University of Wisconsin–Madison

Resources

NIA Reports

Funded Studies on Lucidity in Dementia

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Principal Investigator:
Andrea Gilmore-Bykovskyi, PhD RN

Organization:
University of Wisconsin-Madison

More Information:
https://gilmorebykovskyilab.org/lucidity-study/

Publications

  1. Gilmore-Bykovskyi A, Block L, Benson C, Griffin JM. The Importance of Conceptualizing and Defining Episodes of Lucidity. J Gerontol Nurs. 2021 Apr;47(4):5. doi: 10.3928/00989134-20210326-01. Epub 2021 Apr 1. PMID: 34038253.
  2. Gilmore-Bykovskyi A, Griffin JM, Mueller KD, Parnia S, Kolanowski A. Toward harmonization of strategies for investigating lucidity in AD/ADRD: A preliminary research framework. Alzheimer’s Dement. 2023; 19:343-352. doi: 10.1002/alz.12709.
  3. Gilmore-Bykovskyi A, Block L, Benson C, Fehland J, Botsch M, Mueller KD, Werner N, Shah MJ. “It’s You”: Caregiver and Clinician Perspectives on Lucidity in People Living With Dementia. Gerontologist. 2023 Jan 24;63(1):13-27. doi: 10.1093/geront/gnac095.
  4. Benson C, Fehland J, Botsch M, Block L, Gilmore-Bykovskyi A. The Impact of Episodes of Lucidity on People Living With Dementia and Their Caregivers: A Case Report. Alzheimer Dis Assoc Disord. 2023 Apr-Jun 01;37(2):142-144. doi: 10.1097/WAD.0000000000000553. Epub 2023 Mar 20. PMID: 36988619; PMCID: PMC10238644.
  5. Coulson A, Benson C, Fehland J, Dillon K, Mueller K, Gilmore-Bykovskyi A. Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia. Alzheimer Dis Assoc Disord. 2024 Apr-Jun 01;38(2):140-146. doi: 10.1097/WAD.0000000000000615.
  6. Gilmore-Bykovskyi A, Dillon K, Coulson A, Fehland J, Benson C, Sanson-Miles L, Mueller K. An observational study protocol to capture, validate and characterise lucid episodes in people living with advanced dementia receiving hospice care. BMJ Open. 2024 May 16;14(5):e085897. doi: 10.1136/bmjopen-2024-085897. PMID: 38760031; PMCID: PMC11103230.
  7. Mueller KD, Hale MR, Goulette O, Belay H, Sanson-Miles L, Benson C, Hitchcock M, Gilmore-Bykovskyi A. A scoping review of episodes of lucidity in people living with dementia near the end of life: the potential role of speech-language pathology in research and practice. Perspect ASHA Spec Interest Groups. 2025 Apr;10(2):463-476. doi: 10.1044/2024_persp-24-00033.
  8. Gilmore-Bykovskyi A, Kottler H, Cochran A, Dillon K, Coulson A, Benson C, Fehland J, Mueller K. A prospective observational study of lucid episodes in advanced dementia. Gerontologist. 2025 Sep 8;65(9):gnaf178. doi: 10.1093/geront/gnaf178. PMID: 40748700.

Principal Investigator:
Joan Griffin, PhD

Organization:
Mayo Clinic Rochester

More Information:
https://newsnetwork.mayoclinic.org/discussion/understanding-lucid-episodes-in-dementia

Publications

  1. Griffin JM, Kim K, Gaugler JE, Biggar VS, Frangiosa T, Bangerter LR, Batthyány A, Finnie DM, Lapid MI. Caregiver appraisals of lucid episodes in people with late-stage Alzheimer’s disease or related dementias. Alzheimers Dement (Amst). 2022 Jun 23;14(1):e12313. doi: 10.1002/dad2.12313.
  2. Griffin JM, Kim K, Finnie DM, Lapid MI, Gaugler JE, Batthyány A, Bangerter LR, Biggar VS, Frangiosa T. Developing and describing a typology of lucid episodes among people with Alzheimer’s disease and related dementias. Alzheimers Dement. 2024 Apr;20(4):2434-2443. doi: 10.1002/alz.13667. Epub 2024 Feb 2. PMID: 38305566; PMCID: PMC11032560.
  3. Bangerter LR, Griffin JM, Kim K, Finnie DM, Lapid MI, Gaugler JE, Biggar VS, Frangiosa T. A Delphi Approach to Define Lucid Episodes in People Living With Dementia. Alzheimer Dis Assoc Disord. 2024 Apr-Jun 01;38(2):147-151. doi: 10.1097/WAD.0000000000000621.
  4. Kim K, Bangerter LR, Liu Y, Finnie DM, Lapid MI, Gaugler JE, Griffin JM. Spouse and Child Caregivers’ Experiences of Lucid Episodes in Dementia: A Mixed Methods Approach. Innov Aging. 2025 Apr 23;9(6):igaf036. doi: 10.1093/geroni/igaf036. PMID: 40502729; PMCID: PMC12149523.
  5. Griffin JM, Bangerter LR, Kim K, Liu Y, Batthyány A, Birkeland RW, Frangiosa TL, Nosheny RL, Gaugler J, Lapid MI. Lucid episodes among people with Alzheimer’s disease and related dementias and their impact on family caregiver stress and grief (LEAD): protocol for a longitudinal observational study. BMJ Open. 2025 Jul 10;15(7):e098182. doi: 10.1136/bmjopen-2024-098182. PMID: 40645625; PMCID: PMC12248201.
  6. Cotton QD, Birkeland R, Bailey D, Gidey S, Kim K, Lapid MI, Bangerter LR, Liu Y, Finnie DM, Gaugler JE, Griffin JM. She asked if she had dementia: caregivers’ insights on lucidity in late stages of dementia and its impact. Alzheimer’s Dement. 2025;e70049. doi: 10.1002/bsa3.70049.

Principal Investigators:
Jason Karlawish, MD
Andrew Peterson, PhD

Organization:
University of Pennsylvania

More Information:
https://pennmemorycenter.org/paradoxical-lucidity/

Publications

  1. Ney DB, Peterson A, Karlawish J. The ethical implications of paradoxical lucidity in persons with dementia. J Am Geriatr Soc. 2021 Dec;69(12):3617-3622. doi: 10.1111/jgs.17484.
  2. Peterson A, Clapp J, Largent EA, Harkins K, Stites SD, Karlawish J. What is paradoxical lucidity? The answer begins with its definition. Alzheimers Dement. 2022 Mar;18(3):513-521. doi: 10.1002/alz.12424.
  3. Peterson A, Clapp J, Harkins K, Kleid M, Largent EA, Stites SD, Karlawish J. Is there a difference between terminal lucidity and paradoxical lucidity? Alzheimers Dement. 2022 Mar;18(3):540-541. doi: 10.1002/alz.12579.
  4. Karlawish J, Peterson A, Kleid M, Harkins K, Largent EA, Stites SD, Coykendall C, Clapp JT. Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia. Gerontologist. 2024 Jun 1;64(6):gnad170. doi: 10.1093/geront/gnad170.

Principal Investigators:
Serguei Pakhomov, PhD
Trevor Cohen, MBChB, PhD, FACMI

Organization:
University of Minnesota

More Information:
https://www.pharmacy.umn.edu/research-spotlight-dr-pakhomov

Publications

  1. Li C, Knopman D, Xu W, Cohen T, Pakhomov S. GPT-D: Inducing Dementia-related Linguistic Anomalies by Deliberate Degradation of Artificial Neural Language Models. Proc Conf Assoc Comput Linguist Meet. 2022 May;2022:1866-1877. doi: 10.18653/v1/2022.acl-long.131.
  2. Li C, Xu W, Cohen T, Michalowski M, Pakhomov S. TRESTLE: Toolkit for Reproducible Execution of Speech, Text and Language Experiments. AMIA Jt Summits Transl Sci Proc. 2023 Jun 16;2023:360-369. PMID: 37350929; PMCID: PMC10283131.
  3. Li C, Xu W, Cohen T, Pakhomov S. Useful blunders: Can automated speech recognition errors improve downstream dementia classification? J Biomed Inform. 2024 Feb;150:104598. doi: 10.1016/j.jbi.2024.104598.
  4. Li C, Solinsky J, Cohen T, Pakhomov S. A curious case of retrogenesis in language: Automated analysis of language patterns observed in dementia patients and young children. Neurosci Inform. 2024 Mar;4(1):100155. doi: 10.1016/j.neuri.2023.100155.

Principal Investigator:
Sam Parnia, MD, PhD

Organization:
New York University School of Medicine

More Information:
https://med.nyu.edu/research/parnia-lab/consciousness/consciousness-end-life-paradoxical-lucidity

Publications

  1. Tollock M, Leontovich N, Gonzalez A, Parnia S. A Multi-Site Prospective Study of Paradoxical Lucidity in Moderate to Severe Dementia. Innov Aging. 2025 Dec 31;9(Suppl 2):igaf122.2914. doi: 10.1093/geroni/igaf122.2914. PMCID: PMC12761273.

Principal Investigators:
Jeanne Teresi, EdD, PhD
Jose Luchsinger, MD, MPH

Organization:
Columbia University Health Sciences

More Information:
NIH Project Details

Publications

  1. Teresi JA, Ramirez M, Ellis J, Tan A, Capezuti E, Silver S, Boratgis G, Eimicke JP, Gonzalez-Lopez P, Devanand DP, Luchsinger JA. Reports About Paradoxical Lucidity from Health Care Professionals: A Pilot Study. J Gerontol Nurs. 2023 Jan;49(1):18-26. doi: 10.3928/00989134-20221206-03.
  2. Ramirez M, Teresi JA, Ellis J, Gonzalez-Lopez P, Silver S, Rutigliano M, Vidal-Manzano J, Boratgis G, Devanand DP, van Meer I, Bhatti I, Bhatti U, Luchsinger JA. Unexpected lucidity in dementia: application of qualitative methods to develop an informant-reported lucidity measure. Aging Ment Health. 2023 Nov-Dec;27(12):2395-2402. doi: 10.1080/13607863.2023.2207167.
  3. Ramirez M, Teresi JA, Silver S, Gonzalez-Lopez P, van Meer I, Ghaemmaghamfarahani I, Boratgis G, Devenand D, Luchsinger JA. The lucidity in dementia experience: perspectives from family and professional caregivers. Age Ageing. 2024 Aug 6;53(8):afae174. doi: 10.1093/ageing/afae174. PMID: 39158483.

  1. Normann HK, Asplund K, Norberg A. Episodes of lucidity in people with severe dementia as narrated by formal carers. J Adv Nurs. 1998 Dec;28(6):1295-300. doi: 10.1046/j.1365-2648.1998.00845.x. PMID: 9888375.
  2. Normann HK, Norberg A, Asplund K. Confirmation and lucidity during conversations with a woman with severe dementia. J Adv Nurs. 2002 Aug;39(4):370-6. doi: 10.1046/j.1365-2648.2002.02298.x. PMID: 12139649.
  3. Normann HK, Henriksen N, Norberg A, Asplund K. Lucidity in a woman with severe dementia related to conversation. a case study. J Clin Nurs. 2005 Aug;14(7):891-6. doi: 10.1111/j.1365-2702.2005.01134.x. PMID: 16000104.
  4. Normann HK, Asplund K, Karlsson S, Sandman PO, Norberg A. People with severe dementia exhibit episodes of lucidity. A population-based study. J Clin Nurs. 2006 Nov;15(11):1413-7. doi: 10.1111/j.1365-2702.2005.01505.x. PMID: 17038102.
  5. Nahm M, Greyson B. Terminal lucidity in patients with chronic schizophrenia and dementia: a survey of the literature. J Nerv Ment Dis. 2009 Dec;197(12):942-4. doi: 10.1097/NMD.0b013e3181c22583. PMID: 20010032.
  6. Nahm M, Greyson B, Kelly EW, Haraldsson E. Terminal lucidity: a review and a case collection. Arch Gerontol Geriatr. 2012 Jul-Aug;55(1):138-42. doi: 10.1016/j.archger.2011.06.031.
  7. Nahm M, Greyson B. The death of Anna Katharina Ehmer: a case study in terminal lucidity. Omega (Westport). 2013-2014;68(1):77-87. doi: 10.2190/om.68.1.e. PMID: 24547666.
  8. Shulman KI, Hull IM, DeKoven S, Amodeo S, Mainland BJ, Herrmann N. Cognitive Fluctuations and the Lucid Interval in Dementia: Implications for Testamentary Capacity. J Am Acad Psychiatry Law. 2015 Sep;43(3):287-92. PMID: 26438805.
  9. Bloch F. A transient awakening of a patient with Alzheimer’s disease that questions our practice. Clin Case Rep. 2016 Mar 2;4(4):376-8. doi: 10.1002/ccr3.530. PMID: 27099731; PMCID: PMC4831387.
  10. Morris P, Bulman D. Lucidity in the Context of Advanced Neurodegenerative Disorders: A Concept Analysis. J Gerontol Nurs. 2020; 46(12):42-50. doi:10.3928/00989134-20201106-06.
  11. Batthyány A, Greyson B. Spontaneous remission of dementia before death: Results from a study on paradoxical lucidity. Psychol Conscious (Wash D C). 2021 Mar;8(1):1–8. doi: 10.1037/cns0000259.
  12. Post SG, Ross JP, Bonhag R, Lu WH. Lucidity in deeply forgetful people: A national U.S. survey of caregivers’ reactions. J Alzheimers Dis. 2024 Dec;102(4):1197-1208. doi: 10.1177/13872877241297149. Epub 2024 Nov 27. PMID: 39604274.
  13. Ross JP, Post SG, Scheinfeld L. Lucidity in the Deeply Forgetful: A Scoping Review. J Alzheimers Dis. 2024;98(1):3-11. doi: 10.3233/JAD-231396. PMID: 38339937; PMCID: PMC10977389.
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