1. Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.
- Author
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Armstrong MJ, Bedenfield N, Rosselli M, Curiel Cid RE, Kitaigorodsky M, Galvin JE, Lachner C, Grant Smith A, de Los Ángeles Ortega M, Mohiuddin Y, Shatzer J, Marasco D, Willis D, and Bylund CL
- 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., Competing Interests: M.J. Armstrong receives research support from the Florida Department of Health (grant 20A08), the NIH (R01AG068128, P30AG047266, R01NS121099, R44AG062072), and as the local PI of a Lewy Body Dementia Association Research Center of Excellence and she serves on the DSMBs for the Alzheimer's Therapeutic Research Institute/Alzheimer's Clinical Trial Consortium and the Alzheimer's Disease Cooperative Study and has provided educational content for Medscape; N. Bedenfield was supported by the Florida Department of Health (grant 20A08) for working on this study; M. Rosselli receives research support from the NIH (1R01AG080468, 1R01AG068472, P30AG047266) and the Florida Department of Health (grant 20A08); R.E. Curiel Cid receives research support from the NIH (R01AG055638-01A1, P30AG066506, R01AG061106) and Florida Department of Health (20A08, 23A16, 23A10, 23A15); M. Kitaigorodsky was supported by the Florida Department of Health (grant 20A08) for working on this study; J.E. Galvin receives research support from the NIH (R01NS101483, R01NS101483S1, R01AG071514, R01AG071514S1, R56AG074889, P01AG066584, R01AG071643, R01AG069765, R01AG057681, P30AG059295, RF1AG075901, R01AG078214, S06GM142115, R01AG056531, R01AG068128, P30AG066506) and as the local PI of a Lewy Body Dementia Association Research Center of Excellence, he serves as a consultant for Alpha Cognition, Biogen, Eisai, Eli Lilly, GE Healthcare, Genentech, Roche, he is an investigator on clinical trials with CND Life Sciences, Cognition Therapeutics, and EIP Pharma. He serves as Chief Scientific Officer for Cognivue, he serves on the Board of Directors for the Lewy Body Dementia Association, Lewy Body Dementia Resource Center, and South Florida Chapter of the Alzheimer's Association (all unpaid); C. Lachner receives research support from the National institute of Health (NIH) (P30-AG062677 Research and Education Core); A. Grant Smith receives grant support from Biogen, Eisai, Eli Lilly, Cassava, Vivoryon, Janssen, the Alzheimer's Association, the American College of Radiology, and NIH/NIA (through the Alzheimer's Clinical Trial Consortium and as a study clinician for PI Jerri Edwards' PACT and Active MIND trials), she is a steering committee member and site PI for the Alzheimer's Disease Cooperative Study, the Alzheimer's Clinical Trial Consortium, and the Alzheimer's Disease Neuroimaging Initiative, she receives an honorarium for serving as faculty on the NIH-supported IMPACT-AD course, she serves the Florida Department of Health on the Alzheimer's Disease and Related Dementias workgroup of the State Health Improvement Plan, priority area 9.; M.A. Ortega has received funding from the Florida Department of Health Ed and Ethel Moore Alzheimer's Disease Research program (#20A03 May 2020-April 2021; No-Cost Extension May 2021-October 2021) and serves as the FAU Memory Disorder Clinic coordinator for the Florida Department of Elder Affairs Alzheimer's Disease Initiative and serves as a board member and chair of the clinical care subcommittee of the U.S. Department HHS NAPA Advisory Council on Research, Care and Services (both uncompensated); Y. Mohiuddin reports no disclosures relevant to the manuscript; J. Shatzer reports no disclosures relevant to the manuscript; D. Marasco reports no disclosures relevant to the manuscript; D. Willis reports no disclosures relevant to the manuscript; C.L. Bylund receives compensation from The Leukemia & Lymphoma Society as a consultant on caregiver and communication research projects and programming, she receives research support from the NIH (R01CA234030), The Leukemia & Lymphoma Society, and the Florida Department of Health (grant 20A08), she has received compensation from Amgen as a consultant on shared decision making projects and the Leukemia & Lymphoma Society on caregiver and clinical trial projects, she receives royalties from Oxford for editing the books Oxford Textbook of Communication in Oncology and Palliative Care, 2nd Edition and Family Communication About Genetics: Theory and Practice. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.TAKE-HOME POINTS→ Clinicians must show compassion and empathy when delivering dementia diagnoses.→ Clinicians should ask patients and caregivers regarding preferences before disclosing dementia diagnoses.→ When giving dementia diagnoses, clinicians should instill realistic hope, provide education and practical strategies for managing dementia, and connect patients and caregivers to high-quality resources.→ Clinicians should provide written summaries of the diagnoses, plans, and relevant resources discussed during disclosure visits., (© 2023 American Academy of Neurology.)
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- 2024
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