Timely diagnosis for alzheimer's disease: A literature review on benefits and challenges

Journal of Alzheimer's Disease

Volumn 49, Issue 3, 2015, Pages 617-631

  Duboisa, Bruno ^a   Padovanib, Alessandro ^b   Scheltensc, Philip ^c   Rossid, Andrea ^d   Agnello, Grazia Dell ^d  

^a PITIÉ SALPÊTRIÈRE HOSPITAL   (France)

^b UNIVERSITY OF BRESCIA   (Italy)

^c VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^d Eli Lilly Italia SpA   (Italy)

Author keywords

Alzheimer's disease; Diagnosis; Pre Dementia; Review; Timely

Indexed keywords

ALZHEIMER DISEASE; ANXIETY; ARTICLE; CLINICAL EVALUATION; COGNITION; COST BENEFIT ANALYSIS; COST CONTROL; DEMENTIA; DEPRESSION; DISEASE COURSE; DISTRESS SYNDROME; EARLY DIAGNOSIS; HEALTH CARE COST; HEALTH CARE PERSONNEL; HUMAN; INSTITUTIONALIZATION; PATIENT ASSESSMENT; PATIENT CARE; PATIENT CARE PLANNING; PATIENT COUNSELING; PATIENT EDUCATION; PATIENT SAFETY; PREVENTIVE HEALTH SERVICE; PRIMARY MEDICAL CARE; PRIORITY JOURNAL; PRODROMAL SYMPTOM; PSYCHOSOCIAL CARE; QUALITATIVE ANALYSIS; RISK BENEFIT ANALYSIS; STIGMA; SUICIDE; TRAINING; BIBLIOGRAPHIC DATABASE; STATISTICS AND NUMERICAL DATA; TIME FACTOR;

ALZHEIMER DISEASE; DATABASES, BIBLIOGRAPHIC; HUMANS; TIME FACTORS;

EID: 84949984512     PISSN: 13872877     EISSN: 18758908     Source Type: Journal    
DOI: 10.3233/JAD-150692     Document Type: Article

References (92)

1. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM (1984) Clinical diagnosis of Alzheimer's disease: Report ofthe NINCDS-ADRDA Work Group under the auspices of department of health and human services task force on Alzheimer's disease. Neurology 34, 939-944.
2. Prince M, Bryce R, Ferri C (2011) World Alzheimer Report 2011: The benefits of early diagnosis and intervention. Alzheimer Disease International, http://www.alz. co.uk/research/WorldAlzheimerReport2011.pdf, Accessed on January 20, 2014.
3. Dubois B, Feldman HH, Jacova C, Cummings JL, Dekosky ST, Barberger-Gateau P, Delacourte A, Frisoni G, Fox NC, Galasko D, Gauthier S, Hampel H, Jicha GA, Meguro K, O'Brien J, Pasquier F, Robert P, Rossor M, Salloway S, Sarazin M, de Souza LC, Stern Y, Visser PJ, Scheltens P (2010) Revising the definition of Alzheimer's disease: A new lexicon. Lancet Neurol 9, 1118-1127.
4. Vos SJB, Xiong C, Visser PJ, Jasielec MS, Hassenstab J, Grant EA, Cairns NJ, Morris JC, Holtzman DM, Fagan AM (2013) Preclinical Alzheimer's disease and its outcome: A longitudinal cohort study. Lancet Neurol 12, 957-965.
5. Bertens D, Knol DL, Scheltens P, Visser PJ, Alzheimer's Disease Neuroimaging, Initiative (2015) Temporal evolution of biomarkers and cognitive markers in the asymptomatic, MCI, and dementia stage of Alzheimer's disease. Alzheimers Dement 11, 511-522.
6. Amieva H, Le Goff M, Millet X, Orgogozo JM, Peres K, Barberger-Gateau P, Jacqmin-Gadda H, Dartigues JF (2008) Prodromal Alzheimer's disease: Successive emergence of the clinical symptoms. Ann Neurol 64, 492-498.
7. Wilson RS, Leurgans SE, Boyle PA, Bennett DA (2011) Cognitive decline in prodromal Alzheimer's disease and mild cognitive impairment. Arch Neurol 68, 351-356.
8. Harrison J (2013) Cognitive approaches to early Alzheimer's disease diagnosis. Med Clin North Am 97, 425-438.
9. Villemagne VL, Burnham S, Bourgeat P, Brown B, Ellis KA, Salvado O, Szoeke C, Macaulay SL, Martins R, Maruff P, Ames D, Rowe CC, Masters CL, Australian Imaging Biomarkers, Lifestyle (AIBL) Research, Group (2013) Amyloid p deposition, neurodegeneration, and cognitive decline in sporadic Alzheimer's disease: A prospective cohort study. Lancet Neurol 12, 357-367.
10. Saxton J, Lopez OL, Ratcliff G, Dulberg C, Fried LP, Carlson MC, Newman AB, Kuller L (2004) Preclinical Alzheimer disease. Neuropsychological test performance 1.5 to 8 years prior to onset. Neurology 63, 2341-2347.
11. Alzheimer's Association (2011) Alzheimer's Association Report. 2011 Alzheimer's diseases facts and figures. Alzheimers Dement 7, 208-244.
12. Wimo A, Jonsson L, Bond J, Prince M, Winblad B, Alzheimer Disease International (2013) The worldwide economic impact of dementia 2010. Alzheimers Dement 9, 1-11.
13. Wimo A, Reed CC, Dodel R, Belger M, Jones RW, Happich M, Argimon JM, Bruno G, Novick D, Vellas B, Haro JM (2013) The GERAS study: A prospective observational study of costs and resource use in community dwellers with Alzheimer's disease in three European countries-study design and baseline findings. J Alzheimers Dis 36, 385-399.
14. ALCOVE Project (2013) The European Joint Action on Dementia. Synthesis Report 2013. ALzheimer COoperative Valuation in Europe (ALCOVE), 2013. http://www.alcove-project.eu/images/pdf/ALCOVE-SYNTHESIS-REPORT- VF.pdf, Accessed on February 18, 2014.
15. ILC-UK. The European Dementia Research Agenda, http://ilcuk.org.uk/files/pdf-pdf-165.pdf, Published February 2011, Accessed on February 18, 2014.
16. G8 Dementia Summit Declaration, https://www.gov.uk/government/publications/g8-dementia-summit-agreements, Published 11 December 2013, Accessed on February 18, 2014.
17. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. London: Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment data/file/168220/dh 094051.pdf, Accessed on February 18, 2014.
18. Banerjee S (2010) Living well with dementia-development of the national dementia strategy for England. Int J Geriatr Psychiatry 25, 917-922.
19. Alzheimer Europe. In 2012 Dementia in Europe Yearbook. http://www.alzheimer-europe.org/Policy-in-Practice2/Country-comparisons/National-Dementia-Strategies-diagnosis-treatment-and-research, 2012, Accessed on February 18, 2014.
20. Trova Norme and Concorsi Salute. Presidenza del con-siglio dei ministry conferenza unificata. October 30 2014, http://www.trovanorme.salute.gov.it/norme/dettaglioAtto? id=50972&completo=true, Accessed on March 26, 2015.
21. Brooker D, Fontaine JL, Evans S, Bray J, Saad K (2014) Public health guidance to facilitate timely diagnosis of dementia: ALzheimer's cooperative valuation in Europe recommendations. Int J Geriatr Psychiatry 29, 682-693.
22. De Lepeleire J, Wind AW, Iliffe S, Moniz-Cook ED, Wilcock J, Gonzalez VM, Derksen E, Gianelli MV, Vernooij-Dassen M, Interdem, Group (2008) The primary care diagnosis of dementia in Europe: An analysis using multidisciplinary, multinational expert groups. Aging Ment Health 12, 568-576.
23. Dubois B, Feldman HH, Jacova C, Dekosky ST, Barberger-Gateau P, Cummings J, Delacourte A, Galasko D, Gauthier S, Jicha G, Meguro K, O'brien J, Pasquier F, Robert P, Rossor M, Salloway S, Stern Y, Visser PJ, Scheltens P (2007) Research criteria for the diagnosis of Alzheimer's disease: Revising the NINCDS-ADRDA criteria. Lancet Neurol 6, 734-746.
24. Dubois B, Feldman HH, Jacova C, Hampel H, Molinuevo JL, Blennow K, DeKosky ST, Gauthier S, Selkoe D, Bate-man R, Cappa S, Crutch S, Engelborghs S, Frisoni GB, Fox NC, Galasko D, Habert MO, Jicha GA, Nordberg A, Pasquier F, Rabinovici G, Robert P, Rowe C, Salloway S, Sarazin M, Epelbaum S, de Souza LC, Vellas B, Visser PJ, Schneider L, Stern Y, Scheltens P, Cummings JL (2014) Advancing research diagnosticcriteria for Alzheimer's disease: The IWG-2criteria. Lancet Neurol 13, 614-629.
25. Albert MS, DeKosky ST, Dickson D, Dubois B, Feldman HH, Fox NC, Gamst A, Holtzman DM, Jagust WJ, Petersen RC, Snyder PJ, Carrillo MC, Thies B, Phelps CH (2011) The diagnosis of mild cognitive impairment due to Alzheimer's disease: Recommendations for the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement 7, 270-279.
26. McKhann GM, Knopman DS, Chertkow H, Hyman BT, Jack CR Jr, Kawas CH, Klunk WE, Koroshetz WJ, Manly JJ, Mayeux R, Mohs RC, Morris JC, Rossor MN, Scheltens P, Carrillo MC, Thies B, Weintraub S, Phelps CH (2011) The diagnosisofdementiaduetoAlzheimer'sdisease:Recommen-dations from the National Institute ofAging-Alzheimer Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement 7, 263-269.
27. Cummings JL, Dubois B, Molineuvo JL, Scheltens P (2013) International work group criteria for the diagnosis of Alzheimer disease. Med Clin North Am 97, 363-368.
28. Molinuevo JL, Rami L (2013) Applying the IWG research criteria in clinical practice: Feasibility and ethical issues. Med Clin North Am 97, 477-484.
29. Morris JC, Blennow K, Froelich L, Nordberg A, Soininen H, Waldemar G, Wahlund LO, Dubois B (2014) Harmonized diagnostic criteria for Alzheimer's disease: Recommendations. J Intern Med 275, 204-213.
30. Boise L, Morgan DL, Kaye J, Camicioli R (1999) Delays in the diagnosis of dementia: Perspectives of family caregivers. Am J Alzheimers Dis Other Demen 14, 20-26.
31. De Vugt ME, Verhey FR (2013) The impact of early dementia diagnosis and intervention on informal caregivers. Prog Neurobiol 110, 54-62.
32. Iliffe S, Manthorpe J (2004) The hazards of early recognition of dementia: Arisk assessment. Aging Ment Health 8, 99-105.
33. Mattsson N, Brax, Zetterberg H (2010) To know or not to know: Ethical issues related to early diagnosis of Alzhiemer's disease. Int J Alzheimers Dis 2010, 841941.
34. Milne A (2010) Dementia screening and early diagnosis: The case for and against. Health Risk Soc 12, 65-76.
35. Gauthier S, Leuzy A, Racine E, Rosa-Neto P (2013) Diagnosis and management of Alzheimer's disease: Past, present and future ethical issues. Prog Neurobiol 110, 102-113.
36. Gaugler JE, Ascher-Svanum H, Roth DL, Fafowora T, Siderowf A, Beach TG (2013) Characteristics of patients mis-diagnosed with Alzheimer's disease and their medication use: An analysis of the NACC-UDS database. BMC Geriat 13, 137.
37. Moher D, Liberati A, Tetzlaff J, Altman DG, Group PRISMA (2009) Preferred reporting items for systematic reviews and meta-anlayses: The PRISMA statement. Ann Intern Med 151, 264-269.
38. Carpenter BD, Xiong C, Porensky EK, Lee MM, Brown PJ, Coats M, Johnson D, Morris JC (2008) Reaction to adementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment. J Am Geriatr Soc 56, 405-412.
39. Iliffe S, Manthorpe J, Eden A (2003) Sooner or later? Issues in the early diagnosis of dementia in general practice: A qualitative study. Family Pract 20, 376-381.
40. Fox M, Fox C, Cruickshank W, Penhale B, Poland F, Steel N (2014) Understanding the dementia diagnosis gap in Norfolk and Suffolk: A survey of general practitioners. Qual Prim Care 22, 101-107.
41. Wilcock J, Iliffe S, Griffin M, Jain P, Thuné-Boyle I, Lefford F, Rapp D (2013) Tailored education intervention for primary care to improve the management of dementia: The EVIDEM-ED cluster randomized trial. Trial 14, 397.
42. Littlewood C, Seymour J, Owen V (2010) Does treating Alzheimer's disease early, delay institutionalisation? Int J Geriatr Psychiatry 25, 1307-1309.
43. Bruandet A, Richard F, Bombois S, Maurage CA, Derame-court V, Lebert F, Amouyel P, Pasquier F (2009) Alzheimer disease with cerebrovascular disease and vascular dementia: Clinical features and course compared with Alzheimer disease. J Neurol Neurosurg Psychiatry 80, 133-139.
44. Banerjee S, Wittenberg R (2009) Clinical and cost effectiveness of services for early diagnosis and intervention in dementia. Int J Geriatr Psychiatry 24, 748-754.
45. Weimer DL, Sager MA (2009) Early identification and treatment of Alzheimer's disease: Social and fiscal outcomes. Alzheimers Dement 5, 215-226.
46. Getsios D, Blume S, Ishak KJ, Maclaine G, Hernandez L (2012) An economic evaluation of early assessment for Alzheimer's disease in the United Kingdom. Alzheimers Dement 8, 22-30.
47. National Audit Office. Improving dementia services in England-an interim report. GP survey results. 2010. http://www.nao.org.uk/wp-content/uploads/2010/01/091082.pdf, Accessed on July 17, 2014.
48. Downs M, Turner S, Bryans M, Wilcock J, Keady J, Levin E, O'Carroll R, Howie K, Iliffe S (2006) Effectiveness of educational interventions in improving detection and management of dementia in primary care: Cluster randomised controlled study. BMJ 332, 692-696.
49. Koch T, Iliffe S (2011) Dementia diagnosis and management: A narrative review of changing practice. Br J Gen Pract 61, e513-e525.
50. National Institute for Health and Care Excellence (NICE) (2006) Dementia. Supporting people with dementia and their carers in health and social care. NICE clinical guideline 42. http://www.nice.org.uk/guidance/cg42, Accessed on July 17, 2014.
51. Budd D, Burns LC, L'Italien G, Lapuerta P (2011) Impact of early intervention and disease modification in patients with predementia Alzheimer's disease: A Markov model simulation. Clinico Econ Outcomes Res 3, 189-195.
52. Quentin W, Riedel-Heller SG, Luppa M, Rudolph A, König HH (2010) Cost-of-illness studies of dementia: A systematic review focusing on stage dependency of costs. Acta Psychiatr Scand 121, 243-259.
53. Leicht H, Heinrich S, Heider D, Bachmann C, Bickel H, van den Bussche H, Fuchs A, Luppa M, Maier W, Mösch E, Pentzek M, Rieder-Heller SG, Tebarth F, Werle J, Weyerer S, Wiese B, Zimmermann T, König HH, AgeCoDe study group (2011) Net costs of dementia by disease stage. Acta Psychiatr Scand 124, 384-395.
54. Costa N, Ferlicoq L, Derimeaux-Burel H, Rapp T, Garnault V, Gillette-Guyonnet S, Andrieu S, Vellas B, Lamure M, Grand A, Molinier L (2013) Comparison of informal care time and costs in different age-related dementias: A review. Biomed Res Int 2013, 852368.
55. Rapp T, Andrieu S, Molinier L, Grand A, Cantet C, Mullins CD, Vellas B (2012) Exploring the relationship between Alzheimer's disease severity and longitudinal costs. Value Health 15, 412-419.
56. Barnett JH, Lewis L, Blackwell AD, Taylor M (2014) Early intervention in Alzheimer's disease: A health economic study of the effects of diagnostic timing. BMC Neurology 14, 101.
57. Knapp M, Comas-Herrera A, Wittenberg R, Hu B, King D, Rehill A, Adelaja B (2014) Scenarios of dementia care: What are the impacts on cost and quality of life? June 2014. http://www.pssru.ac.uk/pdf/dp2878.pdf, Accessedon July 17, 2014.
58. Lewis F, Schaffer SK, Sussex J, O'Neill P, Cockcroft L (2014) The trajectory of dementia in the UK-making a difference. Consulting Report, Office of Health Economics, London.
59. Detsky AS (2011) What patients really want from health care. JAMA 306, 2500-2501.
60. Samsi K, Abley C, Campbell S, Keady J, Manthorpe J, Robinson L, Watts S, Bond J (2014) Negotiating a labyrinth: Experiences of assessment and diagnostic journey in cognitive impairment and dementia. Int J Geriatr Psychiatry 29, 58-67.
61. Werner P, Karnieli-Miller O, Eidelman S (2013) Current knowledge and future directions about the disclosure of dementia: A systematic review of the first decade of the 21st century. Alzheimers Dement 9, e74-e88.
62. Blendon RJ, Benson JM, Wikler EM, Weldon KJ, Georges J, Baumgart M, Kallmyer BA (2012) The impact of experience with a family member with Alzheimer's disease on views about the disease across five countries. Int J Alzheimer Dis 2012, 903645.
63. Riva M, Caratozzolo S, Cerea E, Gottardi F, Zanetti M, Chilovi BV, Cristini C, Padovani A, Rozzini L (2014) Diagnosis disclosure and advance care planning inAlzheimer disease opinions of a sample of Italian citizens. Aging Clin Exp Res 26, 427-434.
64. Alzheimer Europe Public attitudes about diagnosis. http://www.alzheimer-europe.org/Research/Value-of-Knowing/Public-attitudes-about-diagnosis, 2011, Accessed on November 24, 2014.
65. Lawrence V, Pickett J, Ballard C, Murray J (2014) Patient and carer views on participating in clinical trials for prodromal Alzheimer's disease and mild cognitive impairment. Int J Geriatr Psychiatry 29, 22-31.
66. Law E, Starr JM, Connelly PJ (2013) Dementia research-whatdodifferent publicgroups want?Asurveybythe Scottish Dementia Clinical Research Network. Dementia 12, 23-28.
67. Antoine P, Pasquier F (2013) Emotional and psychological implications of early AD diagnosis. Med Clin North Am 97, 459-475.
68. Holt GR (2011) Timely diagnosis and disclosureofAlzheimer disease gives patients opportunities to make choices. South Med J 104, 779-780.
69. Tarawneh R, Holtzman DM (2012) The clinical problem of symptomatic Alzheimer disease and mild cognitive impairment. Cold Spring Harb Perspect Med 2, a006148.
70. Garand L, Lingler JH, O'Conner KO, Dew MA (2009) Diagnostic labels, stigma and participation in research related to dementia and mild cognitive impairment. Res Gerontol Nurs 2, 112-121.
71. Werner P, Goldstein D, Buchbinder E (2010) Subjective expe-rienceof family stigma asreportedbychildren of Alzheimer's disease patients. Qual Health Res 20, 159-169.
72. Werner P, Mittleman MS, Goldstein D, Heinik J (2012) Family stigma and caregiver burden in Alzheimer's disease. Gerontologist 52, 89-97.
73. Vernooij-Dassen MJ, Moniz-Cook ED, Woods RT, De Lepeleire J, Leuschner A, Zanetti O, de Rotrou J, Kenny G, Franco M, Peters V, Iliffe S (2005) Factors affecting timely recognition and diagnosis of dementia across Europe: From awareness to stigma. Int J Geriatr Psychiatry 20, 377-386.
74. Hansen EC, Hughes C, Routley G, Robinson AL (2008) General practitioners' experiences and understanding of diagnosing dementia: Factors impacting on early diagnosis. Soc Sci Med 67, 1776-1783.
75. Koch T, Iliffe S, for the EVIDEM-ED project (2010) Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: A systematic review. BMC Fam Prac 11, 52.
76. Sharvill NJ (2012) What are the benefitsofanearly diagnosis? [Letter] BMJ 344, e2747.
77. Bunn F, Goodman C, Sworn K, Rait G, Brayne C, Robinson L, McNeilly E, Iliffe S (2012) Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: A systematic review of qualitative studies. PLoS Med 9, e1001331.
78. Robinson L, Gemski A, Abley C, Bond J, Keady J, Campbell S, Samsi K, Manthorpe J (2011) The transition to dementia-individual and family experiences of receiving a diagnosis: A review. Int Psychogeriatr 23, 1026-1043.
79. Draper B, Peisah C, Snowdon J, Brodaty H (2010) Early dementia diagnosis and the risk of suicide and euthanasia. Alzheimers Dement 6, 75-82.
80. Seyfried LS, Kales HC, Ignacio RV, Conwell Y, Valenstein M (2011) Predictors of suicide in patients with dementia. Alzheimers Dement 7, 567-573.
81. Draper BM (2015) Suicidal behavior and assisted suicide in dementia. Int Psychogeriatr 27, 1601-1611.
82. Ward A, Tadiff S, Dye C, Arrighi HM (2013) Rate of conversion from prodromal Alzheimer's disease to Alzheimer's dementia: A systematic review of the literature. Dement Geri-atr Cogn Disord Extra 3, 320-332.
83. Hort J, O'Brien JT, Gainotti G, Pirttila T, Popescu BO, Rektorova I, Sorbi S, Scheltens P, EFNS Scientist Panel on Dementia (2010) EFNS guidelines for the diagnosis and management of Alzheimer's disease. Eur J Neurol 17, 1236-1248.
84. Iliffe S, Robinson L, Brayne C, Goodman C, Rait G, Manthorpe J, Ashley P, DeNDRoN Primary Care Clinical Studies Group (2009) Primary care and dementia: 1. Diagnosis, screening and disclosure. Int J Geriatr Psychiatry 24, 895-901.
85. Turner S, Iliffe S, Downs M, Wilcock J, Bryans M, Levin E, Keady J, O'Carroll R (2004) General practitioner's knowledge, confidence and attitudes in the diagnosis and management of dementia. Age Ageing 33, 461-467.
86. Waldemar G, Phung KT, Burns A, Georges J, Hansen FR, Iliffe S, Marking C, Rikkert MO, Selmes J, Stoppe G, Sarto-rius N (2007) Access to diagnostic evaluation and treatment for dementia in Europe. Int J Geriatr Psychiatry 22, 47-54.
87. Cahill S, Clark M, O'Connell H, Lawlor B, Coen RF, Walsh C (2008) The attitudes and practices of general practitioners regarding dementia diagnosis in Ireland. Int J Geriatr Psychiatry 23, 663-669.
88. Bradford A, Kunik ME, Schulz P, Williams SP, Singh H (2009) Missed and delayed diagnosis of dementia in primary care: Prevalence and contributing factors. Alzheimer Dis Assoc Disord 23, 306-314.
89. Ahmad S, Orrell M, Iliffe S, Gracie A (2010) GPs' attitudes, awareness, and practice regarding early diagnosis of dementia. Br J Gen Pract 60, e360-e365.
90. Jones RW, Mackell J, Berthet K, Knox S (2010) Assessing attitudes and behaviours surrounding Alzheimer's disease in Europe: Key findings of the Important Perspectives on Alzheimer's Care and Treatment (IMPACT) survey. J Nutr Health Aging 14, 525-530.
91. Martinez-Lage P, Frolich L, Knox S, Berthet K (2010) Assessing physician attitudes and perceptions of Alzheimer's disease across Europe. J Nutr Health Aging 14, 537-544.
92. Manthorpe J, Samsi K, Campbell S, Abley C, Keady J, Bond J, Watts S, Robinson L, Warner J, Iliffe S (2013) From forget-fulnessto dementia: Clinical and commissioning implications of diagnostic experiences. Br J Gen Pract 63, e69-e75.