Angélique A A Gruters1, Hannah L Christie1, Inez H G B Ramakers1, Frans R J Verhey1, Roy P C Kessels2,3, Marjolein E de Vugt1. 1. Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, the Netherlands. 2. Donders Institute for Brain, Cognition and Behaviour, Radboud University, Nijmegen, the Netherlands. 3. Department of Medical Psychology & Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, the Netherlands.
Abstract
Objective: The aim of this study was to gain insight into the experiences of patients and their family members regarding a neuropsychological assessment (NPA) and the diagnostic disclosure given by the medical specialist (psychiatrist, geriatrician, or their residents) at the memory clinic (MC).Method: Patients with and without a cognitive impairment and their family members were recruited from three Dutch MCs. Four focus groups with 14 patients and 13 family members were analyzed using both inductive and deductive content analysis. Results: Three themes were identified: uncertainty, early diagnostic paradox, and knowledge utilization. High levels of uncertainty were experienced throughout the NPA and diagnostic disclosure. The early diagnostic paradox refers to the coexistence of negative emotions, feeling distressed due to undergoing an NPA that made them aware of their cognitive complaints, and the experience of relief due to insight given by the outcome of the NPA and medical diagnosis. Knowledge utilization refers to a low retention of medical information. Conclusion: Clinicians can reduce uncertainty by using clear communication, limiting interruptions during an NPA, and paying attention to contextual factors. Low information retention could possibly be improved by involving a family member and using visual aids or written information during the diagnostic disclosure. Finally, participants also appreciated being provided with neuropsychological feedback on the strengths and weaknesses of their cognitive profiles and with guidance on how to manage this diagnosis in their daily lives.
Objective: The aim of this study was to gain insight into the experiences of patients and their family members regarding a neuropsychological assessment (NPA) and the diagnostic disclosure given by the medical specialist (psychiatrist, geriatrician, or their residents) at the memory clinic (MC).Method: Patients with and without a cognitive impairment and their family members were recruited from three Dutch MCs. Four focus groups with 14 patients and 13 family members were analyzed using both inductive and deductive content analysis. Results: Three themes were identified: uncertainty, early diagnostic paradox, and knowledge utilization. High levels of uncertainty were experienced throughout the NPA and diagnostic disclosure. The early diagnostic paradox refers to the coexistence of negative emotions, feeling distressed due to undergoing an NPA that made them aware of their cognitive complaints, and the experience of relief due to insight given by the outcome of the NPA and medical diagnosis. Knowledge utilization refers to a low retention of medical information. Conclusion: Clinicians can reduce uncertainty by using clear communication, limiting interruptions during an NPA, and paying attention to contextual factors. Low information retention could possibly be improved by involving a family member and using visual aids or written information during the diagnostic disclosure. Finally, participants also appreciated being provided with neuropsychological feedback on the strengths and weaknesses of their cognitive profiles and with guidance on how to manage this diagnosis in their daily lives.
Authors: Angélique A A Gruters; Inez H G B Ramakers; Annemarie P M Stiekema; Frans R J Verhey; Roy P C Kessels; Marjolein E de Vugt Journal: J Alzheimers Dis Date: 2021 Impact factor: 4.472
Authors: Sara Laureen Bartels; Sophie I Johnsson; Katja Boersma; Ida Flink; Lance M McCracken; Suzanne Petersson; Hannah L Christie; Inna Feldman; Laura E Simons; Patrick Onghena; Johan W S Vlaeyen; Rikard K Wicksell Journal: BMJ Open Date: 2022-04-15 Impact factor: 3.006
Authors: Angélique Aa Gruters; Inez Hgb Ramakers; Frans Rj Verhey; Roy Pc Kessels; Marjolein E de Vugt Journal: Neuropsychol Rev Date: 2021-04-20 Impact factor: 6.940