case study research in linguistics

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Case Study Research in Applied Linguistics

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Case studies of individual language learners are a valuable means of illustrating issues connected with learning, using, and in some cases, losing another language. Yet, even though increasing numbers of graduate students and scholars conduct research using case studies or mix quantitative and qualitative methods, there are no dedicated applied linguistics research methods texts that guide one through the case study process. This book fills that gap. The volume provides an overview of case study methodology and examples of published case studies in applied linguistics, without attempting to be a comprehensive survey of the innumerable case studies that exist. The case studies presented here involve teachers and learners of English and various other languages in North America and other parts of the world. Advice is also given about how to conduct and publish case studies. Case Study Research in Applied Linguistics is designed for students, both undergraduate and graduate, as well as other scholars seeking to understand case study methods and their applications in research on language learners and language users in a variety of contexts. Applied linguists working in other subfields will find the volume useful in their own research and in their supervision and evaluation of others' case studies.

Table of Contents

Patricia Duff, Patricia Duff

Critics' Reviews

"This book makes for truly engaging and interesting reading! It is packed with useful analyses, examples, and discussions of the methodologies and epistemologies surrounding case study research. The wealth of diverse illustrations from the SLA literature also makes it a very important resource for graduate students. I hope many applied linguistics programs take advantage of this excellent textbook and begin offering courses on case study methodology!"  - Lourdes Ortega, University of Hawai'i "The book can serve as an effective resource for qualitative research professors in their preparation of course modules as well as for graduate students and more experienced researchers in the field of applied linguistics...Duff has been able to both offer a balance of conceptual and practical guidance and skillfully engage with different levels of inquiry (epistemology, ontology and methodology) throughout the book."  - Marzieh Tafaghodtari, University of Ottawa   "...this volume is a welcome addition to the AL research community, and both beginning and seasoned AL researchers will find it useful." - Modern Language Journal, 2009  "...this thoroughly researched and excellently written volume has the potential to advance the field of Applied Linguistics." - Johannes Eckerth, 2008   "Case studies are a widely-used research method in applied linguistics today, notably in the context of second language learning, teaching and use. For anyone not acquainted with this qualitative approach, Duff’s book serves as an excellent introduction to its distinctive attributes, the associated theoretical issues and to the practicalities of conducting, evaluating and presenting case study research." - Australian Review of Applied Linguistics, 2008

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Case Study Research in Applied Linguistics

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Case Study Research in Applied Linguistics offers a detailed foray into all aspects of the role of the case study: the text defines terms related to this type of research, provides historical background on the method, and explains the process of performing and reporting case studies. Such a comprehensive introduction addresses a gap in the literature. Many research methods texts provide overviews of different kinds of quantitative and qualitative research often utilized in the field of applied linguistics, including correlational research, introspective research, and in-class observations (e.g., Brown & Rogers, 2002; Dörnyei, 2007). Few, however, focus exclusively on case study research, lacking examination of the often painstaking process case studies entail. While the book’s scope is broad, Duff’s purposes are clear and concise from the outset: 1) to delineate the methodological foundations of case study research, 2) to present and examine seminal case studies in the area of second language (L2) development and teaching, and 3) to demystify the process of case study research from conception to publication. As these goals suggest, the book intends to offer the necessary information and sound advice to budding researchers in applied linguistics on both the graduate and undergraduate level.

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Case Study Research in Applied Linguistics (Second Language Acquisition Research Series) 1st Edition

Case studies of individual language learners are a valuable means of illustrating issues connected with learning, using, and in some cases, losing another language. Yet, even though increasing numbers of graduate students and scholars conduct research using case studies or mix quantitative and qualitative methods, there are no dedicated applied linguistics research methods texts that guide one through the case study process. This book fills that gap.

The volume provides an overview of case study methodology and examples of published case studies in applied linguistics, without attempting to be a comprehensive survey of the innumerable case studies that exist. The case studies presented here involve teachers and learners of English and various other languages in North America and other parts of the world. Advice is also given about how to conduct and publish case studies.

Case Study Research in Applied Linguistics is designed for students, both undergraduate and graduate, as well as other scholars seeking to understand case study methods and their applications in research on language learners and language users in a variety of contexts. Applied linguists working in other subfields will find the volume useful in their own research and in their supervision and evaluation of others' case studies.

• ISBN-10 080582359X
• ISBN-13 978-0805823592
• Edition 1st
• Publication date October 3, 2007
• Part of series Second Language Acquisition Research
• Language English
• Dimensions 5.98 x 0.55 x 9.02 inches
• Print length 244 pages
• See all details

Editorial Reviews

"This book makes for truly engaging and interesting reading! It is packed with useful analyses, examples, and discussions of the methodologies and epistemologies surrounding case study research. The wealth of diverse illustrations from the SLA literature also makes it a very important resource for graduate students. I hope many applied linguistics programs take advantage of this excellent textbook and begin offering courses on case study methodology!" - Lourdes Ortega, University of Hawai'i

"The book can serve as an effective resource for qualitative research professors in their preparation of course modules as well as for graduate students and more experienced researchers in the field of applied linguistics...Duff has been able to both offer a balance of conceptual and practical guidance and skillfully engage with different levels of inquiry (epistemology, ontology and methodology) throughout the book." - Marzieh Tafaghodtari, University of Ottawa

"...this volume is a welcome addition to the AL research community, and both beginning and seasoned AL researchers will find it useful."

- Modern Language Journal, 2009

"...this thoroughly researched and excellently written volume has the potential to advance the field of Applied Linguistics."

- Johannes Eckerth, 2008

"Case studies are a widely-used research method in applied linguistics today, notably in the context of second language learning, teaching and use. For anyone not acquainted with this qualitative approach, Duff’s book serves as an excellent introduction to its distinctive attributes, the associated theoretical issues and to the practicalities of conducting, evaluating and presenting case study research."

- Australian Review of Applied Linguistics, 2008

About the Author

Product details.

• Publisher ‏ : ‎ Routledge; 1st edition (October 3, 2007)
• Language ‏ : ‎ English
• Paperback ‏ : ‎ 244 pages
• ISBN-10 ‏ : ‎ 080582359X
• ISBN-13 ‏ : ‎ 978-0805823592
• Item Weight ‏ : ‎ 12 ounces
• Dimensions ‏ : ‎ 5.98 x 0.55 x 9.02 inches
• #971 in Linguistics (Books)
• #3,978 in Linguistics Reference
• #9,658 in Professional

About the author

Patricia duff.

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Case Study Research in Applied Linguistics - 2008 - Chapter 1

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Participatory Linguistics: Methods and Case Studies from Around the World

This volume summarizes decades of progress in participatory linguistics in the work of scholars affiliated with SIL International and other institutions. It includes three framing overviews which discuss the key role of community participation in language documentation and development of materials for languages. The rest of the volume outlines various new tools for phonological analysis and orthography design, sociolinguistic surveys, morphosyntax, lexicography and discourse analysis. Numerous case studies from around the world illustrate the implementation of these tools.

The case studies are particularly extensive for languages of Africa, represented in nearly half of the chapters; this area is often under-represented in other overview volumes, which tend to focus on other areas. Various languages of Oceania, Asia and the Americas are also included.

The crucial importance of community participation is often neglected in academic linguistic studies; this volume provides an excellent and valuable counterexample. The community and its priorities and needs should be central in the design and implementation of linguistic research; here, we have practical tools for achieving this goal.

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Michael Cahill

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14: Participatory orthography development in Abawiri

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Part 4: Morphosyntax

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16: Report on the Rapid Grammar Collection workshop in Konabéré (Bobo Madare North)

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17: The value of games and activities in participatory workshops

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• DOI: 10.59825/jhss.2024.2.2.83
• Corpus ID: 269941329

Research on the Inheritance and Innovation Path of Minority Culture from the Perspective of Rural Revitalization: A Case Study of Nanhua Yi Embroidery Culture

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Qualitative Methodology

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This chapter provides an overview of qualitative research (QR) in applied linguistics, with a particular focus on recent research and developments in the field over the past six years. The chapter briefly reviews the historical development of qualitative methods in applied linguistics. It explores the philosophical and methodological premises of qualitative methods in the field and relates them to broader developments in QR across the social sciences, particularly in regard to issues of validity and quality of QR. The chapter then reviews current trends and issues and provides an overview of research types including the varieties of qualitative approaches taken, theoretical frameworks used, and types of data collection and analytical methods employed. It points out challenges and controversies and concludes with limitations and future directions in QR in applied linguistics.

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Lew, S., Yang, A.H., Harklau, L. (2018). Qualitative Methodology. In: Phakiti, A., De Costa, P., Plonsky, L., Starfield, S. (eds) The Palgrave Handbook of Applied Linguistics Research Methodology. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-137-59900-1_4

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The University of Chicago The Law School

Abrams environmental law clinic—significant achievements for 2023-24, protecting our great lakes, rivers, and shorelines.

The Abrams Clinic represents Friends of the Chicago River and the Sierra Club in their efforts to hold Trump Tower in downtown Chicago accountable for withdrawing water illegally from the Chicago River. To cool the building, Trump Tower draws water at high volumes, similar to industrial factories or power plants, but Trump Tower operated for more than a decade without ever conducting the legally required studies to determine the impact of those operations on aquatic life or without installing sufficient equipment to protect aquatic life consistent with federal regulations. After the Clinic sent a notice of intent to sue Trump Tower, the State of Illinois filed its own case in the summer of 2018, and the Clinic moved successfully to intervene in that case. In 2023-24, motions practice and discovery continued. Working with co-counsel at Northwestern University’s Pritzker Law School’s Environmental Advocacy Center, the Clinic moved to amend its complaint to include Trump Tower’s systematic underreporting each month of the volume of water that it intakes from and discharges to the Chicago River. The Clinic and co-counsel addressed Trump Tower’s motion to dismiss some of our clients’ claims, and we filed a motion for summary judgment on our claim that Trump Tower has committed a public nuisance. We also worked closely with our expert, Dr. Peter Henderson, on a supplemental disclosure and on defending an additional deposition of him. In summer 2024, the Clinic is defending its motion for summary judgment and challenging Trump Tower’s own motion for summary judgment. The Clinic is also preparing for trial, which could take place as early as fall 2024.

Since 2016, the Abrams Clinic has worked with the Chicago chapter of the Surfrider Foundation to protect water quality along the Lake Michigan shoreline in northwest Indiana, where its members surf. In April 2017, the U. S. Steel plant in Portage, Indiana, spilled approximately 300 pounds of hexavalent chromium into Lake Michigan. In January 2018, the Abrams Clinic filed a suit on behalf of Surfrider against U. S. Steel, alleging multiple violations of U. S. Steel’s discharge permits; the City of Chicago filed suit shortly after. When the US government and the State of Indiana filed their own, separate case, the Clinic filed extensive comments on the proposed consent decree. In August 2021, the court entered a revised consent decree which included provisions advocated for by Surfrider and the City of Chicago, namely a water sampling project that alerts beachgoers as to Lake Michigan’s water quality conditions, better notifications in case of future spills, and improvements to U. S. Steel’s operations and maintenance plans. In the 2023-24 academic year, the Clinic successfully litigated its claims for attorneys’ fees as a substantially prevailing party. Significantly, the court’s order adopted the “Fitzpatrick matrix,” used by the US Attorney’s Office for the District of Columbia to determine appropriate hourly rates for civil litigants, endorsed Chicago legal market rates as the appropriate rates for complex environmental litigation in Northwest Indiana, and allowed for partially reconstructed time records. The Clinic’s work, which has received significant media attention, helped to spawn other litigation to address pollution by other industrial facilities in Northwest Indiana and other enforcement against U. S. Steel by the State of Indiana.

In Winter Quarter 2024, Clinic students worked closely with Dr. John Ikerd, an agricultural economist and emeritus professor at the University of Missouri, to file an amicus brief in Food & Water Watch v. U.S. Environmental Protection Agency . In that case pending before the Ninth Circuit, Food & Water Watch argues that US EPA is illegally allowing Concentrated Animal Feeding Operations, more commonly known as factory farms, to pollute waterways significantly more than is allowable under the Clean Water Act. In the brief for Dr. Ikerd and co-amici Austin Frerick, Crawford Stewardship Project, Family Farm Defenders, Farm Aid, Missouri Rural Crisis Center, National Family Farm Coalition, National Sustainable Agriculture Coalition, and Western Organization of Resource Councils, we argued that EPA’s refusal to regulate CAFOs effectively is an unwarranted application of “agricultural exceptionalism” to industrial agriculture and that EPA effectively distorts the animal production market by allowing CAFOs to externalize their pollution costs and diminishing the ability of family farms to compete. Attorneys for the litigants will argue the case in September 2024.

Energy and Climate

Energy justice.

The Abrams Clinic supported grassroots organizations advocating for energy justice in low-income communities and Black, Indigenous, and People of Color (BIPOC) communities in Michigan. With the Clinic’s representation, these organizations intervened in cases before the Michigan Public Service Commission (MPSC), which regulates investor-owned utilities. Students conducted discovery, drafted written testimony, cross-examined utility executives, participated in settlement discussions, and filed briefs for these projects. The Clinic’s representation has elevated the concerns of these community organizations and forced both the utilities and regulators to consider issues of equity to an unprecedented degree. This year, on behalf of Soulardarity (Highland Park, MI), We Want Green, Too (Detroit, MI), and Urban Core Collective (Grand Rapids, MI), Clinic students engaged in eight contested cases before the MPSC against DTE Electric, DTE Gas, and Consumers Energy, as well as provided support for our clients’ advocacy in other non-contested MPSC proceedings.

The Clinic started this past fall with wins in three cases. First, the Clinic’s clients settled with DTE Electric in its Integrated Resource Plan case. The settlement included an agreement to close the second dirtiest coal power plant in Michigan three years early, $30 million from DTE’s shareholders to assist low-income customers in paying their bills, and $8 million from DTE’s shareholders toward a community fund that assists low-income customers with installing energy efficiency improvements, renewable energy, and battery technology. Second, in DTE Electric’s 2023 request for a rate hike (a “rate case”), the Commission required DTE Electric to develop a more robust environmental justice analysis and rejected the Company’s second attempt to waive consumer protections through a proposed electric utility prepayment program with a questionable history of success during its pilot run. The final Commission order and the administrative law judge’s proposal for final decision cited the Clinic’s testimony and briefs. Third, in Consumers Electric’s 2023 rate case, the Commission rejected the Company’s request for a higher ratepayer-funded return on its investments and required the Company to create a process that will enable intervenors to obtain accurate GIS data. The Clinic intends to use this data to map the disparate impact of infrastructure investment in low-income and BIPOC communities.

In the winter, the Clinic filed public comments regarding DTE Electric and Consumers Energy’s “distribution grid plans” (DGP) as well as supported interventions in two additional cases: Consumers Energy’s voluntary green pricing (VGP) case and the Clinic’s first case against the gas utility DTE Gas. Beginning with the DGP comments, the Clinic first addressed Consumers’s 2023 Electric Distribution Infrastructure Investment Plan (EDIIP), which detailed current distribution system health and the utility’s approximately $7 billion capital project planning ($2 billion of which went unaccounted for in the EDIIP) over 2023–2028. The Clinic then commented on DTE Electric’s 2023 DGP, which outlined the utility’s opaque project prioritization and planned more than $9 billion in capital investments and associated maintenance over 2024–2028. The comments targeted four areas of deficiencies in both the EDIIP and DGP: (1) inadequate consideration of distributed energy resources (DERs) as providing grid reliability, resiliency, and energy transition benefits; (2) flawed environmental justice analysis, particularly with respect to the collection of performance metrics and the narrow implementation of the Michigan Environmental Justice Screen Tool; (3) inequitable investment patterns across census tracts, with emphasis on DTE Electric’s skewed prioritization for retaining its old circuits rather than upgrading those circuits; and (4) failing to engage with community feedback.

For the VGP case against Consumers, the Clinic supported the filing of both an initial brief and reply brief requesting that the Commission reject the Company’s flawed proposal for a “community solar” program. In a prior case, the Clinic advocated for the development of a community solar program that would provide low-income, BIPOC communities with access to clean energy. As a result of our efforts, the Commission approved a settlement agreement requiring the Company “to evaluate and provide a strawman recommendation on community solar in its Voluntary Green Pricing Program.” However, the Company’s subsequent proposal in its VGP case violated the Commission’s order because it (1) was not consistent with the applicable law, MCL 460.1061; (2) was not a true community solar program; (3) lacked essential details; (4) failed to compensate subscribers sufficiently; (5) included overpriced and inflexible subscriptions; (6) excessively limited capacity; and (7) failed to provide a clear pathway for certain participants to transition into other VGP programs. For these reasons, the Clinic argued that the Commission should reject the Company’s proposal.

In DTE Gas’s current rate case, the Clinic worked with four witnesses to develop testimony that would rebut DTE Gas’s request for a rate hike on its customers. The testimony advocated for a pathway to a just energy transition that avoids dumping the costs of stranded gas assets on the low-income and BIPOC communities that are likely to be the last to electrify. Instead, the testimony proposed that the gas and electric utilities undertake integrated planning that would prioritize electric infrastructure over gas infrastructure investment to ensure that DTE Gas does not over-invest in gas infrastructure that will be rendered obsolete in the coming decades. The Clinic also worked with one expert witness to develop an analysis of DTE Gas’s unaffordable bills and inequitable shutoff, deposit, and collections practices. Lastly, the Clinic offered testimony on behalf of and from community members who would be directly impacted by the Company’s rate hike and lack of affordable and quality service. Clinic students have spent the summer drafting an approximately one-hundred-page brief making these arguments formally. We expect the Commission’s decision this fall.

Finally, both DTE Electric and Consumers Energy have filed additional requests for rate increases after the conclusion of their respective rate cases filed in 2023. On behalf of our Clients, the Clinic has intervened in these cases, and clinic students have already reviewed thousands of pages of documents and started to develop arguments and strategies to protect low-income and BIPOC communities from the utility’s ceaseless efforts to increase the cost of energy.

Corporate Climate Greenwashing

The Abrams Environmental Law Clinic worked with a leading international nonprofit dedicated to using the law to protect the environment to research corporate climate greenwashing, focusing on consumer protection, green financing, and securities liability. Clinic students spent the year examining an innovative state law, drafted a fifty-page guide to the statute and relevant cases, and examined how the law would apply to a variety of potential cases. Students then presented their findings in a case study and oral presentation to members of ClientEarth, including the organization’s North American head and members of its European team. The project helped identify the strengths and weaknesses of potential new strategies for increasing corporate accountability in the fight against climate change.

Land Contamination, Lead, and Hazardous Waste

The Abrams Clinic continues to represent East Chicago, Indiana, residents who live or lived on or adjacent to the USS Lead Superfund site. This year, the Clinic worked closely with the East Chicago/Calumet Coalition Community Advisory Group (CAG) to advance the CAG’s advocacy beyond the Superfund site and the adjacent Dupont RCRA site. Through multiple forms of advocacy, the clinics challenged the poor performance and permit modification and renewal attempts of Tradebe Treatment and Recycling, LLC (Tradebe), a hazardous waste storage and recycling facility in the community. Clinic students sent letters to US EPA and Indiana Department of Environmental Management officials about how IDEM has failed to assess meaningful penalties against Tradebe for repeated violations of the law and how IDEM has allowed Tradebe to continue to threaten public and worker health and safety by not improving its operations. Students also drafted substantial comments for the CAG on the US EPA’s Lead and Copper Rule improvements, the Suppliers’ Park proposed cleanup, and Sims Metal’s proposed air permit revisions. The Clinic has also continued working with the CAG, environmental experts, and regulators since US EPA awarded $200,000 to the CAG for community air monitoring. The Clinic and its clients also joined comments drafted by other environmental organizations about poor operations and loose regulatory oversight of several industrial facilities in the area.

Endangered Species

The Abrams Clinic represented the Center for Biological Diversity (CBD) and the Hoosier Environmental Council (HEC) in litigation regarding the US Fish and Wildlife Service’s (Service) failure to list the Kirtland’s snake as threatened or endangered under the Endangered Species Act. The Kirtland’s snake is a small, secretive, non-venomous snake historically located across the Midwest and the Ohio River Valley. Development and climate change have undermined large portions of the snake’s habitat, and populations are declining. Accordingly, the Clinic sued the Service in the US District Court for the District of Columbia last summer over the Service’s denial of CBD’s request to have the Kirtland’s snake protected. This spring, the Clinic was able to reach a settlement with the Service that requires the Service to reconsider its listing decision for the Kirtland’s snake and to pay attorney fees.

The Clinic also represented CBD in preparation for litigation regarding the Service’s failure to list another species as threatened or endangered. Threats from land development and climate change have devastated this species as well, and the species has already been extirpated from two of the sixteen US states in its range. As such, the Clinic worked this winter and spring to prepare a notice of intent (NOI) to sue the Service. The Team poured over hundreds of FOIA documents and dug into the Service’s supporting documentation to create strong arguments against the Service in the imminent litigation. The Clinic will send the NOI and file a complaint in the next few months.

Students and Faculty

Twenty-four law school students from the classes of 2024 and 2025 participated in the Clinic, performing complex legal research, reviewing documents obtained through discovery, drafting legal research memos and briefs, conferring with clients, conducting cross-examination, participating in settlement conferences, and arguing motions. Students secured nine clerkships, five were heading to private practice after graduation, and two are pursuing public interest work. Sam Heppell joined the Clinic from civil rights private practice, bringing the Clinic to its full complement of three attorneys.

• Introduction
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Distributions for sex (A), decedents (B), race and ethnicity (C), and dual-eligibility (D). Beneficiary race and ethnicity was determined using the Research Triangle Institute race code; Other and unknown race and ethnicity category includes Asian and Pacific Islander, American Indian or Alaska Native, and any race or ethnicity not otherwise specified. ASR indicates age-standardized rate.

eAppendix. Literature Review Protocol

eTable 1.  ICD-10-CM Codes and Prescription Drugs Used in the CCW and 21 Unique Researcher-Developed Claims-Based Dementia Identification Algorithms

eTable 2. Characteristics of Beneficiaries Categorized Into Each Tier of ICD-10-CM Codes (as Defined by Frequency of Use Across the CCW and Researcher-Developed Algorithms) and NDCs

eTable 3 . Raw and Age-Adjusted Characteristics of Beneficiaries Identified as Having Highly Likely ADRD, Likely ADRD, Possible ADRD, and No Evidence of ADRD

eTable 4. Beneficiary Age Distribution in the Full Sample, Within LTC Users and Non-Users, and Within Decedents and Non-Decedents

eTable 5. New Subcodes Associated With F01, F02, and F03 That Went Into Effect in October 2022

eReferences

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Gianattasio KZ , Wachsmuth J , Murphy R, et al. Case Definition for Diagnosed Alzheimer Disease and Related Dementias in Medicare. JAMA Netw Open. 2024;7(9):e2427610. doi:10.1001/jamanetworkopen.2024.27610

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Case Definition for Diagnosed Alzheimer Disease and Related Dementias in Medicare

• 1 NORC at the University of Chicago, Bethesda, Maryland
• 2 Department of Epidemiology, George Washington University School of Public Health, Washington, DC

Question   How many Medicare beneficiaries have diagnostic codes or drug prescriptions indicating Alzheimer disease and related dementias (ADRD) using a refined case definition, and what are the characteristics of these beneficiaries?

Findings   This cross-sectional study of more than 60 million Medicare beneficiaries identified 7.2% with evidence of highly likely ADRD, 1.9% with likely ADRD, and 4.3% with possible ADRD. Beneficiaries with evidence of ADRD were older, more frail, more likely to use long-term care, and more likely to die than those without evidence of ADRD; these differences persisted after age-standardization.

Meaning   In this cross-sectional study, more than 5.4 million Medicare beneficiaries (9.1%) had evidence of likely or highly likely ADRD in 2019; pending validation, this case definition can be adopted provisionally for national surveillance of persons with diagnosed dementia in the Medicare system.

Importance   Lack of a US dementia surveillance system hinders efforts to support and address disparities among persons living with Alzheimer disease and related dementias (ADRD).

Objective   To review diagnosis and prescription drug code ADRD identification algorithms to develop and implement case definitions for national surveillance.

Design, Setting, and Participants   In this cross-sectional study, a systematic literature review was conducted to identify unique International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) and prescription drug codes used by researchers to identify ADRD in administrative records. Code frequency of use, characteristics of beneficiaries identified by codes, and expert and author consensus around code definitions informed code placement into categories indicating highly likely, likely, and possible ADRD. These definitions were applied cross-sectionally to 2017 to 2019 Medicare fee-for-service (FFS) claims and Medicare Advantage (MA) encounter data to classify January 2019 Medicare enrollees. Data analysis was conducted from September 2022 to March 2024.

Exposures   ICD-10-CM and national drug codes in FFS claims or MA encounters.

Main Outcomes and Measures   The primary outcome was counts and rates of beneficiaries meeting each case definition. Category-specific age, sex, race and ethnicity, MA enrollment, dual-eligibility, long-term care utilization, mortality, and rural residence distributions, as well as frailty scores and FFS monthly expenditures were also analyzed. Beneficiary characteristics were compared across categories, and age-standardized to minimize confounding by age.

Results   Of the 60 000 869 beneficiaries included (50 853 806 aged 65 years or older [84.8%]; 32 567 891 female [54.3%]; 5 555 571 Hispanic [9.3%]; 6 318 194 non-Hispanic Black [10.5%]; 44 384 980 non-Hispanic White [74.0%]), there were 4 312 496 (7.2%) with highly likely ADRD, 1 124 080 (1.9%) with likely ADRD, and 2 572 176 (4.3%) with possible ADRD, totaling more than 8.0 million with diagnostic evidence of at least possible ADRD. These beneficiaries were older, more frail, more likely to be female, more likely to be dual-eligible, more likely to use long-term care, and more likely to die in 2019 compared with beneficiaries with no evidence of ADRD. These differences became larger when moving from the possible ADRD group to the highly likely ADRD group. Mean (SD) FFS monthly spending was $2966 ($4921) among beneficiaries with highly likely ADRD compared with $936 ($2952) for beneficiaries with no evidence of ADRD. Differences persisted after age standardization.

Conclusions and Relevance   This cross-sectional study of 2019 Medicare beneficiaries identified more than 5.4 million Medicare beneficiaries with evidence of at least likely ADRD in 2019 using the diagnostic case definition. Pending validation against clinical and other methods of ascertainment, this approach can be adopted provisionally for national surveillance.

Surveillance is a fundamental public health activity. Lack of a US dementia surveillance system hinders public health efforts to support persons living with Alzheimer disease and related dementias (ADRD), address health disparities, and plan ADRD care resources.

Medicare administrative data are an attractive source upon which to build a dementia surveillance system and are commonly used to identify persons living with ADRD, but a consensus diagnostic code case definition does not exist. Perhaps the most widely used definition (the Centers for Medicare and Medicaid Services [CMS] Chronic Conditions Warehouse [CCW] algorithm) uses 22 International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes, from the commonly accepted G30.X (Alzheimer disease) and F01.XX (vascular dementia), to less specific codes such as R54 (age-related physical debility). 1 In contrast, most researcher-developed ICD-10 - CM –based algorithms exclude R54, but may include codes such as G31.0 (frontotemporal dementia) that are not in the CCW algorithm. 2 - 4 Moreover, while some algorithms use Medicare Part D data to identify prescriptions for Alzheimer disease–related drugs, 5 - 8 most do not.

The impact of using different ICD-10-CM or prescription codes on the number of people identified or their characteristics is unknown. Because ICD-10-CM codes are used for billing (rather than diagnostic) purposes, specific codes may not be sensitive nor specific to dementia, and coding practices may differ systematically by health care practice, patient characteristics, and geography.

We examined how choices of ICD-10-CM and prescription drug codes used to identify persons with clinically recognized ADRD in Medicare fee-for-service (FFS) claims and Medicare Advantage (MA) encounter data affect dementia prevalence estimates and characteristics of the people identified. We synthesized this information to develop a new case definition using diagnostic and prescription drug codes that can be applied to administrative data to support surveillance of persons with diagnosed dementia in the Medicare system.

This cross-sectional study was deemed exempt from review and the requirement of informed consent by the NORC Institutional Review Board. The reporting of this research follows the Strengthening the Reporting of Observational Studies in Epidemiology ( STROBE ) reporting guideline.

We searched PubMed for articles published from 2012 to 2022, with all-cause dementia or ADRD as a primary exposure or primary outcome, or where the research population of interest was persons living with all-cause dementia or ADRD (eAppendix in Supplement 1 ). We found 28 studies utilizing 20 distinct researcher-developed ICD-10-CM or prescription drug code algorithms in addition to the CCW algorithm (eTable 1 in Supplement 1 ). 2 - 21

We extracted 43 ICD-10-CM codes and 5 prescription drugs across algorithms ( Table 1 and eTable 1 in Supplement 1 ). We shared the codes with 3 clinicians (2 neurology clinicians and 1 geriatrics clinician) who provide care to persons living with dementia, who recommended excluding 8 codes deemed to not indicate dementia ( Table 1 ). We grouped the remaining codes into tiers by use frequency (tier 1, ≥15 algorithms; tier 2, 10-14 algorithms; tier 3, 5-9 algorithms; and tier 4, 1-4 algorithms). We designated prescriptions for ADRD-targeting drugs as indicated by National Drug Codes (NDC) without presence of an ADRD ICD-10-CM code as tier 5.

We used 100% of the 2017 to 2019 Medicare FFS inpatient, outpatient, carrier, skilled nursing facility, home health agency, and hospice claims; MA inpatient, outpatient, carrier, skilled nursing facility, and home health agency encounter data; and Medicare Part D prescription drug event (PDE) data. We used the minimum dataset (MDS 3.0) to identify long-term care (LTC) utilization. We limited analysis to Medicare beneficiaries with at least Part A (the premium-free Medicare benefit) enrollment in January 2019, nonmissing sex, and a valid US state or territory code based on the Medicare beneficiary summary files. We did not exclude beneficiaries based on age or lack of Part B enrollment because our aim was to identify all people in the Medicare system with evidence of ADRD.

To categorize beneficiaries with or without evidence of dementia as of 2019, we conducted a cross-sectional analysis of January 2017 to December 2019 FFS and MA data to identify all claims and encounters with a relevant ICD-10-CM code listed in any position, and all PDE claims for a relevant NDC. We classified beneficiaries hierarchically, first with a tier 1 ICD-10-CM code, then with a tier 2 code among remaining beneficiaries, and so on, identifying only the incremental beneficiaries in each tier if they had not been classified earlier. We compared distributions of age, sex, race and ethnicity (as indicated by the Research Triangle Institute race code 22 ), MA enrollment, LTC use, and 2019 mortality across tiers. Race and ethnicity categories included American Indian or Alaska Native, Asian or Pacific Islander, Hispanic, non-Hispanic Black, non-Hispanic White, unknown, and other (defined as any race or ethnicity not otherwise specified); race and ethnicity were included because existing evidence shows that there are disparities in dementia prevalence across race and ethnicity groups. We compared cross-tier beneficiary frailty using a claims-based frailty index (CFI), 23 an adapted CFI that excludes ADRD codes in tiers 1 to 4, and per-member-per-month (PMPM) spending, averaged across all months of 2019 FFS coverage.

Using these data (eTable 2 in Supplement 1 ), we found that beneficiaries in tiers 1 and 2 were older, more frail, more likely to be female, in LTC, and die than those in tiers 3 to 5. There were minimal differences in race and ethnicity across tiers, with exception of a higher-than-expected representation of Hispanic and Asian and Pacific Islander beneficiaries in tier 5; however, the overall size of the sample categorized as tier 5 was very small, at just 0.1% (52 338 of 60 000 869 beneficiaries). Based on the findings from the cross-tier comparison and author consensus, we further aggregated codes into 3 categories with decreasing confidence of having a true ADRD diagnosis: a highly likely ADRD category requiring at least 2 claims or encounters on different dates with ICD-10-CM codes from tiers 1 or 2; a likely ADRD category requiring 1 claim or encounter with an ICD-10-10-CM code from tiers 1 or 2; and a possible ADRD category requiring at least 1 claim or encounter with an ICD-10-CM or NDC code from tiers 3, 4, or 5 over a 3-year lookback period. We categorized beneficiaries and reevaluated group demographics, health insurance type, frailty and mortality, and rural residency. We then computed prevalence of highly likely, likely, and possible ADRD within population subgroups defined by these characteristics. We age-standardized to the full analytical population to evaluate differences unconfounded by age.

All analyses were conducted in SAS Enterprise Guide 7.1 and SAS Studio version 3.81 (SAS Institute). Data analysis was conducted from September 2022 to March 2024.

Of 64 430 729 2019 Medicare beneficiaries, we excluded 3 940 831 due to lack of Part A enrollment in January, 8 due to missing sex, and 489 021 due to a nonvalid US state or territory code, resulting in a total of 60 000 869 beneficiaries (50 853 806 aged 65 years or older [84.8%]; 32 567 891 female [54.3%]; 5 555 571 Hispanic [9.3%]; 6 318 194 non-Hispanic Black [10.5%]; 44 384 980 non-Hispanic White [74.0%]) included in the study sample. Of all beneficiaries, 11 502 479 (19.2%) had Medicaid dual-eligibility, while 23 607 426 (39.3%) had MA. Mean (SD) FFS PMPM spending in 2019 was $1220 ($3426) ( Table 2 ).

We identified 4 312 496 beneficiaries (7.2%) as having highly likely ADRD, and 1 124 080 (1.9%) as having likely ADRD ( Table 3 ). The proportion of beneficiaries with highly likely ADRD increased to 8.1% (4 125 639 beneficiaries) after limiting age to 65 years or older, and to 8.8% (4 093 008 beneficiaries) when further limiting to those with both Parts A and B enrollment. The proportion of beneficiaries with likely ADRD increased to 2.1% (996 379 beneficiaries) after these restrictions. Compared with those with likely ADRD, those with highly likely ADRD were older and more frail, more likely to be female and dual-eligible, had over 3 times the rate of LTC utilization (681 923 of 4 312 496 beneficiaries [15.8%] vs 51 332 of 1 124 080 beneficiaries [4.6%]), and almost double the rate of death (828 366 of 4 312 496 beneficiaries [19.2%] vs 129 705 of 1 124 080 beneficiaries [11.5%]). We identified an additional 2 572 176 beneficiaries (4.3%) as having possible ADRD; this percentage increased to 4.8% (2 231 673 beneficiaries) after restricting to beneficiaries aged 65 years or older with Parts A and B enrollment. The possible ADRD group was younger and healthier (lower CFI, mortality, and LTC utilization) than those with highly likely or likely ADRD but was older and less healthy than those with no evidence of ADRD (51 992 117 beneficiaries). Mean (SD) PMPM spending was approximately 3 times as high in the ADRD groups (ranging from $2559 [$2952] among those with possible ADRD to $2966 [$4921] among those with highly likely ADRD) as that of the no ADRD group ($936 [$2952]). Age standardization narrowed differences in sex distribution and death rates, widened differences in race and ethnicity distribution and dual-eligible rates, and had minimal impact on differences in MA enrollment, LTC utilization, and frailty ( Figure and eTable 3 in Supplement 1 ). FFS spending increased slightly for all categories after age standardization.

The proportion of beneficiaries with any evidence of ADRD increased with age, from 6.5% (1 931 517 of 29 878 739 beneficiaries) among beneficiaries aged 65 to 74 years to 42.5% (2 544 205 of 5 983 967) among those aged 85 years or older, with the largest increase seen in the percentage of those with highly likely ADRD (2.6% [770 296 of 29 878 739 beneficiaries] to 29.1% [1 739 705 of 5 983 967 beneficiaries]) ( Table 4 ). Prevalence of any ADRD was higher in females than in males but was similar between non-Hispanic White (5 950 598 beneficiaries [13.4%]), non-Hispanic Black (892 541 beneficiaries [14.1%]), and Hispanic (792 948 beneficiaries [14.3%]) beneficiaries. Those with LTC use were substantially more likely to have ADRD than those with no LTC (681 923 of 937 248 beneficiaries [72.8%] vs 3 630 573 of 59 063 621 beneficiaries [6.1%] categorized as highly likely). Similarly, prevalence of highly likely or likely ADRD was much higher in decedents (958 071 of 2 285 257 beneficiaries [41.9%]) than nondecedents (4 478 505 of 57 715 612 beneficiaries [7.7%]) and in those who were dual-eligible (1 917 434 of 11 502 479 beneficiaries [16.7%]) than among those who were not (3 519 142 of 48 498 390 beneficiaries [7.2%]). MA beneficiaries had a higher prevalence of highly likely or likely ADRD (2 296 154 of 23 607 426 beneficiaries [9.7%]) than FFS beneficiaries (3 140 422 of 36 393 443 beneficiaries [8.6%]), and any evidence of ADRD (4 595 211 of 23 607 426 beneficiaries [14.5%] for MA vs 4 593 211 of 36 393 443 beneficiaries [12.6%] for FFS).

Age-standardizing subgroups to the age distribution of the Medicare population resulted in changes in ADRD prevalence estimates in some groups ( Table 4 ). Relative differences in ADRD prevalence narrowed across sex but widened across race and ethnicity groups. Most notably, non-Hispanic White beneficiaries became less likely to have any evidence of ADRD (12.9% across categories), while racial and ethnic minority groups became more likely to have evidence of ADRD (non-Hispanic Black beneficiaries, 16.5%; Hispanic beneficiaries, 15.3%). Among non-Hispanic Black beneficiaries, age standardization resulted in a substantial increase in the proportion of those with highly likely or likely ADRD (9.9% to 12.0%). Age standardization also reduced ADRD prevalence among LTC users (from 72.8% to 62.8% with highly likely ADRD) and decedents (from 36.2% to 23.8% with highly likely ADRD) but had minimal impact in ADRD prevalence among non–LTC users and nondecedents; this is because LTC-users and decedent groups were heavily skewed toward older ages, while the age distribution of the non–LTC users and nondecedent groups mimicked that of the general Medicare population (eTable 4 in Supplement 1 ).

Among 2019 Medicare beneficiaries in this cross-sectional study, we identified approximately 4.3 million (7.2%) with highly likely ADRD, 1.1 million (1.9%) with likely ADRD, and 2.6 million (4.3%) with possible ADRD, for a total of more than 8.0 million (13.4%) in any category. Specifically, we developed new diagnosis and NDC code ADRD case definitions informed by a systematic review of previous algorithms, author and expert input, and analyses of Medicare data. The review identified 43 ICD-10-CM codes and 5 prescription drugs used by the CCW and 20 researcher-developed algorithms to identify ADRD in Medicare data. We divided codes into categories that were likely to indicate ADRD vs those that were possibly ADRD based on past frequency of use by other researchers, characteristics of beneficiaries identified by codes, and author and expert consensus around code definitions. We then added a highly likely category to describe beneficiaries who received 2 or more likely codes on different dates of service. We posit that these categories are superior to previous definitions for provisional use in surveillance systems, but caution that validation is necessary. To our knowledge, this is the first application of claims identification algorithms to all-age FFS and MA beneficiaries. We have used this case definition to compute provisional national-, state-, and county-level estimates of ADRD prevalence and incidence in 2020 Medicare and published them on our dementia surveillance website. 24 Estimates will be refined pending validation and updated with additional years of data as they become available.

Our 3-level case definition is novel in that it was driven by researcher-consensus as well as data analysis and identifies dementia with varying degrees of certainty. Of note, ICD-10-CM codes used to identify possible ADRD have lower researcher consensus and less specific code descriptions (ie, do not contain dementia or Alzheimer ). Use of the possible ADRD codes may reflect physician uncertainty about a dementia diagnosis or medical events involving ADRD-like symptoms in patients without underlying dementia. 25 - 27 Our definition also excludes several previously used codes that were determined to not indicate ADRD by expert clinicians. Compared with the commonly used CCW algorithm, which similarly uses a 3-year look-back period, our case definition is more specific when limited to the highly likely and likely categories, but broader when also including the possible ADRD category. The CCW algorithm estimated prevalence of 10.7% in 2019 Medicare FFS beneficiaries 28 falls between our estimates for FFS beneficiaries of 8.6% for highly likely or likely ADRD and 12.6% for all 3 categories.

Importantly, we saw expected and meaningful differences between beneficiaries identified in each ADRD category. Moving from the no evidence of ADRD to the highly likely ADRD groups, beneficiaries became progressively older and more frail and had greater rates of dual-eligibility, LTC use, and death, which is consistent with prior research. 29 - 35 Notably, prevalence of highly likely ADRD was 29.1% in beneficiaries aged 85 years or older, 72.8% in LTC users, and 36.2% in decedents, compared with 7.2% in the general Medicare population. Higher rates of dual-eligibility in ADRD groups may be driven by ADRD beneficiaries spending down assets to qualify for Medicaid and obtain LTC coverage. These differences persisted after age standardization and lend confidence to our case definitions.

Application of our case definitions also showed disparities in diagnosis rates by race in the expected direction—higher dementia risk among non-Hispanic Black beneficiaries relative to non-Hispanic White beneficiaries 36 , 37 —after age standardization to account for lower life expectancy among non-Hispanic Black individuals. 38 However, because non-Hispanic Black individuals also have a greater risk of under-diagnosis of ADRD than non-Hispanic White individuals, 39 disparities in true underlying rates may be higher than observed. Additionally, we found higher-than-expected representation of Hispanic and Asian and Pacific Islander beneficiaries among those that had an ADRD-targeting drug without diagnostic ( ICD-10-CM ) evidence. We hypothesize that differences in cultural perceptions around dementia and cognitive decline (eg, memory loss as a normal aging process) 40 , 41 may result in lower utilization of diagnosis codes when providers suspect dementia. Using PDE claims may result in higher and more accurate rates of ADRD among Hispanic and Asian and Pacific Islander individuals despite the overall small number of beneficiaries identified by PDE claims alone.

Finally, also consistent with past research, 29 , 35 , 42 PMPM FFS spending was substantially higher for beneficiaries with evidence of ADRD compared with those with no evidence of ADRD. Medicare FFS PMPM spending was relatively similar across the highly likely, likely, and possible ADRD groups despite differences in frailty and mortality. Medicare FFS spending may not be generalizable to those with MA (for whom costs cannot be computed) and is only part of the economic story. Medicaid is the primary US payer of LTC; higher rates of dual-eligibility and LTC use among the highly likely ADRD group indicate that differences in total federal and state spending between the highly likely ADRD and other groups are likely larger. We also did not capture patient and family health–related out-of-pocket expenses and informal care costs ($203 117 in families caring for a patient living with dementia vs $102 955 in families caring for a patient without dementia over the last 7 years of the patient’s life 42 ), forgone wages, or other impacts on informal caregivers, and payments made by other assistance programs. Finally, we caution that our spending measure represents total Medicare FFS spending, rather than the incremental ADRD costs.

This study is limited by at least the following. First, our ADRD case definition was driven by researcher-consensus, and validation against other dementia ascertainment methods (including ascertainment based on in-person clinical and neuropsychological assessments) is necessary. Both over- and under-diagnosis of ADRD have been documented in Medicare claims, 35 , 39 and the 8.0 million beneficiaries identified as having some evidence of ADRD by our case definition will include some without ADRD, especially those in the possible category. Similarly, this method only captures documented cases of dementia in Medicare administrative records and cannot capture beneficiaries with unrecognized and/or undocumented ADRD. If we assume a 60% rate of undetected dementia in the US 43 our estimates would suggest an additional 12 million beneficiaries may be living with ADRD. Additionally, our data show a marginally higher rate of ADRD in MA than in FFS enrollees (14.5% vs 12.6% across the 3 categories), which may reflect beneficiary selection in MA plans, MA vs FFS differences in clinical ADRD assessment and diagnosis rates, differences in claims or encounter documentation, or a combination thereof. Given the rapid rise in MA participation (from 33% in 2017 to 51% in 2023) and variation in MA penetration across counties, 44 , 45 it is also important to understand potential differences in performance of this case definition between MA and FFS beneficiaries. As such, validation of this case definition against in-person clinical and other ascertainment methods to assess performance (including sensitivity, specificity, positive predictive value, and negative predictive value), separately for Medicare FFS and MA, is critical for refining and calibrating estimates to accurately capture the diagnosed prevalence and incidence of dementia. Pending validation, our case definitions should be considered provisional. Notably, we expect the possible ADRD category to identify a higher proportion of individuals who do not have ADRD. Thus, it is important to report the possible ADRD category separately from the likely and highly likely ADRD categories in research and surveillance efforts using these case definitions.

Second, evidence for ADRD documented in electronic health or insurance records outside the Medicare system is not captured by our method; this is particularly problematic for beneficiaries without Medicare Parts B or D (7.5% and 25.6% of Medicare enrollees, respectively 43 , 46 ). Third, we deliberately used data from 2017 to 2019 to avoid the COVID-19 pandemic years, which resulted in secular shocks, including excess senior deaths, forgone or deferred care, and increased telehealth, which may have impacted dementia diagnosis. Research is necessary to understand these effects but will necessarily be delayed pending new data. Fourth, Namzaric, a memantine and donepezil combination drug approved in 2014, was not included by any prescription-drug based identification strategy; while the impact of including this drug necessitates further investigation, we anticipate a negligible effect given that just 0.1% of the sample had an ADRD-targeting prescription drug without ICD-10-CM evidence. Similarly, ICD-10 -CM code updates from October 2022 added 29 highly specific codes each under code roots F01 (vascular dementia) F02 (dementia in other diseases classified elsewhere), and F03 (unspecified dementia) (eTable 5 in Supplement 1 ). 47 We recommend that applications of our approach to Medicare records beginning in October 2022 include these for identifying highly likely and likely ADRD. Fifth, in developing our case definitions, we only considered use of ICD-10-CM codes and prescription drugs but did not consider other criteria of existing ADRD-identification algorithms, including look-back period, types of claims or encounter data considered, number of claims or encounters with relevant ICD-10-CM codes required, and time elapsed between claims and encounters; sensitivity analyses around these different criteria are beyond the scope of this paper.

In this cross-sectional study, our novel case definition for ADRD identified approximately 5.4 million Medicare beneficiaries with evidence of at least likely ADRD in 2019. Pending validation against in-person clinical and other ascertainment methods, this definition can be adopted for provisional use in national surveillance efforts.

Accepted for Publication: June 17, 2024.

Published: September 3, 2024. doi:10.1001/jamanetworkopen.2024.27610

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Gianattasio KZ et al. JAMA Network Open .

Corresponding Author: Kan Z. Gianattasio, PhD, NORC at the University of Chicago, 4350 East-West Hwy 8th Floor, Bethesda, MD 20814 ( [email protected] ).

Author Contributions: Mr Wachsmuth and Mr Murphy had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Gianattasio, Hartzman, Wittenborn, Power, Rein.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Gianattasio, Wachsmuth, Hartzman, Cutroneo, Wittenborn, Rein.

Critical review of the manuscript for important intellectual content: Gianattasio, Murphy, Hartzman, Montazer, Power, Rein.

Statistical analysis: Gianattasio, Wachsmuth, Murphy.

Obtained funding: Wittenborn, Rein.

Administrative, technical, or material support: Hartzman, Montazer, Cutroneo.

Supervision: Hartzman, Rein.

Conflict of Interest Disclosures: None reported.

Funding/Support: Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health (Award No. R01AG075730).

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Data Sharing Statement: See Supplement 2 .

Additional Contributions: We would like to thank Christina Prather, MD (George Washington University); Tania Alchalabi, MD (George Washington University); and Raymond Scott Turner, MD, PhD (Georgetown University), for providing critical review of the International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) codes from a clinical perspective. Drs Prather, Alchalabi, and Turner did not receive compensation for their contributions to this work. We also wish to acknowledge the critical input into data processing and analysis decisions made by Qian Gu, PhD (KPMG); Carrie Bao, BS (KPMG); and Samuel Knisely, BA, (KPMG). Dr Gu, Ms Bao, and Mr Knisely received funding from the same National Institute on Aging grant (R01AG075730) that funded this study for their input.

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