Despite more than two decades of advances in diagnostic criteria and technology, symptoms of Alzheimer's disease and Related Dementias (ADRD) too often go unrecognized or are misattributed, causing delays in appropriate diagnoses and care that are both harmful and costly. Contributing to the variability and inefficiency is the lack of multidisciplinary ADRD evaluation guidelines to inform U.S clinicians in primary and specialty care settings.
Responding to the urgent need for more timely and accurate Alzheimer's disease diagnosis and improvement in patient care, a workgroup convened by the Alzheimer's Association has developed 20 recommendations for physicians and nurse practitioners. There currently are no U.S. national consensus best clinical practice guidelines that provide integrated multispecialty recommendations for the clinical evaluation of cognitive impairment suspected to be due to ADRD for use by primary and specialty care medical and nursing practitioners.
The recommendations range from enhancing efforts to recognize and more effectively evaluate symptoms to compassionately communicating with and supporting affected individuals and their caregivers. The recommendations were reported at the Alzheimer's Association International Conference (AAIC) 2018 by Alireza Atri, MD, PhD, Co-chair of the AADx-CPG workgroup, and Director of the Banner Sun Health Research Institute, Sun City, AZ, and Lecturer in Neurology at the Center for Brain/Mind Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston. Details of the AADx-CPG workgroup document are being honed with input from leaders in the field, with the goal of publication in late 2018.
At their core, the recommendations include guidance that:
- All middle-aged or older individuals who self-report or whose care partner or clinician report cognitive, behavioral or functional changes should undergo a timely evaluation.
- Concerns should not be dismissed as "normal aging" without a proper assessment.
- 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. These new guidelines will provide an important new tool for medical professionals to more accurately diagnose Alzheimer's and other dementias. As a result, people will get the right care and appropriate treatments; families will get the right support and be able to plan for the future."
In 2017, the Alzheimer's Association convened a Diagnostic Evaluation Clinical Practice Guideline workgroup (AADx-CPG workgroup) of experts from multiple disciplines in dementia care and research, representing medical, neuropsychology, and nursing specialties. The AADx-CPG workgroup used 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 can inform the diagnostic process across all care settings, and that 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 (CPG) recognize the broader category of "Cognitive Behavioral Syndromes" -- indicating that neurodegenerative conditions such as ADRD lead to both behavioral and cognitive symptoms of dementia. As a result, these conditions 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 ADRD 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 Atri. "The guidelines can empower patients, families, and clinicians to expect that symptoms will be evaluated in a patient-centered, structured, and collaborative manner. In addition, they help to ensure that, regardless of the specific diagnosis, the results are 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:
- First, establish the presence and characteristics of any substantial changes, to categorize the cognitive behavioral syndrome.
- Second, investigate possible causes and contributing factors to arrive at a diagnosis/diagnoses.
- Third, appropriately educate, communicate findings and diagnosis, and ensure ongoing management, care and support.
"Evaluation of cognitive or behavioral decline is often especially challenging in primary care settings," said Bradford Dickerson, MD, MMSc, Co-chair of the workgroup, and Director of the Frontotemporal Disorders Unit at Massachusetts General Hospital, and Associate Professor of Neurology at Harvard Medical School, Boston. "Also, with recent advances in available diagnostic technology, there is a need for guidance on use of such tests in specialty and subspecialty care settings."
According to the workgroup, a timely and accurate diagnosis of ADRD increases patient autonomy at earlier stages when they are most able to participate in treatment, life and care decisions; allows for early intervention to maximize care and support opportunities, and available treatment outcomes; and may also reduce health care costs. The Alzheimer's Association encourages early diagnosis to provide the opportunity for people with Alzheimer's to participate in decisions about their care, current and future treatment plans, legal and financial planning, and may also increase their chances of participating in Alzheimer's research studies.
"Next steps include reaching out to physician groups and medical societies to encourage primary care doctors, dementia experts, and nurse practitioners to adopt these new best clinical practice guidelines," Hendrix said.