Evaluation should involve not only the patient and clinician but, almost always, also involve a care partner (e.g., family member or confidant).
“Too often cognitive and behavioral symptoms due to Alzheimer’s disease and other dementias are unrecognized, or they are attributed to something else,” said James Hendrix, PhD, Alzheimer’s Association director of Global Science Initiatives and staff representative to the workgroup. “This causes harmful and costly delays in getting the correct diagnosis and providing appropriate care for persons with the disease. As a result, people don’t get the right care or the right treatments; families don’t get the right support, and they don’t have the opportunity to properly plan for the future”.
To address this gap, in 2017 the AADx-CPG Workgroup convened, with experts from multiple disciplines in dementia care and research representing medical, neuropsychology, and nursing specialties. The AADx-CPG Workgroup utilized a rigorous process for evidence-based consensus guideline development.
“Our goal is to provide evidence-based and practical recommendations for the clinical evaluation process of Cognitive Behavioral Syndromes, Alzheimer’s disease and related dementias that are relevant to a broad spectrum of U.S. health care providers, Atri said. “Until now, we have not had highly specific and multispecialty U.S. national guidelines that integrate knowledge to inform the diagnostic process across all care settings, and which provide standards meant to improve patient autonomy, care, and outcomes.”
“Whether in primary or specialty care, the recommendations guide best practices for partnering with the patient and their loved ones to set goals, and to appropriately educate and evaluate memory, thinking, and personality changes,” Atri added.
The Clinical Practice Guidelines recognize the broader category of “Cognitive Behavioral Syndromes” – indicating that neurodegenerative conditions such as Alzheimer’s disease and related dementias lead to both behavioral and cognitive systems of dementia. As a result, these conditions or disease can produce changes in mood, anxiety, sleep, and personality – plus interpersonal, work and social relationships – that are often noticeable before more familiar memory and thinking symptoms of Alzheimer’s disease and related dementias appear.
“In all cases, there is something we can do to help and support those who entrust us with the privilege of advising and caring for them,” said Dr. Atri. “The guidelines can empower patients, families, and clinicians to expect that any concerning symptoms are evaluated in a patient-centered, structured, and collaborative manner. In addition, they help to ensure that, regardless of the specific diagnosis, this knowledge is communicated in a timely and compassionate way to help patients and families live the best lives possible.”
The 20 consensus recommendations describe a multi-tiered approach to the selection of assessments and tests that are tailored to the individual patient. The recommendations emphasize obtaining a history from not only the patient but also from someone who knows the patient well to:
Appropriately educate, communicate findings and diagnosis, and ensure ongoing management, care and support.
According to the workgroup, a timely and accurate diagnosis of Alzheimer’s disease and related dementias increases patient autonomy at earlier stages when they are most able to participate in goals of treatment and life and care decisions; allows for early intervention to maximize care and support opportunities, and treatment outcomes; and may also reduce health care costs in the long run.
About Banner Sun Health Research Institute
Since 1986, Banner Sun Health Research Institute, part of nonprofit Banner Health, has been a leader nationally and internationally in the effort to find answers to disorders of aging including Alzheimer’s and Parkinson’s disease. The institute, together with its Arizona Alzheimer’s Consortium partners, has been designated by the National Institutes of Health as one of just 29 Alzheimer’s Disease Centers in the nation. The institute’s Cleo Roberts Center for Clinical Research takes laboratory discoveries to clinical trials that foster hope for new treatments. Banner Health is Arizona’s leading health care provider and largest private employer. For more information, visit www.bannershri.org or visit us on Facebook.
About Alzheimer’s Association International Conference (AAIC)
The Alzheimer’s Association International Conference (AAIC) is the world’s largest gathering of researchers from around the world focused on Alzheimer’s and other dementias. As a part of the Alzheimer’s Association’s research program, AAIC serves as a catalyst for generating new knowledge about dementia and fostering a vital, collegial research community.
Editor’s note: Podemos dar entrevistas en español para esta historia.