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  1. Article ; Online: Persons living with dementia and caregivers' communication preferences for receiving a dementia diagnosis.

    Wollney, Easton N / Bylund, Carma L / Bedenfield, Noheli / Parker, Naomi D / Rosselli, Mónica / Curiel Cid, Rosie E / Kitaigorodsky, Marcela / Armstrong, Melissa J

    PEC innovation

    2024  Volume 4, Page(s) 100253

    Abstract: Objective: As the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be ...

    Abstract Objective: As the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers.
    Methods: We conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years (
    Results: The groups' communication preferences were largely similar. Data were analyzed thematically into five themes:
    Conclusion: Participants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers.
    Innovation: Limited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.
    Language English
    Publishing date 2024-01-11
    Publishing country Netherlands
    Document type Journal Article
    ISSN 2772-6282
    ISSN (online) 2772-6282
    DOI 10.1016/j.pecinn.2024.100253
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  2. Article ; Online: Frequency of suicidal ideation and associated clinical features in Lewy body dementia.

    Armstrong, Melissa J / Moore, Kathryn / Jacobson, Charles E / Bedenfield, Noheli / Patel, Bhavana / Sullivan, Jennifer L

    Parkinsonism & related disorders

    2021  Volume 90, Page(s) 33–37

    Abstract: Introduction: Neuropsychiatric disturbance is common in individuals with Lewy body dementia (LBD). Despite this, there is minimal research regarding suicide risks in this population.: Methods: This study was a retrospective review of a prospectively- ... ...

    Abstract Introduction: Neuropsychiatric disturbance is common in individuals with Lewy body dementia (LBD). Despite this, there is minimal research regarding suicide risks in this population.
    Methods: This study was a retrospective review of a prospectively-collected database at a tertiary movement disorders clinic. Database participants with an LBD diagnosis at their most recent visit and at least one complete Beck Depression Inventory-II (BDI-II) were included. Additional measures included demographics and measures of cognition, psychiatric symptoms, motor function, and the Parkinson Disease Questionnaire-39. The frequency of suicidal ideation was assessed using question 9 of the BDI-II. Features associated with a BDI-II score greater than zero were assessed using logistic regression.
    Results: The database included 95 individuals with LBD and at least one BDI-II (visit years 2010-2020). Most participants were older men who identified as white. Eighteen individuals (18.9%; 95% CI 12.3%-28.0%) reported thoughts of killing themselves without an intent to carry them out (BDI-II = 1). No participants reported a desire or plan to kill themselves. The presence of SI was associated with measures of depression, anxiety, and emotional well-being, but not with demographics, measures of disease severity, or other psychiatric concerns.
    Conclusion: These findings emphasize the importance of routine screening for psychiatric symptoms in LBD and intervention when such concerns are identified. Interventions could include pharmacologic (e.g. depression treatment) and non-pharmacologic (e.g. firearm screening) approaches. More research is needed to assess suicidal ideation and suicide risks in large and more diverse LBD populations. Prospective studies should include measures of additional potential contributors to suicidality.
    MeSH term(s) Aged ; Databases, Factual ; Female ; Humans ; Lewy Body Disease/psychology ; Logistic Models ; Longitudinal Studies ; Male ; Prospective Studies ; Retrospective Studies ; Severity of Illness Index ; Suicidal Ideation ; Suicide/statistics & numerical data
    Language English
    Publishing date 2021-07-29
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1311489-x
    ISSN 1873-5126 ; 1353-8020
    ISSN (online) 1873-5126
    ISSN 1353-8020
    DOI 10.1016/j.parkreldis.2021.07.029
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  3. Article ; Online: Clinician approaches to communicating a dementia diagnosis: An interview study.

    Wollney, Easton N / Bylund, Carma L / Bedenfield, Noheli / Rosselli, Monica / Curiel-Cid, Rosie E / Kitaigorodsky, Marcela / Levy, Ximena / Armstrong, Melissa J

    PloS one

    2022  Volume 17, Issue 4, Page(s) e0267161

    Abstract: Background: Individuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. ... ...

    Abstract Background: Individuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter.
    Method: Investigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data.
    Results: Fifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as "memory disorder." Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education.
    Conclusions: Diverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.
    MeSH term(s) Caregivers/psychology ; Dementia/diagnosis ; Dementia/psychology ; Disclosure ; Family/psychology ; Humans ; Qualitative Research
    Language English
    Publishing date 2022-04-14
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Research Support, N.I.H., Extramural
    ZDB-ID 2267670-3
    ISSN 1932-6203 ; 1932-6203
    ISSN (online) 1932-6203
    ISSN 1932-6203
    DOI 10.1371/journal.pone.0267161
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  4. Article: Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study.

    Wollney, Easton N / Armstrong, Melissa J / Bedenfield, Noheli / Rosselli, Monica / Curiel-Cid, Rosie E / Kitaigorodsky, Marcela / Levy, Ximena / Bylund, Carma L

    Health services insights

    2022  Volume 15, Page(s) 11786329221141829

    Abstract: The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We ... ...

    Abstract The vast majority of individuals with dementia want to receive a diagnosis. Research suggests, however, that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained. We thus aimed to assess clinician-reported barriers to dementia disclosure and recommendations for giving a dementia diagnosis. To accomplish this, we performed telephone interviews with 15 clinicians from different specialties using a semi-structured interview guide. Transcripts were analyzed thematically. Clinician-reported barriers fit 3 categories: patient and caregiver-related barriers, clinician-related barriers, and barriers related to the triadic interaction. Patient and caregiver-related barriers included
    Language English
    Publishing date 2022-12-05
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2803340-1
    ISSN 1178-6329
    ISSN 1178-6329
    DOI 10.1177/11786329221141829
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  5. Article: Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.

    Armstrong, Melissa J / Bedenfield, Noheli / Rosselli, Monica / Curiel Cid, Rosie E / Kitaigorodsky, Marcela / Galvin, James E / Lachner, Christian / Grant Smith, Amanda / de Los Ángeles Ortega, María / Mohiuddin, Yasmin / Shatzer, Julie / Marasco, Deann / Willis, Dianna / Bylund, Carma L

    Neurology. Clinical practice

    2023  Volume 14, Issue 1, Page(s) e200223

    Abstract: Background and objectives: Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient ... ...

    Abstract Background and objectives: Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient and caregiver input. The objective of this study was to identify best practices for delivering a diagnosis of dementia using existing literature, involvement of diverse stakeholders, and consensus building through a formal modified Delphi approach.
    Methods: We convened a multi-stakeholder working group including a patient, caregivers, Alzheimer's Association staff, and clinicians from diverse backgrounds. The panel used the American Academy of Neurology process for recommendation development, consisting of a half-day workshop and 3 rounds of anonymous modified Delphi voting to achieve consensus.
    Results: The working group convened from May 2022 through January 2023. The group chose to focus statements on a limited number of best practices that can be applied across clinic types. Seven best practice statements achieved consensus after a maximum of 3 rounds of voting. These included the following: (1) Clinicians must show compassion and empathy when delivering a diagnosis of dementia (level A). During dementia diagnosis disclosure, clinicians should (2) ask regarding diagnosis preferences, (3) instill realistic hope, (4) provide practical strategies, (5) provide education and connections to high-quality resources, (6) connect caregivers to support resources, and (7) provide written summaries of the diagnoses, plan, and relevant resources (each level B).
    Discussion: Clinicians need to customize discussion of a dementia diagnosis for individual patients and their caregivers. These 7 best practices provide a diagnosis communication framework that can be implemented across varied clinical settings. Additional strategies, such as using optimal general communication approaches, are also important for dementia diagnosis discussions. Thoughtful application of these best practices is particularly important when caring for individuals from underrepresented communities. Further improving communication regarding dementia diagnoses will require health system changes (e.g., for sufficient time), improved access to specialty dementia care, and clinician training for delivering difficult diagnoses. More research is needed to identify culturally sensitive approaches to discussing dementia diagnoses.
    Language English
    Publishing date 2023-12-20
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2645818-4
    ISSN 2163-0933 ; 2163-0402
    ISSN (online) 2163-0933
    ISSN 2163-0402
    DOI 10.1212/CPJ.0000000000200223
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  6. Article ; Online: Research Priorities of Individuals and Caregivers With Lewy Body Dementia: A Web-based Survey.

    Holden, Samantha K / Bedenfield, Noheli / Taylor, Angela S / Bayram, Ece / Schwilk, Chris / Fleisher, Jori / Duda, John / Shill, Holly / Paulson, Henry L / Stacy, Kelly / Wood, Julia / Corsentino, Pamela / Sha, Sharon J / Litvan, Irene / Irwin, David J / Quinn, Joseph F / Goldman, Jennifer G / Amodeo, Katherine / Taylor, John-Paul /
    Boeve, Bradley F / Armstrong, Melissa J

    Alzheimer disease and associated disorders

    2023  Volume 37, Issue 1, Page(s) 50–58

    Abstract: Introduction: Lewy body dementia (LBD) is common, yet under-recognized and under-researched. To plan studies with the highest impact, engagement of the community personally affected by these conditions is essential.: Methods: A web-based survey of ... ...

    Abstract Introduction: Lewy body dementia (LBD) is common, yet under-recognized and under-researched. To plan studies with the highest impact, engagement of the community personally affected by these conditions is essential.
    Methods: A web-based survey of people living with LBD and current and former caregivers of people with LBD queried research priorities through forced ranking and exploration of burden of LBD symptoms. Specific caregiving needs in LBD and perceptions of research participation were also investigated.
    Results: Between April 7, 2021 and July 1, 2021, 984 responses were recorded. Top research priorities included disease-modifying therapies and improved disease detection and staging. People with LBD were interested in pathophysiology and more bothered by motor symptoms; caregivers were interested in risk factors and symptomatic therapies and more bothered by neuropsychiatric symptoms. Few available LBD treatments and resources were rated as helpful, and many valuable services were never received. Previous participation in LBD research was infrequent, but interest was high.
    Discussion: People with LBD and caregivers highlighted the need for research across all aspects of LBD, from pathophysiology and disease modification to prognosis, education, symptomatic treatments, and caregiver support. Funders should increase support for all aspects of LBD research to target the many needs identified by individuals and families living with LBD.
    MeSH term(s) Humans ; Lewy Body Disease/diagnosis ; Caregivers/psychology ; Surveys and Questionnaires ; Internet
    Language English
    Publishing date 2023-02-23
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't
    ZDB-ID 1002700-2
    ISSN 1546-4156 ; 0893-0341
    ISSN (online) 1546-4156
    ISSN 0893-0341
    DOI 10.1097/WAD.0000000000000545
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