silverman 2020 qualitative research

Qualitative Research

Qualitative Research in Education | Intermediate/Advanced Qualitative Research | Introduction to Qualitative Research Methods

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Written by leaders of qualitative methodology and edited by one of the biggest names in the field, this book provides up-to-date and interdisciplinary insight into a range of qualitative methods. Bringing together different perspectives, contributors discuss theoretical underpinnings of these methods before taking readers through the process of each approach and helping them develop skills needed to carry out this type of research autonomously and with confidence.

Highlights of this new edition include:

• New chapters on multimethod qualitative research, using digital data and video, and addressing social issues in research.
• More guidance on how to store and manage data appropriately.
• Advice on how to publish research in journals.

Full of practical tips, exercises and summaries, this book continues to be a masterclass in qualitative research for students and researchers across the social sciences and beyond.

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This book of readings provides us with a wealth of varied advice enlightening the researcher about the exciting world of qualitative research. I recommend the book without hesitation. David Avison Distinguished Emeritus Professor, ESSEC Business School, Paris.

David Silverman’s  Qualitative Research , now in its 5 th  edition, is a storehouse of readily accessible approaches to doing qualitative research. it combines in depth focus with broad coverage – an essential resource for researchers requiring up to date advice on the latest approaches to this burgeoning field of research and study. Stewart Clegg UTS Business School – Management Department

The fifth edition of this advanced reader in qualitative methods has retained and added to its stunning line-up of authors, increasing and updating its breadth and depth to present leading accounts of the fast moving field of social media analysis and the use of video and other visual data, in addition to a wide range of other methods used by qualitative researchers. This book will really help qualitative researchers think through and enhance their practice and I recommend it Clive Seale Brunel University

It provided me with ideas for further research in my field based on vi sual methods, internet communication, ethnography, and focus groups. Izhar Oplatka Tel Aviv University

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Qualitative Research Paperback – 23 Dec. 2020

Written by leaders of qualitative methodology, this book provides up-to-date and interdisciplinary insight into a range of qualitative methods. Bringing together different perspectives, contributors discuss theoretical underpinnings of these methods before taking readers through the process of each approach and helping them develop skills needed to carry out this type of research autonomously and with confidence. Highlights include:

• New chapters on multimethod qualitative research, using digital data and video, and addressing social issues in research.
• More guidance on how to store and manage data appropriately.
• Advice on how to publish research in journals.

Full of practical tips, exercises and summaries, this book continues to be a masterclass in qualitative research for students and researchers across the social sciences and beyond.

• ISBN-10 1529712971
• ISBN-13 978-1529712971
• Edition Fifth
• Publisher SAGE Publications Ltd
• Publication date 23 Dec. 2020
• Language English
• Dimensions 18.6 x 3 x 23.2 cm
• Print length 520 pages
• See all details

Product description

This book of readings provides us with a wealth of varied advice enlightening the researcher about the exciting world of qualitative research. I recommend the book without hesitation.

David Silverman’s Qualitative Research , now in its 5 th edition, is a storehouse of readily accessible approaches to doing qualitative research. it combines in depth focus with broad coverage – an essential resource for researchers requiring up to date advice on the latest approaches to this burgeoning field of research and study.

The fifth edition of this advanced reader in qualitative methods has retained and added to its stunning line-up of authors, increasing and updating its breadth and depth to present leading accounts of the fast moving field of social media analysis and the use of video and other visual data, in addition to a wide range of other methods used by qualitative researchers. This book will really help qualitative researchers think through and enhance their practice and I recommend it

From the Back Cover

About the author.

David Silverman trained as a sociologist at the London School of Economics and the University of California, Los Angeles. He taught for 32 years at Goldsmiths, University of London, where he is now Emeritus Professor in the Sociology Department as well as Visiting Professor in the Business Schools, King’s College, London, Leeds University and University of Technology Sydney and Adjunct Professor, Faculty of Education, Queensland University of Technology. He is interested in conversation and discourse analysis and he has researched medical consultations, shelters for homeless people and HIV-test counselling. He is the author of Doing Qualitative Research (sixth edition, 2022) and A Very Short, Fairly Interesting, Reasonably Cheap Book about Qualitative Research (second edition, 2013c). He is the editor of Qualitative Research (fifth edition, 2021) and the Sage series Introducing Qualitative Methods. In recent years, he has offered short, hands-on workshops in qualitative research for universities in Europe, Asia, Africa and Australia.  Now retired from full-time work, he aims to watch 100 days of county cricket a year. He also enjoys spending time with his grandchildren and great-grandsons as well as voluntary work in an old people’s home where he chats and sings with residents.

Product details

• Publisher ‏ : ‎ SAGE Publications Ltd; Fifth edition (23 Dec. 2020)
• Language ‏ : ‎ English
• Paperback ‏ : ‎ 520 pages
• ISBN-10 ‏ : ‎ 1529712971
• ISBN-13 ‏ : ‎ 978-1529712971
• Dimensions ‏ : ‎ 18.6 x 3 x 23.2 cm
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Interpreting Qualitative Data

• David Silverman - Visiting Professor at the University of Technology, Sydney and King’s College, London, Emeritus Professor at Goldsmiths’ College, Visiting Professor Emeritus at Leeds University Business School and Adjunct Professor at Queensland University of Technology
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There is no better book for teaching qualitative research.  It is also a great start point for researchers considering what might be involved in using different qualitative methods and situating them in a broader context.  For Silverman qualitative research is about quality and rigor and his mission is to improve both.  It is extremely clearly written and free of qualitative jargon; while not shy of theory it shows how it can support design and analysis.  The new edition builds effectively on the platform of the previous editions and sets the standard for writing about qualitative research. 

The new 7th edition of Interpreting Qualitative Data by David Silverman offers undergraduate students an invaluable resource for exploring the theory, methods and practice of qualitative research. With a focus on analytical problem-solving and the examination of everyday realities, Silverman’s expert guidance empowers learners to navigate the complexities of qualitative research with confidence. This is an essential companion for both taught courses and research projects, ensuring students develop a deep understanding of qualitative analysis techniques.

David Silverman is globally respected for the rigour of his approach to qualitative research, and for the clarity and passion with which this is expressed in his books. The new edition of this classic helps undergraduates develop skills to carry out their immediate assignments. But it also lays foundations for employability. Whether a future career involves observing people, talking to them, making sense of documents or asking how statistics were created, readers will always be able to return to this text with confidence that it will help them to succeed. 

For the best introductory text to qualitative research methods, look no further than David Silverman’s Interpreting Qualitative Data, now in its seventh edition. The new edition includes many new features to help the student reader ‘do research’, not as something learnt by rote but as something experienced through practice and reflection. In an increasingly digital age it pays specific attention to the interpretative analysis of digital data. The great strengths of the book are its many examples and its balanced discussion of the different options available to the qualitative researcher as well as its focus on orienting these to practices

Good text for qualitative research

Looking for a more basic textbook

This is a very useful addition to the BA reading list, informative, but very readable.

It is an outstandingly easy-to-read book on qualitative methods! I love the additional lecturer's resources.

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Doing Qualitative Research

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Methodologic and Data-Analysis Triangulation in Case Studies: A Scoping Review

Margarithe charlotte schlunegger.

1 Department of Health Professions, Applied Research & Development in Nursing, Bern University of Applied Sciences, Bern, Switzerland

2 Faculty of Health, School of Nursing Science, Witten/Herdecke University, Witten, Germany

Maya Zumstein-Shaha

Rebecca palm.

3 Department of Health Care Research, Carl von Ossietzky University Oldenburg, Oldenburg, Germany

Associated Data

Supplemental material, sj-docx-1-wjn-10.1177_01939459241263011 for Methodologic and Data-Analysis Triangulation in Case Studies: A Scoping Review by Margarithe Charlotte Schlunegger, Maya Zumstein-Shaha and Rebecca Palm in Western Journal of Nursing Research

We sought to explore the processes of methodologic and data-analysis triangulation in case studies using the example of research on nurse practitioners in primary health care.

Design and methods:

We conducted a scoping review within Arksey and O’Malley’s methodological framework, considering studies that defined a case study design and used 2 or more data sources, published in English or German before August 2023.

Data sources:

The databases searched were MEDLINE and CINAHL, supplemented with hand searching of relevant nursing journals. We also examined the reference list of all the included studies.

In total, 63 reports were assessed for eligibility. Ultimately, we included 8 articles. Five studies described within-method triangulation, whereas 3 provided information on between/across-method triangulation. No study reported within-method triangulation of 2 or more quantitative data-collection procedures. The data-collection procedures were interviews, observation, documentation/documents, service records, and questionnaires/assessments. The data-analysis triangulation involved various qualitative and quantitative methods of analysis. Details about comparing or contrasting results from different qualitative and mixed-methods data were lacking.

Conclusions:

Various processes for methodologic and data-analysis triangulation are described in this scoping review but lack detail, thus hampering standardization in case study research, potentially affecting research traceability. Triangulation is complicated by terminological confusion. To advance case study research in nursing, authors should reflect critically on the processes of triangulation and employ existing tools, like a protocol or mixed-methods matrix, for transparent reporting. The only existing reporting guideline should be complemented with directions on methodologic and data-analysis triangulation.

Case study research is defined as “an empirical method that investigates a contemporary phenomenon (the ‘case’) in depth and within its real-world context, especially when the boundaries between phenomenon and context may not be clearly evident. A case study relies on multiple sources of evidence, with data needing to converge in a triangulating fashion.” 1 (p15) This design is described as a stand-alone research approach equivalent to grounded theory and can entail single and multiple cases. 1 , 2 However, case study research should not be confused with single clinical case reports. “Case reports are familiar ways of sharing events of intervening with single patients with previously unreported features.” 3 (p107) As a methodology, case study research encompasses substantially more complexity than a typical clinical case report. 1 , 3

A particular characteristic of case study research is the use of various data sources, such as quantitative data originating from questionnaires as well as qualitative data emerging from interviews, observations, or documents. Therefore, a case study always draws on multiple sources of evidence, and the data must converge in a triangulating manner. 1 When using multiple data sources, a case or cases can be examined more convincingly and accurately, compensating for the weaknesses of the respective data sources. 1 Another characteristic is the interaction of various perspectives. This involves comparing or contrasting perspectives of people with different points of view, eg, patients, staff, or leaders. 4 Through triangulation, case studies contribute to the completeness of the research on complex topics, such as role implementation in clinical practice. 1 , 5 Triangulation involves a combination of researchers from various disciplines, of theories, of methods, and/or of data sources. By creating connections between these sources (ie, investigator, theories, methods, data sources, and/or data analysis), a new understanding of the phenomenon under study can be obtained. 6 , 7

This scoping review focuses on methodologic and data-analysis triangulation because concrete procedures are missing, eg, in reporting guidelines. Methodologic triangulation has been called methods, mixed methods, or multimethods. 6 It can encompass within-method triangulation and between/across-method triangulation. 7 “Researchers using within-method triangulation use at least 2 data-collection procedures from the same design approach.” 6 (p254) Within-method triangulation is either qualitative or quantitative but not both. Therefore, within-method triangulation can also be considered data source triangulation. 8 In contrast, “researchers using between/across-method triangulation employ both qualitative and quantitative data-collection methods in the same study.” 6 (p254) Hence, methodologic approaches are combined as well as various data sources. For this scoping review, the term “methodologic triangulation” is maintained to denote between/across-method triangulation. “Data-analysis triangulation is the combination of 2 or more methods of analyzing data.” 6 (p254)

Although much has been published on case studies, there is little consensus on the quality of the various data sources, the most appropriate methods, or the procedures for conducting methodologic and data-analysis triangulation. 5 According to the EQUATOR (Enhancing the QUAlity and Transparency Of health Research) clearinghouse for reporting guidelines, one standard exists for organizational case studies. 9 Organizational case studies provide insights into organizational change in health care services. 9 Rodgers et al 9 pointed out that, although high-quality studies are being funded and published, they are sometimes poorly articulated and methodologically inadequate. In the reporting checklist by Rodgers et al, 9 a description of the data collection is included, but reporting directions on methodologic and data-analysis triangulation are missing. Therefore, the purpose of this study was to examine the process of methodologic and data-analysis triangulation in case studies. Accordingly, we conducted a scoping review to elicit descriptions of and directions for triangulation methods and analysis, drawing on case studies of nurse practitioners (NPs) in primary health care as an example. Case studies are recommended to evaluate the implementation of new roles in (primary) health care, such as that of NPs. 1 , 5 Case studies on new role implementation can generate a unique and in-depth understanding of specific roles (individual), teams (smaller groups), family practices or similar institutions (organization), and social and political processes in health care systems. 1 , 10 The integration of NPs into health care systems is at different stages of progress around the world. 11 Therefore, studies are needed to evaluate this process.

The methodological framework by Arksey and O’Malley 12 guided this scoping review. We examined the current scientific literature on the use of methodologic and data-analysis triangulation in case studies on NPs in primary health care. The review process included the following stages: (1) establishing the research question; (2) identifying relevant studies; (3) selecting the studies for inclusion; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting experts in the field. 12 Stage 6 was not performed due to a lack of financial resources. The reporting of the review followed the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review) guideline by Tricco et al 13 (guidelines for reporting systematic reviews and meta-analyses [ Supplementary Table A ]). Scoping reviews are not eligible for registration in PROSPERO.

Stage 1: Establishing the Research Question

The aim of this scoping review was to examine the process of triangulating methods and analysis in case studies on NPs in primary health care to improve the reporting. We sought to answer the following question: How have methodologic and data-analysis triangulation been conducted in case studies on NPs in primary health care? To answer the research question, we examined the following elements of the selected studies: the research question, the study design, the case definition, the selected data sources, and the methodologic and data-analysis triangulation.

Stage 2: Identifying Relevant Studies

A systematic database search was performed in the MEDLINE (via PubMed) and CINAHL (via EBSCO) databases between July and September 2020 to identify relevant articles. The following terms were used as keyword search strategies: (“Advanced Practice Nursing” OR “nurse practitioners”) AND (“primary health care” OR “Primary Care Nursing”) AND (“case study” OR “case studies”). Searches were limited to English- and German-language articles. Hand searches were conducted in the journals Nursing Inquiry , BMJ Open , and BioMed Central ( BMC ). We also screened the reference lists of the studies included. The database search was updated in August 2023. The complete search strategy for all the databases is presented in Supplementary Table B .

Stage 3: Selecting the Studies

Inclusion and exclusion criteria.

We used the inclusion and exclusion criteria reported in Table 1 . We included studies of NPs who had at least a master’s degree in nursing according to the definition of the International Council of Nurses. 14 This scoping review considered studies that were conducted in primary health care practices in rural, urban, and suburban regions. We excluded reviews and study protocols in which no data collection had occurred. Articles were included without limitations on the time period or country of origin.

Inclusion and Exclusion Criteria.

Screening process

After the search, we collated and uploaded all the identified records into EndNote v.X8 (Clarivate Analytics, Philadelphia, Pennsylvania) and removed any duplicates. Two independent reviewers (MCS and SA) screened the titles and abstracts for assessment in line with the inclusion criteria. They retrieved and assessed the full texts of the selected studies while applying the inclusion criteria. Any disagreements about the eligibility of studies were resolved by discussion or, if no consensus could be reached, by involving experienced researchers (MZ-S and RP).

Stages 4 and 5: Charting the Data and Collating, Summarizing, and Reporting the Results

The first reviewer (MCS) extracted data from the selected publications. For this purpose, an extraction tool developed by the authors was used. This tool comprised the following criteria: author(s), year of publication, country, research question, design, case definition, data sources, and methodologic and data-analysis triangulation. First, we extracted and summarized information about the case study design. Second, we narratively summarized the way in which the data and methodological triangulation were described. Finally, we summarized the information on within-case or cross-case analysis. This process was performed using Microsoft Excel. One reviewer (MCS) extracted data, whereas another reviewer (SA) cross-checked the data extraction, making suggestions for additions or edits. Any disagreements between the reviewers were resolved through discussion.

A total of 149 records were identified in 2 databases. We removed 20 duplicates and screened 129 reports by title and abstract. A total of 46 reports were assessed for eligibility. Through hand searches, we identified 117 additional records. Of these, we excluded 98 reports after title and abstract screening. A total of 17 reports were assessed for eligibility. From the 2 databases and the hand search, 63 reports were assessed for eligibility. Ultimately, we included 8 articles for data extraction. No further articles were included after the reference list screening of the included studies. A PRISMA flow diagram of the study selection and inclusion process is presented in Figure 1 . As shown in Tables 2 and ​ and3, 3 , the articles included in this scoping review were published between 2010 and 2022 in Canada (n = 3), the United States (n = 2), Australia (n = 2), and Scotland (n = 1).

PRISMA flow diagram.

Characteristics of Articles Included.

Overview of Within-Method, Between/Across-Method, and Data-Analysis Triangulation.

Research Question, Case Definition, and Case Study Design

The following sections describe the research question, case definition, and case study design. Case studies are most appropriate when asking “how” or “why” questions. 1 According to Yin, 1 how and why questions are explanatory and lead to the use of case studies, histories, and experiments as the preferred research methods. In 1 study from Canada, eg, the following research question was presented: “How and why did stakeholders participate in the system change process that led to the introduction of the first nurse practitioner-led Clinic in Ontario?” (p7) 19 Once the research question has been formulated, the case should be defined and, subsequently, the case study design chosen. 1 In typical case studies with mixed methods, the 2 types of data are gathered concurrently in a convergent design and the results merged to examine a case and/or compare multiple cases. 10

Research question

“How” or “why” questions were found in 4 studies. 16 , 17 , 19 , 22 Two studies additionally asked “what” questions. Three studies described an exploratory approach, and 1 study presented an explanatory approach. Of these 4 studies, 3 studies chose a qualitative approach 17 , 19 , 22 and 1 opted for mixed methods with a convergent design. 16

In the remaining studies, either the research questions were not clearly stated or no “how” or “why” questions were formulated. For example, “what” questions were found in 1 study. 21 No information was provided on exploratory, descriptive, and explanatory approaches. Schadewaldt et al 21 chose mixed methods with a convergent design.

Case definition and case study design

A total of 5 studies defined the case as an organizational unit. 17 , 18 - 20 , 22 Of the 8 articles, 4 reported multiple-case studies. 16 , 17 , 22 , 23 Another 2 publications involved single-case studies. 19 , 20 Moreover, 2 publications did not state the case study design explicitly.

Within-Method Triangulation

This section describes within-method triangulation, which involves employing at least 2 data-collection procedures within the same design approach. 6 , 7 This can also be called data source triangulation. 8 Next, we present the single data-collection procedures in detail. In 5 studies, information on within-method triangulation was found. 15 , 17 - 19 , 22 Studies describing a quantitative approach and the triangulation of 2 or more quantitative data-collection procedures could not be included in this scoping review.

Qualitative approach

Five studies used qualitative data-collection procedures. Two studies combined face-to-face interviews and documents. 15 , 19 One study mixed in-depth interviews with observations, 18 and 1 study combined face-to-face interviews and documentation. 22 One study contained face-to-face interviews, observations, and documentation. 17 The combination of different qualitative data-collection procedures was used to present the case context in an authentic and complex way, to elicit the perspectives of the participants, and to obtain a holistic description and explanation of the cases under study.

All 5 studies used qualitative interviews as the primary data-collection procedure. 15 , 17 - 19 , 22 Face-to-face, in-depth, and semi-structured interviews were conducted. The topics covered in the interviews included processes in the introduction of new care services and experiences of barriers and facilitators to collaborative work in general practices. Two studies did not specify the type of interviews conducted and did not report sample questions. 15 , 18

Observations

In 2 studies, qualitative observations were carried out. 17 , 18 During the observations, the physical design of the clinical patients’ rooms and office spaces was examined. 17 Hungerford et al 18 did not explain what information was collected during the observations. In both studies, the type of observation was not specified. Observations were generally recorded as field notes.

Public documents

In 3 studies, various qualitative public documents were studied. 15 , 19 , 22 These documents included role description, education curriculum, governance frameworks, websites, and newspapers with information about the implementation of the role and general practice. Only 1 study failed to specify the type of document and the collected data. 15

Electronic health records

In 1 study, qualitative documentation was investigated. 17 This included a review of dashboards (eg, provider productivity reports or provider quality dashboards in the electronic health record) and quality performance reports (eg, practice-wide or co-management team-wide performance reports).

Between/Across-Method Triangulation

This section describes the between/across methods, which involve employing both qualitative and quantitative data-collection procedures in the same study. 6 , 7 This procedure can also be denoted “methodologic triangulation.” 8 Subsequently, we present the individual data-collection procedures. In 3 studies, information on between/across triangulation was found. 16 , 20 , 21

Mixed methods

Three studies used qualitative and quantitative data-collection procedures. One study combined face-to-face interviews, documentation, and self-assessments. 16 One study employed semi-structured interviews, direct observation, documents, and service records, 20 and another study combined face-to-face interviews, non-participant observation, documents, and questionnaires. 23

All 3 studies used qualitative interviews as the primary data-collection procedure. 16 , 20 , 23 Face-to-face and semi-structured interviews were conducted. In the interviews, data were collected on the introduction of new care services and experiences of barriers to and facilitators of collaborative work in general practices.

Observation

In 2 studies, direct and non-participant qualitative observations were conducted. 20 , 23 During the observations, the interaction between health professionals or the organization and the clinical context was observed. Observations were generally recorded as field notes.

In 2 studies, various qualitative public documents were examined. 20 , 23 These documents included role description, newspapers, websites, and practice documents (eg, flyers). In the documents, information on the role implementation and role description of NPs was collected.

Individual journals

In 1 study, qualitative individual journals were studied. 16 These included reflective journals from NPs, who performed the role in primary health care.

Service records

Only 1 study involved quantitative service records. 20 These service records were obtained from the primary care practices and the respective health authorities. They were collected before and after the implementation of an NP role to identify changes in patients’ access to health care, the volume of patients served, and patients’ use of acute care services.

Questionnaires/Assessment

In 2 studies, quantitative questionnaires were used to gather information about the teams’ satisfaction with collaboration. 16 , 21 In 1 study, 3 validated scales were used. The scales measured experience, satisfaction, and belief in the benefits of collaboration. 21 Psychometric performance indicators of these scales were provided. However, the time points of data collection were not specified; similarly, whether the questionnaires were completed online or by hand was not mentioned. A competency self-assessment tool was used in another study. 16 The assessment comprised 70 items and included topics such as health promotion, protection, disease prevention and treatment, the NP-patient relationship, the teaching-coaching function, the professional role, managing and negotiating health care delivery systems, monitoring and ensuring the quality of health care practice, and cultural competence. Psychometric performance indicators were provided. The assessment was completed online with 2 measurement time points (pre self-assessment and post self-assessment).

Data-Analysis Triangulation

This section describes data-analysis triangulation, which involves the combination of 2 or more methods of analyzing data. 6 Subsequently, we present within-case analysis and cross-case analysis.

Mixed-methods analysis

Three studies combined qualitative and quantitative methods of analysis. 16 , 20 , 21 Two studies involved deductive and inductive qualitative analysis, and qualitative data were analyzed thematically. 20 , 21 One used deductive qualitative analysis. 16 The method of analysis was not specified in the studies. Quantitative data were analyzed using descriptive statistics in 3 studies. 16 , 20 , 23 The descriptive statistics comprised the calculation of the mean, median, and frequencies.

Qualitative methods of analysis

Two studies combined deductive and inductive qualitative analysis, 19 , 22 and 2 studies only used deductive qualitative analysis. 15 , 18 Qualitative data were analyzed thematically in 1 study, 22 and data were treated with content analysis in the other. 19 The method of analysis was not specified in the 2 studies.

Within-case analysis

In 7 studies, a within-case analysis was performed. 15 - 20 , 22 Six studies used qualitative data for the within-case analysis, and 1 study employed qualitative and quantitative data. Data were analyzed separately, consecutively, or in parallel. The themes generated from qualitative data were compared and then summarized. The individual cases were presented mostly as a narrative description. Quantitative data were integrated into the qualitative description with tables and graphs. Qualitative and quantitative data were also presented as a narrative description.

Cross-case analyses

Of the multiple-case studies, 5 carried out cross-case analyses. 15 - 17 , 20 , 22 Three studies described the cross-case analysis using qualitative data. Two studies reported a combination of qualitative and quantitative data for the cross-case analysis. In each multiple-case study, the individual cases were contrasted to identify the differences and similarities between the cases. One study did not specify whether a within-case or a cross-case analysis was conducted. 23

Confirmation or contradiction of data

This section describes confirmation or contradiction through qualitative and quantitative data. 1 , 4 Qualitative and quantitative data were reported separately, with little connection between them. As a result, the conclusions on neither the comparisons nor the contradictions could be clearly determined.

Confirmation or contradiction among qualitative data

In 3 studies, the consistency of the results of different types of qualitative data was highlighted. 16 , 19 , 21 In particular, documentation and interviews or interviews and observations were contrasted:

• Confirmation between interviews and documentation: The data from these sources corroborated the existence of a common vision for an NP-led clinic. 19
• Confirmation among interviews and observation: NPs experienced pressure to find and maintain their position within the existing system. Nurse practitioners and general practitioners performed complete episodes of care, each without collaborative interaction. 21
• Contradiction among interviews and documentation: For example, interviewees mentioned that differentiating the scope of practice between NPs and physicians is difficult as there are too many areas of overlap. However, a clear description of the scope of practice for the 2 roles was provided. 21

Confirmation through a combination of qualitative and quantitative data

Both types of data showed that NPs and general practitioners wanted to have more time in common to discuss patient cases and engage in personal exchanges. 21 In addition, the qualitative and quantitative data confirmed the individual progression of NPs from less competent to more competent. 16 One study pointed out that qualitative and quantitative data obtained similar results for the cases. 20 For example, integrating NPs improved patient access by increasing appointment availability.

Contradiction through a combination of qualitative and quantitative data

Although questionnaire results indicated that NPs and general practitioners experienced high levels of collaboration and satisfaction with the collaborative relationship, the qualitative results drew a more ambivalent picture of NPs’ and general practitioners’ experiences with collaboration. 21

Research Question and Design

The studies included in this scoping review evidenced various research questions. The recommended formats (ie, how or why questions) were not applied consistently. Therefore, no case study design should be applied because the research question is the major guide for determining the research design. 2 Furthermore, case definitions and designs were applied variably. The lack of standardization is reflected in differences in the reporting of these case studies. Generally, case study research is viewed as allowing much more freedom and flexibility. 5 , 24 However, this flexibility and the lack of uniform specifications lead to confusion.

Methodologic Triangulation

Methodologic triangulation, as described in the literature, can be somewhat confusing as it can refer to either data-collection methods or research designs. 6 , 8 For example, methodologic triangulation can allude to qualitative and quantitative methods, indicating a paradigmatic connection. Methodologic triangulation can also point to qualitative and quantitative data-collection methods, analysis, and interpretation without specific philosophical stances. 6 , 8 Regarding “data-collection methods with no philosophical stances,” we would recommend using the wording “data source triangulation” instead. Thus, the demarcation between the method and the data-collection procedures will be clearer.

Within-Method and Between/Across-Method Triangulation

Yin 1 advocated the use of multiple sources of evidence so that a case or cases can be investigated more comprehensively and accurately. Most studies included multiple data-collection procedures. Five studies employed a variety of qualitative data-collection procedures, and 3 studies used qualitative and quantitative data-collection procedures (mixed methods). In contrast, no study contained 2 or more quantitative data-collection procedures. In particular, quantitative data-collection procedures—such as validated, reliable questionnaires, scales, or assessments—were not used exhaustively. The prerequisites for using multiple data-collection procedures are availability, the knowledge and skill of the researcher, and sufficient financial funds. 1 To meet these prerequisites, research teams consisting of members with different levels of training and experience are necessary. Multidisciplinary research teams need to be aware of the strengths and weaknesses of different data sources and collection procedures. 1

Qualitative methods of analysis and results

When using multiple data sources and analysis methods, it is necessary to present the results in a coherent manner. Although the importance of multiple data sources and analysis has been emphasized, 1 , 5 the description of triangulation has tended to be brief. Thus, traceability of the research process is not always ensured. The sparse description of the data-analysis triangulation procedure may be due to the limited number of words in publications or the complexity involved in merging the different data sources.

Only a few concrete recommendations regarding the operationalization of the data-analysis triangulation with the qualitative data process were found. 25 A total of 3 approaches have been proposed 25 : (1) the intuitive approach, in which researchers intuitively connect information from different data sources; (2) the procedural approach, in which each comparative or contrasting step in triangulation is documented to ensure transparency and replicability; and (3) the intersubjective approach, which necessitates a group of researchers agreeing on the steps in the triangulation process. For each case study, one of these 3 approaches needs to be selected, carefully carried out, and documented. Thus, in-depth examination of the data can take place. Farmer et al 25 concluded that most researchers take the intuitive approach; therefore, triangulation is not clearly articulated. This trend is also evident in our scoping review.

Mixed-methods analysis and results

Few studies in this scoping review used a combination of qualitative and quantitative analysis. However, creating a comprehensive stand-alone picture of a case from both qualitative and quantitative methods is challenging. Findings derived from different data types may not automatically coalesce into a coherent whole. 4 O’Cathain et al 26 described 3 techniques for combining the results of qualitative and quantitative methods: (1) developing a triangulation protocol; (2) following a thread by selecting a theme from 1 component and following it across the other components; and (3) developing a mixed-methods matrix.

The most detailed description of the conducting of triangulation is the triangulation protocol. The triangulation protocol takes place at the interpretation stage of the research process. 26 This protocol was developed for multiple qualitative data but can also be applied to a combination of qualitative and quantitative data. 25 , 26 It is possible to determine agreement, partial agreement, “silence,” or dissonance between the results of qualitative and quantitative data. The protocol is intended to bring together the various themes from the qualitative and quantitative results and identify overarching meta-themes. 25 , 26

The “following a thread” technique is used in the analysis stage of the research process. To begin, each data source is analyzed to identify the most important themes that need further investigation. Subsequently, the research team selects 1 theme from 1 data source and follows it up in the other data source, thereby creating a thread. The individual steps of this technique are not specified. 26 , 27

A mixed-methods matrix is used at the end of the analysis. 26 All the data collected on a defined case are examined together in 1 large matrix, paying attention to cases rather than variables or themes. In a mixed-methods matrix (eg, a table), the rows represent the cases for which both qualitative and quantitative data exist. The columns show the findings for each case. This technique allows the research team to look for congruency, surprises, and paradoxes among the findings as well as patterns across multiple cases. In our review, we identified only one of these 3 approaches in the study by Roots and MacDonald. 20 These authors mentioned that a causal network analysis was performed using a matrix. However, no further details were given, and reference was made to a later publication. We could not find this publication.

Case Studies in Nursing Research and Recommendations

Because it focused on the implementation of NPs in primary health care, the setting of this scoping review was narrow. However, triangulation is essential for research in this area. This type of research was found to provide a good basis for understanding methodologic and data-analysis triangulation. Despite the lack of traceability in the description of the data and methodological triangulation, we believe that case studies are an appropriate design for exploring new nursing roles in existing health care systems. This is evidenced by the fact that case study research is widely used in many social science disciplines as well as in professional practice. 1 To strengthen this research method and increase the traceability in the research process, we recommend using the reporting guideline and reporting checklist by Rodgers et al. 9 This reporting checklist needs to be complemented with methodologic and data-analysis triangulation. A procedural approach needs to be followed in which each comparative step of the triangulation is documented. 25 A triangulation protocol or a mixed-methods matrix can be used for this purpose. 26 If there is a word limit in a publication, the triangulation protocol or mixed-methods matrix needs to be identified. A schematic representation of methodologic and data-analysis triangulation in case studies can be found in Figure 2 .

Schematic representation of methodologic and data-analysis triangulation in case studies (own work).

Limitations

This study suffered from several limitations that must be acknowledged. Given the nature of scoping reviews, we did not analyze the evidence reported in the studies. However, 2 reviewers independently reviewed all the full-text reports with respect to the inclusion criteria. The focus on the primary care setting with NPs (master’s degree) was very narrow, and only a few studies qualified. Thus, possible important methodological aspects that would have contributed to answering the questions were omitted. Studies describing the triangulation of 2 or more quantitative data-collection procedures could not be included in this scoping review due to the inclusion and exclusion criteria.

Conclusions

Given the various processes described for methodologic and data-analysis triangulation, we can conclude that triangulation in case studies is poorly standardized. Consequently, the traceability of the research process is not always given. Triangulation is complicated by the confusion of terminology. To advance case study research in nursing, we encourage authors to reflect critically on methodologic and data-analysis triangulation and use existing tools, such as the triangulation protocol or mixed-methods matrix and the reporting guideline checklist by Rodgers et al, 9 to ensure more transparent reporting.

Experiences managing behavioral symptoms among Latino caregivers of Latino older adults with dementia and memory problems: a qualitative study

• Michelle S. Keller 1 , 2 , 3 ,
• Nathalie Guevara 4 ,
• Jose-Armando Guerrero 5 ,
• Allison M. Mays 4 ,
• Sara G. McCleskey 6 ,
• Carmen E. Reyes 3 &
• Catherine A. Sarkisian 3 , 7  

BMC Geriatrics volume  24 , Article number:  725 ( 2024 ) Cite this article

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Latinos are more likely than non-Latino Whites to develop dementia and be prescribed antipsychotics for dementia-related behavioral symptoms. Antipsychotics have significant risks yet are often overprescribed. Our understanding of how Latino caregivers of Latino older adults living with dementia perceive and address behavioral issues is limited, impeding our ability to address the root causes of antipsychotic overprescribing.

We interviewed Latino older adults’ caregivers and community-based organization workers serving older adults with cognitive impairment (key informants), focusing on the management of behavioral symptoms and experiences with health services.

We interviewed 8 caregivers and 2 key informants. Caregivers were the spouses, children, or grandchildren of the older adult living with cognitive impairment; their ages ranged from 30 to 95. We identified three categories of how caregivers learned about, managed, and coped with behavioral symptoms: caregivers often faced shortcomings with dementia care in the medical system, receiving limited guidance and support; caregivers found community organizations and senior day centers to be lifelines, as they received relevant, timely advice and support, caregivers often devised their own creative strategies to manage behavioral symptoms.

In-depth interviews suggest that the healthcare system is failing to provide support for behavioral symptoms from dementia; caregivers of Latino older adults rely on community organizations instead.

Peer Review reports

Introduction

The Latino population aged 65 years or older is projected to quintuple over the next four decades, rising to 22% of the older population in the U.S. by 2060 [ 1 ]. One of the critical issues facing Latino older adults is Alzheimer’s Disease and Related Dementias. Dementia describes a group of symptoms affecting cognitive function, memory, language, problem-solving, and social abilities [ 2 ]. Older adults with dementia can exhibit behavioral symptoms such as agitation, aggression, confusion, sleep disturbance, delirium, and walking about, which can be challenging for caregivers to experience and manage [ 3 ]. Many of these behavioral symptoms may be in response to unmet needs, such as hunger, thirst, pain, or lack of physical or social activity [ 4 ]. An estimated 1.3 million Latino older adults are expected to have dementia by 2050 [ 5 ]. Latino older adults are more likely to develop dementia than non-Latino White older adults [ 5 ]. Hypothesized risk factors driving this increased risk of dementia among Latinos include higher rates of type 2 diabetes, depression, hypertension, and cardiovascular disease [ 6 ] and lower levels of educational attainment [ 7 , 8 , 9 ]. Additionally, Latino older adults have earlier onset of dementia symptoms [ 10 ] and a higher prevalence of dementia-related behaviors such as hallucinations, combativeness, or wandering, compared to non-Latino White older adults [ 11 ].

Antipsychotics are psychotropic medications that are sometimes prescribed off-label to manage dementia-related behavioral symptoms such as agitation and aggression, however, these medications have limited positive effects and can increase cognitive decline, risk of falls, stroke, and death [ 12 , 13 ]. The American Geriatrics Society strongly recommends that older adults with dementia avoid these medications unless non-pharmacological interventions have failed and the older adult is posing a threat to themselves or others [ 14 ]. Choosing Wisely, an initiative of the ABIM Foundation which promotes conversations between clinicians, patients, and caregivers about making choices to optimize high-quality care, notes that antipsychotics for dementia are regarded as low value care, i.e., care that is potentially unnecessary or harmful to patients [ 12 , 15 ]. Low value care is described as medical services that should generally be avoided in favor of high value care, i.e., interventions, medications, or services which offer greater benefits compared to their risks. In the case of dementia, high value interventions and medications for addressing behavioral symptoms include non-pharmacological interventions such as reassuring disoriented individuals, reducing noise levels, providing stimulation with structured activities (e.g., music, crafts), addressing underlying pain or hunger, and providing physical activity throughout the day [ 16 ]. Second-line interventions include some classes of antidepressants, which have a safer risk profile for older adults.

Despite guidelines recommending against the use of antipsychotics in older adults with dementia, research shows they are frequently used in community dwelling older adults with dementia: more than one in five (21.6%) of older adults with dementia in the U.S. had at least one antipsychotic fill within the year [ 17 ]. Moreover, use of these medications is higher in Latino older adults compared to non-Latino Whites [ 18 ]. Latino older adults have a 1.62-fold greater use of antipsychotics compared to non-Latino White older adults [ 18 ]. Yet it is not understood why Latino older adults with dementia are more likely to receive antipsychotics than their non-Latino counterparts. Possible reasons for this disparity include low levels of dementia knowledge among Latino family members caring for older adults, low access to high-quality dementia care, or low levels of health literacy – defined as the ability to find, understand, and use information and services to inform health-related decisions [ 18 , 19 ].

Informed and engaged caregivers can act as advocates for reducing low-value care – including antipsychotics – in persons with dementia. Yet we have limited understanding of how Latino caregivers perceive and understand various strategies to address behavioral issues in dementia. This gap in knowledge is a barrier to designing and implementing interventions aimed at addressing the overuse of low value care among Latinos older adults with dementia. The objective of this study was to explore the knowledge and experiences Latino caregivers of Latino older adults with dementia have around managing the behavioral symptoms of dementia as well as their experiences discussing medications for these symptoms with clinicians using a qualitative approach. Additionally, we sought to understand how Latino caregivers of Latino older adults with dementia managed their family member’s medications, and the types of conversations they had with medical providers around medication use. We also aimed to explore caregivers’ experiences with dementia-related health services to identify potential gaps in care. Understanding why Latino older adults are more likely to be prescribed antipsychotics for dementia-related behavioral symptoms can provide important background for designing interventions to reduce the use of these medications when possible.

Subjects and methods

Study design.

We used a qualitative study design with semi-structured interviews conducted individually with Latino caregivers caring for Latino older adults as well as key informant interviews with caregiver advocates. Interviews were conducted in English and Spanish according to participant preference. Caregiver advocates included dementia support group leaders and senior day care center staff. We offered phone interviews to ensure that individuals with varying levels of digital literacy could participate. Additionally, as caregivers often have a difficult time finding respite care, phone interviews allowed caregivers to participate without leaving the home. Moreover, this study took place during the Covid-19 pandemic, which limited our ability to safely conduct interviews in person. We conducted interviews from October 2020-March 2021. We worked closely with a Community Advisory Board (the Los Angeles Community-Academic Partnership for Research in Aging, or LA CAPRA) as part of the UCLA Resource Centers for Minority Aging Research Center for Health Improvement of Minority Elderly (RCMAR/CHIME). We worked with the Community Advisory Board members to define the eligibility criteria, develop recruitment strategies, and design the interview guide. LA CAPRA includes leaders from community-based health organizations, community representatives, community development groups, and senior services organizations. The study was reviewed and approved by the Cedars-Sinai Medical Center Institutional Review Board.

Study participants

Eligibility criteria for caregivers included: serving as a caregiver for a Latino family member either diagnosed with dementia or experiencing memory problems, being 18 years of age or older, and identifying as Latino. Per a recommendation from Community Advisory Board members, we interpreted the definition of the caregiver role broadly because it was felt that Latino families frequently share caregiving responsibilities among several family members.

We opted to interview key informants – caregiver advocates – as well as Latino caregivers in an effort to gain perspective of individuals who regularly interact with caregivers and learn about many challenges and experiences related to caregiving. Eligibility criteria for caregiver advocate key informants, who did not have to be Latino, included having regular contact with Latino caregivers of persons living with dementia in a professional context (e.g., serving as a caregiver support group leader or staff member at a senior day care center serving older adults with dementia).

Recruitment

To recruit caregivers, we used several methods, including (1) flyers posted in geriatrics and primary care clinics at Cedars-Sinai Medical Center, a large health system in Los Angeles, CA with numerous outpatient clinics; (2) direct referrals from geriatricians and primary care physicians at Cedars-Sinai Medical Center; (3) flyers distributed through senior day care centers; (4) word of mouth (i.e., snowball sampling); and (5) emails and phone calls to caregivers participating in support groups associated with Los Angeles-area senior day care centers. We used a brief screening phone call or email to confirm eligibility and then scheduled the interview.

To recruit caregiver advocates, we relied on community partners in the Community Advisory Group to identify caregiver support group leaders and senior day care center staff in the Los Angeles area and emailed potentially eligible study participants. Study participants (caregivers and key informants) were offered a $60 gift card for their participation. We provided information sheets prior to the interviews via email and obtained oral informed consent from all study participants for this study.

Interview guide

Our interview guide (Table  1 , Appendix 1 ) for caregivers included a variety of topics structured around managing behavioral symptoms and experiences with healthcare services. We translated the interview guide into Spanish for the Spanish-language interviews using a professional translation service. MSK and NG, both fluent Spanish speakers, conducted the interviews in Spanish. For caregivers, we collected demographic information, including age, gender, race, ethnic background, educational level, and employment. We also collected demographic information about the person living with dementia and their caregivers. For caregiver advocates, we collected data on age, gender, race, ethnicity, and employment information. Interviews lasted 60–120 min and all were conducted by phone.

Data analysis

All participants were asked for permission to audio-record the interviews. We audio-recorded the interviews and sent them out for professional transcription (and translation, if the interviews were in Spanish). Our study methodology was guided by Constructivist Grounded Theory (CGT) ([ 20 , 21 ]. CGT is characterized by its inductive approach, where codes are constructed from the data and there is simultaneous data collection and analysis. After each interview, we refined the interview guide to explore potential lines of inquiry.

Two coders (NG and JAG) used line-by-line open coding to code all of the interviews in Dedoose, a qualitative coding software (Dedoose Version 9.0.17, (2021). Los Angeles, CA: SocioCultural Research Consultants, LLC) [ 22 ]. Line-by-line coding applies a code to every line of the data, allowing researchers to stay close (i.e., grounded) to the data [ 20 ]. Three investigators (MSK, NG, and JAG) met weekly for 10 weeks to discuss initial codes. All three members of the coding team were involved in discussions to create and refine the codes. Disagreements about the codes were resolved by reviewing the transcripts together in areas of disagreement and coming to a consensus both about how the code should be described and to which types of texts it should be applied. We used process coding [ 23 ], a method of coding which uses gerunds to describe actions in the data. For example, a line of text where a caregiver describes feeling frustrated with the jargon being used by medical professionals might be coded Feeling frustrated with physician about complex language. Process coding, used in conjunction with line-by-line coding, allows qualitative researchers to closely identify participants’ actions, beliefs, and experiences, reducing potential bias imposed by researchers [ 20 ].

After all transcripts were coded through this initial coding process, we exported all of the codes from Dedoose to an Excel spreadsheet and manually grouped the codes into focused, or second-level, codes, which are more conceptual in nature [ 20 ]. To maintain rigor, we discussed the creation of each focused code among the team. We then created the focused codes in Dedoose and categorized the initial codes under each focused code using the software. Finally, we grouped the focused codes into categories, discussing the nuances and complexities – referred to as properties in CGT – within each category.

In CGT, there is a focus on constant comparison throughout the analytic process [ 24 , 25 ]. For example, we compared caregivers’ experiences with discussing behavioral symptoms with clinicians, developing strategies to manage behavioral symptoms, and sharing caregiving responsibilities with other family members. We met weekly throughout the analysis process to construct categories from the codes, noting down potential categories in written memos. Memo writing was used to record decision-making about initial code, focused code, and category construction; articulate potential nuances in each category; and communicate analytic decisions within the team [ 26 ]. Memo writing also allowed us to create an audit trail of our analytic process.

We interviewed eight caregivers and two key informants. Caregivers were the spouses ( n  = 2), children ( n  = 4), or grandchildren ( n  = 2) of the person living with dementia or experiencing memory problems, and caregivers’ ages ranged from 34 to 95 (Table  2 ). Our sample included two mother-daughter pairs caring for the spouse/father in the family where we interviewed both the daughter and the mother. Caregivers in our study identified as Peruvian, Salvadorian, Chicano, Mexican, and Venezuelan, and all resided in California (all but one resided in Southern California). Nearly all had some college education.

Our key informants included a social worker (female, age: 50, non-Latina White) embedded in a community organization that provides adult day care services, and an activities coordinator at an adult day care center serving predominantly Latino older adults (female, age: 56, Mexican-American).

We identified three main categories of how caregivers learned about, managed, and coped with dementia and/or memory-related behavioral symptoms from our interviews: (1) caregivers often faced shortcomings with dementia care in the medical system, receiving limited guidance and support; (2) caregivers found community organizations and senior day centers to be lifelines in helping to manage symptoms, (3) caregivers often devised their own creative strategies to manage and minimize behavioral symptoms. Within each category, we identified sub-categories and describe them below. We use pseudonyms for the study participants in this manuscript to protect participant confidentiality.

Facing shortcomings with dementia care in the medical system

Struggling with getting the diagnosis confirmed.

Several caregivers described having a difficult time receiving a dementia diagnosis for their family member. Diego, 41, described that it took six months to get an initial evaluation with a neurologist to receive a diagnosis for his grandmother, making it difficult for him to get the appropriate services his grandmother needed. Clara, 34, also caring for her grandmother, reported laboring to find a doctor who believed her grandmother’s symptoms weren’t just old age. She described going to a primary care doctor to discuss her grandmother’s worsening symptoms, which included aggression and hiding things, and the doctor told her, Oh , don’t worry , she just old.

Two caregivers in our sample, 34-year-old Soledad and 57-year-old Maria, a mother and daughter pair, had several family members working in the medical system in both the U.S. and Mexico. In addition, Soledad and Maria regularly connected with family in Mexico to learn about the medications Soledad’s father/Maria’s husband was taking. This background empowered Soledad and her family to become more actively engaged in her father’s care. Despite this background, Soledad also struggled with getting specialty dementia care for their father. Soledad worried that her father had not yet seen a neurologist and explained that there were barriers that made it particularly difficult for her and her siblings to advocate for their father. First, she noted that her mother, Maria, who served as the primary caregiver for her father, did not speak English well so sometimes had a difficult time serving as an advocate. Second, she noted that she was located in Southern California while her parents were several hours away, and helped as much as she could, but she was not always able to accompany her father to the doctor’s appointments.

Interviewer: What is the process of diagnosis, what’s that has been like for [your father]? Soledad: It’s been a little rough because we definitely have been trying to get him better care. I know we’re trying to get him into a neurologist so that way they can do more activities, and I’m not sure if he’s seen like a therapist, psychologist… But I know it’s hard because we’re not 100% there to deal with the doctors directly…. But we’ve been trying to get him some extra help to see– so that way they can determine the actual condition. He’s with [health system] in [Central California] so it’s been a little tough trying to get things situated for him, because I don’t want it to get too far out because my dad’s dad had Alzheimer’s… We don’t want it to get to that severity where, you know, he doesn’t know where he’s at and he can get lost. We don’t want it to get to that level.

One of the key informants, Dina, a social worker at a senior day care center, confirmed the caregivers’ experiences, noting that many caregivers she met in support groups had family members who haven’t specifically been diagnosed with Alzheimer’s disease. A lot of doctors are , you know , resistant to doing that.

Dina: A lot of people come in and they’ve been seeing their primary care physician, and that could be someone they’ve been seen for 10, 15, 20, 30 years. And they trust them, but they’re not dementia savvy. And so a lot of them will say, Oh, this is just normal aging, or, Oh, they’re getting a little forgetful. And it takes them, the family members coming to the support group sometimes and sharing what’s going on, and the other members, as well as me telling them, You really need to ask for a referral to see a neurologist, to get some more, there’s some more going on than just, you know, normal age-related memory loss.

Julia, our second key informant, also described how clinicians working in smaller clinics or practices outside of large health systems weren’t as knowledgeable about dementia, making it difficult for family members to obtain a diagnosis. She described how the Latino caregivers she encountered often got little information about what to expect regarding the stages of dementia.

Julia: … the doctors in big hospitals, they know more or less how to find out that the patient is coming up with Alzheimer’s because they have more experience and, and they’ve been around more people. But, you know, the doctors in the small clinics, they don’t know much about Alzheimer’s.

She described how even when she advised Latino caregivers to advocate for their family members in these smaller practices, the clinicians were uncomfortable or upset about being questioned, particularly around the diagnosis of dementia or about prescribing medications such as cholinesterase inhibitors, thought to slow the progression of some dementia-related symptoms. She described how some doctors serving Latinos were not used to empowered patients or caregivers who asked a lot of questions:

Julia: And sometimes when the family knows… and I tell ‘em, You know what? She’s becoming very forgetful. Talk to the doctor and see if she can get some medication. Sometimes they even say that the doctors start laughing at that them. “Oh, so now you’re the doctor? So now you know what to prescribe to your mom or to your dad?”

Several caregivers said that they were concerned they did not have information about the progression of dementia and did not know what to expect. Clara described how she was worried her grandmother’s geriatrician may have been wary of preparing her for difficult days ahead, which she understood, but wished she understood what to expect:

Interviewer: Have you had conversations about either your grandma’s current behavior or what to expect with [the geriatrician] or anybody else? Clara: No. [the geriatrician] just said that, you know, yes, she has dementia, but since my grandma really enjoyed, doing puzzles and being outside that she doesn’t think my grandmother will become that bad. She thinks that, you know, the forgetting things that’s, mixing up her days, the way she does, she said that that, that, that’s gonna be normal. But because my grandmother likes to do things a lot that perhaps we might not be there. But she might be sugarcoating it, I don’t know, not to freak us out, you know?

Receiving medications for behavioral symptoms from clinicians, but little guidance on non-pharmacological therapies

Discussions with clinicians around behavioral and psychiatric symptoms were primarily centered on medication management. Several caregivers noted that their clinicians recommended medications for behavioral symptoms, including anti-depressants, benzodiazepines, and antipsychotics but offered few resources outside of medications. Maria explained that she had recently begun taking benzodiazepines prescribed to her by her doctor for anxiety and that she had given her husband a few pills to calm down his anxiety. When she found that they calmed him down, she talked to his doctor, who then gave him his own prescription, but soon had to add another medication to help with his anxiety:

Maria: I gave him one of my pills and I saw that he calmed down a bit and it helped him. And I made an appointment with his doctor and I told him and he said, Okay, let’s try them. He prescribed them to him and I have been giving them to him. But last year, even those weren’t working. So, that’s when I told all of these things to the doctor. I told her about his entire situation with memory and the stories that he would tell me over and over again… So, all of these things worried me and I told the doctor about them. So, I told her that the pills were not working anymore. So, she gave me some pills to help with his anxiety. So, I asked if I should take him off the other pills and she said, No, give him both. And then she prescribed some sleeping pills. So, that’s how we’re doing with that situation. But there are times when not even those pills work because he feels desperate, anxious, and restless.

Diego had a similar experience, where a physician prescribed quetiapine, an antipsychotic, for his grandmother’s sleeping issues and aggression but did not provide him with additional information on how to manage his grandmother’s behavioral symptoms. He found the process of managing his grandmother’s healthcare overwhelming and noted that it was difficult to absorb the information from his grandmother’s doctors. Likewise, Soledad described that she had received little guidance from her father’s physicians on how to manage her father’s anxiety and confusion and instead she and her family relied on their own approach for managing his symptoms.

Interviewer: Have any doctors or friends or family recommended any particular strategies that help when he gets like, with the questions, for example? Soledad: Not really. No, hmmm, let’s see… Yeah, no. We just pretty much treat him as a kid, I mean, that’s we just have to pretty much think like you’re teaching a young child. In many occasions, we have to put our mindset that he’s at that level where we have to be extra careful and cautious of how we say things and just mild with a lot of things that we say to him.

Adriana, 52, who at the time of the interview was caring for her mother, described how her mother often got confused, for example, forgetting when she had already taken her medicine. Although she described that her mother’s physician was very attentive to caring for a variety of conditions, Adriana noted that she had not received any education on how to manage her mother’s confusion or other dementia-related behavioral symptoms.

Caregiver advocates confirmed these experiences. Dina, the social worker, described that in her experience, clinicians had little training or knowledge about how to help caregivers with behavioral symptoms and focused primarily on managing these symptoms with medications.

Dina: I think very, very few of them give alternative means of talk about managing behaviors. Usually they say send them to an adult daycare facility or place them. Um, a lot of doctors will say, well, if you can’t manage it, you know, maybe you should just pay for care or get a care, you know, get a caregiver in the home, that kind of thing. They don’t really go into educating the caregiver on how to manage behaviors. So, with the medication, they’ll talk to them about what the medication will do.

Julia, the activities coordinator at the adult day care center, noted that she spent a lot of time guiding family members about how to manage behavioral symptoms of dementia because she felt these were often unaddressed in the medical setting. She described coaching family members on how to manage wandering, hallucinations, and aggression, using strategies such as going with the flow, while avoiding arguing or telling the person living with dementia that they are going crazy.

Receiving little information about community-based resources from clinicians

Caregivers also mentioned that they often received few resources for caregiver support or training, for example information about feeding persons with advanced dementia. When asked whether the health system or physicians in the U.S. had given them resources on dementia care, Soledad explained:

Not really. We have doctors that have been suggested to us in Mexico, because my grandma currently has dementia. My mother’s mom has currently dementia and then my dad’s dad had Alzheimer’s, so we do have the resources to go to doctors in Mexico. My parents do travel two times a year, and they stay out there for a couple months. Other than that, no.

When resources were provided, Roberto, 30, who was caring for his mother, noted that it was a general sheet of resources and did not offer culturally or linguistically tailored community organizations or information. Roberto described how he had found an organization that provided culturally tailored caregiver support and had found it to be very helpful in providing him with education on how to manage the symptoms of dementia, but that he had had to find it on his own.

Interviewer: How did you get connected with the [organization] caregiver program? Roberto: I searched for a caregiver support group or I looked for a caregiving or maybe an adult day care center or similar, social service center that was Latino or something and I think that’s how I found the [organization] caregiver group…. Interviewer: And so some of the physicians that your mom sees, had they ever mentioned the existence of these kinds of groups before? Roberto: No.

Paulina, 65, noted that in her experience, physicians in the dementia specialty center where her father was receiving care spent a lot more time measuring her father’s dementia progression and little time explaining how to actually manage the behavioral symptoms associated with dementia. She expressed her frustration with their focus on the assessments rather than more tailored information about resources that would be helpful for her father:

Paulina: The most that my dad’s doctor did was give them a list of resources. That’s the most that she did. The Alzheimer program is much the same way. I mean, the assessment was, oh my God this oh, incredibly long, Count backwards from 98 to one. I’m going to give you five words and in a few minutes I’m going to ask you to remember them. I mean, it’s pretty useless doing that every time and realizing that of course the person is getting worse. Of course the person is going downhill. A list of resources is … We had already found out about the daycare long before because I think the [city] prides itself in giving opportunities for everyone.

Finding guidance through community organizations

Role of community-based resources in supporting latino caregivers with dementia-related behaviors.

Caregivers turned to other trusted sources of information for resources, including non-profit senior community centers and adult day care centers. For instance, Clara noted that she appreciated the emails and letters from the adult day care center her grandmother attended, which provided information and resources about dementia. The adult day care center staff also called her with updates about her grandmother and how to manage new symptoms.

Clara: [The senior day care center] does a really good job of sending out emails and little letters in case someone needs support. And thankfully, I haven’t had the need to or or felt like I really, really needed support. I’ve been doing pretty well with her. But I do feel like if there was that case, I could always talk to them, and the best part about it is that they’ve given me their cell phone numbers. So, you know, I can even call them and just say, Hey, you know, she did this, you know?

Paulina and Diego both noted that the senior community center their family member attended became a lifeline. Paulina described that the community center provided both culturally competent subsidized care for her father and a resource for her and her mother in terms of helping them cope with dementia.

Paulina: It became very clear to us that [the senior community organization] was the most important thing in his life…. [the Latino caregiver services staff member] would tell me too, Oh, your dad was especially confused today. Just wanted to let you know. Your dad did this today. He didn’t want to play dominoes with us. He didn’t even want me to help him. They knew of his gradual decline as well, because they would see him. The [center director] is always available to me. [The center director] always knew that she could call me. And then [the Latino caregiver services staff member] gave me her cell phone number.

Dina, the social worker, described how some physicians who were knowledgeable about community-based resources were able to refer family members struggling with behavioral issues to support groups, where they often received guidance both from support group staff and from people who were caring for persons living with advanced dementia.

Dina: And so a lot of reasons why they come into caregiver support group, is– I would say the majority of people came because either their physician – good physicians, right -- or their family members, like their adult children or friends or siblings, or, you know, family members have strongly suggested they go to care group a support group because they are seeing that they’re not handling the behaviors very well. And so they’re seeing that they’re getting frustrated and not accepting the reality of where their loved one is at, and really trying to kind of, um, push them.

Using creative strategies to manage and minimize behavioral symptoms, but struggling with how to manage trauma-related symptoms

Caregivers in our sample described that in the absence of much guidance from the healthcare system, they experimented with many different types of activities in order to reduce anxiety, depression, and agitation in their family member. Caregivers also reported how difficult experiences and trauma in their family members’ lives made them anxious or depressed, which was challenging for caregivers.

Creating activities and strategies independently to manage behavioral symptoms of dementia

Caregivers reported myriad behavioral symptoms in their family member with dementia, including disorientation, aggression, hallucinations, agitation, problems with sleep, confusion, and memory loss. Caregivers noted that they independently devised and tried a variety of creative ideas to reduce agitation and improve mental engagement, such as playing their family member’s favorite music, serving their family member their favorite foods from their home country, initiating games of dominoes or bingo, offering coloring books and puzzles, offering children’s books, and connecting their family member to other relatives on the phone.

Maria: Oh, yes, I play music for him. I do that. And he does become more relaxed with music. One of his daughters bought a record player to play the records he likes there. He plays records there. Or I play music for him on my phone. He likes listening to the radio.

Nearly all caregivers noted that they used strategies often used with children, such as using simple language when explaining things and using time outs when the person with dementia was feeling agitated or upset.

Clara: She is an adult, but I also feel that her brain is becoming back like a child. So, sometimes you need to put them on a timeout. So I tell her, You know what? I see that you’re very sad. I think… Or I see that you’re very upset, you know? Whatever the emotional issue is, I’ll tell her, Take some time out, go to your room and just relax, just relax. And when you’re ready to come back out, you know, then we can talk about it, you know, because it’s not good to, to talk about things when you’re emotional. You know, and then she’ll go to the room, and she’ll sit there, and I’ll tell her to do some coloring to get her mind off of it.

Finding it challenging to help family members with dementia address experiences of trauma earlier in life

Multiple caregivers spoke about their family member’s experiences with trauma earlier in life, often due to poverty or political strife, and how it affected their family member’s mental health. Caregivers found it challenging to help their family members manage symptoms related to anxiety and depression related to their family members’ traumatic experiences. Clara described how her grandmother in El Salvador witnessed traumatic events, such as seeing her husband and son killed in front of her eyes. She found it challenging to know how to respond when she found her grandmother crying at night due to these painful memories.

Clara: I have noticed that at times, at night, … sometimes I’ll see her cry at night. And, and I’ll say, Hey, what’s wrong, you know? And then she’ll say, Oh, I’m just thinking about how old my son would be or, or where we would be right now with my husband? And, you know, she never remarried. Um, and so I think that, that affects her.

Maria also noted that her husband spent a lot of time talking about his difficult childhood, making it challenging for her to soothe his anxiety and distress. She didn’t know how to respond to his sadness and anxiety around this trauma, which caused her much distress.

Maria: And since he had a lot of problems with his father during his childhood, he’s carrying all of those issues. He’s repeated that to me many times and he still repeats it a lot. There were beatings and also financial struggles. So, they went hungry. So, he tells me all of those things. And he tells me a lot about an uncle that helped him a lot and he passed a while back. I tell him, ‘That’s good. That means that your father was really this man, your uncle. It’s like he’s not really gone because he’s on your mind. That’s good, that you remember.’ So, he talks and talks and all of that.

In this exploratory qualitative study of eight Latino caregivers and two key informants who work closely with caregivers, we identified three main categories describing approaches to managing behavior related to dementia symptoms and interacting with the healthcare system: caregivers (1) often face shortcomings with dementia care in the medical system, encountering delays to diagnosis, barriers in accessing neurologists and other specialists, and clinicians who dismiss symptoms of dementia as old age or who bristle at being questioned; (2) find resources and support from community based organizations, but receive little information from healthcare providers about these organizations; and (3) independently formulate creative strategies to manage behavioral symptoms in the absence of guidance, but find it challenging to manage symptoms associated with trauma. Although caregivers in our sample had different backgrounds and experiences, we found several commonalities with regards to their experiences caring for a family member with dementia. We found that regardless of knowledge or prior exposure to dementia, all caregivers in our sample wanted better access to resources to help them as caregivers. Our findings are consistent with literature that Latino caregivers are eager to learn more about dementia care and are aware of the importance of increasing their level of knowledge about the conditions [ 27 , 28 , 29 , 30 ].

We found that caregivers overall felt unprepared for managing their family member’s dementia diagnosis, even among caregivers with high levels of health literacy. This echoes other studies findings that many families feel ill-equipped to manage such a complex progressive diagnosis [ 28 , 30 ]. Other research finds that even when family members are aware of symptoms and have some familiarity with dementia, they do not always feel adequately equipped with how to address challenging situations, such as changes in the patient’s sleep or increasing levels of anxiety [ 31 ]. Moreover, many behavioral symptoms of dementia may be related to an inability to express unmet needs, such as hunger, thirst, loneliness/social isolation, boredom, and lack of physical activity [ 4 ]. Pain is also commonly the underlying cause of behavioral symptoms associated with dementia, particularly among persons with more severe cognitive impairment [ 32 , 33 ]. Caregivers may not be aware of how to identify these unmet needs or how to respond to challenges surrounding eating and drinking in the later stages of dementia [ 34 ].

Complicating caregivers’ experiences with dementia care is the fact that many primary care clinicians are not comfortable or trained in how to diagnose or manage individuals with dementia [ 35 , 36 ]. Several caregivers in our sample had a difficult time obtaining a diagnosis and found that clinicians dismissed their family members’ symptoms as old age, findings which other qualitative studies of caregiving (not limited to Latinos) have confirmed as well [ 27 , 28 ]. Our findings echo a 2019 Alzheimer’s Disease International report which surveyed 70,000 respondents across 155 countries that found that 62% of healthcare practitioners worldwide still perceive that dementia is a normal part of aging, which results in significant barriers to the appropriate diagnosis, treatment and care for persons living with dementia and their caregivers [ 37 ]. Moreover, prior research finds that primary care providers report limited time to address the complex management of dementia or have little knowledge about the dementia diagnostic process [ 38 , 39 ], and that caregivers report receiving inadequate support from their providers in managing dementia-related problems [ 34 , 40 ]. Moreover, primary care providers report having little connection to social services, community organizations, or interdisciplinary teams which could assist caregivers with dementia management [ 38 , 41 ]. These factors can make for unsatisfactory encounters between persons with dementia, caregivers, and clinicians, and can result in caregivers feeling underprepared and dissatisfied with how the medical system manages dementia. Future research should examine how to design better care experiences for persons with dementia and their families within the current medical system.

Our findings shed light on some of the challenges faced by Latino caregivers as they look to clinicians for assistance on managing behavioral symptoms of dementia. When asked about conversations with clinicians to manage dementia-related behavioral symptoms, caregivers in our sample often brought up discussions with clinicians about the use of medications to treat sleeping problems, anxiety, depression, and agitation. One reason for prioritizing medications over non-pharmacological therapies may be the medical system’s approach to health as informed by a cure model, where a biomedical approach is prioritized over a psychosocial approach (i.e., the care model) [ 42 , 43 , 44 ]. Even as some primary care providers are aware of the limits of the biomedical approach when it comes to dementia care, research has found they feel frustrated with the fact that there is little that medicine can do to alter the progression of the disease [ 39 ]. As a result, one study found that primary care physicians still regularly prescribed medications for dementia – even when they found them to be lacking in effectiveness – because they wanted to help patients and their families in some way [ 39 ]. Clinicians may perceive that medications are some of the few tools they are able to offer families struggling with managing difficult behavior symptoms. Additionally, health insurance covers medications, but does not routinely cover caregiver support. Training clinicians in how to offer tangible strategies for managing behavioral symptoms may provide primary care providers with additional tools they can offer families. However, offering such support can be challenging during a 10 to 15-minute primary care visit. Connecting caregivers to community organizations may be able to fill in gaps which primary care providers are not currently able to support.

Indeed, we found that caregivers in our sample found a great deal of support through community-based organizations and also their own families and solutions. Several interventions have been developed specifically tailored for Latino older adults living with dementia and their caregivers, including radio-based support groups [ 45 ], bilingual educational websites [ 46 ], telephone-based support groups [ 47 ], promotora- based community engagement [ 48 ], and culturally and linguistically tailored programs [ 49 , 50 , 51 ]. However, as we found in our study, linking caregivers to these types of programs and resources remains a challenge, as many health system-based clinicians and social workers may not have knowledge or updated lists of culturally and linguistically appropriate services. One promising intervention is the Care Ecosystem Model, a model which connects family caregivers with care navigators [ 52 , 53 ]. This model has been found to improve the quality of life in persons with dementia and decrease caregiver depression and burden [ 52 ]. Tailoring and disseminating the model to communities which serve a large proportion of Latinos has the potential to provide to substantial support to many caregivers.

Despite little guidance from medical professionals, caregivers in our sample found creative ways to engage their family members in meaningful and pleasurable activities such as playing music, offering coloring books and puzzles, or caring for pets. These meaningful activities may play an important role that goes beyond enjoyment: Nyman and Szymczynska found that these activities can meet fundamental psychological needs [ 54 ]. For example, these activities may give individuals a sense of control, address the need to be creative, and strengthen relationships and social connectedness [ 54 , 55 ]. Engaging persons with dementia in meaningful activities can also be critical for caregivers. An ethnographic study using interviews and participant observation found that when caregivers discontinue activities meaningful to persons living with dementia, caregiver burden increases substantially [ 56 ]. However, caregivers can adapt or replace activities as the dementia progresses, if provided the right training and social support. Supporting caregivers in adapting activities to changing barriers, such as the development of vision and hearing loss, as reported by several caregivers in our sample, is critical to both the progression of cognitive decline and caregiver health. Epidemiological studies have found that untreated vision and hearing loss can increase the risk of cognitive decline and dementia and accelerate the progression among those already living with dementia [ 57 , 58 , 59 ]. This research points to an even greater need to support caregivers who are caring for older adults with vision and hearing loss as well as dementia and associated cognitive decline.

One striking finding was the high prevalence of trauma in early life among the Latinos living with dementia in our sample. Some studies have found an association between experiencing several adverse childhood experiences such as parental death, family violence, physical or psychological abuse and dementia [ 60 ], and others have found a bidirectional relationship between post-traumatic stress disorder (PTSD) and dementia, where PTSD may increase the risk of dementia and the onset of dementia can increase the risk of delayed PTSD [ 61 ]. Persons living with dementia may experience traumatic flashbacks [ 62 ], which can be alarming for the person living with dementia and their caregiver. Symptoms of PTSD may be confused for behavioral symptoms of dementia [ 63 ]. However, caregivers and clinical staff made aware of the person’s past and potential triggers for the PTSD can employ strategies to reduce stress and agitation among persons living with dementia who have experienced traumatic events. A study of nursing assistants’ experiences caring for older people with dementia who experienced Holocaust trauma found that understanding the person’s life story enabled adjustments in care and gave the nursing assistants greater empathy and patience in caring for the person with dementia [ 64 ]. Training caregivers in how to manage PTSD in family members with dementia who have experienced traumatic events may reduce the use of psychoactive medications and improve caregiver burden.

There are several limitations in our study. First, Latinos as a group are extremely heterogenous and Latino ethnicity encompasses individuals from numerous countries and backgrounds. Additionally, many of the issues we identified are likely not unique to Latinos. Moreover, U.S. Latinos’ experiences may be largely shaped by the areas where they are living. Our findings are thus more generalizable to Latinos living in the Southern California area, where the majority of our sample was from. We also had a small sample size. However, despite this small sample, we found similar experiences among caregivers in our sample, and these experiences have been echoed in other qualitative studies of Latino caregivers of Latino older adults living with dementia. Moreover, several studies have found that 10 interviews typically produce the majority of salient themes in interview-based analyses [ 65 , 66 , 67 ]. Future research should examine similar questions with a larger sample or with Latinos in different regions of the country.

In conclusion, in this exploratory study of Latino caregivers’ experiences managing behavioral symptoms of dementia, we found that caregivers struggled with their family members’ dementia-related behavioral symptoms, including aggression, anxiety, depression, and sleeping difficulties. Caregivers also reported that clinicians often offered medications for behavioral symptoms. Caregivers found a great deal of support in community-based organizations, including senior day care centers, caregiver support groups, and intergenerational community centers. In-depth interviews with this small sample suggest that the healthcare system is failing to provide care for behavioral symptoms from dementia so that caregivers of Latino older adults rely on community organizations instead.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to their identifiable nature but are available from the corresponding author on reasonable request.

Hummer RA, Hayward MD. Hispanic Older Adult Health & Longevity in the United States: current patterns & concerns for the future. Daedalus. 2015;144(2):20–30.

Article   PubMed   PubMed Central   Google Scholar  

Plassman BL, Langa KM, Fisher GG, Heeringa SG, Weir DR, Ofstedal MB, et al. Prevalence of dementia in the United States: the aging, demographics, and memory study. Neuroepidemiology. 2007;29(1–2):125–32.

Article   PubMed   PubMed Central   CAS   Google Scholar  

Hersch EC, Falzgraf S. Management of the behavioral and psychological symptoms of dementia. Clin Interv Aging. 2007;2(4):611.

PubMed   PubMed Central   Google Scholar  

Cohen-Mansfield J, Dakheel-Ali M, Marx MS, Thein K, Regier NG. Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Res. 2015;228(1):59–64.

Aging NHC. 2017 Status of Hispanic Older Adults: Insights from the field – Caregivers Edition. Washington, D.C.; 2017 2017.

Haan MN, Mungas DM, Gonzalez HM, Ortiz TA, Acharya A, Jagust WJ. Prevalence of dementia in older latinos: the influence of type 2 diabetes Mellitus, Stroke and genetic factors. J Am Geriatr Soc. 2003;51(2):169–77.

Article   PubMed   Google Scholar  

Hazzouri AZA, Haan MN, Neuhaus JM, Pletcher M, Peralta CA, López L et al. Cardiovascular Risk score, cognitive decline, and dementia in older Mexican americans: the role of sex and education. J Am Heart Association.2(2):e004978.

Rodriquez EJ, Livaudais-Toman J, Gregorich SE, Jackson JS, Nápoles AM, Pérez-Stable EJ. Relationships between allostatic load, unhealthy behaviors, and depressive disorder in U.S. adults, 2005–2012 NHANES. Prev Med. 2018;110:9–15.

Katon W, Pedersen HS, Ribe AR, Fenger-Grøn M, Davydow D, Waldorff FB, et al. Effect of Depression and Diabetes Mellitus on the risk for dementia: a National Population-based Cohort Study. JAMA Psychiatry. 2015;72(6):612–9.

Clark CM, DeCarli C, Mungas D, Chui HI, Higdon R, Nuñez J, et al. Earlier onset of Alzheimer Disease symptoms in latino individuals compared with anglo individuals. Arch Neurol. 2005;62(5):774–8.

Sink KM, Covinsky KE, Newcomer R, Yaffe K. Ethnic differences in the prevalence and pattern of dementia-related behaviors. J Am Geriatr Soc. 2004;52(8):1277–83.

American Geriatrics Society. Don’t use antipsychotics as the first choice to treat behavioral and psychological symptoms of dementia. Philadelphia, PA: ABIM Foundation. 2015 [ http://www.choosingwisely.org/clinician-lists/american-geriatrics-society-antipsychotics-for-dementia/

Banerjee S. The use of antipsychotic medication for people with dementia: Time for action. London, England; 2009 October 3, 2009.

By the American Geriatrics Society Beers Criteria ® Update Expert P. American Geriatrics Society. 2019 updated AGS Beers Criteria ® for potentially inappropriate medication use in older adults. J Am Geriatr Soc. 2019;67(4):674–94.

Article   Google Scholar  

ABIM Foundation. Choosing Wisely: Treating Disruptive Behavior in People with Dementia 2017 [ https://www.choosingwisely.org/patient-resources/antipsychotic-drugs-for-people-with-dementia/

Gitlin LN, Kales HC, Lyketsos CG. Nonpharmacologic management of behavioral symptoms in dementia. JAMA. 2012;308(19):2020–9.

Maust DT, Strominger J, Bynum JPW, Langa KM, Gerlach LB, Zivin K, et al. Prevalence of psychotropic and opioid prescription fills among Community-Dwelling older adults with dementia in the US. JAMA. 2020;324(7):706–8.

Xiong GL, Filshtein T, Beckett LA, Hinton L. Antipsychotic use in a Diverse Population with Dementia: a retrospective review of the National Alzheimer’s Coordinating Center Database. J Neuropsychiatry Clin Neurosci. 2015;27(4):326–32.

Centers for Disease Control and Prevention. What Is Health Literacy? 2021 [updated May 19, 2021. https://www.cdc.gov/healthliteracy/learn/index.html

Charmaz K. Constructing grounded theory: A practical guide through qualitative analysis. Second edition. Thousand Oaks, CA: Sage; 2014 2014.

Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: Sage; 2006. 2006//.

Google Scholar  

Gibbs GR. Thematic coding and categorizing. Analyzing Qualitative data. 2007;703:38–56.

Saldana J. The Coding Manual for qualitative researchers. London, UK: Sage Publications, Inc.; 2009.

Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. Sage; 2014.

Corbin J, Strauss AC. Basics of qualitative research: techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage Publications, Inc.; 2008. 2008//.

Book   Google Scholar  

Birks M, Chapman Y, Francis K. Memoing in qualitative research: probing data and processes. J Res Nurs. 2008;13(1):68–75.

Borrayo EA, Goldwaser G, Vacha-Haase T, Hepburn KW. An inquiry into latino caregivers’ experience caring for older adults with Alzheimer’s disease and related dementias. J Appl Gerontol. 2007;26(5):486–505.

Neary SR, Mahoney DF. Dementia caregiving: the experiences of Hispanic/Latino caregivers. J Transcult Nurs. 2005;16(2):163–70.

Gelman CR. La Lucha: the experiences of latino family caregivers of patients with Alzheimer’s disease. Clin Gerontologist. 2010;33(3):181–93.

Turner RM, Hinton L, Gallagher-Thompson D, Tzuang M, Tran C, Valle R. Using an Emic Lens to understand how latino families cope with dementia behavioral problems. Am J Alzheimer’s Disease Other Dementias ® . 2015;30(5):454–62.

Iribarren S, Stonbraker S, Suero-Tejeda N, Granja M, Luchsinger JA, Mittelman M, et al. Information, communication, and online tool needs of hispanic family caregivers of individuals with Alzheimer’s disease and related dementias. Inf Health Soc Care. 2019;44(2):115–34.

Achterberg WP, Pieper MJC, van Dalen-Kok AH, De Waal MWM, Husebo BS, Lautenbacher S et al. Pain management in patients with dementia. Clin Interv Aging. 2013:1471–82.

Hodgson N, Gitlin LN, Winter L, Hauck WW. Caregiver’s perceptions of the Relationship of Pain to behavioral and Psychiatric symptoms in Older Community-residing adults with dementia. Clin J Pain. 2014;30(5).

Barrado-Martín Y, Nair P, Anantapong K, Aker N, Moore KJ, Smith CH, et al. Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life. Health Soc Care Commun. 2022;30(1):307–18.

Valcour VG, Masaki KH, Curb JD, Blanchette PL. The detection of Dementia in the primary care setting. Arch Intern Med. 2000;160(19):2964–8.

Article   PubMed   CAS   Google Scholar  

Foley T, Boyle S, Jennings A, Smithson WH. We’re certainly not in our comfort zone: a qualitative study of GPs’ dementia-care educational needs. BMC Fam Pract. 2017;18(1):1–10.

Alzheimer’s Disease International. World Alzheimer Report 2019: attitudes to dementia London. England: Alzheimer’s Disease International (ADI); 2019.

Hinton L, Franz CE, Reddy G, Flores Y, Kravitz RL, Barker JC. Practice constraints, behavioral problems, and dementia care: primary care physicians’ perspectives. J Gen Intern Med. 2007;22(11):1487–92.

Apesoa-Varano EC, Barker JC, Hinton L. Curing and caring: the work of primary care physicians with dementia patients. Qual Health Res. 2011;21(11):1469–83.

Jennings LA, Reuben DB, Evertson LC, Serrano KS, Ercoli L, Grill J, et al. Unmet needs of caregivers of individuals referred to a Dementia Care Program. J Am Geriatr Soc. 2015;63(2):282–9.

Kadu MK, Stolee P. Facilitators and barriers of implementing the chronic care model in primary care: a systematic review. BMC Fam Pract. 2015;16(1):12.

Baumann AO, Deber RB, Silverman BE, Mallette CM. Who cares? Who cures? The ongoing debate in the provision of health care. J Adv Nurs. 1998;28(5):1040–5.

De Valck C, Bensing J, Bruynooghe R, Batenburg V. Cure-oriented versus care-oriented attitudes in medicine. Patient Educ Couns. 2001;45(2):119–26.

Choudhury D, Nortjé N. The hidden curriculum and integrating cure- and care-based approaches to Medicine. HEC Forum; 2020.

Reynoso-Vallejo H. Support group for latino caregivers of dementia elders: Cultural humility and cultural competence. Ageing Int. 2009;34(1):67–78.

Weitzman P, Neal L, Chen H, Levkoff SE. Designing a culturally attuned bilingual educational website for US latino dementia caregivers. Ageing Int. 2008;32(1):15–24.

Bank AL, Argüelles S, Rubert M, Eisdorfer C, Czaja SJ. The value of telephone support groups among ethnically diverse caregivers of persons with dementia. Gerontologist. 2006;46(1):134–8.

Askari N, Bilbrey AC, Garcia Ruiz I, Humber MB, Gallagher-Thompson D. Dementia awareness campaign in the latino community: a novel community engagement pilot training program with promotoras. Clin Gerontologist. 2018;41(3):200–8.

Aranda MP, Villa VM, Trejo L, Ramírez R, Ranney M. El Portal latino Alzheimer’s project: model program for latino caregivers of people with Alzheimer’s disease. Soc Work. 2003;48(2):259–71.

Llanque SM, Enriquez M. Interventions for hispanic caregivers of patients with dementia: a review of the literature. Am J Alzheimer’s Disease Other Dementias ® . 2012;27(1):23–32.

Perales J, Moore WT, Fernandez C, Chavez D, Ramirez M, Johnson D, et al. Feasibility of an Alzheimer’s disease knowledge intervention in the latino community. Ethn Health. 2020;25(5):747–58.

Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, et al. Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the care ecosystem randomized clinical trial. JAMA Intern Med. 2019;179(12):1658–67.

Possin KL, Merrilees J, Bonasera SJ, Bernstein A, Chiong W, Lee K, et al. Development of an adaptive, personalized, and scalable dementia care program: early findings from the Care Ecosystem. PLoS Med. 2017;14(3):e1002260.

Nyman SR, Szymczynska P. Meaningful activities for improving the wellbeing of people with dementia: beyond mere pleasure to meeting fundamental psychological needs. Perspect Public Health. 2016;136(2):99–107.

Roland KP, Chappell NL. Meaningful activity for persons with dementia: family caregiver perspectives. Am J Alzheimer’s Disease Other Dementias ® . 2015;30(6):559–68.

Allison TA, Gubner JM, Oh A, Harrison KL, Pham K, Barnes DE et al. Meaningful activities and sources of meaning for Community-Dwelling people living with dementia. J Am Med Dir Assoc. 2021.

Varadaraj V, Munoz B, Deal JA, An Y, Albert MS, Resnick SM, et al. Association of Vision Impairment with Cognitive Decline across Multiple Domains in older adults. JAMA Netw Open. 2021;4(7):e2117416–e.

Lin FR, Metter EJ, O’Brien RJ, Resnick SM, Zonderman AB, Ferrucci L. Hearing loss and Incident Dementia. Arch Neurol. 2011;68(2):214–20.

Thomson RS, Auduong P, Miller AT, Gurgel RK. Hearing loss as a risk factor for dementia: a systematic review. Laryngoscope Invest Otolaryngol. 2017;2(2):69–79.

Tani Y, Fujiwara T, Kondo K. Association between adverse childhood experiences and dementia in older Japanese adults. JAMA Netw Open. 2020;3(2):e1920740–e.

Desmarais P, Weidman D, Wassef A, Bruneau M-A, Friedland J, Bajsarowicz P, et al. The interplay between post-traumatic stress disorder and dementia: a systematic review. Am J Geriatric Psychiatry. 2020;28(1):48–60.

Dallam DL, Mellman TA, Bhatnagar A, Nguyen S, Kurukumbi M. Trauma reenactments in aging veterans with dementia. J Am Geriatr Soc. 2011;59(4):766–8.

Martinez-Clavera C, James S, Bowditch E, Kuruvilla T. Delayed-onset post-traumatic stress disorder symptoms in dementia. Progress Neurol Psychiatry. 2017;21(3):26–31.

Craftman ÅG, Swall A, Båkman K, Grundberg Å, Hagelin CL. Caring for older people with dementia reliving past trauma. Nurs Ethics. 2019;27(2):621–33.

Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.

Namey E, Guest G, McKenna K, Chen M. Evaluating bang for the buck: a cost-effectiveness comparison between individual interviews and focus groups based on thematic saturation levels. Am J Evaluation. 2016;37(3):425–40.

Guest G, Namey E, Chen M. A simple method to assess and report thematic saturation in qualitative research. PLoS ONE. 2020;15(5):e0232076.

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This work was supported by the National Institute on Aging: U.S. Deprescribing Research Network 2R24AG064025, UCLA Resource Centers for Minority Aging Research IV/Center for Health Improvement of Minority Elderly IIl (RCMAR IV/CHIME IIl) P30AG021684, Midcareer Award in Patient-Oriented Research in Aging 1K24AG047899-06. It was also supported by the National Center for Advancing Translational Sciences: UCLA Clinical and Translational Science Institute (CTSI) ULT1TR001881.

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MSK conceived of the study, received funding for the study, led the data collection and analysis, and led the manuscript writing. NG, JAG, and SGM assisted with the data collection, analysis, and manuscript writing. AMM, CR, and CS assisted with the study design, analysis, manuscript writing and editing.

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Keller, M.S., Guevara, N., Guerrero, JA. et al. Experiences managing behavioral symptoms among Latino caregivers of Latino older adults with dementia and memory problems: a qualitative study. BMC Geriatr 24 , 725 (2024). https://doi.org/10.1186/s12877-024-05323-4

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Received : 13 February 2024

Accepted : 22 August 2024

Published : 31 August 2024

DOI : https://doi.org/10.1186/s12877-024-05323-4

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Doing Qualitative Research 6th Edition, Kindle Edition

Need practical advice on how to do your first qualitative research project? This book will guide you through each step of the research process: from brainstorming ideas and working with your supervisor to navigating the field to writing up your results. Driven by examples from other students’ projects, the book features discussions on translating social problems into research topics, collecting data in the wake of a pandemic, and guidance from Qualitative Data Analysis Software expert Christian Schmieder to help you summarise, categorise, and review qualitative data. A new chapter on how much data you need answers the age-old question: ‘how many interviews or case studies are enough?’

It also includes: - Articles and websites to build your bibliography - Questions to test your knowledge - Videos from world-leading qualitative experts - Activities to dig deeper into key concepts and think critically about research - Lessons-learned discussions with other researchers - Exercises to help you choose the right path for your project.   Key features: in addition to the online Silverman Workshops, the book includes top tips, end-of-chapter checklists to test your understanding, and annotated further reading so you can develop your knowledge further.

• ISBN-13 978-1529769005
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• Sticky notes On Kindle Scribe
• Publisher SAGE Publications Ltd
• Publication date November 17, 2021
• Language English
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About the author.

David Silverman trained as a sociologist at the London School of Economics and the University of California, Los Angeles. He taught for 32 years at Goldsmiths, University of London, where he is now Emeritus Professor in the Sociology Department as well as Visiting Professor in the Business Schools, King’s College, London, Leeds University and University of Technology Sydney and Adjunct Professor, Faculty of Education, Queensland University of Technology. He is interested in conversation and discourse analysis and he has researched medical consultations, shelters for homeless people and HIV-test counselling. He is the author of Doing Qualitative Research (sixth edition, 2022) and A Very Short, Fairly Interesting, Reasonably Cheap Book about Qualitative Research (second edition, 2013c). He is the editor of Qualitative Research (fifth edition, 2021) and the Sage series Introducing Qualitative Methods. In recent years, he has offered short, hands-on workshops in qualitative research for universities in Europe, Asia, Africa and Australia.  Now retired from full-time work, he aims to watch 100 days of county cricket a year. He also enjoys spending time with his grandchildren and great-grandsons as well as voluntary work in an old people’s home where he chats and sings with residents.

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• ASIN ‏ : ‎ B096B2B2BG
• Publisher ‏ : ‎ SAGE Publications Ltd; 6th edition (November 17, 2021)
• Publication date ‏ : ‎ November 17, 2021
• Language ‏ : ‎ English
• File size ‏ : ‎ 11448 KB
• Text-to-Speech ‏ : ‎ Enabled
• Screen Reader ‏ : ‎ Supported
• Enhanced typesetting ‏ : ‎ Enabled
• X-Ray ‏ : ‎ Not Enabled
• Word Wise ‏ : ‎ Enabled
• Sticky notes ‏ : ‎ On Kindle Scribe
• Print length ‏ : ‎ 656 pages
• Page numbers source ISBN ‏ : ‎ 1529769000
• #551 in Social Science Research
• #2,062 in Social Sciences Research

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