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Disclosure of Diagnosis in MCI and Dementia

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Management of Patients with Dementia

Abstract

Diagnostic disclosure adopting an individualized approach and maintaining respect for the wishes of the patient is as important as correct and accurate diagnostic evaluation. A dementia diagnosis is often a shock and associated with considerable negative feelings, but the way the message is delivered may mitigate this and help the patient to adjust to the situation. Considerations regarding diagnostic disclosure begin at the first visit for diagnostic evaluation and include determining the reasons the patient is seeking medical help. Pre biomarker counselling, when biomarker sampling is undertaken, is important in order to enable the patient to make an informed choice and will set the stage for the diagnostic disclosure. Post-biomarker counselling should include information on how the biomarkers may be interpreted including risk of progression. A plan for follow-up should be given.

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Abbreviations

AD:

Alzheimer’s disease

MCI:

mild cognitive impairment

References

  1. Hajek A, König H-H. Fear of Dementia in the general population: findings from the German socio-economic panel (GSOEP). J Alzheimers Dis. 2020;75(4):1135–40. https://doi.org/10.3233/JAD-200106.

    Article  PubMed  Google Scholar 

  2. Von Dem Knesebeck O, Angermeyer MC, Lüdecke D, Kofahl C. Emotional reactions toward people with dementia - results of a population survey from Germany. Int Psychogeriatr. 2014;26(3):435–41. https://doi.org/10.1017/S1041610213002056.

    Article  Google Scholar 

  3. Pinner G, Bouman WP. Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. Int Psychogeriatr. 2003;15(3):279–88.

    Article  PubMed  Google Scholar 

  4. Byszewski AM, Molnar FJ, Aminzadeh F, Eisner M, Gardezi F, Bassett R. Dementia diagnosis disclosure. Alzheimer Dis Assoc Disord. 2007;21(2):107–14. https://doi.org/10.1097/WAD.0b013e318065c481.

    Article  PubMed  Google Scholar 

  5. Connell CM, Boise L, Stuckey JC, Holmes SB, Hudson ML. Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. Gerontologist. 2004;44(4):500–7. https://doi.org/10.1093/geront/44.4.500.

    Article  PubMed  Google Scholar 

  6. Derksen E, Vernooij-Dassen M, Gillissen F, Olde Rikkert M, Scheltens P. Impact of diagnostic disclosure in dementia on patients and carers: qualitative case series analysis. Aging Ment Health. 2006;10(5):525–31. https://doi.org/10.1080/13607860600638024.

    Article  CAS  PubMed  Google Scholar 

  7. Derksen E, Vernooij-Dassen M, Gillissen F, Olde-Rikkert M, Scheltens P. The impact of diagnostic disclosure in dementia: a qualitative case analysis. Int psychogeriatr. 2005;17(2):319–26. https://doi.org/10.1017/s1041610205001316.

    Article  PubMed  Google Scholar 

  8. Elson P. Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer’s disease? Int J Geriatr Psychiatry. 2006;21(5):419–25. https://doi.org/10.1002/gps.1485.

    Article  PubMed  Google Scholar 

  9. Van Den Dungen P, Van Kuijk L, Van Marwijk H, et al. Preferences regarding disclosure of a diagnosis of dementia: a systematic review. Int Psychogeriatr. 2014;26(10):1603–18. https://doi.org/10.1017/S1041610214000969.

    Article  PubMed  Google Scholar 

  10. Aminzadeh F, Byszewski A, Molnar FJ, Eisner M. Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Aging Ment Health. 2007;11(3):281–90. https://doi.org/10.1080/13607860600963695.

    Article  PubMed  Google Scholar 

  11. Reisberg B, Ferris SH, de Leon MJ, et al. The stage specific temporal course of Alzheimer’s disease: functional and behavioral concomitants based upon cross-sectional and longitudinal observation. Prog Clin Biol Res. 1989;317:23–41.

    CAS  PubMed  Google Scholar 

  12. Petersen RC, Smith GE, Waring SC, Ivnik RJ, Tangalos EG, Kokmen E. Mild cognitive impairment: clinical characterization and outcome. Arch Neurol. 1999;56(3):303–8. https://doi.org/10.1001/archneur.56.3.303.

    Article  CAS  PubMed  Google Scholar 

  13. Winblad B, Palmer K, Kivipelto M, et al. Mild cognitive impairment - beyond controversies, towards a consensus: report of the International Working Group on Mild Cognitive Impairment. J Intern Med. 2004;256(3):240–6. https://doi.org/10.1111/j.1365-2796.2004.01380.x.

    Article  CAS  PubMed  Google Scholar 

  14. Albert MS, DeKosky ST, Dickson D, et al. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7(3):270–9. https://doi.org/10.1016/j.jalz.2011.03.008.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Dubois B, Feldman HH, Jacova C, et al. Advancing research diagnostic criteria for Alzheimer’s disease: the IWG-2 criteria. Lancet Neurol. 2014;13(6):614–29. https://doi.org/10.1016/S1474-4422(14)70090-0.

    Article  PubMed  Google Scholar 

  16. Gramkow MH, Gjerum L, Koikkalainen J, et al. Prognostic value of complementary biomarkers of neurodegeneration in a mixed memory clinic cohort. PeerJ. 2020;8:e9498. https://doi.org/10.7717/peerj.9498.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Overton M, Pihlsgård M, Elmståhl S. Diagnostic stability of mild cognitive impairment, and predictors of reversion to normal cognitive functioning. Dement Geriatr Cogn Disord. 2020. doi:https://doi.org/10.1159/000506255.

  18. van Maurik IS, Vos SJ, Bos I, et al. Biomarker-based prognosis for people with mild cognitive impairment (ABIDE): a modelling study. Lancet Neurol. 2019;18(11):1034–44. https://doi.org/10.1016/S1474-4422(19)30283-2.

    Article  PubMed  Google Scholar 

  19. Joosten-Weyn Banningh L, Vernooij-Dassen M, Rikkert MO, Teunisse J-P. Mild cognitive impairment: coping with an uncertain label. Int J Geriatr Psychiatry. 2008;23(2):148–54. https://doi.org/10.1002/gps.1855.

    Article  PubMed  Google Scholar 

  20. Jansen WJ, Ossenkoppele R, Tijms BM, et al. Association of cerebral amyloid-β Aggregation with cognitive functioning in persons without dementia. JAMA Psychiat. 2018;75(1):84–95. https://doi.org/10.1001/jamapsychiatry.2017.3391.

    Article  Google Scholar 

  21. Jansen WJ, Ossenkoppele R, Knol DL, et al. Prevalence of cerebral amyloid pathology in persons without dementia. JAMA. 2015;313(19):1924. https://doi.org/10.1001/jama.2015.4668.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Bergeron D, Gorno-Tempini ML, Rabinovici GD, et al. Prevalence of amyloid-β pathology in distinct variants of primary progressive aphasia. Ann Neurol. 2018;84(5):729–40. https://doi.org/10.1002/ana.25333.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  23. Vanderschaeghe G, Dierickx K, Vandenberghe R. Review of the ethical issues of a biomarker-based diagnoses in the early stage of Alzheimer’s disease. J Bioeth Inq. 2018;15(2):219–30. https://doi.org/10.1007/s11673-018-9844-y.

    Article  PubMed  Google Scholar 

  24. Carpenter BD, Xiong C, Porensky EK, et al. Reaction to a dementia diagnosis in individuals with Alzheimer’s disease and mild cognitive impairment. J Am Geriatr Soc. 2008;56(3):405–12. https://doi.org/10.1111/j.1532-5415.2007.01600.x.

    Article  PubMed  Google Scholar 

  25. Laakkonen M-L, Raivio MM, Eloniemi-Sulkava U, et al. How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? J Med Ethics. 2008;34(6):427–30. https://doi.org/10.1136/jme.2007.021956.

    Article  PubMed  Google Scholar 

  26. Seyfried LS, Kales HC, Ignacio RV, Conwell Y, Valenstein M. Predictors of suicide in patients with dementia. Alzheimers Dement. 2011;7(6):567–73. https://doi.org/10.1016/j.jalz.2011.01.006.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Wake T, Tabuchi H, Funaki K, et al. Disclosure of amyloid status for risk of Alzheimer disease to cognitively normal research participants with subjective cognitive decline: a longitudinal study. Am J Alzheimers Dis Other Dement. 2020;35:1–9. https://doi.org/10.1177/1533317520904551.

    Article  Google Scholar 

  28. Wake T, Tabuchi H, Funaki K, et al. The psychological impact of disclosing amyloid status to Japanese elderly: a preliminary study on asymptomatic patients with subjective cognitive decline. Int Psychogeriatr. 2018;30(5):635–9. https://doi.org/10.1017/S1041610217002204.

    Article  PubMed  Google Scholar 

  29. Vanderschaeghe G, Schaeverbeke J, Bruffaerts R, Vandenberghe R, Dierickx K. Amnestic MCI patients’ experiences after disclosure of their amyloid PET result in a research context. Alzheimers Res Ther. 2017;9(1):1–16. https://doi.org/10.1186/s13195-017-0321-3.

    Article  Google Scholar 

  30. Frederiksen KS, Nielsen TR, Appollonio I, et al. Biomarker counseling, disclosure of diagnosis and follow-up in patients with mild cognitive impairment: A European Alzheimer’s disease consortium survey. Int J Geriatr Psychiatry. 2020. doi:https://doi.org/10.1002/gps.5427

  31. Mitchell T, Woodward M, Hirose Y. A survey of attitudes of clinicians towards the diagnosis and treatment of mild cognitive impairment in Australia and New Zealand. Int Psychogeriatr. 2008;20(1):77–85. https://doi.org/10.1017/S1041610207005583.

    Article  PubMed  Google Scholar 

  32. Werner P, Heinik J, Kitai E. Familiarity, knowledge, and preferences of family physicians regarding mild cognitive impairment. Int Psychogeriatr. 2013;25(5):805–13. https://doi.org/10.1017/S1041610212002384.

    Article  PubMed  Google Scholar 

  33. Bertens D, Vos S, Kehoe P, et al. Use of mild cognitive impairment and prodromal AD/MCI due to AD in clinical care: A European survey. Alzheimers Res Ther. 2019;11(1):1–12. https://doi.org/10.1186/s13195-019-0525-9.

    Article  Google Scholar 

  34. Nielsen TR, Svensson BH, Rohr G, et al. The process of disclosing a diagnosis of dementia and mild cognitive impairment: a national survey of specialist physicians in Denmark. Dementia. 2020;19(3):547–59. https://doi.org/10.1177/1471301218777443.

    Article  PubMed  Google Scholar 

  35. Visser LNC, Pelt SAR, Kunneman M, et al. Communicating uncertainties when disclosing diagnostic test results for (Alzheimer’s) dementia in the memory clinic: the ABIDE project. Health Expect. 2020;23(1):52–62. https://doi.org/10.1111/hex.12964.

    Article  PubMed  Google Scholar 

  36. Frederiksen KS, Cooper C, Frisoni GB, et al. A European Academy of Neurology guideline on medical management issues in dementia. Eur J Neurol. 2020;27(10):1805–20. https://doi.org/10.1111/ene.14412.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  37. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834–40. https://doi.org/10.1056/NEJMcp074045.

    Article  CAS  PubMed  Google Scholar 

  38. Appelbaum P, Grisso T. MacCAT-CR: MacArthur competence tool for clinical research. Sarasota, FL: Professional Resource Press; 2001.

    Google Scholar 

  39. Joffe S, Cook EF, Cleary PD, Clark JW, Weeks JC. Quality of informed consent: a new measure of understanding among research subjects. J Natl Cancer Inst. 2001;93(2):139–47. https://doi.org/10.1093/jnci/93.2.139.

    Article  CAS  PubMed  Google Scholar 

  40. Jeste DV, Palmer BW, Appelbaum PS, et al. A new brief instrument for assessing decisional capacity for clinical research. Arch Gen Psychiatry. 2007;64(8):966. https://doi.org/10.1001/archpsyc.64.8.966.

    Article  PubMed  Google Scholar 

  41. Gurrera RJ, Moye J, Karel MJ, Azar AR, Armesto JC. Cognitive performance predicts treatment decisional abilities in mild to moderate dementia. Neurology. 2006;66(9):1367–72. https://doi.org/10.1212/01.wnl.0000210527.13661.d1.

    Article  CAS  PubMed  Google Scholar 

  42. Stormoen S, Almkvist O, Eriksdotter M, Sundström E, Tallberg I-M. Cognitive predictors of medical decision-making capacity in mild cognitive impairment and Alzheimer’s disease. Int J Geriatr Psychiatry. 2014;29(12):1304–11. https://doi.org/10.1002/gps.4114.

    Article  PubMed  Google Scholar 

  43. Gambina G, Bonazzi A, Valbusa V, et al. Awareness of cognitive deficits and clinical competence in mild to moderate Alzheimer’s disease: their relevance in clinical practice. Neurol Sci. 2014;35(3):385–90. https://doi.org/10.1007/s10072-013-1523-5.

    Article  CAS  PubMed  Google Scholar 

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Author information

Authors and Affiliations

  1. Danish Dementia Research Centre, Department of Neurology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

    Kristian Steen Frederiksen & Gunhild Waldemar

Authors
  1. Kristian Steen Frederiksen
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  2. Gunhild Waldemar
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Correspondence to Kristian Steen Frederiksen .

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Editors and Affiliations

  1. Danish Dementia Research Centre, Department of Neurology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

    Kristian Steen Frederiksen

  2. Danish Dementia Research Centre, Department of Neurology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

    Gunhild Waldemar

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Frederiksen, K.S., Waldemar, G. (2021). Disclosure of Diagnosis in MCI and Dementia. In: Frederiksen, K.S., Waldemar, G. (eds) Management of Patients with Dementia. Springer, Cham. https://doi.org/10.1007/978-3-030-77904-7_4

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  • DOI: https://doi.org/10.1007/978-3-030-77904-7_4

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