On JANUARY 2, 2011, The New York Times published an article by Pam Belluck titled: Caring for the Patient With Alzheimer’s
The article read: In a recent New York Times article, “Giving Alzheimer’s Patients Their Way, Even Chocolate,” I looked at caregiving for people with Alzheimer’s disease and described how scientists and researchers are studying approaches to caregiving that appear to ease some of the most troubling symptoms, like wandering or agitated and aggressive behavior. Certain approaches to caregiving can make life more pleasant for patients, who, research suggests, continue to feel emotions like joy or sadness even if they have no memory of the experiences that caused those emotions. And they can, in turn, make things easier for caregivers, allowing people to care for relatives with Alzheimer’s at home and delay placing them in nursing homes.
In the coming months, issues involving caregiving may be considered for inclusion in a national strategic plan on Alzheimer’s. The plan is part of the National Alzheimer’s Project Act, just passed by Congress and expected to be signed by President Obama. The act would create an advisory council of representatives from all the federal agencies concerned with health, science and aging, and the council would devise a coordinated national plan to ”accelerate the development of treatments that would prevent, halt or reverse the course of Alzheimer’s” and ”improve the early diagnosis of Alzheimer’s disease and coordination of the care and treatment of citizens with Alzheimer’s.”
Then she asked: What kinds of concerns about caregiving in both institutional and home settings do you think a federal advisory panel should focus on?
In respone to this request we submitted the following petition in letter form:
Dear Ms Belluck
In response to your question: What kinds of concerns about caregiving in both institutional and home settings do you think a federal advisory panel should focus on?
We applaud you for highlighting individual programs for people with dementia with excellent nonpharmacological interventions, such as the Beatitudes program in Arizona (“Giving Alzheimer’s Patients Their Way, Even Chocolate” by Pam Belluck; NY Times; 31 December 2010). Such programs deserve to be complimented for employing dignified and self-fulfilling nonpharmacological interventions that reduce the 4 “A’s” of Alzheimer’s: anxiety, agitation, aggression and apathy.
There is, however, a major drawback to doing this, namely that the larger unique and positive alternative paradigm (picture) of nonpharmacological interventions in Alzheimer’s is reduced to actions that sound simplistic (give people chocolate), obscuring the larger more profound picture and paradigm; the forest is being blocked by the trees. What is that larger paradigm?
1. A DIFFERENT PARADIGM Nonpharmacological interventions represent a global paradigm of Alzheimer’s treatment; much more than just individual actions such as chocolate, dolls, and environmental design. This paradigm, based on neuroscience theory, applied research, and clinical practice, has been developed by many experts over decades. If this powerful approach to dealing with dementia and reducing symptoms is to be taken seriously, the particulars, no matter how exceptional (such as museum programs for people with Alzheimer’s, providing improvisational theatre, or giving chocolate), need to be taken as examplars of a larger way of thinking about Alzheimer’s and dementia—a new paradigm—not as ends in themselves.
2. EVIDENCE-BASED PRACTICE There is a huge cache of evidence-based knowledge demonstrating how non-pharmacological interventions reduce symptoms and improve daily lives of people living with dementia and their care partners. This research is often discounted and rejected because although it is meaningful and fits the needs of the evaluation being conducted, it does not fit a particular research model—the double blind randomized controlled trial. It is important to assess these data carefully to calculate the statistical effect sizes they represent and thus their impact on people’s lives.
3. METHODOLOGY AND METHODS Much existing research is discounted by policymakers, researchers, and others because they are convinced that the only evidence worth counting is generated by double-blind randomized controlled trials (RCTs). RCTs represent one important way to generate knowledge; but only one way. Other methodologies contribute substantially to our knowledge of nonpharmacological interventions and need to be taken seriously. It makes little sense to discredit a large body of knowledge that could immensely help policy and decision-making. The following summarizes two alternative ways to think about research methodology.
The RCT gold standard assumes that 1. It is the highest level of proof, no matter what the research question, 2. It is at the top of a hierarchy of methods where other methodologies are "lower" on the continuum, and 3. That statistical significance is a measure of meaningfulness of a finding.
The alternative gold standard for nonpharmacological and other research assumes that 1. The best methodology for any research question is the methodology that fits the question best--not any particular one, 2. There is no single continuum of methodology and no absolute hierarchy, and. 3. That effect measures are an important addition to statistical significance as a measure of a finding's "meaningfulness."
4. HUMAN RIGHTS Freedom to choose, getting what you want, being part of the larger society and taking part in cultural activities are human rights everyone deserves—including those living with Alzheimer’s and other dementias. We ought to be shocked at the limits to human rights being imposed daily on those with dementia (no chocolate and no visits to museums) rather than amazed that human rights are being respected in a few places—Arizona, or New York, or Massachusetts or wherever.
The World Health Organization defines the rights of all people as dignity, independence, self-fulfillment, participation and care. Respecting these for people living with Alzheimer’s could well be a rallying cry for those who care about people living with this condition.
5. THE WAY OUT OF THE ETHICAL DILEMMA OF EARLY DIAGNOSIS In the name of science and further research, there is a movement taking place to diagnose Alzheimer’s disease long before those being diagnosed show any cognitive or behavioral symptoms. Although these tests are presented as limited to research purposes, they are highly likely to be employed in everyday practice. For the millions who will receive this early diagnosis tomorrow and the millions living with this dementia diagnosis today, early diagnosis presents a major ethical dilemma: What to do with a diagnosis if no medications are available that stop the progress of the disease? The nonpharmacological paradigm and its associated interventions represent an ethical way to respond to the call for early Alzheimer’s diagnosis since they offer a clear solution to improve the quality of life of people living with dementia.
For these reasons, we urge the President to appoint an expert and champion of nonpharmacological approaches and treatments for dementia to the Federal Advisory Panel to the National Alzheimer’s Project Act recently passed by Congress. We also urge the Federal Advisory Panel and others administering research programs for dementia to include on an equal basis in all research, both nonpharmacological treatments and pharmacological ones. By nonpharmacological "treatments" we mean all health related activities that research has demonstrated have positive behavioral and health outcomes. These include, among others: engaging activity, exercise, targeted nutrition, music, visual arts, film, drama, museums, an appropriately designed and stimulating environment, memory books, high-touch end of life care, external written cueing, information technology, training family and formal caregivers, counseling, meditation, yoga, tai chi, exercise, poetry, storytelling, pets, and even chocolate.
We also urge the Federal Advisory Panel and those administering Alzheimer’s-focused research programs and Alzheimer’s-focused intervention strategies to develop and make explicit key performance indicators suited to nonpharmacological interventions. We also urge them to include in research protocols all evaluation methods and methodologies suited to studying the effects of real-world applications of nonpharmacological treatments. We urge that all research involving treatment of dementia, both pharmacological and nonpharmacological interventions, include reporting the clinical significance of effects produced by treatments, as well as statistical significance.
Signatories
Norman Abeles, PhD
Professor Emeritus
Department of Psychology
Michigan State University
Past President American Psychological Association
Carolyn Aldwin, Ph.D.
Professor
Dept. of Human Development & Family Sciences
Oregon State University
Mary Guerriero Austrom, PhD
Wesley P. Martin Professor of Alzheimer Disease Education
Department of Psychiatry and
Director, Education Core
Indiana Alzheimer Disease Center
Anne Basting, PhD
Director, Center on Age & Community
University of Wisconsin Milwaukee
Professor Elizabeth Beattie (US citizen)
Director, Dementia Collaborative Research Centre (DCRC)
Carers and Consumers
School of Nursing
Queensland University of Technology
Brisbane, Australia.
Cornelia Beck, RN, PhD, FAAN
Professor, Department of Geriatrics
College of Medicine
University of Arkansas for Medical Sciences
Michelle Bourgeois, Ph.D., CCC-SLP
Professor, Dept of Speech & Hearing Science
The Ohio State University
Elizabeth Brawley, AAHID, IIDA, CID
Design Concepts Unlimited
San Francisco, CA
Board Member, American Academy of Healthcare Interior Designers
Kathleen Buckwalter, PhD RN FAAN
Professor Emerita
University of Iowa College of Nursing
Lin Buettner, PhD, LRT, CTRS
Professor, Therapeutic Recreation and Gerontology
University of North Carolina at Greensboro
Delta Society Instructor and Team Evaluator
Editor American Journal of Recreational Therapy
Margaret Calkins, PhD, CAPS, EDAC
President, IDEAS Consulting Inc.
Board Chair, IDEAS Institute
Kirtland OH
Cameron Camp PhD
Director, Research and Product Development
Hearthstone Alzheimer Care
Cleveland, Ohio
Sean Caulfield
Co-Founder, Creative Director
ARTZ: Artists for Alzheimer’s
I’m Still Here Foundation
John C. Cavanaugh, Ph.D., Chancellor
Pennsylvania State System of Higher Education
Dixon University Center, and
Past President, Division 20 of APA
Paul K. Chafetz, Ph.D.
Clinical Geropsychologist
Dallas, TX
Uriel Cohen, D.Arch.
Emeritus Professor of Architecture
Emeritus Co-Director, Institute on Aging and Environment University of Wisconsin-Milwaukee
Alice Cronin-Golomb, PhD
Professor of Psychology
Boston University
Kim Curyto, PhD
CLC Psychologist and Research Scientist
Veterans Affairs Western NY Healthcare System
Batavia, NY
Marlene R. DeVoe, PhD
Department of Psychology
St. Cloud State University
Minnesota
John P. Eberhard, FAIA
Founding President
Academy of Neuroscience for Architecture
Donna Fick, PhD, RN, FGSA, FAAN
Professor of Nursing, School of Nursing
Professor of Medicine, Department of Psychiatry
The Pennsylvania State University
Karen Fingerman, PhD
Berner Hanley Professor in Gerontology
Child Development & Family Studies
Purdue University
Jane E. Fisher, Ph.D.
Professor
Department of Psychology
University of Nevada, Reno
Director, Nevada Caregiver Support Center
Valerie Fletcher
Executive Director
Institute for Human Centered Design
Boston, MA
Lauren S. Fox, Ph.D.
Staff Psychologist / Geropsychologist
Veterans Affairs, Long Beach Healthcare System
Long Beach, CA
Michael Friedman
Adjunct Associate Professor
Columbia University Schools of Social Work and Public Health
Maribeth Gallagher, Psych NP, MS
Dementia Program Director
Hospice of the Valley
Phoenix, AZ
Jamie Garis, Psy.D.
DMH Programs Director
Heritage Clinic / A Division of Center for Aging Resources
Pasadena, CA
Daniel R. George, Ph.D, M.Sc
Assistant Professor
Department of Humanities
Penn State College of Medicine
Milton S. Hershey Medical Center
Hershey, PA
Dalia Gottlieb-Tanaka, PhD
Post Doctorate Fellow
Department of Psychology
University of British Columbia &
Chair, Society for the Arts in Dementia Care
Vancouver, BC
William E. Haley, PhD
Professor, School of Aging Studies
University of South Florida
Paula E. Hartman-Stein, Ph.D.
Adjunct Associate Professor of Psychology
Kent State University.
Clinical Psychologist
Center for Healthy Aging
Kent, Ohio
Patricia Cristine Heyn, PhD
Assistant Professor
Multisensory Activities Research for Dementia and Prevention of Dementia
Physical Medicine & Rehabilitation Department
School of Medicine
University of Colorado Denver Anschutz Medical Campus
State Senator Pat Jehlen
Co-Chair, Joint Committee on Elder Affairs
Massachusetts Legislature
M.Cecelia Kimble, Ph.D.
Georgia Licensed Psychologist
(Founder, Interest Group on Aging of the
Georgia Psychological Association)
Georgia Diagnostic & Classification Prison
Jackson, GA
Alexander Kraft, Psy.D.
Clinical Health Psychologist
US Dept of Veterans Affairs
Home-based Primary Care
San Antonio TX
David A. Krauss, Ph.D.
Clinical psychologist specializing in nursing home consultation.
Cleveland, Ohio
Sue Levkoff
Professor, Endowed Chair in Community and Social Support
South Carolina Center for Economic Excellence &
SeniorSMART: SmartHOME
University of South Carolina, and
Lecturer, Department of Global Health and Social Medicine
Harvard Medical School.
Rebecca G. Logsdon, PhD
Research Professor, Licensed Clinical Psychologist
Northwest Research Group on Aging
University of Washington School of Nursing
Seattle, WA
Nancy B. Emerson Lombardo, Ph.D.
Adjunct Research Assistant Professor of Neurology
Boston University School of Medicine, Dept. of Neurology,
National Board Member, Emeritus, Alzheimer's Association, and
Member, Medical and Scientific Advisory Committee,
Alzheimer's Association of Massachusetts and New Hampshire
Carol O. Long, PhD, RN, FPCN
Palliative and Geriatric Consultant
Co-Director, Palliative Care for Advanced Dementia Program
Beatitudes Campus
Phoenix, Arizona
Katherine S. Luci, Psy.D.
Geropsychology Fellow
Salem Veterans Affairs Medical Center
Salem, VA
Wendy Lustbader, MSW
Author of Counting on Kindness
Affiliate Associate Professor
University of Washington School of Social Work
Daniel Kuhn, MSW
Community Educator
Rainbow Hospice & Palliative Care
Mount Prospect, IL
Yeou-Cheng Ma, M.D.
Developmental Pediatrician
Assistant Clinical Professor of Pediatrics Albert Einstein College of Medicine, and
Executive Director, Children's Orchestra
Wingyun Mak, PhD
NRSA Postdoctoral Fellow
Department of Psychiatry
University of Rochester
Clare Cooper Marcus, MA, MCP
Professor Emerita
Departments of Architecture and Landscape Architecture
University of California, Berkeley
Benjamin T. Mast, Ph.D.
Associate Professor
Psychological and Brain Sciences
University of Louisville
Victor Molinari, Ph.D., ABPP
Professor
Dept of Aging and Mental Health Disparities
College of Behavioral and Community Sciences
Louis de la Parte Florida Mental Health Inst
University of South Florida
Suzann Ogland-Hand, PhD
Director, Center for Senior Care
Pine Rest Christian Mental Health Services
Grand Rapids, Michigan
Robin Orr
President
Robin Orr and Associates
Former Consultant to the United States Air Force Medical Services
Santa Barbara, CA
Meredith Beit Patterson, MSW, LICSW, CMC
Professional Geriatric Care Manager
Meredith Patterson Associates, LLC
Concord, MA
Cheryl S Pelletier, Ph.D.
Bangor Psychological Association
Bangor, Maine
Judith Rabig, RN, PhD
Vice President
Masonic Health System
Charlton, MA
Rebecca E. Ready, Ph.D.
Associate Professor
Department of Psychology and the Neuroscience and Behavior Program
The University of Massachusetts, Amherst
Victor Regnier FAIA
ACSA Distinguished Professor
Professor of Architecture and Gerontology
University of Southern California
Barry Reisberg, M.D.
Professor of Psychiatry
Director, Fisher Alzheimer’s Disease Program
Clinical Director, Aging & Dementia Clinical Research Center
Director, Clinical Core, NYU, Alzheimer’s Disease Center New York University Langone Medical Center, Center of Excellence on Brain Aging
Judah L. Ronch, Ph.D.
Dean and Professor
Erickson School
University of Maryland, Baltimore Campus
Jon Rose, Ph.D., Director
Spinal Cord Injury Outpatient Psychology
Veterans Affairs Palo Alto Health Care System, and
Past-President, Society of Clinical Geropsychology
Timothy Saar,PhD
Clinical Psychologist
Saar Psychological Group
Charleston, WV
Joyce Simard MSW
Geriatric Consultant
Florida, USA and
Adjunct Associate Professor
School of Nursing and Midwifery
University of Western Sydney, Australia
Marianne Smith, PhD, RN
Assistant Professor
University of Iowa College of Nursing
Michael C. Smith, Ph.D.
Past President
Psychologists in Long Term Care
New York
Janet K. Specht, PhD, RN, FAAN
Professor
Director, John A. Hartford Center of Geriatric Nursing Excellence
The University of Iowa College of Nursing
Iowa City, IA
Catherine Strong, Ph.D.
Clinical Psychologist
Bellingham, WA
Richard Taylor PhD
Person with dementia
Board Member, Alzheimer’s Association
Houston and Southeast Texas Chapter
Cypress, TX
Linda Teri, Ph.D.
McAninch Professor in Nursing
Dept of Psychosocial and Community Health
Director, Northwest Research Group on Aging
School of Nursing, University of Washington
Bill Thomas, MD
Founder, The Eden Alternative
Director of Integrated Applications
Erickson School
University of Maryland, Baltimore Campus
Dolores Gallagher Thompson, Ph.D., ABPP
Director, Stanford Geriatric Education Center and
Professor of Research, Dept. of Psychiatry & Behavioral Sciences
Stanford University School of Medicine
James G. Stockard, Jr., MCP
Curator, The Loeb Fellowship
Lecturer in Housing Studies
Harvard University Graduate School of Design
Ladislav Volicer, MD, PhD
School of Aging Studies
University of South Florida
Susan Krauss Whitbourne, Ph.D
Professor of Psychology
University of Massachusetts, Amherst
Peter Whitehouse
Professor of Neurology and former or current Professor of Psychiatry, Neuroscience, Psychology, Cognitive Science, Bioethics, Nursing, History, and Organizational Behavior
Case Western Reserve University
Physician, University Hospitals Case Medical Center
Director, Adult Learning, The Intergenerational School
Shaker Heights, OH
Kimberly Williams, LMSW
Director
Geriatric Mental Health Alliance of New York
Janet Anderson Yang, Ph.D.
Clinical & Training Director
HIPAA Officer
Center for Aging Resources
Pasadena, CA
Steven H. Zarit
Professor and Head
Department of Human Development and Family Studies
Penn State University
John Zeisel PhD
President, The I’m Still Here Foundation and
Hearthstone Alzheimer Care
Woburn, MA
The entire Board of Directors of the American Therapeutic Recreation Association (ATRA):
• Mary Ann Aquadro, PhD, CTRS
University of Southern Mississippi
President, American Therapeutic Recreation Association
• Vicki Scott, MS, CTRS
Hook Rehabilitation Center
President-Elect
• Heather J. Sedletzeck, CTRS
RT Solutions, Inc.
Secretary
• Lisa Morgan, CTRS
Siskin Hospital for Physical Rehabilitation Treasurer
• Kari Kensinger, Ph.D., CTRS
Grand Valley State University
Member at Large
• Nancy Navar, Re.D., CTRS
University of Wisconsin- La Crosse
Member at Large
• Ramon Zabriskie, Ph.D., TRS, CTRS
Brigham Young University
Member at Large
• Richard Williams, PH.D, CTRS
East Carolina University
Member at Large
• Carolee Rodrigo, CTRS, RTC
Masonic Homes of CA
Member at Large
