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Guidelines developed by an expert workgroup are the first of their kind in more than two decades, and the first ever applicable to primary care settings.
An estimated 6.9 million Americans aged 65 and older are currently living with Alzheimer’s dementia. That number could grow to 13.8 million by 2060, according to the Alzheimer’s Association’s “2024 Alzheimer’s Disease Facts and Figures,” published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. According to the same report, deaths related to stroke, heart disease and HIV have decreased since 2000, whereas deaths from Alzheimer’s disease (AD) have increased by 140%. AD is the fifth-leading cause of death among Americans aged 65 and older.
In response to these alarming numbers, a recently published clinical practice guideline aims to modernize the diagnosis of AD and related neurodegenerative disorders (ADRD) in primary and specialty care settings. Developed by an interdisciplinary workgroup, the Alzheimer’s Association Clinical Practice Guideline for the Diagnostic Evaluation, Testing, Counseling and Disclosure of Suspected Alzheimer’s Disease and Related Disorders (DETeCD-ADRD CPG) is the first comprehensive guideline of its kind in more than two decades, reflecting significant advances in diagnostic biomarkers and care pathways.
The guideline, detailed in a special issue of the journal Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, provides 19 practical recommendations for clinicians. The steps guide a thorough diagnostic process, offering a framework for evaluating suspected cognitive impairment or dementia caused by ADRD, including Lewy Body Disease, Frontotemporal Lobar Degeneration, Vascular Cognitive Impairment and Dementia (VCID) in addition to several other diseases and conditions that may cause or contribute to cognitive-behavioral impairment.
“With this guideline, we expand the scope of prior guidelines by providing recommendations for practicing clinicians on the process from start to finish,” said Brad Dickerson, MD, director of the frontotemporal disorders unit at Massachusetts General Hospital and professor of neurology at Harvard Medical School.
“We recommend that medical professionals begin by making sure their thinking about the goals of the evaluation aligns with that of the patient, which usually requires a discussion to educate the patient on the specific steps of the process. Then, we outline the steps involved in obtaining information about symptoms and examination, followed by a variety of diagnostic tests tailored to the patient and summarize best practices regarding the diagnostic disclosure process,” Dickerson continued.
The DETeCD-ADRD CPG emphasizes a structured and patient-centric approach, ultimately providing the framework for a process that is tailored to each patient, culminating in a three-step diagnostic formulation:
The process includes gathering a detailed history of symptoms and their impact on daily life, assessing cognitive abilities through tests and obtaining brain imaging and laboratory tests to rule out other contributing conditions. Advanced tools, including specialized brain scans and spinal fluid tests, may also be incorporated when clinically appropriate.
“The workgroup provides rigorous, evidence- and practice-informed foundational steps that capture the core elements of a high-quality evaluation and disclosure process,” Dickerson said. “The guidelines are formulated into 19 practical recommendations that are applicable to any practice setting, including primary care, along with additional guidance for specialists and subspecialists.”
The guideline prioritizes patient and care partner involvement, recognizing that cognitive symptoms often impair individuals’ ability to fully engage in the diagnostic process. “We emphasize the importance of the involvement of a care partner throughout this process for most patients, since cognitive symptoms often compromise a person’s ability to process all of this information by themselves,” Dickerson said.
Timely and accurate diagnoses are critical as new treatment options emerge for ADRDs. The recommendations are intended to empower patients and their families, allowing them greater autonomy to make informed decisions about care and planning.
“The AD/ADRD field has entered a new era and is moving rapidly, which is very exciting,” Alireza Atri, MD, PhD, chief medical officer, Banner Research and director of the Banner Sun Health Research Institute, Banner Health, Sun City and Phoenix, Arizona and lecturer on neurology, Brigham and Women’s Hospital and Harvard Medical School, said in an organizational release.
“This first U.S. interdisciplinary national evaluation guideline, designed for broad clinical settings, provides a comprehensive foundation summarizing a high-quality and personalized process within which specific tests are slotted and can be updated as the field evolves.”
Past guidelines have been primarily targeted at specialists, but the DETeCD-ADRD CPG was explicitly designed for use across diverse care settings, including primary care. This inclusivity reflects the growing role of primary care physicians in the recognition and management of cognitive disorders. The guideline’s adaptability supports its integration into routine clinical practice and evolving advancements in biomarkers and diagnostic tools.
“Some details of the guideline will likely require modification as new tools and biomarkers become sufficiently validated for appropriate clinical use in real-world practice,” Atri explained. “The workgroup leveraged best evidence and practices to empower persons with memory or thinking symptoms or concerns and their loved ones, clinicians and health systems, to engage in a person-centered process that will enhance knowledge, appreciation and autonomy for the person with a potential illness—and facilitate doing what is right for them.”
The workgroup encourages clinicians to consider the guidelines and the benefit of incorporating them into their practices. “These guidelines are important because they guide clinicians in the evaluation of memory complaints, which could have many underlying causes,” said Maria C. Carrillo, PhD, chief science officer and medical affairs lead, Alzheimer’s Association. “That is the necessary start for an early and accurate Alzheimer’s diagnosis. In addition, these guidelines provide clinicians information about other underlying causes that may contribute to the memory complaints.”