Find sources of help for caregiver tasks. Contact family, friends, neighbors, church/synagogue, workplace, Area Agency on Aging or other organizations.

Protect your personal time for something you enjoy or something you need to get done.

Dr. Rovner: We are evaluating three exciting new disease-modifying drug treatments that may slow down the course of Alzheimer’s disease. I am also a Principal Investigator of Jefferson’s Center for Excellence in Neurodegenerative Diseases funded by the Pennsylvania Department of Health Tobacco Settlement grant. We are testing innovative screening methods to identify dementia in community-based agencies serving older adults, as well as testing in-home skills training services to delay nursing home placement and reduce stress for a racially diverse group of family caregivers. This latter study is being conducted at the Center for Applied Research on Aging and Health, by Principal Investigator Laura N. Gitlin, PhD.

As the primary caregiver of a parent with Alzheimer’s, Deb dealt with various complications beyond the memory loss. Her mother continually roamed the house in the middle of the night, for no apparent reason. It turned out that her irregular sleep patterns were due to arthritis in her arm as well as painful kidney infections. Deb had a hard time gauging her mother’s pain because her mother couldn’t articulate it.

For the past 15 years, CARAH has been in the forefront of developing and testing innovative approaches to supporting families in their heroic care efforts and enhancing the quality of life of affected individuals. CARAH’s current research focus is on testing nonpharmacological approaches to managing one of the most complex aspects of the disease, disruptive behaviors.

We remain deeply indebted to the many families who have shared their stories and knowledge with us so that we may learn from their experiences as we work together to identify the best approaches to manage the disease. In this issue, you will learn about research studies conducted at Jefferson and the important role of clinical trials in helping to identify effective dementia treatments.

If you are a caregiver, know someone who is caregiving, or a health provider working with families dealing with dementia, we invite you to contact us to learn more about participating in our studies. Call us at 215-503- 2897 or visit our web site at www.jefferson.edu/jchp/carah.

by Laura N. Gitlin, PhD and Mary Corcoran, PhD, OTR/L with contributors, published by AOTA Press, the American Occupational Therapy Association, Inc.

ISBN: 1569002037

Based on over 15 years of research, the book presents the Home Environmental Skill-building Program (ESP), an evidence-based intervention to support families and persons with dementia and enhance quality of life. The book provides the theoretical and empirical evidence for the program and describes its protocols in depth.

Physical Function in Older Adults: A Comprehensive Guide to Its Meaning and Measurement

by Laura N. Gitlin, PhD, published by Pro-ed, Inc.

ISBN: 1416400451

This reference book provides health and human service professionals with a comprehensive understanding of the meaning of physical function, a critical dimension of health and well-being. Researchers, students and practitioners will learn how to select an assessment instrument, the dimensions of different assessments, the historical meanings of this construct and the range of assessment tools available for research and clinical practice.

Introduction to Research, 3rd Edition, Understanding and Applying Multiple Strategies

by Elizabeth DePoy, PhD, OTR, MSW and Laura N. Gitlin, PhD, published by Elsevier Mosby.

ISBN: 0323028535

Now in its 3rd edition, this book is used widely in the United States and internationally. It offers a unique framework for understanding both qualitative and quantitative approaches to the research process. Issues related to ethics, informed consent, evidence-based practice, and proposal-writing are highlighted.

Soul Pain: The Meaning of Suffering in Later Life

by Helen K. Black, PhD, published by Baywood Publishers as part of the Society and Aging Series.

ISBN: 089503346

This book explores the multifaceted experience of suffering in old age due to illness, loss, and life disappointment, as well as experiences related to one's gender, ethnic background, and religion. Through the narratives of community-dwelling elders in each chapter, the book shows how elders assimilate the emotional and spiritual fractiousness of suffering into a life already laboring under the "work" of old age, and at a stage in life when personal resources are lessened and time seems to be running out. Elders' definitions of suffering as well as their perception of its value emerge from the uniqueness of their lives as well as the profundity of their experiences.

Funding Source: National Institute on Aging

Principal Investigator: Helen K. Black, PhD

Target population: Philadelphia area residents over the age of 80 years old.

This 4-year study examines the experience of suffering and its relation to health, gender, and ethnicity among community dwelling elders aged 80+ using the open-ended interview schedule as its primary tool. This project explores through qualitative research the under-studied construct of suffering in later life and how suffering affects mental, physical and spiritual health.

Participants are interviewed in their homes on three occasions and are paid for their interviews.

Title: Project ACT: Advancing Caregiving Techniques

Funding Source: National Institute on Aging

Principal Investigator: Laura N. Gitlin, PhD

Target population: In-home family caregivers and their relatives with Alzheimer’s or related dementia in the five-county area.

This study tests the effectiveness of an innovative in-home intervention to help families manage behaviors that are complex and troublesome in persons with Alzheimer's disease or related dementias. Participants are assigned by chance to one of two groups. One group receives visits from a nurse and an occupational therapist who help families identify problem areas, potential triggers for behaviors and nonpharmacological solutions to their management. The other group receives a two-hour in-home education session by a trained member of the research team.

All participants are interviewed three times and are paid for each interview. All receive educational and referral information.

Title: Project COPE

Funding Source: Pennsylvania Department of Health

Principal Investigator: Laura N. Gitlin, PhD

Target population: Family caregivers of clients in Medicaid Waiver or Options Programs (Area Agencies on Aging) / Nursing Facility Care Eligible

The study evaluates a program of in-home services to address family caregiver upset and boredom, depression, and troublesome behaviors in persons with dementia. Participants are assigned by chance to one of two groups. One group receives services from an occupational therapist and a visiting nurse. The nurse examines the client to identify possible medical problems. The OT assesses the client and works with family caregivers to identify potential behavioral triggers of problem behaviors. The OT designs a tailored program of activities for behavioral management.

All participants are interviewed three times and are paid for each interview. All receive educational and referral information.

For further information about these and other studies, please visit our website at www.jefferson.edu/jchp/carah or call (215) 503-2897 to speak to a member of our staff.

Research from the past 15 years consistently shows health disparities between Whites and minorities in the United States. African-Americans, in particular, are at higher risk than Caucasians for serious health conditions such as stroke, diabetes, cancer, cardiovascular disease and mild cognitive impairment. These chronic conditions typically contribute to depression in elders as a whole. However, the rates of depression for African-Americans are unclear with many studies reporting lower depression than in Whites and others reporting the reverse.

This discrepancy and inconsistency in depression rates is the basis for a newly funded $2.2 million five-year grant from the National Institute of Mental Health to CARAH and Center in the Park (CIP), a nationally accredited community senior center in the Philadelphia region which has received numerous awards for its innovative programming. CARAH and CIP have previously collaborated on a research program to improve chronic disease self-management in older African-Americans (see the article on page 1). In Touch: Mind, Body and Spirit, is a collaborative partnership that will explore perspectives on health and well-being among African-American elders. In the process, the partners aim to create a sustainable infrastructure for systematic mental health research and health professional research training.

This project aims to change the landscape of mental health research and care for older African-Americans. The goal is to advance clinical research that examines the relationship between depression and physical disability and to identify effective and innovative approaches to promote positive aging and mental health in African-American older adults. One of the first activities of this program will involve developing an electronic database at CIP to describe and track the health and well-being of CIP members.

According to Lynn Fields Harris, executive director of Center in the Park, this partnership is important to CIP for several reasons. "It provides the opportunity to do important research in an area that has been largely overlooked in our community, while building upon our previous successes in implementing evidence-based programs and demonstrating with hard facts and figures the positive outcomes of doing this type of work in a community-based setting."

Previous collaborations with CARAH have already had a big impact on CIP as well as the direction of research at CARAH. This new project is expected to do the same. "Working with CARAH has increased our awareness and reinforced our commitment to addressing the importance and relevance of underpinning the services and programs that CIP provides with interventions that look at serious emotional, physiological and social issues which have historically and disproportionately affected older adults in the community we serve," Ms. Harris says.

Working with CIP has increased CARAH’s ability to frame research questions and develop and implement studies that are relevant to address the specific concerns of older, urban African-Americans. We share a common goal of supporting and improving the health and well-being of the older African-American, as well as understand needs within the context of the cultural underpinnings that have shaped aging for this group.

In addition to the CARAH-CIP partnership, other Jefferson-based collaborators include: Dr. Jack London (Kimmel Cancer Center) who is developing the electronic capacity for CIP; Dr. Barry Rovner (Dept. of Psychiatry, Farber Institute for Neurosciences) who will consult on development of depression interventions; Dr. Christine Arenson (Dept. of Family and Community Medicine), who will help coordinate integration of programs with medical school and geriatric fellowship training; Dr. Janice Burke (Dept. of Occupational Therapy) who will help direct qualitative research initiatives; Dr. Susan Toth-Cohen (Dept. of Occupational Therapy), who is helping to develop the student research component and will serve as the student preceptor; Drs. Winter and White, research psychologists (CARAH) who will provide on-going consultation on depression and aging processes, and Nancy Chernett, MPH (CARAH) who will assist with project oversight and partnership coordination.

As we conduct this exciting research and share our findings over the next five years, we will be advancing scientific knowledge as to best models for developing living laboratories and research infrastructures within community settings to facilitate translation of research into the real-world context. Our goal is that the results will have an impact beyond our partnership.

For more information about the In Touch: Mind, Body and Spirit program, please contact Nancy Chernett, Program Manager (Nancy.Chernett@jefferson.edu).

This study tested a six-month intervention in which people received four 90-minute visits with an occupational therapist, as well as one 20-minute telephone contact, and one 90-minute physical therapy visit and home modifications provided by the Philadelphia Corporation for Aging. Of 319 men and women 70 years of age and older, half were assigned to intervention, and half to a control group receiving educational materials only. The therapists showed participants how to modify their homes to make them safer. Strategies included, for example, putting hand-held showers and railings in the bathroom; instructing in problem solving; and training in how to recover from a fall as well as balance and muscle strength training. An important feature of the intervention was that goals were tailored to individual needs identified by the participants themselves. By six months, participants who received the training reported fewer difficulties with activities of daily living, especially bathing and toileting, compared to those who were not assigned to the intervention. They also reported higher self-efficacy, and less fear of falling, a strong risk factor for falling and functional decline. Most of the benefits were sustained at 12 months.

A clinical implication is that primary care physicians consider a referral to such a program for their patients with functional difficulties or fear of falling. Providing home care that is tailored to the individual's personal needs may help to promote successful aging in place and increased quality of life. A policy consideration is that equipment should be reimbursable under Medicare funding. For additional information on this study and other CARAH projects, please refer to the Publication and Presentation section of the CARAH website.

More Good News

Three Division faculty members, Drs. Christine Arenson, Susan Parks, and Christine Hsieh, were recent recipients of the Bureau of Health Profession’s Geriatric Academic Career Awards. Also, the Division has focused on undergraduate, residency, and fellowship education. Despite difficulties nationally in recruiting geriatric fellows, Jefferson’s fellowship program has thrived, attracting highly qualified applicants each year. Beginning July 2006, four new fellows will be joining the program.

On another front, the Jefferson Medical College continues to develop important interdisciplinary geriatric education initiatives. It recently benefited from a two-year grant from the Association of American Medical Colleges (AAMC) and the John A. Hartford Foundation to enhance geriatric education among undergraduate medical students. This resulted in important sustained curricular changes, including increased attention to gerontology and geriatrics in the didactic curriculum, greater use of older adults and emphasis on differences across the lifespan in clinical examples, and development of specific geriatric experiences during clinical rotations.

In partnership with the Philadelphia Senior Center, and with additional support from the Pew Charitable Trusts, the Division worked with faculty from the Depts. of Nursing and Occupational Therapy and CARAH to develop the Social Service / Health Independence Program (SHIP), a unique interdisciplinary service-learning model. SHIP provides health and wellness education, screenings, social services, and health care to the over 9,000 members of the Philadelphia Senior Center. Jefferson faculty work as a team to train literally hundreds of Jefferson occupational therapy, nursing, and medical students, as well as Thomas Jefferson University Hospital residents and fellows. Our students provide excellent care while learning the value of working on interdisciplinary teams in providing integrated care to older adults within their communities.

Attendees had the opportunity to learn from and ask questions of a panel of nationally recognized experts in the field of Alzheimer’s disease and related dementias. Among them was keynote speaker, Dr. Samuel Gandy, Director of the Farber Institute for Neurosciences, Thomas Jefferson University and Dr. Barry Rovner, Director of Clinical Alzheimer’s Disease Research at the Farber Institute, and Professor, Dept. of Psychiatry. Important topics were covered including current understandings of etiology to new interventions for managing the difficult behaviors of dementia.

Save the date for the 7th Annual Dementia Management Conference which will be held September 29, 2006 at the Desmond Center in Malvern, PA. The focus will be on non-pharmacologic treatments for managing complex behaviors associated with the disease and will feature national experts on use of activity, including our own research in this area. If you would like to be placed on our mailing list for the conference brochure, please contact Lauren Acquarole, (215-503-2889 or Lauren.Acquarole@jefferson.edu) with your current contact information.

As important as the newsletter is to advancing the goals of CARAH, it is equally valuable in advancing the mission of Jefferson College of Health Professions (JCHP), within which CARAH resides. The future of health care depends very heavily on the contributions of several disciplines to meet the needs of patients, most especially the needs of our senior patients.

The College places the highest priority on the development of health professionals who are ready upon graduation to work as a member of a team in the provision of care. CARAH has adopted this interdisciplinary approach in all of its activities, and is collaborating with several departments not only in JCHP (Occupational and Physical Therapy and Nursing) but also with Jefferson Medical College (and its Farber Institute of the Neurosciences and the Depts. of Family Medicine, Psychiatry, and Neurology). The Center thus becomes an ideal site to nurture the growth and development of these interdisciplinary values and experiences.

The potential, then, for enhancing and expanding the effectiveness of team care through interdisciplinary educational experiences, for hastening the translation of the findings of the research being conducted in CARAH to the care of elderly patients especially, is a goal that coincides superbly with the mission of the College and University.

It is thus my pleasure to welcome the advent of this newsletter as a remarkable opportunity to support the development and expansion of the programs of CARAH that are so clearly connected to and supportive of the Jefferson mission.

"When I wake up I start exercising in bed. The Harvest Health classes have motivated me. I am now exercising 6 days a week."

"I use a motorized wheelchair, and I walk only a few steps. Thanks to the support from my classmates and the instructors, I achieved my action plan and am now walking in the corridor at Center in the Park. The program has motivated me to achieve my goals."

These are the accolades that Project Director Delores Palmer hears consistently from members of the Harvest Health Chronic Disease Self-Management classes at Center in the Park Senior Center, a nationally recognized senior center in the Germantown area of Philadelphia. "We are overwhelmed at the response of the community to this exciting program," Ms. Palmer reports.

In October 2003, the Administration on Aging funded a cooperative effort with the Center for Applied Research on Aging and Health (CARAH), Philadelphia Corporation for Aging (PCA), Center in the Park (CIP), and Albert Einstein Healthcare Network to translate the Chronic Disease Self- Management Program. This is an evidence-based program initially developed and tested by Dr. Kate Lorig and colleagues from the Stanford Patient Education Research Center. Whereas Dr. Lorig tested the program with white middle-upper class adults enrolled in an HMO, the goal of Harvest Health is to evaluate the feasibility and impact of translating this project for older African-Americans. Each partner has a specific role. Center in the Park is recruiting program participants and implementing the program at their site; Albert Einstein is educating primary care providers about the importance of chronic disease self-management programs; CARAH is evaluating the program; and PCA coordinates the partners' efforts.

Center in the Park has enrolled more than 500 participants, 90% of whom have completed the program and report important health benefits and lifestyle changes. Participants attend an on-site seven-week program led by Ms. Palmer, with other trained leaders, who are non-health professionals living with a chronic disease. The program’s goals are to enable participants to assume a major role in managing their chronic health conditions, increase knowledge of personal risk factors associated with chronic disease, and enhance personal responsibility in managing risk factors. CARAH is evaluating the impact of the program on participants’ health status, health behaviors, self-efficacy, and health care utilization. We also hope to demonstrate that a partnership approach to chronic disease self-management can be replicated within the network of aging services such as those provided by senior centers. To learn more about this program or to enroll as a participant, please contact Delores Palmer at (215)848-7722 or dpalmer@centerinthepark.org.

Aging is a highly personal phenomenon. It obviously affects each of us on an individual, familia, and socio-political-economic level. Only a short 50 years ago, aging was viewed as a disease rather than a natural and important stage of human development. Although older people are at increased risk for heart disease, cancer, stroke, falls and cognitive impairments, more so than any other age group, new scientific breakthroughs show that frailty and physical and cognitive decline is a complex phenomenon and not an inevitable part of aging. In fact, the vast majority of people over the age of 65 experience excellent health into their 80’s and beyond.

Scientific understandings combined with population changes continue to challenge our basic notions about growing old. With the human life span now projected at 120 years, the fastest population growth occurring among persons 85+ years old, and the number of people aged 100 having more than doubled since 1990 (Japan has over 1 million persons 90+ years!), the mechanisms of aging and the physiological, behavioral and psychological adaptations are now center stage questions. The changing age structure of the United States (12% > 65 years in USA; 16% > 65 years in PA) is unprecedented. It is a phenomenon shared worldwide with sweeping, dramatic implications for health policy, health service delivery and health professional training.

Despite major advancements in understanding the aging process and treating age related diseases, we still have a long scientific journey to realize and enable healthy aging, particularly for minority older adults for whom health disparities continue to persist. For example, a 2003 study estimates that one in three persons 65 years or older – representing more than 11 million people – are at risk of going untreated or receiving inappropriate treatments for diseases associated with aging including dementia, mobility disorders and other conditions that place older adults at increased risk of losing their independence. Thus, many critical questions of public health import are in need of answers.

Given city, state, national and world-wide population trends, a focus on the health and wellbeing of older people must take precedence in our research, education and social initiatives. This is a critical time for multiple disciplines to join forces to study and serve older adults whose health can be characterized by complexity, comorbidities and chronicity.

This newsletter is one way CARAH plans to advance an aging perspective at Thomas Jefferson University. We invite you to work with us as we move forward with research, education and clinical service innovations.