The recommendations will provide an important tool to help improve the quality of the diagnostic process, so patients receive an early and accurate diagnosis.
At the 2018 Alzheimer’s Association International Conference in Chicago, Illinois, the Alzheimer’s Association Diagnostic Evaluation Clinical Practice Guideline workgroup (AADx-CPG), consisting of a multidisciplinary team of physicians and nurse practitioners, released new information on its first-ever clinical practice guidelines for evaluation of cognitive impairment regarding Alzheimer disease and related dementias (ADRD) in both primary care and specialty settings.
Until now, there have been no US national consensus best practice guidelines that provided integrated multispecialty recommendations for clinical evaluation of cognitive behavioral syndromes and Alzheimer disease and related dementias (ADRD) relevant to a broad spectrum of health care providers who encounter and care for affected individuals and care partners.
To address the gap, in early 2017 the workgroup evaluated literature, outlined gaps and integrated evidence and clinical experience in order to provide consensus recommendations for clinical evaluation of ADRD clinical spectrums. The workgroup aimed to define best practice points providing practical and specific US guidelines, multitiered in approach and relevant in primary and specialty settings.
“Far too often, people are not being diagnosed, or they’re being misdiagnosed. In fact, our data has shown that people with Alzheimer or dementia, 45% were never told of their diagnosis by a health care professional, so there’s a huge need,” James Hendrix, PhD, Director of Global Science Initiatives of the Alzheimer’s Association, told NeurologyLive.
The 20 evidence-based consensus recommendations encompass broad areas of care, ranging from emphasizing early diagnosis of all types of dementia to enhancing efforts to recognize and more effectively evaluate symptoms to communicating compassionately with and supporting patients and caregivers.
At the core, the guidelines recommend 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 without proper evaluation; and evaluation should not only involve the individual and clinician but, almost always, the caregiver.
Hendrix tells NeurologyLive that far too often individuals are turned away and concerns are dismissed as “normal aging,” but these guidelines emphasize that concerns should be taken seriously, and an evaluation should be performed.
The guidelines recognize a broader category of “cognitive behavioral syndromes,” which indicates that ADRD may lead to both behavioral and cognitive symptoms of dementia. These conditions, as a result, can produce changes in mood, anxiety, sleep and personality, as well as interpersonal, work and social relationships, which are often noticeable before common memory and thinking symptoms of ADRD appear.
Embedded within the guidelines is a multi-tiered approach to selection of assessments and tests tailored specifically to each patient. Among this, the recommendations accentuate the need for obtaining a history not only from the patient but also from someone close to the patient in order to establish the presence and characteristics of substantial changes to categorize the cognitive behavioral syndrome; investigate possible causes and contributing factors; and appropriately educate, and communicate findings and diagnosis to ensure ongoing management, care and support.
The Alzheimer’s Association encourages earlier and accurate diagnosis of ADRD, which will not only increase patient independence, but also provide the opportunity for patients to participate in treatment, life and care decisions, legal and financial planning, and may increase their chances of participating in research studies.
“Our primary care physicians in this country really don’t have the tools or knowledge that they need to accurately diagnose Alzheimer or dementia,” Hendrix added. “That’s where the clinical practice guidelines, we hope will be very impactful, to help improve the quality of the diagnostic process, so that patients will get an early and accurate diagnosis, and their families will also be able to be engaged in that, and they’ll have discussions on future planning, make plans for their future care, and really get better overall health care for those people affected by this disease.”
Next, the workgroup will reach out to physician groups and medical societies to encourage clinicians to adopt these best clinical practice guidelines. The guidelines, previewed at AAIC, continued to be developed with input from key opinion leaders in the field and aimed to be published in full late 2018.