Caring for people with Alzheimer's or other dementias is a daunting challenge, not just for family members, but also for primary care providers. Despite hard work and the best of intentions, physicians and other professionals just don't have the time and training under the existing fee-for-service model to unravel the mysteries of this heartbreaking disease.
So we need a new approach, a patient and family-centered Model of Care that enables us to look at dementia through a new lens. The current state of Alzheimer's care is simply unacceptable: an estimated 50% to 60% of all patients with dementia will die before ever receiving a proper diagnosis. We all know we can do better. So we'd like to share a few cases we have encountered at Banner Alzheimer's Institute (BAI), in the hope that it may benefit patients, families and professionals.
Take the case of an exhausted caregiver, for example, who understandably loses their patience when their loved one suffering from dementia repeatedly keeps asking, "Where's Mom? Where's Mom?" A reflexive angry reply could be: "Mom's been gone for 30 years!" That response only makes matters worse, but the family does not know any better because they've never had the proper training.
That same caregiver could be coached to "distract and redirect," saying, "You know, I was just thinking about Mom, and what a great time we had when..." Or let's say that same dementia patient awakens at 3 a.m. and says "Let's have a picnic!" Instead of the caregiver telling the patient she is crazy, the caregiver might say "OK, let's go to the kitchen and pack our food." Often, within moments, the patient can be distracted back to bed. With these techniques, the caregiver can sway the patient to move on to another subject. This approach is far better than "treating" the patient with possibly toxic and ineffective medications--or responding with frustration.
In a more disturbing case, an elderly patient repeatedly threw feces when he went into the bathroom. Surely a recipe for medical intervention: powerful sedatives or worse, even hospitalization. But in this instance, a trained clinician eventually had the time to observe that the patient only became agitated when he looked in the bathroom mirror and couldn't recognize the stranger looking back at him. Most practitioners just don't have the time to play Sherlock Holmes. In this case, the doctor finally realized that all the patient really needed was for the care team to remove the mirror. Mystery solved.
These brief but compelling, actual cases illustrate the potential for progressive care programs to change the extremely costly cycle of dementia care by avoiding involuntary hospitalization and needless medication. With proper support and more training, practitioners and caregivers can stop labelling the behavior as "bizarre" or "acting out" and instead work to keep patients comfortable at home by focusing on what they really need.
The hospital can be an especially disturbing place for patients with dementia. Confused to begin with, persons with dementia are placed in an environment that guarantees clinical worsening: unfamiliar, noisy, full of unwelcome strangers, and at risk for "treatments" that usually cause harm. These misguided efforts to treat dementia contribute to healthcare costs that are about 300 percent more than those of otherwise-clinically identical patients.
Progressive, patient and family-centered care models have a few traits in common:
• Providers and caregivers engage patients and family more directly by asking a disarmingly simple and crucial question that our healthcare system too often forgets—or doesn't have time to ask: "What do you need?"
• Physicians, nurses and social workers function as a coordinated team and are trained to help families cope with the Pandora's Box of medical and nonmedical needs, ranging from extreme, even violent behaviors, to depression, loss of language ability, physical regression, nutritional, financial and legal issues.
• Nurses and social workers visit patients at their homes to provide the needed onsite support—a service that most clinicians under the current payment system are just not able to offer.
• These care programs adapt and improve as the care team learns more from each interaction, making the providers more effective for the next patient and family.
A Model for Other Providers
BAI's care model, which has these traits, is striving to demystify the diagnostic and treatment process and help the broader community of providers deliver better dementia care. It also will help primary care clinicians identify patients at high risk for dementia through initiatives such as alerts programmed into the electronic medical record system.
The new paradigm will give more providers the tools to evaluate their patients' cognitive, functional and psychological state before it's too late. It will also train them on the various "care paths" they can follow: here's how you can handle moderate severity Alzheimer's, here's when a case manager can help, and here's when you need to call in a specialist.
This Model of Care will make dementia care more efficient while, more importantly, improving life for patients with Alzheimer's and other dementias and for their families.
Pierre Tariot, MD, director of Banner Alzheimer's Institute, is board-certified in internal medicine and geriatric psychiatry. He received intensive training in developing new treatments for Alzheimer's disease at the National Institutes of Health. Dr. Tariot has investigated and lectured extensively on multiple aspects of diagnosis and therapy for dementia and Alzheimer's as well as recognition and management of behavioral disturbances in dementia. He has devoted his career to helping patients and families cope with the effects of dementia and is a recognized leader in the development of new Alzheimer's treatments.
Eric Reiman, MD, is chief executive officer of Banner Research, executive director of Banner Alzheimer's Institute, clinical director of the Neurogenomics Division at the Translational Genomics Research Institute (TGen), professor of psychiatry at the University of Arizona, and director of the Arizona Alzheimer's Consortium. His research interests include brain imaging, genomics and their application to the study of normal and abnormal human behaviors; the early detection, tracking and study of Alzheimer's disease; and the accelerated evaluation of presymptomatic Alzheimer's disease treatments. Dr. Reiman is internationally recognized for his contributions to the fields of brain imaging, the behavioral neurosciences and the presymptomatic study of Alzheimer's disease.
William Burke, MD, is the Director of the Stead Family Memory Center and a board-certified physician in geriatric psychiatry. Dr. Burke received his medical degree from the University of Nebraska Medical Center in Omaha, NE where he also completed an internship in Internal Medicine. He performed his residency in Psychiatry at Barnes Hospital and Washington University Medical School in St. Louis, MO. He received additional post-graduate training at the Alzheimer Disease Research Center at Washington University while also studying psychiatric epidemiology. His research interests have focused on evaluation of potential new treatments for Alzheimer disease, delirium and depression with a particular interest in disease prevention.
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