BACKGROUND
Anyone following progress in Alzheimer’s disease (AD) via the popular press, the scientific literature, or my website (https://ouragingbrains.com/category/in-the-news/) will know that 2024 was a remarkably productive year for AD researchers and their sponsoring organizations. The most recent addition to the expanding literature on AD and related dementias was the December 23, 2024 Christmas gift from the Alzheimer’s Association to primary care physicians and their patients: A special edition of their journal, Alzheimer’s&Dementia offering the first-ever clinical practice guidelines for “Diagnostic Evaluation, Testing, Counseling, and Disclosure of Suspected Alzheimer’s Disease and Related Disorders”1
The Need for Primary Care Guidelines for Patients with Suspected AD is Clear
“Alzheimer’s disease and related dementias (ADRD) remain underdiagnosed in primary care settings.” Less than 20% of older adults receive regular cognitive assessments during health check-ups. Only 39% of primary care providers report “never or only sometimes being comfortable making a dementia diagnosis, and many say they lack the tools to care for patients with cognitive problems and rely on specialists (despite challenges of accessing specialists in many settings).” Additionally, existing “US clinical practice guidelines for the diagnostic evaluation of cognitive impairment due to AD or ADRD are decades old and aimed at specialists.” 2
The Hope: CPGs
Clinical Practice Guidelines (CPGs) are specialty or multispecialty-developed consensus summaries of best practices for disease investigation, diagnosis, treatment and referral created for a broader audience of practitioners. In this instance, after reviewing more than 7000 articles a multidisciplinary group of ten experts offered their “attempt to provide rigorous, evidence- and practice-informed foundational steps that capture the core elements of a high-quality evaluation and disclosure process formulated into practical recommendations that are applicable to any practice setting, including primary care.”3
Clinical Practice Guidelines have been remarkably beneficial across the breadth of medical practice. Throughout my 40 years in emergency medicine, my patients have consistently benefitted from the availability of CPGs from every specialty. A search of my current computer’s hard drive found more than 600 files with “CPG” in their name. The earliest was a 2009 American Pain Society CPG for low back pain. Some were duplicates, meaning that I had referred to them multiple times over decades.
THE REMAINING CHALLENGE: GUIDLINE DISSEMINATION, ADOPTION, AND IMPLEMENTATION
I have nothing fundamental to add to the substance of such an important work in a field outside my own. However, having read, used, and saved hundreds of such documents, I do feel obligated to point out what I see as the primary weakness of this particular authoritative and very important set of articles.
Or, in the idiom of academic medicine:
A FAILURE OF KNOWLEDGE TRANSLATION
It is remarkable to have generated and published a consensus view of such a rapidly expanding essential body of knowledge. Knowledge Translation (KT) is all about ensuring that such important consolidations and the guidelines they generate actually “translate” into improving healthcare. Patients benefit when CPGs get into the hands, minds, and practice patterns of their doctors. (See the National Center for Advancing Translational Science (NCATS) at https://ncats.nih.gov.) Medicare patients represent 76% of primary care visits. As the authors note, providing guidelines for practitioners in such settings was long overdue.4
The Alzheimer’s Association’s hard work of distilling and publishing this latest information is complete. Realizing maximal patient and provider benefit from all that work depends on effective knowledge translation—ensuring clarity, accessibility, and usability for its intended audience of Primary Care Physicians.
BARRIERS TO KNOWLEDGE TRANSLATION
The realities of primary care practice:
Time: According to the American Academy of Family Physicians primary care doctors typically see approximately 20 to 25 patients per day, with the average length of a primary care visit of about 18-20 minutes.
Visibility and accessibility of the information: Keeping up with the breadth of knowledge required to practice primary care medicine is a daunting task. Even the most motivated family physicians probably don’t subscribe to Alzheimer’s&Dementia. If a copy fell off a shelf into their lap, one wonders if the appeal of the latest from the “DETeCD-ADRD Working Group”, could even successfully compete for attention with accompanying drug company ads.
The Guidelines are far from reader-friendly
Length & complexity: Too much to read in too-small fonts. As I have tried to do in previous “Breaking News” posts (https://ouragingbrains.com/category/in-the-news/) and in my book Aging or Alzheimer’s?, my original purpose in starting this post on the newest AD CPG was to summarize & clarify it. I have been blessed with the time, the inclination, and a great deal of both personal and professional interest in the topic. Even so, I failed at meaningfully condensing these guidelines. Even a quick read of the “Executive Summary” is daunting: 32 pages, 186 references, a 4-section outline that subdivides as finely as level 2.2.1, 4 one-page dense Figures with tiny print, 5 Tables, and 6 ”Boxes” reviewing recommendations, related psychiatric and medical disorders, health equity, and the latest treatments.2 The complete guidelines total 86 pages with 541 references.
Figure 2 is an example:
FROM: Atri, A. et al. (2024) Alzheimer’s Association clinical practice guideline for the Diagnostic Evaluation, Testing, Counseling, and Disclosure of Suspected Alzheimer’s Disease and Related Disorders (DETeCD-ADRD): Executive summary of recommendations for primary care. Alzheimers Dement. 2024 Dec 23. doi: 10.1002/alz.14333. Epub ahead of print. PMID: 39713942. (Figure 2) [An open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License]
If this seems concise to you, congratulations. But be aware that the 19 explanatory Recommendations (“Recs”) referred to in the figure and essential to the understanding and implementation of the guidelines fill the next 6 pages of the “summary” in the same tiny font as the boxes in the figure above.
The “Ivory Tower”:
I love science and honor scientific writing. For the last 57 years those have been a major focus of my professional life. I have no quarrel with the guidelines’ intent or content. They come from “the best of the best” and reference the tools primary physicians need for addressing memory and cognition. But will family physicians acquire and follow them? As someone facing cognitive decline and who has lived with it in my family, I will refer to these CPGs frequently. But ivory towers can have a “drawbridge that doesn’t quite reach the other side,”(ChatGPT) limiting what gets in or out. I have neither the credentials nor the inclination to question the science presented. However, in the absence of a plan for knowledge translation, I think it might as just as well have been written it in Alzheimer’s native tongue.7
WHAT HAPPENS NEXT?
The Story will come out
As has most often been the case with medical news, the earliest and most readily accessible information comes from health journalists. Triggered commonly by press releases from conferences, pharmaceutical manufacturers, and academic centers, they will often interview presenters and authors. Reporter’s skills and broad dissemination attract readers to the topic. Many of the 535 references in my book were first pointed out to me by medical journalists. I first learned of these guidelines from Medscape Medical News. That piece was six well written pages that summarized the guidelines’ “19 practical recommendations” in 15 sentences. Compare the appeal of the title of that journalist’s work: “Updated Alzheimer’s Guidelines Chart the Full Diagnostic Journey”6, with the lure of “Introduction to the DETeCD-ADRD Special Issue.”3
BUT:
Reporting is not Knowledge Translation
I’m sure that reporters or their editors would be the first to say that their publications are not a substitute for the primary source material, nor can they tell or evaluate the whole story. The Medscape article prompted my continued reading and hopefully triggered some family doctors to do so as well.
News magazines and websites rely on advertising for income. Conflict of interest is always possible. Unlike with medical journals, disclosure of conflicts is not a requirement.
Editorial review is not the same as scientific peer review.
Applying published information to individual patients is a medical procedure, with risks. Initial evaluations of patients with cognitive concerns occur in the context of rapidly evolving data and opinions, innumerable individual-patient and family variables, subtleties, and uncertainties. Shared decision-making should start at the first provider contact supported by optimum levels of understanding.
We should not abdicate knowledge-translation responsibilities. Maximal clarity is especially important for those providers whom our worried patients and their families first consult. I would urge the educators and scientists who created these guidelines to dip their toe in the knowledge-translation literature, or partner with those who have, to optimally disseminate and translate the fruits of their labor. Ensure that the goal of preaching beyond the choir of up-to-date specialists to the gallery of primary physicians is met. The excitement of a “Special Edition” of Alzheimer’s&Dementia notwithstanding, as “Breaking News“ goes this is likely to flop. You would think that after this much work, all those authors would want to be sure they are being read. Specialist subscribers will already know or welcome this content. The intended audience seems unlikely to discover it on their own. If you all don’t make a realistic, accessible, readable, rational and academically-supported effort to get this complex material to your intended audience, little pieces of your work will end up in blogs, newsmagazines, email lists, and obscure websites. Someone else will be telling primary care providers what they think you think on these critical topics.
WHAT CAN PATIENTS DO?
I would prefer that you follow my website (OurAgingBrains.com) and buy my book. However, the journal articles referenced below are free and do outline everything that primary physicians need to know about the topic and convey to their patients.
It might be a good screening test to ask your PCP, before the appointment, if they have read, heard of, or seen this information. Or you can download the Summary1 yourself and take a copy with you.
REFERENCES
General
“Alzheimer’s&Dementia” has transitioned to an open-access journal. This means its articles are freely available online.
“The final DETeCD-ADRDCPG Comprehensive Report was unanimously approved by workgroup members and is available online.” (https://www.alz.org/clinicalguidelines).
General information on Clinical Practice Guidelines can be found at The National Center for Complementary and Integrative Health (NCCIH). [https://www.nccih.nih.gov/health/providers/clinicalpractice]
Information on Knowledge Translation is at The National Center for Advancing Translational Science (NCATS) at https://ncats.nih.gov
Cited
- Atri A, Dickerson BC, Clevenger C, Karlawish J, Knopman D, Lin PJ, Norman M, Onyike C, Sano M, Scanland S, Carrillo M. Alzheimer’s Association clinical practice guideline for the Diagnostic Evaluation, Testing, Counseling, and Disclosure of Suspected Alzheimer’s Disease and Related Disorders (DETeCD-ADRD): Executive summary of recommendations for primary care. Alzheimers Dement. 2024 Dec 23. doi: 10.1002/alz.14333. Epub ahead of print. PMID: 39713942. [https://alz-journals.onlinelibrary.wiley.com/doi/epdf/10.1002/alz.14333]
- Cox CG, Brush BL, Kobayashi LC, Roberts JS. Determinants of dementia diagnosis in U.S. primary care in the past decade: A scoping review. J Prev Alzheimers Dis. 2025 Feb;12(2):100035. doi: 10.1016/j.tjpad.2024.100035. Epub 2025 Jan 1. PMID: 39863322. [https://tinyurl.com/4wjr94y4]
- Dickerson BC, Atri A. Introduction to the DETeCD-ADRD special issue. Alzheimers Dement. 2025 Feb;21(2):e14483. doi: 10.1002/alz.14483. Epub 2024 Dec 28. PMID: 39732506; PMCID: PMC11848391. [https://pmc.ncbi.nlm.nih.gov/articles/PMC11848391/]
- Ashman JJ, Santo L, Okeyode T. Characteristics of office-based physician visits by age, 2019. National Health Statistics Reports; no 184. Hyattsville, MD: National Center for Health Statistics. 2023. DOI: https:// dx.doi.org/10.15620/cdc: 125462. [https://stacks.cdc.gov/view/cdc/125462]
- Frumkin, K. Aging or Alzheimer’s? New York: Skyhorse Publishing, 2024. ISBN – 978-1510780149 [AgingOrAlzheimers.com]
- Brooks M, Updated Alzheimer’s Guidelines Chart the Full Diagnostic Journey. Medscape Medical News, January 15, 2025. https://www.medscape.com/viewarticle/updated-alzheimers-guidelines-chart-full-diagnostic-journey-2025a10000y1
- “Don’t do what I say, do what I mean.”
Other:
Atri A, Dickerson BC, Clevenger C, Karlawish J, Knopman D, Lin PJ, Norman M, Onyike C, Sano M, Scanland S, Carrillo M. 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): Validated clinical assessment instruments. Alzheimers Dement. 2025 Jan;21(1):e14335. doi: 10.1002/alz.14335. Epub 2024 Dec 23. PMID: 39713939; PMCID: PMC11772712. [https://pmc.ncbi.nlm.nih.gov/articles/PMC11772712/]
O’Brien K, Largent EA, Karlawish J. Applying recommendations for diagnostic disclosure of mild cognitive impairment and dementia: Practical guidance for clinicians. Alzheimers Dement. 2025 Jan;21(1):e14200. doi: 10.1002/alz.14200. Epub 2024 Dec 30. PMID: 39740343; PMCID: PMC11772705. [https://pmc.ncbi.nlm.nih.gov/articles/PMC11772705/]
Grimshaw JM, Eccles MP, Lavis JN, Hill SJ, Squires JE. Knowledge translation of research findings. Implement Sci. 2012 May 31;7:50. doi: 10.1186/1748-5908-7-50. PMID: 22651257; PMCID: PMC3462671. [https://pmc.ncbi.nlm.nih.gov/articles/PMC3462671/]
Shaughnessy LW, Weintraub S. The role of neuropsychological assessment in the evaluation of patients with cognitive-behavioral change due to suspected Alzheimer’s disease and other causes of cognitive impairment and dementia. Alzheimers Dement. 2025 Jan;21(1):e14363. doi: 10.1002/alz.14363. Epub 2024 Dec 28. PMID: 39732508; PMCID: PMC11782836. [https://pmc.ncbi.nlm.nih.gov/articles/PMC11782836/]
Straus SE, Tetroe J, Graham I. Defining knowledge translation. CMAJ. 2009 Aug 4;181(3-4):165-8. doi: 10.1503/cmaj.081229. Epub 2009 Jul 20. PMID: 19620273; PMCID: PMC2717660. [https://pmc.ncbi.nlm.nih.gov/articles/PMC2717660/]