Browsing by Author "Lingler, Jennifer H."

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    Attitudes Toward Advance Care Planning Among Persons with Dementia and their Caregivers
    (Cambridge University Press, 2020-05) Pettigrew, Corinne; Brichko, Rostislav; Black, Betty; O’Connor, Maureen K.; Guerriero Austrom, Mary; Robinson, Maisha T.; Lindauer, Allison; Shah, Raj C.; Peavy, Guerry M.; Meyer, Kayla; Schmitt, Frederick A.; Lingler, Jennifer H.; Domoto-Reilly, Kimiko; Farrar-Edwards, Dorothy; Albert, Marilyn; Psychiatry, School of Medicine
    Objectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey. Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States. Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on "Care Planning for Individuals with Dementia." Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
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    Perspective on the "African American participation in Alzheimer disease research: Effective strategies" workshop, 2018
    (Wiley, 2020-12) Denny, Andrea; Streitz, Marissa; Stock, Kristin; Balls-Berry, Joyce E.; Barnes, Lisa L.; Byrd, Goldie S.; Croff, Raina; Gao, Sujuan; Glover, Crystal M.; Hendrie, Hugh C.; Hu, William T.; Manly, Jennifer J.; Moulder, Krista L.; Stark, Susan; Thomas, Stephen B.; Whitmer, Rachel; Wong, Roger; Morris, John C.; Lingler, Jennifer H.; Psychiatry, School of Medicine
    The Washington University School of Medicine Knight Alzheimer Disease Research Center's "African American Participation in Alzheimer Disease Research: Effective Strategies" Workshop convened to address a major limitation of the ongoing scientific progress regarding Alzheimer's disease and related dementias (ADRD): participants in most ADRD research programs overwhelmingly have been limited to non-Hispanic white persons, thus precluding knowledge as to how ADRD may be represented in non-white individuals. Factors that may contribute to successful recruitment and retention of African Americans into ADRD research were discussed and organized into actionable next steps as described within this report.
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    The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All
    (IOS Press, 2022) Rosen, Allyson C.; Arias, Jalayne J.; Ashford, J. Wesson; Blacker, Deborah; Chhatwal, Jasmeer P.; Chin, Nathan A.; Clark, Lindsay; Denny, Sharon S.; Goldman, Jill S.; Gleason, Carey E.; Grill, Joshua D.; Heidebrink, Judith L.; Henderson, Victor W.; Lavacot, James A.; Lingler, Jennifer H.; Menon, Malavika; Nosheny, Rachel L.; Oliveira, Fabricio F.; Parker, Monica W.; Rahman-Filipiak, Annalise; Revoori, Anwita; Rumbaugh, Malia C.; Sanchez, Danurys L.; Schindler, Suzanne E.; Schwarz, Christopher G.; Toy, Leslie; Tyrone, Jamie; Walter, Sarah; Wang, Li-san; Wijsman, Ellen M.; Zallen, Doris T.; Aggarwal, Neelum T.; Medical and Molecular Genetics, School of Medicine
    The brain changes of Alzheimer’s disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one’s biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information.