| Policy Studies and Applied Research | |||||||
| General Publications and Research Topics | The Occasional Long Term Care Policy Paper Series | ||||||
|
Long Term Care Advances THE LEADERSHIP IN AN AGING SOCIETY PROGRAM From the Editors
PRESENTING THE YEAR 2002 INTERNS MARVELL ADAMS, Graduate Student,
Health Administration, UNC-CH During my time at The Forest at Duke I was given the unique opportunity to learn a great deal about how long-term care is administered by a continuing care retirement community. The substance of this experience was more than I could have ever imagined it to have been. Being able to actually take part in nearly every aspect of a CCRC, from activities and dining services to administration and maintenance, was extremely beneficial. My preceptor felt, as did I, that it was important that I learn all the components that go into making a nursing facility function effectively. One reason for this is that, in many cases in order to obtain a license to become a nursing home administrator, one must take a test that requires that the administrator know about everything that goes into ensuring the proper care of a resident. My internship allowed me to do just this, and I feel that the experience has given me a better understanding of how a holistic approach is needed in order to administer a LTC facility. My overall objective was to understand how a nursing facility works, but I first tried to do so from the standpoint of a resident, not an administrator. This required me to spend 24 hours as a resident in the healthcare unit of The Forest. I reported to our social worker that morning and was treated as if I really was coming to live there. I was given a mock diagnosis (macular degeneration, along with a recent stroke) and taken to my room. I ate with the other residents in the dining room and even went to one of the activities (it was a sing-a-long that day). Because of my stroke I was unable to self-ambulate so I had to call for help every time I wanted to move out of bed or go to the restroom. This gave me a very real and very personal understanding of all the things that go into the care of a resident. It helped me to better understand the importance of things like proper staffing levels and seeing to it that all of the employees understand the unique needs of each individual resident. Overall, the main point taken away from my experience is that an administrator is doing only as good a job as his/her support staff. The Forest has an amazingly dedicated and caring staff, and it became apparent during my time there that the quality of care given there would not be as such without these individuals. Following the modified administrator in training program that my
preceptor helped me set up allowed me to become better prepared
to take on the role of administrator of a nursing facility. I strongly
believe that if the long-term care industry is to successfully care
for the growing number of elderly in this country, good leadership
like that exhibited at The Forest and other nursing facilities that
I visited this summer will be paramount. My hope is to be the
type of leader that ensures that quality care is a priority and
inspires those that work around me to be committed to this same
goal.
ANN ASPNES, Graduate Student, Clinical
Psychology, Duke This summer I worked with Dr. Linda George, Professor in the Department of Sociology at Duke University and Acting Director of the Center for the Study of Aging and Human Development. My internship had three main focuses: 1) expanding my base knowledge of social issues in late-life development, 2) planning a career in academic gerontology, and 3) developing a research design to examine depression in older persons. The summer began with a guided literature review of social psychological perspectives on aging in late-life. As a clinical psychology student, I had previously focused on the abnormalities in aging. Both Dr. George and I agreed that I needed to understand normal aging, so that I could interpret how aging is associated with mental disorder. From my readings and discussions with Dr. George, I developed a foundation in the general issues of aging, but, more importantly, I started to consider what it meant to age well. Dr. George introduced me to a new scope of research literature on “optimal aging” and “positive psychology.” As I consider my future research, I think about concepts, such as “hope” and “wisdom,” instead of just “depression” and “disorder.” My discussions with Dr. George have changed the trajectory of my graduate training and my career plans in gerontology. In our regular meetings, Dr. George and I also had an ongoing discussion about career paths in gerontology. We talked about different scenarios that allow a researcher to balance academic, clinical, and research pursuits. Dr. George also shared some insights from her own teaching experience and the importance of teaching students about late-life issues. With her help, I developed an undergraduate course with another graduate student and Internship Awardee, Alexis Franzese. This course, called Psychosocial and Psychopathological Aging, focuses on societal and individual issues in late-life development, including how these issues affect mental health. Ms. Franzese and I will offer this course to Duke undergraduate students next summer. The primary accomplishment of my internship has been the design of a research project to examine the symptom course of major depression in older adults. As part of my training, Dr. George worked with me on the use of large, longitudinal data sets to generate and test research hypotheses. I continue to develop this research design to examine the existence of core symptoms in late-life depression and how such symptoms might predict depression outcomes. I hope to publish the results of this research in an academic journal.
SONA CHIKARMANE, Senior, Program
Two Major, Duke During my internship this summer, I explored the cultural issues in death and dying in a completely different realm. I delved into research and humanities reading materials, preparing an extensive annotated bibliography, hopefully for publication on the Leadership in an Aging Society website and am currently pursuing other outlets for publication. I began the project in June, after an initial meeting with Sandy Leak at the end of May. In order to filter out the hundreds of available books, I started with main resources: local libraries (including the Hazleton Public Library and the Pennsylvania State University Library at the Hazleton Campus), local nursing homes (including St. Luke’s Nursing Home, Hazleton), and finally, with professionals whose jobs including some aspect of death and dying (Professor Kathleen Joyce (Duke) and local doctors and nurses in Hazleton). These initial resources proved to be quite fruitful. With each book, poem, or periodical suggested, I located the resources and attacked the reading the same way. With a notebook and pen at hand, I carefully read the introduction or first chapters. From there, I could usually tell if the book was relevant to what I was studying. Of course, I had to figure out what exactly I was studying. I narrowed down my topic to humanities books that addressed ethical and cultural issues in death and dying; different locations or “spaces” in which people choose to die; and finally, the care that a person chooses to receive (or not receive) due to cultural viewpoints. I also realized that some of the best resources were found at the end of each book, in their own bibliography. These comprehensive lists provided another outlet of research that could be tackled. After determining if a book (or other type of humanities material) was of need of further reading, I completed the material, continually writing notes and quotes that I found relevant. I then wrote a paragraph or two organizing my thoughts and, using examples of annotated bibliographies I found on the Internet, put together all this information into an annotated bibliography style. My final bibliography came to around twenty sources, but could potentially be expanded. The amount of material available for families, patients, physicians, and even academics is impressive; the variety ranges from websites and videos, to books and articles. Not only did some books elucidate the differences between cultural practices, such as those variations among Japanese, Chinese, Indian, etc., but also religious, geographical, and psychological viewpoints. Websites such as those sponsored by the National Institutes of Health contained information broadly ranging from its own bibliography of pertinent materials, to contact numbers for other organizations. I was also impressed by the multi-media approaches that were being taken to address the cultural viewpoints of death and dying, especially those to train physicians. Although the amount of academic based material outweighed the lighter readings, a few poems struck me including those by William Carlos Williams, a poet and a physician, who used words in an elegant way to describe death; many times his words never outwardly said what was going on, yet the feel of the poem would bring light onto the more serious issue. The most impressive compilation of poems, short stories, and reflective essays by physicians and patients, was Donna Dickenson’s Death, Dying, and Bereavement (London 2000). Drawing from experiences in literature, psychology, and anthropology, instead of a more technical, medical vantage point, the editors compile works that garner feelings and thoughts from a diverse range of experiences. My experience this summer was quite rewarding, as I felt like I was researching for not only an internship by also my own interest; it was after my grandmother’s death nearly three years ago when I found myself interested in this field. From my family, her death in a hospital rather than at home rose eyebrows, and I wondered why; yet, the Hindu ceremonies after were strikingly different than any other funerals many had attended. Through my readings of books, articles, websites, and videos, I was able to delve into many cultural issues surrounding death and dying, not only my own, and to create a resource that can be used by others to explore these issues as well.
PAULA DEHART, Senior, Public
Policy, Sanford Institute, Duke
Mentors: Dennis Streets, Yoko Crume, and Lynne Berry Site: The North Carolina Division of Aging Spending the majority of my childhood years sitting outside of nursing classes and waiting in dayrooms at nursing homes, as my mother pursued a career in geriatric nursing, did not encourage me to go into an aging field. In fact, these experiences primarily made me “turntail and run,” determined to avoid my mother’s fate. I tried almost every major under the sun here at Duke until I realized that all of my classes and all of my activities kept going back to people, specifically older adults. So, a decade after I “swore off” the aging field, there I sat with the application for the Leadership in an Aging Society Program. With Sandy Leak’s help, I decided that the best place to explore my broad interests was the North Carolina Division of Aging, under the guidance of Dennis Streets. My time at the Division of Aging was the most enjoyable learning experience I’ve ever had. I could finally see all of my aging and policy courses coming together. During my first few weeks, I found myself taking on projects and tasks that I never imagined I would have been doing, let alone as a mere intern. Everyone at the Division treated me with the same respect that they showed to their colleagues, which helped me to build confidence in my own abilities. One of my first tasks was to help facilitate a small group discussion at a forum on healthy aging. I had the opportunity to meet many aging advocates from across the state, from educators to active older adults, and hear their thoughts on what it means to age healthily. This was also a chance to confront my long-standing fear of public speaking. I attended several other meetings of aging advocates while completing my internship, including those of the Governor’s Advisory Council on Aging, the Coalition on Aging, and discussion forums for the North Carolina State Aging Services Plan. I also attended a meeting of the North Carolina Senior Tarheel Legislature, an event that opened up new doors to advocacy opportunities. I was introduced to the legislator from my home county, and I have since begun attending the monthly meetings of the Alamance County Aging Services Committee. Through my first Committee meeting, I learned of many services to older adults in Alamance County that I had not known existed, and I have begun taking advantage of some of the programs I learned about. Amongst other things, I will be attending a four-part series of family caregiver seminars in the coming months. I devoted significant time to projects during my time at the Division of Aging. I researched the development of an ombudsman-type home care advocacy program and evaluated health promotion and disease prevention efforts through Older Americans’ Act funding. Both of these projects involved surveys and phone interviews of other states to see what others were doing with these two programs. This was also an opportunity to learn what was going on in other states across the country. The home care ombudsman research project opened the world of elder rights up to me. In addition to this project, I also made revisions to a guide for grandparents raising grandchildren to be distributed by the Division of Aging. For this project, I researched laws and policies related to the complications grandparents find when trying to do everyday things like enroll their grandchild in school or take him or her to the doctor. Through my work with these projects, I attended a training session for new regional ombudsmen. Training included hearing speakers from all parts of state government affecting older adults, as well as mediation and sensitivity training. My time at the Division of Aging taught me more about elder rights, aging issues, policy making, and state government than I could have ever learned from books. I am anxiously looking forward to taking my experiences into the world of health policy.
Through the Duke Leadership in an Aging Society Program, I was able to spend the summer as a researcher at the Cognitive Behavioral Research and Treatment Program, led by Director Dr. Thomas R. Lynch and Assistant Director, Dr. Jill S. Compton. In this time, I was engaged in a variety of projects in the research lab. The main component of the Research and Treatment Program with which I was involved was an efficacy study of dialectical behavioral therapy for older adults with depression and personality disorders, called Project Alive. As a member of the Project Alive research staff, I participated in the research process in several different ways. Through my attendance and participation at weekly lab meetings, and involvement in colloquia held at the lab, including a recent borderline personality disorder collaboration meeting held on site, I became familiarized with the processes of performing research: from the development of a research question to applying for grant funding. I spent time this summer reviewing literature relevant to the topics of aging and mental health, and I am currently compiling key readings on these topics to be provided to individuals joining the research team. I also gained experience in reporting research outcomes. I am working on a paper with Drs. Compton, Thorp, and Lynch and plan to present a poster with fellow Internship awardee Ann Aspnes and Dr. Lynch at the upcoming annual meeting of the Gerontological Society of America. Clinical contact with older adults was a primary focus of my experience. As part of the research program, Research Coordinator Leslie Horton trained me to screen incoming study participants with clinical assessment interviews, such as the Hamilton Rating Scale for Depression, and Structured Clinical Interview for the DSM-IV Axis II Disorders. I also had the opportunity to observe individual progress over time when I conducted bi-weekly phone assessments with a number of participants throughout the summer. A research program, such as Project Alive, must also interact with the surrounding community to recruit new participants and to connect participating older adults with community resources. This summer I developed a resource directory of services for older adults, visited local mental health care facilities to speak with healthcare professionals, and presented to a group of Chatham County seniors on depression and resources for depression in older adults. This internship experience has exposed me directly to older adults suffering with mental illnesses. This client contact has been eye-opening for me and has allowed me, as a sociologist, to develop a sense of what this experience is like for older adults. From a sociological standpoint, it has been quite interesting to observe first hand how social factors such as social networks and social support profoundly impact the mental health status of individuals. Older adults are a distinct population whose social worlds imply particular vulnerabilities. For example, with retirement may come a loss of identity, and with the aging of children and the passing of friends may come a loss of social support. I am grateful to have had the opportunity to participate
in this experience which will undoubtedly guide the course of
my academic career and research agenda. In fact, colleague
Ann Aspnes and I developed a course, Psychosocial and Psychopathological
Aging, which we will be teaching next summer.
As an intern for the Duke University Leadership in an Aging Society Program, with Dr. Laurence Branch as my primary mentor, I had the opportunity to participate in three projects. Each project tested knowledge I learned during my MPH year and proved to be invaluable to my experience at the School of Public Health. My research activities involved use of concepts in statistical methods and policy analysis in order to meet our team goals. I was pleased to discover that I served as an integral part of the team, contributing to efficiency and good overall morale. My first project was a prostate cancer project “The Treatment Decision Process for Prostate Cancer Survivors” which has three parts. I participated in Part Two, entitled “Telephone Interview of 200 Prostate Cancer Survivors: What a Patient Needs to Know to Make Informed Treatment Decisions” One hundred and ninety men who have received treatment for their prostate cancer will be contacted and interviewed using a scripted questionnaire composed by Dr. Laurence Branch, Dr. Dan Blazer, David Brown and me. Names of potential patients were acquired from the Duke University Medical Center Tumor Board. I initiated contact with the Tumor Registrar, crafted parameters for our subset of the patient population, and submitted materials in regards to IRB clearance. My second project focused on the third year curriculum at Duke University School of Medicine. In 1966, Duke University changed the curriculum to allow medical students to spend their entire third year devoted to research. Duke Medical students can participate in research in basic science laboratories or with clinical investigators, which is the traditional option, or they can pursue a second research degree such as the Master’s in Public Health (MPH). One question that often arises is whether students who opt to take the MPH are at a disadvantage when matching for residency placements relative to their classmates who choose the more traditional option of participating in the basic science or clinical laboratory of a Duke faculty member. For the last four academic years, nearly 25% of the Duke medical students have opted to pursue the MPH degree during their third year, and thereby graduate with dual MD-MPH degrees after four years. We compared the residency match placements of the graduating classes of 2000, 2001, and 2002 of those who opted for the MPH compared to those who opted for the traditional participation in the basic science or clinical laboratory of a Duke faculty member. The question of whether medical students who opt to spend the third year of medical school away from the day-to-day contact with their medical school faculty and not with other faculty who might facilitate their matching with higher rated residency programs was tested empirically. This study is presently being reviewed for publication. The third project of the summer focused on stroke rehabilitation therapies and the process of care for patients participating in the Veterans’ Affairs Geriatric Evaluation and Management Study. The original GEM Study conducted a randomized trial involving frail patients 65 years of age or older who were hospitalized at 11 Veterans Affairs medical centers. After their condition had been stabilized, patients were randomly assigned, according to a two-by-two factorial design, to receive either care in an inpatient geriatric unit or usual inpatient care, followed by either care at an outpatient geriatric clinic or usual outpatient care. The interventions involved teams that provided geriatric assessment and management according to Veterans Affairs standards and published guidelines. For this study, we selected out a subset of the GEM patient population based on stroke/cerebrovascular diagnoses. Out of the 1388 patient enrolled in the original study, we received a subset of 406 patients. The inpatient and outpatient care of these 406 patients was then studied. The numbers of PT, OT and speech pathology visits were counted, and tested to determine whether there is a significant difference between GEM and non-GEM patients. We then compared patient outcomes (improvement in ADLs and IADLs, improvement in the Physical Performance Test) for those placed on GEM units compared to those on Non-GEM units. The results of this study are pending review. I not only learned a great deal during this internship, but I also enjoyed my experience as a Leadership in an Aging Society Intern. My chief mentor, Dr. Laurence Branch, was extremely helpful, such an invaluable resource! He always had an open ear to my questions and an open computer if he was unsure of the answers. This internship has prepared me for a future as a hospital administrator, a policy analyst, or a physician with a broader view of the medical field.
CARLA JULIAN, Graduate Student,
UNC School of Public Health Leadership Program For my internship, I had the fortunate opportunity of working with the Orange County Department on Aging and my primary mentor, director, Jerry Passmore. Jerry is truly a visionary leader with innovative plans for an interdisciplinary, interdepartmental approach to meeting the needs of older adults and their families throughout the continuum of long term care. After many months of hard work and the assistance of a wide-range of professionals and community leaders, Orange County completed a comprehensive Master Aging Plan (M.A.P.), identifying and addressing the needs of older adults from the well-fit to the severely disabled population. The M.A.P. was adopted by the Board of County Commissioners in March 2002 and covers the five-year period 2000 to 2005. I had the opportunity to work with Jerry and a number of other leaders on some of the priority objectives in the M.A.P. While addressing these objectives, I learned a tremendous amount about the characteristics of and differences among county, regional, and state levels of government as each relates to aging policies and programs. I attended and assisted in the administrative preparation for a number of Orange County board and committee meetings: the Advisory Board on Aging, the Nursing Home Community Advisory Committee, the Interdepartmental LTC Quality Committee, the Adult Day Health Center Subcommittee, and board meetings for Central Orange Senior Center. While working with the Orange County Department on Aging, one of my primary objectives was to have direct interaction with older adults in different settings. In light of my position as a Registered Nurse, I independently volunteered to perform weekly blood pressure checks at the Northside Senior Center. I also had the opportunity to work with three exceptional eldercare case managers, Kate Barrett, Ann Bradford, and Vibeke Talley, in managing the care of high-risk seniors in their homes. Under the supervision of Professor Florence Soltys, I also participated in UNC Hospitals’ Interdisciplinary Geriatric Assessment Clinic. During my short-time in the clinic, it became abundantly clear how important an interdisciplinary approach is in meeting the needs of older adults and their families. We were able to identify problems and develop a plan of care based on recommendations from many disciplines including medicine, social work, pharmacy, psychiatry, nursing, and occupational therapy. One of my primary responsibilities involved organization of a Planning Task Force that will establish an Orange County Long Term Care Facility Roundtable. As outlined in the M.A.P., this Roundtable will be comprised of a broad base of individuals including facility administrators, regulators, advocates, caregivers, and consumers such as family members and residents of LTC facilities. Issue-based work groups (Quality Action Circles) will be created to define, address, and resolve priority issues affecting the quality of care and quality of life for residents in long term care facilities. During my participation on the Planning Task Force for the LTC Roundtable, I met and collaborated with a number of leaders in the field of aging from Orange County and the University of North Carolina. Two of the most influential people I worked with on the Planning Task Force were Florence Soltys and Jill Passmore. As mentioned above, Florence Soltys is a member of UNC’s Interdisciplinary Geriatric Assessment Clinic, as well as on faculty at UNC’s Schools of Social Work andMedicine. She is an exceptional leader and role model, and many of the programs and services in Orange County exist today because of her dedication and commitment to improving the quality of life for all seniors. Jill Passmore is the Region J Long Term Care Ombudsman for Orange County and is an extraordinary advocate for residents and families. She is proactive in her approach to resolving quality of care concerns in LTC facilities. Finally, my experience with the Orange County aging network was invaluable. I am grateful for the welcome I received, the degree of trust placed in me, and the freedom I was allowed in exploring the areas I identified as critical to my learning experience. Initially, I envisioned the current budgetary constraints limiting the amount of activities with which I could participate, but I found the opposite to be true. As a leader, Jerry verbalized the importance of planning current and future programs with the optimistic belief that the economic situation would someday improve, so that he and all advocates and services providers could one day see the attainment of their vision for comprehensive interdisciplinary services for older adults in Orange County and beyond. A course called, “Death and Dying,” taught by Dr. Deborah T. Gold, prompted my interest in working with people at the end of their lives. Thus, as an intern for the Leadership in an Aging Society Program, the program directors and my mentor, Lisa Gwyther, MSW, helped me to develop an internship based on end-of-life care. Throughout this internship, I worked with Ms. Gwyther to prepare a paper for publication on the role of social work in end-of-life care. In addition, I interacted with renowned physicians at Duke Hospital, conversed with patients, and participated in a variety of community health activities and palliative care-related events at Duke. Overall, this internship helped me to integrate my interests in patient care, research, education, and public health. For my principal project, Ms. Gwyther and I worked as part of a national social work committee. Via conference calls and collective emails with social workers across the country, we navigated the complex issues surrounding end-of-life care. During this process, I explored diverse topics, including ethical decision-making, psychosocial and spiritual aspects of end-of-life care, cultural diversity, and interdisciplinary teamwork. This paper, focusing on scope of practice and core competencies for social work in end-of-life care, will ultimately be submitted for publication. Finally, I compiled an extensive bibliography of resources on end-of-life care and grief work that would be helpful for social workers. In addition to being immersed in this project, I was involved in other activities related to the “end-of-life care” theme of my internship, I "shadowed" Dr. Tony Galanos, a Duke geriatrician, and Dr. Theodore Suh, a fellow in geriatrics, and I met with Dr. James Tulsky to discuss career options in palliative and end-of-life care. Throughout the internship, I regularly visited a hospice patient as a volunteer with UNC Hospice. Moreover, I attended hospital lectures and events, including a presentation entitled, “The Faces of Donation: Organ, Tissue, and Eye Donation,” as well as a luncheon with Dr. Shigeaki Hinohara, a ninety-year-old internist and educator from Tokyo, Japan. In addition, I enjoyed hearing several experts speak at departmental Grand Rounds presentations. Finally, at the NIEHS conference, “Built Environment - Healthy Communities, Healthy Homes, Healthy People: Multilevel, Interdisciplinary Research Approaches,” I realized the importance of integrating multiple perspectives when confronting complex public health issues. By participating in a broad spectrum of events, I gained insight into the interdisciplinary and dynamic nature of end-of-life care. By working with Lisa Gwyther, I came to appreciate the vital role of social work in the health care arena. In addition, I learned that communication, advocacy, and leadership are critical elements of caring for people at the end of life. Ms. Gwyther provided exceptional guidance throughout the summer internship, and I truly enjoyed being a part of this energizing program. I feel inspired by the passion of the professionals with whom I interacted this summer, and I am grateful for the outstanding opportunities provided by this program. I hope that I can apply the knowledge, skills, and heightened sensitivity that I have gained from the Leadership in an Aging Society Program to improve the quality of end-of-life care in this country.
My summer internship at the Council of Senior Centers and Services of New York City (CSCS) proved to be a wonderful instance of experiential learning. Having never been truly exposed to the business world, non-profit or for-profit, I learned a great deal about the workings of a small firm that advocates for a much larger and diverse group of people. CSCS is the central organization in NYC representing 340 senior centers, services for the homebound elderly, housing and other providers serving 300,000 elderly people citywide. They do advocacy on city, state, and federal levels for community-based services designed to help seniors remain in the community. This summer, the public policy department was especially busy with city budget negotiations, as the mayor’s budget had initially proposed a $26 million cut from senior services. In a trip to City Hall, I learned first hand what “lobbying” truly entails. Advocates for senior services, education, recycling and more causes literally wait in the lobby of City Hall until council members appear; the lobbyists give the council members flyers and explain their cause in ways that will most inspire action on the part of the council member. Following my lobbying experience, I had the opportunity to sit in on a city council meeting. I never would have imagined the formalities that are so prevalent in such meetings, and it offered true insight into aspects of politics and law to which I had never before been privy. Throughout the summer, I worked on my own project: fall prevention among the elderly. I worked closely with a geriatric environmental modification (GEM) specialist at Cornell-Weill Medical Center, taking what would be the initial steps in New York City’s efforts to prevent falls among residents aged 65 and older. My research taught me about a serious problem I had never considered before the summer: Falls are the leading cause of unintentional injury death for people aged 65 and older. The problem is multi-faceted with such contributing factors as environmentally unsafe homes, unwillingness on the seniors’ part to make changes to their homes, physical limitations and impairments, and a lack of educational and informative programs. I found that few services exist in New York City to address the problem, and the services that are offered by organizations, such as home safety assessments, home modifications, and educational programs, are generally incomplete, underprovided, and undersupplied. Moreover, the lack of an effective fall prevention program costs New York and the rest of the country more in health care, Medicaid, and Medicare expenses than implementing such a program would cost. With the aging of the United States population, costs for falls and related injuries will substantially increase (by 2020, the cost of all fall-related injuries is expected to exceed $32 billion). A program in New York City would greatly reduce the direct and indirect costs of fall-related injuries. I had two primary goals for the summer. First, I wanted to develop a comprehensive and integrative fall prevention program for New York City. To do so, I visited several senior centers and interviewed seniors as well as executives to find out what they felt New York lacked and what they would like to see in such a program. I was even given the opportunity to accompany a social worker on home visits to homebound elderly, an extremely sobering experience. My research also helped me make connections with professionals in the world of geriatric healthcare; I learned that the professional community is relatively small and close-knit, as one professional would often refer me to another I had already met. It was rewarding to discover that each of the professionals I contacted was enthusiastic about my work and very willing to help me accomplish my goals. My second goal was to develop a resource list (however incomplete given the lack of resources in the city) for seniors and service providers so they could go to one place to find a list of all resources for which they might be eligible. This endeavor proved more difficult than I had originally imagined because I found out that I had very little to start with. Nonetheless, I combined other sources I came across and compiled a more or less comprehensive list of resources in New York that offer such services as home assessments, modifications, grab bar installations, and other repairs. On a broader level, I learned that the real world is not as competitive as one often hears; people are actually willing to work together to accomplish the same goal. Not only the CSCS staff but also the social service workers, medical professionals, and government agents I made connections with were more than eager to help me. The dynamic of the staff of CSCS and their relationship with the directors of senior centers, services and other organizations was wonderfully productive, enabling CSCS to address a huge range of issues relevant to the senior population. They have forged close working relationships with influential political figures, giving them more influence than an average non-profit organization. These realizations have shown me that the business and policy world is not as intimidating a place as I once thought. While I still have plans to practice medicine, I am even more eager to broaden my aspirations. I would like to work in health policy, and if my impressions from this summer of the geriatric professional community are accurate, I definitely see myself continuing my work with the diverse and engaging senior population.
ALICIA MECKLAI, Senior, Biomedical
Engineering, Duke This summer, I became involved in some of the most pressing health policy issues affecting individuals with Alzheimer’s disease. As I worked alongside the Public Policy staff at the Alzheimer’s Association, I began to see that federal policymakers share many similarities with physicians and researchers. Not only do they contribute to the network of individuals devoted to healthcare, but they are also driven by the same fuel: passion derived from the millions of patients whose future depends on the success of their actions. During my internship, I had the opportunity to contribute to the Association’s role in advocacy. One of my ongoing projects was to follow the complex Congressional debate on Medicare coverage of prescription drugs. Because Medicare does not currently cover outpatient prescriptions, beneficiaries can incur out-of-pocket expenses of more than $1000 yearly. Briefly, several plans were introduced, both in the House and Senate. The House GOP plan would provide coverage to seniors by subsidizing private insurers to offer "drug-only" insurance to this group. While the House Democrats drafted a competing bill, their proposal would cost significantly more. To monitor this key issue, I attended Congressional hearings and legislative briefings. It was quite interesting to see how fast advocacy groups joined together to form positions on a newly introduced plan. Within hours of the bill’s disclosure, I participated in a conference call to plan a press event on the steps of the Capitol to voice their decision to support the legislation. Apart from collecting relevant information about the prescription drug debate and competing plans, I also followed other Congressional topics, including long term care and the rising costs of prescription drugs. With respect to the latter topic, I attended an interesting debate between representatives of brand and generic pharmaceutical manufacturers. The debate was centered on how to ease generic drug entry into the market while maintaining incentives for future innovation in pharmaceutical research and development. In addition to following federal legislation of interest to Alzheimer’s advocates, I represented the Alzheimer’s Association at National Health Council meetings. During such meetings, I had the opportunity to hear from key individuals, including Dr. Crawford, the deputy commissioner of the FDA and Senator Breaux, the Chairman of the Senate Special Committee on Aging. My other main project focused on the ethical and legal issues that arise while conducting clinical research on subjects with impaired decision making capacities, for example, individuals with Alzheimer’s disease. Over the past year, the FDA and the Office of Human Research Protections (OHRP) had suspended clinical research at several prominent institutions due to flaws in their human research protection systems. Federal legislation currently requires that researchers obtain appropriate documentation of consent, or willingness to participate, from potential subjects. For individuals in the later stages of Alzheimer’s disease, such consent may be difficult to obtain because cognitive impairment may render one incapable of deciding whether or not to participate. In these cases, consent from the participant could be substituted with proxy consent from a relative or an advance directive explicitly stating the patient’s wishes. However, guidelines have yet to be established on who can serve as a proxy and if proxies should be able to enroll someone in research that could potentially put that individual at risk. Many forums have been organized to address these ethical issues. After attending these discussions, I prepared a report incorporating their recommendations to send to the Ethics Advisory Committee at the Alzheimer’s Association National Office in Chicago. The report discusses the various federal organizations responsible for protecting human subjects, key issues surrounding the participation of decisionally impaired persons in research, and legislative efforts to ensure adequate protections are maintained. The intent of the report is to help the Committee focus on new ethical issues that have arisen in research trials. It also reveals areas of potential advocacy for the Alzheimer’s Association. My internship at the Alzheimer’s Association has given me a passion for policy. On the day I bypassed a “Friends” rerun and instead opted to watch a Congressional debate on C-SPAN, I realized just how enraptured by this passion I had become. Due to my predominately scientific background, I had not been introduced to some of the fundamentals in public policy. Jennifer Zeitzer and Bonnie Hogue gave me a “crash-course” in public policy by helping me decipher the numerous acronyms and detailing the purposes of Congressional hearings and markups. As a result of this internship, I have a clear direction of where I would like to be in the future. Judy Riggs, who apart from giving me valuable advice on my report for the Ethics Advisory Committee, also introduced me to the different avenues available for individuals with scientific interests in the realm of federal policy. I saw how professionals from a variety of backgrounds, including ethicists, lawyers, physicians, and researchers, would convene in forums sponsored by the NIH to discuss issues that are relevant to the future of Alzheimer’s disease research. After observing the value of the different perspectives in these ethical debates, I know that when I become a physician, I want to be involved in similar discussions. Whether I find myself a member on an Institutional Review Board or a consultant to the Office of Human Research Protections, my goal is to continue employing my scientific background in the realm of health policy. As I was searching through the congressional directory, I came across a senator who had a myriad of accomplishments in health care legislation. I was further surprised to see that this senator was not a lawyer, like many of his colleagues, but rather a surgeon. He had taken the principles he had acquired as a physician and applied them to his work on health care reform. Similarly, I hope to continue treating patients, but also have the opportunity to influence the future direction of healthcare and dementia research across the nation.
I interned at the North Carolina Division of Aging during the summer of 2002. My initial purpose for applying to the program was to observe and contribute to public policy work regarding health insurance issues for the elderly. I believe that my internship more than exceeded my intentions in exposing me to areas that are critical to long term care insurance and economic security. My mentors – Dennis Streets and Yoko Crume – asked me to assist them with two projects. First, several years ago the North Carolina legislature approved a tax credit that may be applied to state residents’ annual income taxes if they have paid premiums for a private long term care insurance policy. The statute for the tax credit requires the Division of Aging to work with the NC Departments of Revenue and Medical Assistance to report on the number of state residents using the tax credit, yielding also an estimate of the number of people who have private long term care insurance policies. The ultimate goal was to assess the impact that long term care insurance policies have on the state’s annual Medicaid expenditures. My tasks included the following: creating a general framework for the report, determining the key questions and major issues to be addressed, gathering relevant information, and contacting individuals in the other departments who could contribute to the report. I also read policy reports on other states long term care insurance programs (namely NY, CT, and CA), the federal government program that began in the summer of 2002, and general policy-oriented articles about long term care issues. Second, I was involved in the early stages of writing a chapter regarding economic security for older adults that will be included in the North Carolina State Aging Services Plan 2003-2007. In this case, the Division is required to create a book-size plan that describes to state officials and policymakers the services provided to the state’s elderly citizens, the demographic and economic trends impacting the elderly in North Carolina, and projections for what the state can do to address the elderly’s unmet needs. I was responsible for organizing a one-day focus group meeting of local researchers and policymakers to discuss the most important issues that should be addressed in the Economic Security chapter. Some of the issues covered were retirement income, assets, insurance concerns, and expenditures. I also interviewed several researchers in this area who were unable to attend the meeting. The other main task for this project was to do literature-based research for materials and information that could be included in the chapter. The final version of the chapter will be written by Yoko Crume an alumna of the Leadership in an Aging Society Internship Program.
This summer I had the amazing experience of working on Capitol Hill for the United States House of Representatives Committee on Ways and Means, Subcommittee on Health. I pursued this work for several reasons. First, I am interested in Medicare policy, over which the subcommittee has jurisdiction. Second, I wanted hands on experience with the creation of national aging and health policy. Third, I hoped to spend time in Washington, D.C. where I could meet and work with national leaders. Thanks to the support of the Leadership in an Aging Society Internship Program, I was able to fulfill all three of these interests. My work with the Subcommittee was focused mainly on the Medicare Modernization and Prescription Drug Act of 2002. My responsibilities varied from day to day, minute to minute; things are always changing in the fast-paced world of Congressional policy-making. I completed background research on policy, helped staff with drafting legislative language, wrote policy summaries and talking point memos, and determined financial benefits of the prescription plan for individual seniors. Through this work I gained a much deeper knowledge of Medicare policy. I also met with representatives from a wide variety of interest groups, ranging from healthcare providers to senior advocates. This opportunity provided me with greater insight on how Medicare policy directly affects the lives of individuals. Another part of my experience involved attending meetings and briefings. I attended several congressional briefings ranging in topic from generic drugs to new technology in Medicare to empowering healthcare consumers. The Medicare bill was a very complex piece of legislation, and the Subcommittee staff met often with key congressmen and congresswomen and their staffs to provide updates and new information. I was also fortunate to attend meetings between staff and the bill’s sponsor, Congresswoman Nancy Johnson of Connecticut. These experiences allowed me to learn first hand how policymakers in Washington create and pass legislation dealing with aging and health policy. The most exciting part of my summer internship was when we finally moved the Medicare bill through the House of Representatives. I worked with the staff throughout the committee mark-up hearing and was on the floor of the House of Representatives during debate and passage of the bill. I was able to observe and learn from some of the most powerful leaders in our nation. The experiences I had in Washington, D.C. this summer will stay with me for the rest of my career in medicine and health policy. Not only did I gain more direct knowledge about aging and health policy, but also I had hands on experience with its creation at a national level. The lessons I learned from the people around me will also have a lasting impact on my career. I observed how these powerful people work day to day as well as how they handle times of great pressure and high demands. The poise, elegance, and intelligence displayed by my co-workers at Ways and Means will serve as a model I hope to maintain in my career.
As I have an interest in health policy and am pursuing a health policy certificate, I wanted to be placed in an environment where I could explore many different facets of policy in the health world, especially including long term care. My placement with the Duke Nursing School’s Trajectories in Aging Care (TRAC) Center gave me this opportunity. My primary task at the TRAC Center was to research product development and to write a white paper about this topic for use at the TRAC Center’s retreat this fall. As part of my research, I not only participated in some of the TRAC Center’s research projects, but I also spoke with other long term care professionals in the area, including Susan Harmuth, from the NC Office of Long Term Care, and Marita Titler, the director of the University of Iowa’s Research Dissemination Core. By the end of the summer, I had not only become aware of many of the problems facing the long term care community in North Carolina, but I also began to think of potential ways of solving these problems. My white paper focused on the barriers the TRAC Center has faced in developing products that would improve the quality of care in nursing homes and offered suggestions for overcoming such barriers. My placement with the Duke School of Nursing’s TRAC Center was an extremely rewarding experience, as it allowed me to gain insight not only about issues involving our aging population, but it also helped me understand the various ways that policy can influence the lives of everyday individuals. From the quality of care in nursing homes to which research projects receive funding, national policy greatly influences all those who are involved in long term care. My internship strengthened my dedication to the field of aging, and as a result I have decided to pursue health law. The most obvious lesson I learned from my internship was how to conduct serious policy research. While I was somewhat familiar with policy research from previous classes, I was on my own this summer to find substantive sources on long term care policy. Not only did I read several “aging and policy” books, but I also became extremely familiar with journal publications (such as Health Affairs) and policy think tank websites (such as The Robert Wood Johnson Foundation and The Urban Institute), as well as becoming familiar with legislators who care about health issues (such as Senator John Breaux). I was also forced to keep up with the most significant long term care issues of today – the battle for prescription drug coverage in Congress and the nursing shortage crisis. Susan Harmuth, who works in the North Carolina Health and Human Services Office of Long Term Care, has spent her career dealing with LTC issues and was able to set aside a morning to discuss both the nursing shortage and her experience with policy making at the state and local level. One important lesson Harmuth reinforced for me was that seeing a specific policy through to passage rarely occurs – it takes a significant amount of time and the right environment for most health policy to pass. This was a lesson stressed over and over again by Christopher Conover in his ”Politics of Health” Care class. While in the TRAC Center, I was amazed to see how much national policy influences everyone. One thing I immediately noticed was the number of laws and policies that researchers must comply with before they can even get their projects up and running. Many were concerned with the recent passage of the Health Insurance Portability and Accountability Act (HIPAA) and ensuring that their projects were compliant. I was immediately reminded of a lesson learned in James Hamilton’s PPS 114 class – laws do not enact themselves. With vague language, both policy and non-policy people are left to decide how laws will actually be enacted in the real world. In addition, my experiences this summer reflect almost eerily the lessons I am learning in a class I am currently taking – “Prevention as Community Policy.” While in most policy classes the emphasis is placed on making changes at the policy level (by establishing laws, or crafting policies), this class focuses not only on policy, but also on making changes within the community. The whole field of public health is based on a similar premise – that for real change to occur policy must be accompanied by improvements within communities and individuals. This is exactly what the goal of the TRAC Center is – to raise the quality of care in the long term care community, and also to promote awareness among those crafting policy at a larger level. Thus the nurses in the TRAC center read the Federal Register and respond with suggestions for improving those codes that might affect their field of study. They also conduct research and implement projects in different nursing home communities that are designed to raise the quality of care that residents receive. Finally, from my internship this summer I noticed an enormous problem in the way a lot of health policy gets crafted in this country. Policy makers generally take a top down approach – they set the rules which then trickle down to researchers and the average person, often times without consulting those who may know best about which policies will be most helpful. Researchers could be such an invaluable resource to policy makers, yet the two function on two very different levels and thus effective communication rarely takes place. I would be very interested to continue exploring this problem (perhaps in the form of an independent study) and discovering ways of bridging this gap, because I think it can greatly improve the way we think about and craft health policy.
QUICK FACTS ABOUT Since 1993 . . .
FOUR GABEL INTERNS ANNOUNCED FOR 2002 The Duke Leadership in an Aging Society Program has named four outstanding Duke undergraduates as Gabel Interns for the summer of 2002: Alicia Mecklai, Jennifer Matro, Sona Chikarmane and Eva Wilkinson. Dr. George Maddox, Program Director, noted that the new Gabel Awardees have strong academic and service backgrounds along with demonstrated potential for leadership in care for frail older and disabled adults. Alicia Mecklai is a senior majoring in biomedical engineering with pre-med interests. A high school valedictorian and member of the National Society of Collegiate Scholars and Tau Beta Pi Engineering Honor Society, Alicia has been an active volunteer at M.D. Anderson Cancer Center in her hometown of Houston, TX, and while at Duke through the LEAPS Program at Community Life Adult Day Services and the Partnership for Literacy. She interned with the Washington Policy Office of the Alzheimer’s Association. Jennifer Matro is a senior public policy major who is pursuing a health policy certificate and has pre-med interests. Ranked number one in her high school class, she has been an active volunteer leader at Duke. Among her many volunteer activities, she has coordinated Project Share, the holiday gift-giving campaign, on the Duke Campus through the Community Service Center and is the head coach for the Durham County Special Olympics Tennis Team. Jennifer also is a certified EMT and member of Duke EMS. She interned with the Council for Senior Centers and Services of New York City. Sona Chikarmane is a rising senior with pre-med interests who has designed her own major on culture and medicine. A high school valedictorian, president of the Duke Pre-Med Society and one of Duke’s Truman nominees, Sona has done volunteer work with AIDS patients at Integrated Health Services and tutored children at Walltown Ministries. Her other learning experiences include an internship with the Centers for Medicare and Medicaid in the summer of 2001 and documentary work on terminal illness in India later that year. Her internship focused on end of life care. Eva Wilkinson is a senior public policy major who is pursuing a health policy certificate. Eva has volunteered through the LEAPS Program at the nursing facility of the Methodist Home’s Croasdaile Campus. A violinist, she is a member of the Duke Symphony Orchestra, a consultant to the Theater Development Program and currently is participating in the Duke Leadership in the Arts Program in New York City. She interned with the Duke School of Nursing working on a program to coordinate research on improving the care of frail older adults in nursing homes. The Gabel Family Endowment was established
in 1998 by the family of Frederick D. and Kathleen Roberson Gabel
to support mentored internships opportunities and leadership development
for Duke students who have the potential to be the next generation
of leaders to address the complex issues facing an aging society.
Those issues include care and services for older adults with Alzheimer’s
Disease.
Long Term Care Resources Program, DUMC 2920,
|
|||||||