Dementia: World Health Organization (WHO). World Health Organization. 2021. Available from: https://www.who.int/news-room/fact-sheets/detail/dementia. Accessed 15 Jan 2023.

Jessen F, Amariglio RE, Buckley RF, van der Flier WM, Han Y, Molinuevo JL, et al. The characterisation of subjective cognitive decline. Lancet Neurol. 2020;19:271–8. Lancet Publishing.

Article  PubMed  PubMed Central  Google Scholar 

Petersen RC. Mild cognitive impairment as a diagnostic entity. J Intern Med. 2004;256(3):183–94.

Article  CAS  PubMed  Google Scholar 

Jack CR Jr, Bennett DA, Blennow K, Carrillo MC, Dunn B, Budd Haeberlein S, et al. NIA-AA research framework: toward a biological definition of Alzheimer’s disease HHS public access author manuscript. Alzheimers Dement. 2018;14(4):535–62. https://doi.org/10.1016/j.jalz.2018.02.018. Cited 2022 Dec 6.

Article  PubMed  PubMed Central  Google Scholar 

Wimo A, Seeher K, Cataldi R, Cyhlarova E, Dielemann JL, Frisell O, et al. The worldwide costs of dementia in 2019. Alzheimers Dement. 2023;19:2865–73.

Article  PubMed  Google Scholar 

Cummings J, Lee G, Nahed P, Kambar M, Zhong K, Fonseca J. Alzheimer’s disease drug development pipeline: 2022. Alzheimers Dement. 2022;8(1):e12295.

Article  Google Scholar 

Hansson O, Edelmayer RM, Boxer AL, Carrillo MC, Mielke MM, Rabinovici GD, et al. The Alzheimer's Association appropriate use recommendations for blood biomarkers in Alzheimer's disease. Alzheimers Dement. 2022;18(12):2669–86. https://doi.org/10.1002/alz.12756.

Gonzalez-Ortiz F, Turton M, Kac PR, Smirnov D, Premi E, Ghidoni R, et al. Brain-derived tau: a novel blood-based biomarker for Alzheimer’s disease-type neurodegeneration Plasma BD-tau as an AD degeneration marker. Brain. 2023;146(3):1152–65.

Article  PubMed  Google Scholar 

Tochel C, Smith M, Baldwin H, Gustavsson A, Ly A, Bexelius C, et al. What outcomes are important to patients with mild cognitive impairment or Alzheimer’s disease, their caregivers, and health-care professionals? A systematic review. Alzheimers Dement (Amst). 2019;1(11):231–47.

Article  Google Scholar 

Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics. 2016;34(7):645–9.

Article  PubMed  Google Scholar 

Brooks R. EuroQol: the current state of play. Health Policy (New York). 1996;37(1):53–72.

Article  CAS  Google Scholar 

Horsman J, Furlong W, Feeny D, Torrance G. The Health Utilities Index (HUI ® ): concepts, measurement properties and applications. Health Qual Life Outcomes. 2003;1:54.

Article  PubMed  PubMed Central  Google Scholar 

Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ. 2002;21(2):271–92.

Article  PubMed  Google Scholar 

Mulhern B, Rowen D, Brazier J, Smith S, Romeo R, Tait R, et al. Development of DEMQOL-U and DEMQOL-PROXY-U: Generation of preference-based indices from DEMQOL and DEMQOL-PROXY for use in economic evaluation. Health Technol Assess. 2013;17(5):v–xv.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Vergel YB, Sculpher M. Quality-adjusted life years. Pract Neurol. 2008;8(3):175–82.

Article  Google Scholar 

Shearer J, Green C, Ritchie CW, Zajicek JP. Health state values for use in the economic evaluation of treatments for Alzheimer’s disease. Drugs Aging. 2012;29(1):31–43.

Article  PubMed  Google Scholar 

Landeiro F, Mughal S, Walsh K, Nye E, Morton J, Williams H, et al. Health-related quality of life in people with predementia Alzheimer’s disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review. Alzheimers Res Ther. 2020;12(1):154.

Article  PubMed  PubMed Central  Google Scholar 

Gustavsson A, Raket LL, Lilja M, Rutten-Jacobs L, Fues Wahl H, Bagijn M, et al. Health utility in preclinical and prodromal Alzheimer’s disease for establishing the value of new disease-modifying treatments-EQ-5D data from the Swedish BioFINDER study. Alzheimers Dement. 2021;17(11):1832–42.

Article  PubMed  Google Scholar 

Mank A, Rijnhart JJ, van Maurik IS, Jönsson L, Handels R, Bakker ED, et al. A longitudinal study on quality of life along the spectrum of Alzheimer’s disease. Alzheimers Res Ther. 2022;14(1):132.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Heßmann P, Seeberg G, Reese JP, Dams J, Baum E, Müller MJ, et al. Health-related quality of life in patients with Alzheimer’s disease in different German health care settings. J Alzheimers Dis. 2016;51:545–61.

Article  PubMed  Google Scholar 

León-Salas B, Olazará J, Cruz-Orduñ I, Agü Era-Ortiz L, Dobato JL, Valentí-Soler M, et al. Quality of life (QoL) in community-dwelling and institutionalized Alzheimer’s disease (AD) patients. Arch Gerontol Geriatr. 2013;57(3):257–62.

Article  PubMed  Google Scholar 

Dufouil C, Dubois B, Vellas B, Pasquier F, Blanc F, Hugon J, et al. Cognitive and imaging markers in non-demented subjects attending a memory clinic: study design and baseline findings of the MEMENTO cohort. Alzheimers Res Ther. 2017;9(1):1–3.

Article  Google Scholar 

Morris JC. Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr. 1997;9(Suppl 1):173–6.

Article  PubMed  Google Scholar 

Folstein M, Folstein S, McHugh P. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiat Res. 1975;12:189–98.

Article  CAS  PubMed  Google Scholar 

De Medeiros K, Robert P, Gauthier S, Stella F, Politis A, Leoutsakos J, et al. The Neuropsychiatric Inventory-Clinician rating scale (NPI-C): reliability and validity of a revised assessment of neuropsychiatric symptoms in dementia. Int Psychogeriatr. 2010;22(6):984–94.

Article  PubMed  PubMed Central  Google Scholar 

Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9(3):179–86.

Article  CAS  PubMed  Google Scholar 

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (4th ed.). 4th ed. 1994.

Google Scholar 

Guy M, David D, Marshall F, Robert K, Donald P, Emanuel MS. Clinical diagnosis of Alzheimer’s disease: report of the NINCDS-ADRDA work group under auspices of the Department of Health and Human Services Task Force on Alzheimer’s disease. Neurology. 1984;34:939–44.

Article  Google Scholar 

Chevalier J, De Pouvourville G. Valuing EQ-5D using time trade-off in France. Eur J Health Econ. 2013;14(1):57–66.

Article  PubMed  Google Scholar 

Dufournet M, Moutet C, Achi S, Delphin-Combe F, Krolak-Salmon P, Dauphinot V, et al. Proposition of a corrected measure of the Lawton instrumental activities of daily living score. BMC Geriatr. 2021;21:1–10.

Article  Google Scholar 

Zaidi S, Kat MG, De Jonghe JFM. Clinician and caregiver agreement on neuropsychiatric symptom severity: a study using the Neuropsychiatric Inventory - Clinician rating scale (NPI-C). Int Psychogeriatr. 2014;26(7):1139–45.

Article  PubMed  Google Scholar 

Königsberg A, Belau MH, Ascone L, Gallinat J, Kühn S, Jensen M, et al. Subjective cognitive decline is associated with health-related quality of life in the middle-aged to elderly population. J Alzheimers Dis. 2023;91:427–36.

Article  PubMed  Google Scholar 

Lee S, Ho CJ. The association between subjective cognitive decline and quality of life: a population-based study. J Clin Neurosci. 2022;1(98):60–5.

Article  Google Scholar 

Jönsson L, Andreasen N, Kilander L, Soininen H, Waldemar G, Nygaard H. Patient-and proxy-reported utility in Alzheimer disease using the EuroQoL. Alzheimer Dis Assoc Disord. 2006;20(1):49–55.

Article  PubMed  Google Scholar 

Li L, Nguyen KH, Comans T, Scuffham P. Utility-based instruments for people with dementia: a systematic review and meta-regression analysis. Value Health. 2018;21(4):471–81.

Article  PubMed  Google Scholar 

Binnekade TT, Scherder EJA, Maier AB, Lobbezoo F, Overdorp EJ, Rhebergen D, et al. Pain in patients with different dementia subtypes, mild cognitive impairment, and subjective cognitive impairment. Pain Med. 2018;19(5):920–7.

Article  PubMed  Google Scholar 

Liu-Seifert H, Siemers E, Sundell K, Price K, Han B, Selzler K, et al. Cognitive and functional decline and their relationship in patients with mild Alzheimer’s dementia. J Alzheimers Dis. 2015;43(3):949–55.

Article  CAS  PubMed  Google Scholar 

Delva F, Auriacombe S, Letenneur L, Foubert-Samier A, Bredin A, Clementy A, et al. Natural history of functional decline in Alzheimer’s disease: a systematic review. J Alzheimers Dis. 2014;40(1):57–67.

Article  PubMed  Google Scholar 

Janssen N, Handels RL, Wimo A, Antikainen R, Laatikainen T, Soininen H, et al. Association between cognition, health related quality of life, and costs in a population at risk for cognitive decline. J Alzheimers Dis. 2022;89(2):623–32.

Article  PubMed  PubMed Central  Google Scholar 

Lyketsos CG, Carrillo MC, Michael Ryan J, Khachaturian AS, Trzepacz P, Amatniek J, et al. Neuropsychiatric symptoms in Alzheimer’s disease. Alzheimers Dement. 2011;7(5):532–9.

Article  PubMed  PubMed Central  Google Scholar 

Lanctôt KL, Amatniek J, Ancoli-Israel S, Arnold SE, Ballard C, Cohen-Mansfield J, et al. Neuropsychiatric signs and symptoms of Alzheimer’s disease: new treatment paradigms. Alzheimers Dement (N Y). 2017;3(3):440–9.

Article  PubMed