Abstract
Background
Alzheimer’s disease (AD) is a progressive, neurodegenerative disease presenting along a continuum ranging from asymptomatic disease to mild cognitive impairment (MCI), followed by dementia characterized as mild, moderate, or severe.
Objectives
To better understand the medical journey of patients with all-cause MCI or mild AD dementia from the perspective of patients, care partners, and physicians.
Design
Cross-sectional study.
Setting
Online surveys in the United States between February 4, 2021, and March 1, 2021.
Participants
103 patients with all-cause MCI or mild AD dementia and 150 care partners participated in this survey. 301 physicians (75 of whom were neurologists) completed a survey.
Measurements
The surveys included questions regarding attitudes, experiences, and behaviors related to diagnosis and management of MCI and mild AD dementia. For the patient and care partner surveys, questions regarding healthcare received for MCI and mild AD dementia were only asked of care partners.
Results
Most patients (73%) had a similar medical journey. The majority (64%) initially consulted a primary care physician on average 15 months after symptom onset, with symptoms primarily consisting of forgetfulness and short-term memory loss. About half (51%) of patients in the typical medical journey were diagnosed by a neurologist. Upon diagnosis, most neurologists reported having discussions with patients and care partners about the potential causes of MCI or mild AD dementia (83%); of these physicians, 83% explained the effect other conditions have on the risk of the diagnoses and symptom progression. Neurologists (52%) consider themselves the coordinator of care for patients with MCI or mild AD dementia. Amongst patients and care partners, about one-third (35%) perceive the neurologists to be the coordinating physician.
Conclusions
Neurologists commonly diagnose MCI and mild AD dementia but are typically not the first point of contact in the medical journey, and patients do not consult with a physician for over a year after symptom onset. Neurologists play a key role in the medical journey for patients and care partners, and could help ensure earlier diagnosis and treatment, and improve clinical outcomes by coordinating MCI and mild AD dementia care and collaborating with primary care physicians.
Similar content being viewed by others
References
Alzheimer’s Association. 2022 Alzheimer’s disease facts and figures. Alzheimer’s & Dementia. 2022;18(4):Online ahead of print. doi:https://doi.org/10.1002/alz.12638
Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. May 2011;7(3):280–92. doi:https://doi.org/10.1016/j.jalz.2011.03.003
Jack CR, Jr., Bennett DA, Blennow K, et al. NIA-AA Research Framework: Toward a biological definition of Alzheimer’s disease. Alzheimer’s & dementia: the journal of the Alzheimer’s Association. 2018;14(4):535–562. doi:https://doi.org/10.1016/j.jalz.2018.02.018
Lu Y, Fülöp T, Gwee X, et al. Cardiometabolic and Vascular Disease Factors and Mild Cognitive Impairment and Dementia. Gerontology. Jan 26 2022:1–9. doi:https://doi.org/10.1159/000521547
Alonso A, Knopman DS, Gottesman RF, et al. Correlates of Dementia and Mild Cognitive Impairment in Patients With Atrial Fibrillation: The Atherosclerosis Risk in Communities Neurocognitive Study (ARIC-NCS). J Am Heart Assoc. Jul 24 2017;6(7)doi:https://doi.org/10.1161/jaha.117.006014
Mazzoccoli G, Dagostino MP, Vinciguerra M, et al. An association study between epicardial fat thickness and cognitive impairment in the elderly. Am J Physiol Heart Circ Physiol. Nov 1 2014;307(9):H1269–76. doi:https://doi.org/10.1152/ajpheart.00175.2014
Bhat NR. Linking cardiometabolic disorders to sporadic Alzheimer’s disease: a perspective on potential mechanisms and mediators. J Neurochem. Nov 2010;115(3):551–62. doi:https://doi.org/10.1111/j.1471-4159.2010.06978.x
Naderali EK, Ratcliffe SH, Dale MC. Obesity and Alzheimer’s disease: a link between body weight and cognitive function in old age. Am J Alzheimers Dis Other Demen. Dec-2010 Jan 2009;24(6):445–9. doi:https://doi.org/10.1177/1533317509348208
Vagelatos NT, Eslick GD. Type 2 diabetes as a risk factor for Alzheimer’s disease: the confounders, interactions, and neuropathology associated with this relationship. Epidemiol Rev. 2013;35:152–60. doi:https://doi.org/10.1093/epirev/mxs012
Lennon MJ, Makkar SR, Crawford JD, Sachdev PS. Midlife Hypertension and Alzheimer’s Disease: A Systematic Review and Meta-Analysis. J Alzheimers Dis. 2019;71(1):307–316. doi:https://doi.org/10.3233/jad-190474
Ott A, Stolk RP, van Harskamp F, Pols HA, Hofman A, Breteler MM. Diabetes mellitus and the risk of dementia: The Rotterdam Study. Neurology. Dec 10 1999;53(9):1937–42. doi:https://doi.org/10.1212/wnl.53.9.1937
Willette AA, Johnson SC, Birdsill AC, et al. Insulin resistance predicts brain amyloid deposition in late middle-aged adults. Alzheimers Dement. May 2015;11(5):504–510.e1. doi:https://doi.org/10.1016/j.jalz.2014.03.011
Ramirez A, Wolfsgruber S, Lange C, et al. Elevated HbA1c is associated with increased risk of incident dementia in primary care patients. J Alzheimers Dis. 2015;44(4):1203–12. doi:https://doi.org/10.3233/jad-141521
Rajan KB, Weuve J, Barnes LL, McAninch EA, Wilson RS, Evans DA. Population estimate of people with clinical Alzheimer’s disease and mild cognitive impairment in the United States (2020–2060). Alzheimers Dement. Dec 2021;17(12):1966–1975. doi:https://doi.org/10.1002/alz.12362
Brookmeyer R, Abdalla N, Kawas CH, Corrada MM. Forecasting the prevalence of preclinical and clinical Alzheimer’s disease in the United States. Alzheimers Dement. Feb 2018;14(2):121–129. doi:https://doi.org/10.1016/j.jalz.2017.10.009
Katz MJ, Lipton RB, Hall CB, et al. Age-specific and sex-specific prevalence and incidence of mild cognitive impairment, dementia, and Alzheimer dementia in blacks and whites: a report from the Einstein Aging Study. Alzheimer Dis Assoc Disord. Oct–Dec 2012;26(4):335–343. doi:https://doi.org/10.1097/WAD.0b013e31823dbcfc
Gillis C, Gianinazzi M, Nejati M, Maserejian N. Updated US Prevalence Estimates Accounting for Racial and Ethnic Diversity for Trials and Therapies Targeting Mild Cognitive Impairment Due to Alzheimer’s Disease (AD) and Mild AD Dementia (P1-1.Virtual). Neurology. 2022;98(18 Supplement):1353.
Hurd MD, Martorell P, Langa KM. Monetary costs of dementia in the United States. N Engl J Med. Aug 1 2013;369(5):489–90. doi:https://doi.org/10.1056/NEJMc1305541
Atri A. The Alzheimer’s Disease Clinical Spectrum: Diagnosis and Management. Medical Clinics of North America. 2019/03/01/ 2019;103(2):263–293. doi:https://doi.org/10.1016/j.mcna.2018.10.009
Mitchell AJ, Meader N, Pentzek M. Clinical recognition of dementia and cognitive impairment in primary care: a meta-analysis of physician accuracy. Acta Psychiatr Scand. Sep 2011;124(3):165–83. doi:https://doi.org/10.1111/j.1600-0447.2011.01730.x
Rabinovici GD, Gatsonis C, Apgar C, et al. Association of Amyloid Positron Emission Tomography With Subsequent Change in Clinical Management Among Medicare Beneficiaries With Mild Cognitive Impairment or Dementia. JAMA. Apr 2 2019;321(13):1286–1294. doi:https://doi.org/10.1001/jama.2019.2000
Petersen RC, Lopez O, Armstrong MJ, et al. Practice guideline update summary: Mild cognitive impairment: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2018;90(3):126–135. doi:https://doi.org/10.1212/WNL.0000000000004826
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. Alzheimer’s & dementia: the journal of the Alzheimer’s Association. 2011;7(3):270–279. doi:https://doi.org/10.1016/j.jalz.2011.03.008
Jack CR, Jr., Albert MS, Knopman DS, et al. Introduction to the recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. May 2011;7(3):257–62. doi:https://doi.org/10.1016/j.jalz.2011.03.004
McKhann GM, Knopman DS, Chertkow H, et al. The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & dementia: the journal of the Alzheimer’s Association. 2011;7(3):263–269. doi:https://doi.org/10.1016/j.jalz.2011.03.005
Chen Y-X, Liang N, Li X-L, Yang S-H, Wang Y-P, Shi N-N. Diagnosis and Treatment for Mild Cognitive Impairment: A Systematic Review of Clinical Practice Guidelines and Consensus Statements. Systematic Review. Front Neurol. 2021-October-12 2021;12doi:https://doi.org/10.3389/fneur.2021.719849
Cummings J, Lee G, Nahed P, et al. Alzheimer’s disease drug development pipeline: 2022.. Alzheimer’s & Dementia: Translational Research & Clinical Interventions. 2022/01/01 2022;8(1):e12295. doi:https://doi.org/10.1002/trc2.12295
Alzheimer’s Association. Medications for Memory, Cognition and Dementia-Related Behaviors. Accessed April 5, 2022, https://www.alz.org/alzheimers-dementia/treatments/medications-for-memory
Stites SD, Karlawish J, Harkins K, Rubright JD, Wolk D. Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated With Lower Self-Ratings of Quality of Life in Older Adults. J Gerontol B Psychol Sci Soc Sci. 2017;72(6):974–985. doi:https://doi.org/10.1093/geronb/gbx100
Zucchella C, Bartolo M, Pasotti C, Chiapella L, Sinforiani E. Caregiver burden and coping in early-stage Alzheimer disease. Alzheimer Dis Assoc Disord. Jan–Mar 2012;26(1):55–60. doi:https://doi.org/10.1097/WAD.0b013e31821aa6de
Jutkowitz E, Kane RL, Gaugler JE, MacLehose RF, Dowd B, Kuntz KM. Societal and Family Lifetime Cost of Dementia: Implications for Policy. J Am Geriatr Soc. Oct 2017;65(10):2169–2175. doi:https://doi.org/10.1111/jgs.15043
Deb A, Thornton JD, Sambamoorthi U, Innes K. Direct and indirect cost of managing alzheimer’s disease and related dementias in the United States. Expert Rev Pharmacoecon Outcomes Res. 2017;17(2):189–202. doi:https://doi.org/10.1080/14737167.2017.1313118
National Center for Health Statistics. Underlying Cause of Death 1999–2020 on CDC WONDER Online Database. Centers for Disease Control and Prevention. Accessed April 5, 2022, http://wonder.cdc.gov/ucd-icd10.html
Gil Martínez V, Avedillo Salas A, Santander Ballestín S. Vitamin Supplementation and Dementia: A Systematic Review. Nutrients. 2022;14(5):1033. doi:https://doi.org/10.3390/nu14051033
Carrion C, Folkvord F, Anastasiadou D, Aymerich M. Cognitive Therapy for Dementia Patients: A Systematic Review. Dementia and Geriatric Cognitive Disorders. 2018;46(1–2):1–26. doi:https://doi.org/10.1159/000490851
Hailu T, Cannuscio CC, Dupuis R, Karlawish J. A Typical Day With Mild Cognitive Impairment. Am J Public Health. 2017;107(6):927–928. doi:https://doi.org/10.2105/AJPH.2017.303752
Lingler JH, Nightingale MC, Erlen JA, et al. Making sense of mild cognitive impairment: a qualitative exploration of the patient’s experience. Gerontologist. Dec 2006;46(6):791–800. doi:https://doi.org/10.1093/geront/46.6.791
Beard RL, Neary TM. Making sense of nonsense: experiences of mild cognitive impairment. Sociology of Health & Illness. 2013/01/01 2013;35(1):130–146. doi:https://doi.org/10.1111/j.1467-9566.2012.01481.x
Morris JL, Hu L, Hunsaker A, Liptak A, Seaman JB, Lingler JH. Patients’ and Family Members’ Subjective Experiences of a Diagnostic Evaluation of Mild Cognitive Impairment. J Patient Exp. 2020;7(1):124–131. doi:https://doi.org/10.1177/2374373518818204
Riquelme-Galindo J, García-Sanjuán S, Lillo-Crespo M, Martorell-Poveda M-A. Experience of People in Mild and Moderate Stages of Alzheimer’s Disease in Spain. Aquichan. 2020;20(4)doi:https://doi.org/10.5294/aqui.2020.20.4.4
JAD Admin. Case Study: Understanding the Alzheimer’s Disease (including MCI) Patient Journey with Limited Patient Voice. 2020. https://www.j-alz.com/editors-blog/posts/case-study-understanding-alzheimers-disease-including-mci-patient-journey
Lepore MS, S.B.; Wiener, J.M.; Gould, E. Challenges in Involving People with Dementia as Study Participants in Research on Care and Services. 2017. US Department of Health and Human Services Research Summit on Dementia Care: Building Evidence for Services and Supports. https://aspe.hhs.gov/sites/default/files/migrated_legacy_files//174691/Session%205%20Background.pdf
Kurtz KM, R.; McKee, A.; Murphy, V.; Peterson, M.; Polland, R.; Rudd, L.; Ryan, E.; Troske, M.; Bass, J.D. Examining the lived experience of Mild Cognitive Impairment (MCI): An evidence-based practice project. 2019. Accessed April 5, 2022. https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1003&context=ot_grad
Judge D, Roberts J, Khandker R, Ambegaonkar B, Black CM. Physician Perceptions about the Barriers to Prompt Diagnosis of Mild Cognitive Impairment and Alzheimer’s Disease. International Journal of Alzheimer’s Disease. 2019/05/21 2019;2019:3637954. doi:https://doi.org/10.1155/2019/3637954
Porsteinsson AP, Isaacson RS, Knox S, Sabbagh MN, Rubino I. Diagnosis of Early Alzheimer’s Disease: Clinical Practice in 2021. J Prev Alzheimers Dis. 2021;8(3):371–386. doi:https://doi.org/10.14283/jpad.2021.23
Galvin JE, Aisen P, Langbaum JB, et al. Early Stages of Alzheimer’s Disease: Evolving the Care Team for Optimal Patient Management. Front Neurol. 2021;11:592302–592302. doi:https://doi.org/10.3389/fneur.2020.592302
Acknowledgements
The authors thank Rebecca Hahn, MPH and Elizabeth Tanner, PhD of KJT Group, Inc., Rochester, NY for providing medical writing support, which was funded by Novo Nordisk, Inc., Plainsboro, NJ in accordance with Good Publication Practice (GPP3) guidelines.
Funding
Funding: Novo Nordisk Inc. funded the study and writing support, and had a role in the study design, data collection, analysis, interpretation of data, and review/approval of the manuscript.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Disclosures: Susan Alford, Carol Hamersky, and Anup Sabharwal are employees of and own stock in Novo Nordisk. Jeremy Pruzin has received grants from the Arizona Alzheimer’s Disease Research Center for a research project involving cardiovascular disease, APOE, and blood biomarkers in autosomal dominant AD; he is the recipient of an Alzheimer’s Association Clinician Scientist Fellowship award examining physical activity, cardiovascular risk and their influence on Alzheimer’s disease. Stephen Brunton has received consulting fees from Acadia and Novo Nordisk; he is also on the speakers’ bureau for Novo Nordisk. Ganesh Gopalakrishna declares no conflicts of interest.
Ethical standards: Western Institutional Review Board prospectively reviewed the study and considered it exempt because it is an online survey with adequate protections in place to protect the privacy of subjects and to maintain the confidentiality of data. The study and data accumulation were in conformity with all country, federal, or state laws, informed consent was obtained from participants, and the study was in adherence to the tenets of the Declaration of Helsinki.
Electronic supplementary material
42414_2023_205_MOESM1_ESM.pdf
Medical Journey of Patients with Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia: A Cross-sectional Survey of Patients, Care Partners, and Neurologists
42414_2023_205_MOESM2_ESM.pptx
Medical Journey of Patients with Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia: A Cross-sectional Survey of Patients, Care Partners, and Neurologists
Rights and permissions
About this article
Cite this article
Pruzin, J.J., Brunton, S., Alford, S. et al. Medical Journey of Patients with Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia: A Cross-sectional Survey of Patients, Care Partners, and Neurologists. J Prev Alzheimers Dis 10, 162–170 (2023). https://doi.org/10.14283/jpad.2023.21
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.14283/jpad.2023.21