE Classes will start promptly. Please refrain from parallel conversations, using any kind of noiseemitting devices, using your laptop for anything other than class-related activity, or using or taking out your cell phone at all without prior permission from the instructor. COMMUNICATIONS/ SNOW POLICY A class mailing list is included on LATTE for students to communicate with each for the team project. Generally, in the event of a snow day, please assume that we will hold an online session during the regularly scheduled class time, utilizing Blue Jeans. For student DRAFT 1/4/16 5 presentations, your PowerPoint can be posted and presented using Blue Jeans. For all guest speakers, there will be a back-up day scheduled in case the campus is closed. https://bluejeans.com/1571119490/ To use a regular phone for audio (rather than a microphone in your computer), mute your speakers in the meeting and use this call in: Call in number -- to be supplied Meeting ID: to be supplied Participant Passcode: to be supplied CLASS BY CLASS COURSE OUTLINE The syllabus is subject to changes during the semester. Updates will be announced to class and listed on LATTE; the schedule as listed on LATTE supersedes the one listed here. Session # & Date 1. Wednesday January 13 (Monday January 18 – no class Martin Luther King Day) 2. Wednesday January 20 – “Brandeis Monday” 3. Monday January 25 4. Wednesday January 27 5. Monday February 1 6. Wednesday February 3 7. Monday February 8 8. Wednesday February 10 Topic/Activity Introduction (Joint) and introduction (section) --Lecture & discussion of readings on science of AD, risk factors, and drug treatments (First reflective essay due) Lecture & discussion of readings on prevention, treatment, caregiving, and policy for AD Brainstorm class mission and topics Team Assignments (5 groups), discuss format/grading, get started in class In-class work in assigned groups (instructor rotates) Presentation Skills – Dan Langenthal and Alyssa Canelli (entire cohort) Interview Skills – Sara Shostak (entire cohort) Monday February 15 – vacation Wednesday February 17 vacation 9. Monday February 22 ----In-class work in assigned groups (instructor rotates) Outside speaker 10. Wednesday February 24 DRAFT 1/4/16 6 11. Monday February 29 12. Wednesday March 2 13. Monday March 7 14. Wednesday March 9 15. Monday March 14 16. Wednesday March 16 17. Monday March 21 18. Wednesday March 23 Monday March 28 – vacation 19. Wednesday March 30 20. Monday April 4 21. Wednesday April 6 22. Monday April 11 23. Wednesday April 13 24. Monday April 18 25. Wednesday April 20 Monday April 25 - vacation Wednesday April 27 – vacation 26. Monday May 2 – last day of class Speakers – Mike Doonan and Max Pearlstein(entire cohort) In-class work in assigned groups (instructor rotates) Speaker – To be decided Student presentation – Group 1 Student presentation – Group 2 Student presentation – Group 3 Student presentation – Group 4 Student presentation – Group 5 --Field Interview Presentations Field Interview Presentations Field Interview Presentations Field Interview Presentations Working Session, Regroup to Discuss All Policy Options (Assignment 4 due: Op-Ed) Outside speaker Discussion of students’ Op-Eds (Second reflective essay due) ----Capstone Celebration (Final revision of Op-Ed/Policy Paper due at 5pm) Team Topics and Presentations Date Topic Team members DRAFT 1/4/16 7 Interview Presentation Schedule Date Student(s) Interviewee READINGS AND OTHER RESOURCES BACKGROUND MATERIALS – You don’t need to read/view all these background materials before the first lecture on January 20, but they will also be useful to come back to as you go through the semester. These three links are a good place for a brief introduction to AD– two on the neuroscience and one on the costs and family impacts. NIH science/chemical intro video: https://www.nia.nih.gov/newsroom/resources/images-and-video AA slides of map of brain and transmission and decline: https://www.alz.org/braintour/plaques_tangles.asp Caregiving/families and cost of AD- PBS Newshour video http://video.pbs.org/video/2365593450/ This 67-page report from the Alzheimer’s Association is a good overall introduction to AD, including prevalence, prevention, costs, caregiving and more. Alzheimer’s Association. (2015). "2014 Alzheimer’s Disease Facts and Figures." Alzheimer’s & Dementia 10(2). (PDF in LATTE) In 2009, the National Institute on Aging and HBO produced the Alzheimer’s Project, which consists of 5 films (for hour-long TV slots) and other shorter videos. They portray the science (in two segments), the progression of the disease, caregiving, and the DRAFT 1/4/16 8 perspective of a child or grandchild of a person with AD. Link: https://www.nia.nih.gov/alzheimers/alzheimers-project-hbo This 55-page report from NIA and NIH provides the latest update from the government on the status of research findings and initiatives on AD. NIA/NIH: 2014–2015 Alzheimer’s Disease Progress Report: Advancing Research Toward a Cure. https://www.nia.nih.gov/alzheimers. (also PDF in LATTE) January 20, 2016 – Introduction to Class and to the Science of AD Here’s an article about the neuroscience of AD. Raskin, J., J. Cummings, J. Hardy, K. Schuh and R. A. Dean (2015). "Neurobiology of Alzheimer's Disease: Integrated Molecular, Physiological, Anatomical, Biomarker, and Cognitive Dimensions." Curr Alzheimer Res 12(8): 712-722. (PDF in LATTE) Here’s a more in-depth article about risk factors for AD. Lista, S., B. Dubois and H. Hampel (2015). "Paths to Alzheimer's disease prevention: from modifiable risk factors to biomarker enrichment strategies." J Nutr Health Aging 19(2): 154-163. (PDF in LATTE) Here’s an article about drugs for AD. Rafii, M. S. and P. S. Aisen (2015). "Advances in Alzheimer's disease drug development." BMC Med 13: 62. (PDF in LATTE) January 25, 2016 – Prevention and Treatment, Care Giving, and Policy Here are two articles about services. Lin, S. Y. and F. M. Lewis (2015). "Dementia friendly, dementia capable, and dementia positive: concepts to prepare for the future." Gerontologist 55(2): 237-244. (PDF in LATTE) Gaugler, J. E., F. Yu, H. W. Davila and T. Shippee (2014). "Alzheimer's disease and nursing homes." Health Aff (Millwood) 33(4): 650-657. (PDF in LATTE) Here are two articles about caregiving. DRAFT 1/4/16 9 Epstein-Lubow, G. (2014). "A family disease: witnessing firsthand the toll that dementia takes on caregivers." Health Aff (Millwood) 33(4): 708-711. (PDF in LATTE) Cheng, S. T., E. P. Mak, R. W. Lau, N. S. Ng and L. C. Lam (2015). "Voices of Alzheimer Caregivers on Positive Aspects of Caregiving." Gerontologist. (PDF in LATTE) Here are two articles about cultural differences and AD. Barnes, L. L. and D. A. Bennett (2014). "Alzheimer's disease in African Americans: risk factors and challenges for the future." Health Aff (Millwood) 33(4): 580-586. (PDF in LATTE) Dong, X. and E. S. Chang (2014). "Lost in translation: to our Chinese patient, Alzheimer's meant 'crazy and catatonic'." Health Aff (Millwood) 33(4): 712715. (PDF in LATTE) Here are two articles about policy and AD. Hoffman, D. (2014). "Alzheimer's disease legislation and policy--now and in the future." Health Aff (Millwood) 33(4): 561-565. (PDF in LATTE) Lin, S. Y. and F. M. Lewis (2015). "Dementia friendly, dementia capable, and dementia positive: concepts to prepare for the future." Gerontologist 55(2): 237-244. (PDF in LATTE) February 10 – Op-Ed Examples Jennifer Braisted, Miami Herald, 8/2/15: Alzheimer’s disease is a woman’s issue. Don Gale, Salt Lake Tribune, 9/29/15: If we can go to Pluto, we can solve Alzheimer’s — if we want to. Sandra Day O’Connor, Stanley Prusiner, and Ken Dychwald, 10/27/10, NY Times. The Age of Alzheimer’s. February 24 & April 18 – Speaker-related readings (to be assigned) DRAFT 1/4/16 10 DRAFT 1/4/16 11