Alzheimer’s disease is one of the most devastating illnesses an individual can experience. This devastation is, in large part, based on the possibility of existing for years without what most people consider to be the essence of humanity, our memories. Bender and Cheston (1997) presented a model of the subjective experience of individuals diagnosed with dementia. This model describes 3 discrete stages. The first stage focuses on the feelings experienced as a result of being diagnosed with dementia: anxiety, depression, grief, and despair/terror. In a study conducted by Dr. Puentes during his post-doctoral work with funding from the John A. Hartford Foundation and the Rand/Hartford Initiative, he found evidence to support Bender and Cheston’s model. Study participants and their caregivers described feelings of apprehension and anxiety prior to and following the diagnosis of Alzheimer’s disease that had a negative impact on their quality of life. For 12 to 18 months following the diagnosis, these individuals devoted most of their energies to trying to assimilate their diagnosis and plan for the future. The uncertainty associated with the disease process contributed to feelings of clinical and sub-clinical anxiety. Study participants also described the negative impact that even sub-clinical symptoms of anxiety had on their functional status. Sometimes, healthcare providers and patients explored and attempted to manage these feelings. But more often, they were looked at as expected sequelae of the disease process and not specifically addressed in the disease management plan. The management of co-morbid anxiety associated with Alzheimer’s disease presents a significant challenge to healthcare providers. The idiosyncratic response to anti-anxiety medications in this population and lack of empirically validated anxiety self-management strategies challenge healthcare providers to offer interventions that respond to patients’ needs for control and positive quality of life.
A growing body of literature supports the proposition that healthcare providers need to shift paradigms that drive dementia care. The predominant paradigm is deficit and loss-based and emphasizes the patient’s dependent role in the disease management process. Bender and Cheston (1997), Sabat (2001) and others suggest that the emerging paradigm needs to be strengths-based and to engage the patient as an active partner in the disease management process.
Our current collaboration builds on Dr. Puentes’ earlier work exploring the subjective experience of anxiety for individuals diagnosed with mild to moderate Alzheimer’s disease. The current study is being conducted with the financial support of the UMDNJ Foundation. Using a phenomenological qualitative research approach, individuals who utilize the services of the NJISA are invited to participate in interviews regarding their experiences with Alzheimer’s disease. Particular emphasis is placed on the stressors they experience and the techniques they use to self-manage these stressors. The goal of this study is to begin developing a model of the subjective experience of anxiety for these patients. Identification of precipitating factors and stressors as well as patient and caregiver responses will provide the data needed to model the unique dynamics associated with anxiety as experienced by this patient population. This is the first step in the development of empirically validated anxiety management strategies that will contribute to successfully recognizing and controlling symptoms, extending the period of effective functional status and enhancing quality of life for this patient population and their caregivers.
Our future collaborations will focus on the development of empirically validated self-management strategies that can be incorporated into patients’ treatment plans. Consistent with the mission of NJISA, we are planning to explore ways to empower patients and their families to be active partners in managing their illness. Dr. Puentes is particularly interested in exploring the anxiety management functions of reminiscence.
William J. Puentes, PhD, RN, PMHCNS-BC, an associate professor at the UMDNJ- School of Nursing, teaches gerontological and mental health nursing. He is a former John A. Hartford Foundation/AACN Building Academic Geriatric Nursing Capacity Postdoctoral Claire Fagin Fellow. His research focuses on geropsychiatric nursing issues. He is the author of 30 peer-reviewed journal articles and abstracts in the area of gerontological mental health nursing and has presented his work in national and international forums.
Anita Chopra, MD, a geriatric physician and educator, has been an advocate for older adults for more than 25 years. She is director of the New Jersey Institute for Successful Aging at the UMDNJ-School of Osteopathic Medicine. She is also a professor of medicine, board certified internist/geriatrician, certified medical director for long-term care, and fellow of both the American College of Physicians and the American Geriatrics Society.
Since 1981, Dr. Chopra has been integral in the development of geriatrics at UMDNJ; and the Institute is recognized as one of the premier sources of geriatric care in New Jersey. The Institute provides interdisciplinary training in geriatrics and gerontology to physicians-in-training, undergraduate and graduate students in the biomedical sciences and health related professions, physicians in the community, other health related professionals, and the lay public. Three of its educational initiatives have achieved national reputations. The Institute’s research programs include behavioral science, basic science, and clinical research. For the past 9 years, the Institute has been consistently ranked by US News and World Report among the top 20 graduate schools in geriatric medicine in the nation. In 2009, it ranked 13th.
Dr. Chopra has a special interest in Alzheimer’s disease and related disorders, osteoporosis, pain management, end of life care, and long-term care and has
published in these areas. She has also served as either the principal investigator or co-investigator for 19 clinical trials related to dementia, depression, and osteoarthritis and numerous grants funded by both the public and private sectors.