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Are cognitively impaired individuals adequately represented in community surveys? Recruitment challenges and strategies to facilitate participation in community surveys of older adults. A review

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Abstract

Background: Dementia is the most important age-related disorder and subject to a substantial body of epidemiological research. However, field work in elderly populations faces special challenges which may reduce response rates and invalidate survey results. Therefore, this paper will review more recent prevalence studies of dementia to examine how recruitment issues and their influence on the study outcome have been addressed. Methods: Field studies of the elderly with the main focus on prevalence of dementia published over the last 10 years will be systematically reviewed. The review concerns sampling frames, ways to include institutionalised individuals, response rates and strategies to deal with special challenges of field work in elderly populations such as mortality, fragility and sensory impairment. Furthermore, papers were evaluated regarding the extent to which recruitment outcomes were discussed. Results: The literature is characterised by a disregard of recruitment issues to a varying extent. Mortality, functional dependency and sensory impairment (all positively related to dementia) are barely taken into account in the study design and rarely discussed. As a consequence, cognitively impaired individuals are likely to be underrepresented in most community studies. Conclusion: Strategies to deal with special challenges of field work in the elderly in a systematic manner and to facilitate participation in population surveys of the elderly are crucial and will be outlined. Communication on recruitment issues is essential to improve the validity of study outcomes.

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References

  1. Burns A, Lewis G, Jacoby R, Levy R. Factors affecting survival in Alzheimer's disease. Psychol Med 1991; 21: 363–370.

    Google Scholar 

  2. Agüero-Torres H, Fratiglioni L, Guo Z, Viitanen M, Winblad B. Prognostic factors in very old demented adults: A seven-year follow-up from a population-based survey in Stockholm. J Am Geriatr Soc 1998; 46: 444–452.

    Google Scholar 

  3. Zimber A, Schäufele M, Weyerer S. Changes in homes for the aged and nursing homes: Functional impairments and behavioral disorders of residents are increasing. Gesundheitswesen 1998; 60: 239–246.

    Google Scholar 

  4. Forbes WF, Barham JF. Concerning the prevalence of dementia. Can J Public Health 1991; 82: 185–188.

    Google Scholar 

  5. Black SE, Blessed G, Edwardson JA, Kay DW. Prevalence rates of dementia in an ageing population: Are low rates due to the use of insensitive instruments? Age Ageing 1990; 19: 84–90.

    Google Scholar 

  6. O'Connor DW, Pollitt PA, Brook CP, Reiss BB. A community survey of mental and physical infirmity in nonagenarians. Age Ageing 1989; 18: 411–414.

    Google Scholar 

  7. Ebly EM, Parhad IM, Hogan DB, Fung TS. Prevalence and types of dementia in the very old: Results from the Canadian Study of Health and Aging. Neurology 1994; 44: 1593–1600.

    Google Scholar 

  8. Heeren TJ, Lagaay AM, Hijmans W, Rooymans HG. Prevalence of dementia in the “oldest old” of a Dutch community. J Am Geriatr Soc 1991; 39: 755–759.

    Google Scholar 

  9. Livingston G, Hawkins A, Graham N, Blizard B. The Gospel Oak Study: Prevalence rates of dementia, depression and activity limitation among elderly residents in Inner London. Psychol Med 1990; 20: 137–146.

    Google Scholar 

  10. Rocca WA, Bonaiuto S, Lippi A, Luciani P. Prevalence of clinically diagnosed Alzheimer's disease and other dementing disorders: A door-to-door survey in Appignano, Macerata Province, Italy. Neurology 1990; 40: 626–631.

    Google Scholar 

  11. O'Connor DW, Pollitt PA, Hyde JB, et al. The prevalence of dementia as measured by the Cambridge Mental Disorders of the elderly examination. Acta Psychiatr Scand 1989; 79: 190–198.

    Google Scholar 

  12. Robertson D, Rockwood K, Stolee P. The prevalence of cognitive impairment in an elderly Canadian population. Acta Psychiatr Scand 1989; 80: 303–309.

    Google Scholar 

  13. Canadian Study of Health and Aging Working Group. Canadian Study of Health and Aging: Study methods and prevalence of dementia. Can Med Assoc J 1994; 150: 899–913.

    Google Scholar 

  14. Lobo A, Saz P, Marcos G, Dia JL, De la Camara C. The prevalence of dementia and depression in the elderly community in a southern European population. The Zaragoza study. Arch Gen Psychiatry 1995; 52: 497–506.

    Google Scholar 

  15. Gagnon M, Letenneur L, Dartigues JF, et al. Validity of the Mini-Mental State examination as a screening instrument for cognitive impairment and dementia in French elderly community residents. Neuroepidemiology 1990; 9: 143–150.

    Google Scholar 

  16. Heyman A, Fillenbaum G, Prosnitz B, Raiford K, Burchett B, Clark C. Estimated prevalence of dementia among elderly black and white community residents. Arch Neurol 1991; 48: 594–598.

    Google Scholar 

  17. D'Alessandro R, Pandolfo G, Azzimondi G, Feruglio FS. Prevalence of dementia among elderly people in Troina, Sicily. Eur J Epidemiol 1996; 12: 595–599.

    Google Scholar 

  18. Pi J, Olive JM, Roca J, Masana L. Prevalence of dementia in a semi-rural population of Catalunya, Spain. Neuroepidemiology 1996; 15: 33–41.

    Google Scholar 

  19. Coria F, Gomez de Caso JA, Minguez L, Rodriguez-Artalejo F, Claveria LE. Prevalence of age-associated memory impairment and dementia in a rural community. J Neurol Neurosurg Psychiatry 1993; 56: 973–976.

    Google Scholar 

  20. Riedel-Heller SG, Schork A, Matschinger H, Angermeyer MC. Recruitment procedures and their impact on the prevalence of dementia: Results from the Leipzig Longitudinal Study of the Aged (LEILA75+). Neuroepidemiology 2000; 19: 130–140.

    Google Scholar 

  21. Engedal K. the prevalence of dementia in a sample of elderly Norwegians. Int J Geriatr Psychiatry 1993; 8: 565–570.

    Google Scholar 

  22. Saunders PA, Copeland JR, Dewey ME, Gilmore C, Larkin BA, Phaterpekar H, Scott A. The prevalence of dementia, depression and neurosis in later life: The Liverpool MRC-ALPHA Study. Int J Epidemiol 1993; 22: 838–847.

    Google Scholar 

  23. Cognitive function and dementia in six areas of England and Wales: The distribution of MMSE and prevalence of GMS organicity level in the MRC CFA Study. The Medical Research Council Cognitive Function and Ageing Study (MRC CFAS). Psychol Med 1998; 28: 319–335.

    Google Scholar 

  24. Lopez Pousa S, Llinas Regla J, Vilalta Franch J, Lozano Fernandez de Pinedo L. The prevalence of dementia in Girona. Neurologia 1995; 10: 189–193.

    Google Scholar 

  25. Jonker C, Hooyer C. The Amstel project: Design and first findings. The course of mild cognitive impairment of the aged; a longitudinal 4-year study. Psychiatr J Univ Ott 1990; 15: 207–211.

    Google Scholar 

  26. Waite LM, Broe GA, Creasey H, Grayson DA, Cullen JS, O'Toole B, Edelbrock D, Dobson M. Neurodegenerative and other chronic disorders among people aged 75 years and over in the community. Med J Aust 1997; 167: 429–432.

    Google Scholar 

  27. Roelands M, Wostyn P, Dom H, Baro F. The prevalence of dementia in Belgium: A population-based door-to-door survey in a rural community. Neuroepidemiology 1994; 13: 155–161.

    Google Scholar 

  28. Juva K, Sulkava R, Erkinjuntti T, Valvanne J, Tilvis R. Prevalence of dementia in the city of Helsinki. Acta Neurol Scand 1993; 87: 106–110.

    Google Scholar 

  29. von Strauss E, Viitanen M, De Ronchi D, Winblad B, Fratiglioni L. Aging and the occurrence of dementia: Findings from a population-based cohort with a large sample of nonagenarians. Arch Neurol 1999; 56: 587–592.

    Google Scholar 

  30. Skoog I, Nilsson L, Palmertz B, Andreasson LA. A population-based study of dementia in 85-year-olds. New Eng J Med 1993; 328: 153–158.

    Google Scholar 

  31. Folstein MF, Bassett SS, Anthony JC, Romanoski AJ. Dementia: A case ascertainment in a community survey. J Gerontol 1991; 46: M123-M138.

    Google Scholar 

  32. Ott A, Breteler MM, van Harskamp F, et al. Prevalence of Alzheimer's disease and vascular dementia: Association with education. The Rotterdam study. Br Med J 1995; 310: 970–973.

    Google Scholar 

  33. Obadia Y, Rotily M, Degrand-Guillaud A, et al. The PREMAP Study: Prevalence and risk factors of dementia and clinically diagnosed Alzheimer's disease in Provence, France. Prevalence of Alzheimer's Disease in Provence. Eur J Epidemiol 1997; 13: 247–253.

    Google Scholar 

  34. Henderson AS, Jorm AF, Mackinnon A, et al. A survey of dementia in the Canberra population: Experience with ICD-10 and DSM-III-R criteria. Psychol Med 1994; 24: 473–482.

    Google Scholar 

  35. Snowdon J, Lane F. The Botany survey: A longitudinal study of depression and cognitive impairment in an elderly population. Int J Geriatr Psychiatry 1995; 10: 349–358.

    Google Scholar 

  36. Magnusson H. Mental health of octogenarians in Iceland. An epidemiological study. Acta Psychiatr Scand Suppl 1989; 349: 1–112.

    Google Scholar 

  37. Corso EA, Campo G, Triglio A, Napoli A, Reggio A, Lanaia F. Prevalence of moderate and severe Alzheimer dementia and multi-infarct dementia in the popu-lation of southeastern Sicily. Ital J Neurol Sci 1992; 13: 215–219.

    Google Scholar 

  38. Meller I, Fichter M, Schroeppel H, Beck-Eichinger M. Mental and somatic health and need for care in octo-and nonagenerians. An epidemiological community study. Eur Arch Psychiatry Clin Neurosci 1993; 242: 286–292.

    Google Scholar 

  39. Reischies FM, Geiselmann B, Gessner R, et al. Demenz bei Hochbetagten. Ergebnisse der Berliner Altersstudie. Nervenarzt 1997; 68: 719–729.

    Google Scholar 

  40. Graves AB, Larson EB, Edland SD, et al. Prevalence of dementia and its subtypes in the Japanese American population of King County, Washington state. The Kame Project. Am J Epidemiol 1996; 144: 760–771.

    Google Scholar 

  41. Boersma F, Eefsting JA, van den Brink W, Koeter M, van Tilburg W. Prevalence of dementia in a rural Netherlands population and the influence of DSM-III-R and CAMDEX criteria for the prevalence of mild and more severe forms. J Clin Epidemiol 1998; 51: 189–197.

    Google Scholar 

  42. Cosi V, Citterio A, Ratti MT, Romani A. Pavia memory project: Study design and first results. Ital J Neurol Sci 1995; 16: 141–148.

    Google Scholar 

  43. Callahan CM, Hall KS, Hui SL, Musick BS, Unverzagt FW, Hendrie HC. Relationship of age, education, and occupation with dementia among a community-based sample of African Americans. Arch Neurol 1996; 53: 134–140.

    Google Scholar 

  44. Prencipe M, Casini AR, Ferretti C, Lattanzio MT, Fiorelli M, Culasso F. Prevalence of dementia in an elderly rural population: Effects of age, sex, and education. J Neurol Neurosurg Psychiatry 1996; 60: 628–633.

    Google Scholar 

  45. Copeland JR, Dewey ME, Wood N, Searle R, Davidson IA, McWilliam C. Range of mental illness among the elderly in the community. Prevalence in Liverpool using the GMS-AGECAT package. Br J Psychiatry 1987; 150: 815–823.

    Google Scholar 

  46. McCracken CF, Boneham MA, Copeland JR, et al. Prevalence of dementia and depression among elderly people in black and ethnic minorities. Br J Psychiatry 1997; 171: 269–273.

    Google Scholar 

  47. Norton MC, Breitner JC, Welsh KA, Wyse BW. Characteristics of nonresponders in a community survey of the elderly. J Am Geriatr Soc 1994; 42: 1252–1256.

    Google Scholar 

  48. Launer LJ, Wind AW, Deeg DJ. Nonresponse pattern and bias in a community-based cross-sectional study of cognitive functioning among the elderly. Am J Epidemiol 1994; 139: 803–812.

    Google Scholar 

  49. Brayne C, Calloway P. An epidemiological study of dementia in a rural population of elderly women. Br J Psychiatry 1989; 155: 214–219.

    Google Scholar 

  50. Boersma F, Eefsting JA, van den Brink W, van Tilburg W. Characteristics of non-responders and the impact of non-response on prevalence estimates of dementia. Int J Epidemiol 1997; 26: 1055–1062.

    Google Scholar 

  51. Criqui MH, Barrett-Connor E, Austin M. Differences between respondents and non-respondents in a population-based cardiovascular disease study. Am J Epidemiol 1978; 108: 367–372.

    Google Scholar 

  52. Austin MA, Criqui MH, Barrett-Connor E, Holdbrook MJ. The effect of response bias on the odds ratio. Am J Epidemiol 1981; 114: 137–143.

    Google Scholar 

  53. Janzon L, Hanson BS, Isacsson SO, Lindell SE, Steen B. Factors influencing participation in health surveys. Results from prospective population study ‘Men born in 1914’ in Malmö, Sweden. J Epidemiol Community Health 1986; 40: 174–177.

    Google Scholar 

  54. Heun R, Hardt J, Müller H, Maier W. Selection bias during recruitment of elderly subjects from the general population for psychiatric interviews. Eur Arch Psychiatry Clin Neurosci 1997; 247: 87–92.

    Google Scholar 

  55. Cooper B, Bickel H. Prevalence and incidence of dementing illness in the elderly population: Findings of a longitudinal study in Mannheim. Nervenarzt 1989; 60: 472–482.

    Google Scholar 

  56. Kulsher MG, Davidson WS. Alternative modes of outreach: An experimental comparison. Gerontologist 1978; 18: 355–362.

    Google Scholar 

  57. Heller K, Thompson MG, Valchos-Weber I, Steffan AM, Trueba PE. Support interventions for older adults: Confidante relationships, perceived family report, and meaningful role activity. Am J Community Psychol 1991; 19: 139–146.

    Google Scholar 

  58. Thomassen R, van Schaick HW, Blansjaar BA. Prevalence of dementia over age 100. Neurology 1998; 50: 283–286.

    Google Scholar 

  59. Evans DA, Funkenstein HH, Albert MS, et al. Prevalence of Alzheimer's disease in a community population of older persons. Higher than previously reported. JAMA 1989; 262: 2551–2556.

    Google Scholar 

  60. Clarke M, Jagger C, Anderson J, Battcock T, Kelly F, Stern MC. The prevalence of dementia in a total population: A comparison of two screening instruments. Age Ageing 1991; 20: 396–403.

    Google Scholar 

  61. Gournas G, Madianos MG, Stefanis CN. Psychological functioning and psychiatric morbidity in an elderly urban population in Greece. Eur Arch Psychiatry Clin Neurosci 1992; 242: 127–134.

    Google Scholar 

  62. Letenneur L, Jacqmin H, Commenges D, Barberger-Gateau P, Dartigues JF, Salamon R. Cerebral and functional aging: First results on prevalence and incidence of the Paquid cohort. Methods Inf Med 1993; 32: 249–251.

    Google Scholar 

  63. De Ronchi D, Fratiglioni L, Rucci P, Paternico A, Graziani S, Dalmonte E. The effect of education on dementia occurrence in an Italian population with middle to high socioeconomic status. Neurology 1998; 50: 1231–1238.

    Google Scholar 

  64. Ferini-Strambi L, Marcone A, Garancini P, et al. Dementing disorders in north Italy: Prevalence study in Vescovato, Cremona Province. Eur J Epidemiol 1997; 13: 201–204.

    Google Scholar 

  65. Azzimondi G, D'Alessandro R, Pandolfo G, Feruglio FS. Comparative study of the prevalence of dementia in two Sicilian communities with different psychosocial backgrounds. Neuroepidemiology 1998; 17: 199–209.

    Google Scholar 

  66. Andersen K, Lolk A, Nielsen H, Andersen J, Olsen C, Kragh-Sorensen P. Prevalence of very mild to severe dementia in Denmark. Acta Neurol Scand 1997; 96: 82–87.

    Google Scholar 

  67. Fratiglioni L, Forsell Y, Agüero Torres H, Winblad B. Severity of dementia and institutionalization in the elderly: Prevalence data from an urban area in Sweden. Neuroepidemiology 1994; 13: 79–88.

    Google Scholar 

  68. Engedal K, Gilje K, Laake K. Prevalence of dementia in a Norwegian sample aged 75 years and over and living at home. Compr Gerontol A 1988; 2: 102–106.

    Google Scholar 

  69. Fratiglioni L, Grut M, Forsell Y, Viitanen M. Prevalence of Alzheimer's disease and other dementias in an elderly urban population: Relationship with age, sex, and education. Neurology 1991; 41: 1886–1892.

    Google Scholar 

  70. Fratiglioni L, Viitanen M, Bäckman L, Sandman PO, Winblad B. Occurrence of dementia in advanced age: The study design of the Kungsholmen Project. Neuroepidemiology 1992; 11 Suppl 1: 29–36.

    Google Scholar 

  71. Fichter MM, Meller I, Schröppel H, Steinkirchner R. Dementia and cognitive impairment in the oldest old in the community. Prevalence and comorbidity. Br J Psychiatry 1995; 166: 621–629.

    Google Scholar 

  72. Lindenberger U, Gilberg R, Pötter U. Stichprobenselektivität und Generalisierbarkeit der Ergebnisse der Berliner Altersstudie. In: Mayer KU, Baltes PB (eds), Die Berliner Altersstudie. Berlin: Akademie Verlag, 1996: 85–108.

    Google Scholar 

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Riedel-Heller, S.G., Busse, A. & Angermeyer, M.C. Are cognitively impaired individuals adequately represented in community surveys? Recruitment challenges and strategies to facilitate participation in community surveys of older adults. A review. Eur J Epidemiol 16, 827–835 (2000). https://doi.org/10.1023/A:1007615119222

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