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Published in: European Journal of Ageing 4/2012

01-12-2012 | Critical Positions in Ageing Research

Dementia worry: a psychological examination of an unexplored phenomenon

Authors: Eva-Marie Kessler, Catherine E. Bowen, Marion Baer, Lutz Froelich, Hans-Werner Wahl

Published in: European Journal of Ageing | Issue 4/2012

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Abstract

According to recent surveys, dementia worry (DW) is a widespread phenomenon in mid-life and old age, at least in Western populations. DW has been shown to be only loosely related to sociodemographic factors. Unfortunately, the concept of DW has found only very little conceptual and empirical attention in previous research. In this conceptual review, we take (mostly) a psychological approach to DW. First, we define DW as an emotional response to the perceived threat of developing dementia. We then conceptualise DW as a hybrid, combining elements of ageing anxiety and health anxiety. On the population level, we argue that the high prevalence of DW may be reflective of the increasing awareness of dementia in times of increasing ‘‘dementia encounters’, widespread misperceptions of risks and consequences of dementia and a perceived lack of coping resources. Finally, we propose that DW may affect a range of important behaviours, such as how people interpret evidence of their own or others’ age-related cognitive changes, how they interact with people with dementia, how they anticipate and plan for their future, how they engage in screening and prevention behaviours and how they exploit healthcare resources. We conclude with suggestions for future research, including a further in-depth investigation of psychological and micro-/macrosocial factors associated with DW.
Literature
go back to reference Alberts NM, Hadjistavropoulos HD, Pugh NE, Jones SL (2011) Dementia anxiety among older adult caregivers: an exploratory study of older adult caregivers in Canada. Int Psychogeriatr 23:880–886. doi:10.1017/S1041610211000299 CrossRef Alberts NM, Hadjistavropoulos HD, Pugh NE, Jones SL (2011) Dementia anxiety among older adult caregivers: an exploratory study of older adult caregivers in Canada. Int Psychogeriatr 23:880–886. doi:10.​1017/​S104161021100029​9 CrossRef
go back to reference Alzheimer’s Association (2003) Alzheimer’s Association survey of Americans’ knowledge and opinions about Alzheimer’s disease. Alzheimer’s Association, Chicago Alzheimer’s Association (2003) Alzheimer’s Association survey of Americans’ knowledge and opinions about Alzheimer’s disease. Alzheimer’s Association, Chicago
go back to reference Alzheimer’s Association & American Heart Association (2008) Findings from the African American heart and brain health survey. Alzheimer’s Association, Chicago Alzheimer’s Association & American Heart Association (2008) Findings from the African American heart and brain health survey. Alzheimer’s Association, Chicago
go back to reference Anderson LA, Day KL, Beard RL, Reed PS, Wu B (2009) The public’s perceptions about cognitive health and Alzheimer’s disease among the U.S. population: a national review. Gerontologist 49:3–11. doi:10.1093/geront/gnp088 CrossRef Anderson LA, Day KL, Beard RL, Reed PS, Wu B (2009) The public’s perceptions about cognitive health and Alzheimer’s disease among the U.S. population: a national review. Gerontologist 49:3–11. doi:10.​1093/​geront/​gnp088 CrossRef
go back to reference Aquilina C, Hughes JC (2006) The return of the living dead: agency lost and found? In: Hughes JC, Louw SJ, Sabat SR (eds) Dementia: mind, meaning, and the person. Oxford University Press, Oxford, pp 143–161 Aquilina C, Hughes JC (2006) The return of the living dead: agency lost and found? In: Hughes JC, Louw SJ, Sabat SR (eds) Dementia: mind, meaning, and the person. Oxford University Press, Oxford, pp 143–161
go back to reference Axelman K, Lannfelt L, Almkvist O, Carlsson M (2003) Life situation, coping and quality of life in people with high and low risk of developing Alzheimer’s Disease. Dement Geriatr Cogn Disord 16:220–228. doi:10.1159/000072806 CrossRef Axelman K, Lannfelt L, Almkvist O, Carlsson M (2003) Life situation, coping and quality of life in people with high and low risk of developing Alzheimer’s Disease. Dement Geriatr Cogn Disord 16:220–228. doi:10.​1159/​000072806 CrossRef
go back to reference Banerjee S, Samsi K, Petrie CD, Alvir J, Treglia M, Schwam EM, del Valle M (2009) What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. Int J Geriatr Psychiatry 24:15–24. doi:10.1002/gps.2090 CrossRef Banerjee S, Samsi K, Petrie CD, Alvir J, Treglia M, Schwam EM, del Valle M (2009) What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. Int J Geriatr Psychiatry 24:15–24. doi:10.​1002/​gps.​2090 CrossRef
go back to reference Becker E (1973) The denial of death. Free Press, New York Becker E (1973) The denial of death. Free Press, New York
go back to reference Berger PL, Luckmann T (2007) Die gesellschaftliche Konstruktion der Wirklichkeit: eine Theorie der Wissenssoziologie (The social construction of reality: a theory of the science of knowledge), 1st edn. Fischer, Frankfurt Berger PL, Luckmann T (2007) Die gesellschaftliche Konstruktion der Wirklichkeit: eine Theorie der Wissenssoziologie (The social construction of reality: a theory of the science of knowledge), 1st edn. Fischer, Frankfurt
go back to reference Clare L, Rowlands J, Bruce E, Surr C, Downs M (2008) ‘I don’t do like I used to do’: a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care. Soc Sci Med 66:2366–2377. doi:10.1016/j.socscimed.2008.01.045 CrossRef Clare L, Rowlands J, Bruce E, Surr C, Downs M (2008) ‘I don’t do like I used to do’: a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care. Soc Sci Med 66:2366–2377. doi:10.​1016/​j.​socscimed.​2008.​01.​045 CrossRef
go back to reference Davey GC, Tallis F (eds) (1994) Worrying: perspectives on theory, assessment and treatment. Wiley, Oxford Davey GC, Tallis F (eds) (1994) Worrying: perspectives on theory, assessment and treatment. Wiley, Oxford
go back to reference Deutsche Gesellschaft für Psychiatrie, Psychotherapie und Nervenheilkunde (DGPPN) & Deutsche Gesellschaft für Neurologie (DGN) [German Association for Psychiatry and Psychotherapy & German Association for Neurology] (2009) S3-Leitlinie Demenzen [Guidelines for dementia]. DGPNN and DGN, Bonn Deutsche Gesellschaft für Psychiatrie, Psychotherapie und Nervenheilkunde (DGPPN) & Deutsche Gesellschaft für Neurologie (DGN) [German Association for Psychiatry and Psychotherapy & German Association for Neurology] (2009) S3-Leitlinie Demenzen [Guidelines for dementia]. DGPNN and DGN, Bonn
go back to reference Dittmann-Kohli F, Lachman ME, Kliegl R, Baltes PB (1991) Effects of cognitive training and testing on intellectual efficacy beliefs in elderly adults. J Gerontol 46:162–164. doi:10.1093/geronj/46.4.P162 Dittmann-Kohli F, Lachman ME, Kliegl R, Baltes PB (1991) Effects of cognitive training and testing on intellectual efficacy beliefs in elderly adults. J Gerontol 46:162–164. doi:10.​1093/​geronj/​46.​4.​P162
go back to reference George D, Whitehouse P (2007) Dementia and mild cognitive impairment in social and cultural context. In: Dannefer D, Phillipson C (eds) The SAGE handbook of social gerontology. Sage, London, pp 343–355 George D, Whitehouse P (2007) Dementia and mild cognitive impairment in social and cultural context. In: Dannefer D, Phillipson C (eds) The SAGE handbook of social gerontology. Sage, London, pp 343–355
go back to reference Goffman E (1963) Stigma: notes on the management of spoiled identity. Prentice Hall, Englewood Cliffs Goffman E (1963) Stigma: notes on the management of spoiled identity. Prentice Hall, Englewood Cliffs
go back to reference Hay JL, Buckley TR, Ostroff JS (2005) The role of cancer worry in cancer screening: a theoretical and empirical review of the literature. Psychooncology 14:517–534. doi:10.1002/pon.864 CrossRef Hay JL, Buckley TR, Ostroff JS (2005) The role of cancer worry in cancer screening: a theoretical and empirical review of the literature. Psychooncology 14:517–534. doi:10.​1002/​pon.​864 CrossRef
go back to reference Hughes JC, Louw SJ, Sabat SR (eds) (2006) Dementia: mind, meaning, and the person. University Press, Oxford Hughes JC, Louw SJ, Sabat SR (eds) (2006) Dementia: mind, meaning, and the person. University Press, Oxford
go back to reference Kessler EM, Schwender C (2012) Giving dementia a face? The portrayal of older people with dementia in German weekly news magazines between the year 2000 and 2009. J Gerontol B Psychol Soc Sci. doi:10.1093/geronb/gbr156 Kessler EM, Schwender C (2012) Giving dementia a face? The portrayal of older people with dementia in German weekly news magazines between the year 2000 and 2009. J Gerontol B Psychol Soc Sci. doi:10.​1093/​geronb/​gbr156
go back to reference Lineweaver TT, Hertzog C (1998) Adults’ efficacy and control beliefs regarding memory and aging: separating general from personal beliefs. Neuropsychol Dev Cogn B Aging Neuropsychol Cogn 5:264–296. doi:10.1076/anec.5.4.264.771 CrossRef Lineweaver TT, Hertzog C (1998) Adults’ efficacy and control beliefs regarding memory and aging: separating general from personal beliefs. Neuropsychol Dev Cogn B Aging Neuropsychol Cogn 5:264–296. doi:10.​1076/​anec.​5.​4.​264.​771 CrossRef
go back to reference Low L-F, Anstey KJ (2007) The public’s perception of the plausibility of dementia risk factors is not influenced by scientific evidence. Dement Geriatr Cogn Disord 23:202–206. doi:10.1159/000099038 CrossRef Low L-F, Anstey KJ (2007) The public’s perception of the plausibility of dementia risk factors is not influenced by scientific evidence. Dement Geriatr Cogn Disord 23:202–206. doi:10.​1159/​000099038 CrossRef
go back to reference Low L-F, Anstey KJ, Lackersteen SM, Camit M, Harrsion F, Draper B, Brodaty H (2011) Recognition, attitudes and causal beliefs regarding dementia in Italian, Greek and Chinese Australians. Dement Geriatr Cogn Disord 30:499–508. doi:10.1159/000321667 CrossRef Low L-F, Anstey KJ, Lackersteen SM, Camit M, Harrsion F, Draper B, Brodaty H (2011) Recognition, attitudes and causal beliefs regarding dementia in Italian, Greek and Chinese Australians. Dement Geriatr Cogn Disord 30:499–508. doi:10.​1159/​000321667 CrossRef
go back to reference MetLife Foundation (2006) Americans fear Alzheimer’s more than heart disease, diabetes or stroke, but few prepare. MetLife Foundation, New York MetLife Foundation (2006) Americans fear Alzheimer’s more than heart disease, diabetes or stroke, but few prepare. MetLife Foundation, New York
go back to reference MetLife Foundation (2011) What America thinks. The MetLife Foundation Alzheimer’s survey, New York MetLife Foundation (2011) What America thinks. The MetLife Foundation Alzheimer’s survey, New York
go back to reference Missotten P, Ylieff M, Di Notte D, Paquay L, De Lepeleire J, Buntinx F, Fontaine O (2007) Quality of life in dementia: a 2-year follow-up study. Int J Geriatr Psychiatry 22:1201–1207. doi:10.1002/gps.1814 CrossRef Missotten P, Ylieff M, Di Notte D, Paquay L, De Lepeleire J, Buntinx F, Fontaine O (2007) Quality of life in dementia: a 2-year follow-up study. Int J Geriatr Psychiatry 22:1201–1207. doi:10.​1002/​gps.​1814 CrossRef
go back to reference Post SG (2000) The concept of Alzheimer’s disease in a hypercognitive society. In: Whitehouse PJ, Maurer K, Ballenger JF (eds) Concepts of Alzheimer disease: biological, clinical, and cultural perspectives. Johns Hopkins University Press, Baltimore, pp 245–256 Post SG (2000) The concept of Alzheimer’s disease in a hypercognitive society. In: Whitehouse PJ, Maurer K, Ballenger JF (eds) Concepts of Alzheimer disease: biological, clinical, and cultural perspectives. Johns Hopkins University Press, Baltimore, pp 245–256
go back to reference Reisberg B, Prichep L, Mosconi L, John ER, Glodzik-Sobanska L, Boksay I, Monteiro I, Torossian C, Vedvyas A, Ashraf N, Jamil IA, de Leon MJ (2008) The pre-mild cognitive impairment, subjective cognitive impairment stage of Alzheimer’s disease. Alzheimers Dement 4(Suppl 1):S98–S108. doi:10.1016/j.jalz.2007.11.017 CrossRef Reisberg B, Prichep L, Mosconi L, John ER, Glodzik-Sobanska L, Boksay I, Monteiro I, Torossian C, Vedvyas A, Ashraf N, Jamil IA, de Leon MJ (2008) The pre-mild cognitive impairment, subjective cognitive impairment stage of Alzheimer’s disease. Alzheimers Dement 4(Suppl 1):S98–S108. doi:10.​1016/​j.​jalz.​2007.​11.​017 CrossRef
go back to reference Roberts JS, Connell CM (2000) Illness representations among first-degree relatives of people with Alzheimer’s disease. Alzheimer Dis Assoc Disord 14:129–136CrossRef Roberts JS, Connell CM (2000) Illness representations among first-degree relatives of people with Alzheimer’s disease. Alzheimer Dis Assoc Disord 14:129–136CrossRef
go back to reference Rosenstock IM (1974) Historical origins of the Health Belief Model. Health Educ Monogr 2:328–335 Rosenstock IM (1974) Historical origins of the Health Belief Model. Health Educ Monogr 2:328–335
go back to reference Sabat SR (2006) Mind, meaning, and personhood in dementia: the effects of positioning. In: Hughes JC, Louw SJ, Sabat SR (eds) Dementia: Mind, meaning, and the person. Oxford University Press, Oxford, pp 287–300 Sabat SR (2006) Mind, meaning, and personhood in dementia: the effects of positioning. In: Hughes JC, Louw SJ, Sabat SR (eds) Dementia: Mind, meaning, and the person. Oxford University Press, Oxford, pp 287–300
go back to reference Sattler C, Erickson KI, Toro P, Schröder J (2011) Physical fitness as a protective factor for cognitive impairment in a prospective population-based study in Germany. J Alzheimers Dis 26:709–718. doi:10.3233/JAD-2011-110548 Sattler C, Erickson KI, Toro P, Schröder J (2011) Physical fitness as a protective factor for cognitive impairment in a prospective population-based study in Germany. J Alzheimers Dis 26:709–718. doi:10.​3233/​JAD-2011-110548
go back to reference Solomon S, Greenberg J, Pyszczynski T (1991) A terror management theory of social behavior: the psychological functions of self-esteem and cultural worldviews. In: Zanna MP (ed) Advances in experimental social psychology. Academic Press, New York, pp 93–159 Solomon S, Greenberg J, Pyszczynski T (1991) A terror management theory of social behavior: the psychological functions of self-esteem and cultural worldviews. In: Zanna MP (ed) Advances in experimental social psychology. Academic Press, New York, pp 93–159
go back to reference Vernooij-Dassen MJFJ, Moniz-Cook ED, Woods RT, Lepeleire JD, Leuschner A, Zanetti O, Rotrou Jd, 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. doi:10.1002/gps.1302 CrossRef Vernooij-Dassen MJFJ, Moniz-Cook ED, Woods RT, Lepeleire JD, Leuschner A, Zanetti O, Rotrou Jd, 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. doi:10.​1002/​gps.​1302 CrossRef
go back to reference Wadley VG, Haley WE (2001) Diagnostic attributions versus labeling: impact of Alzheimer‘s disease and major depression diagnoses on emotions, beliefs, and helping intentions of family members. J Gerontol B Psychol Sci Soc Sci 56(4):244–252. doi:10.1093/geronb/56.4.P244 CrossRef Wadley VG, Haley WE (2001) Diagnostic attributions versus labeling: impact of Alzheimer‘s disease and major depression diagnoses on emotions, beliefs, and helping intentions of family members. J Gerontol B Psychol Sci Soc Sci 56(4):244–252. doi:10.​1093/​geronb/​56.​4.​P244 CrossRef
go back to reference Wang H-X, Karp A, Winblad B, Fratiglioni L (2002) Late-life engagement in social and leisure activities is associated with a decreased risk of dementia: a longitudinal study from the Kungsholmen Project. Am J Epidemiol 155:1081–1087. doi:10.1093/aje/155.12.1081 CrossRef Wang H-X, Karp A, Winblad B, Fratiglioni L (2002) Late-life engagement in social and leisure activities is associated with a decreased risk of dementia: a longitudinal study from the Kungsholmen Project. Am J Epidemiol 155:1081–1087. doi:10.​1093/​aje/​155.​12.​1081 CrossRef
go back to reference Wurm S, Tesch-Römer C, Tomasik MJ (2007) Longitudinal findings on aging-related cognitions, control beliefs, and health in later life. J Gerontol B Psychol Sci Soc Sci 62B:156–164CrossRef Wurm S, Tesch-Römer C, Tomasik MJ (2007) Longitudinal findings on aging-related cognitions, control beliefs, and health in later life. J Gerontol B Psychol Sci Soc Sci 62B:156–164CrossRef
go back to reference Yeo LH, Horan MA, Jones M, Pendleton N (2007) Perceptions of risk and prevention of dementia in the healthy elderly. Dement Geriatr Cogn Disord 23:368–371. doi:10.1159/000101338 CrossRef Yeo LH, Horan MA, Jones M, Pendleton N (2007) Perceptions of risk and prevention of dementia in the healthy elderly. Dement Geriatr Cogn Disord 23:368–371. doi:10.​1159/​000101338 CrossRef
Metadata
Title
Dementia worry: a psychological examination of an unexplored phenomenon
Authors
Eva-Marie Kessler
Catherine E. Bowen
Marion Baer
Lutz Froelich
Hans-Werner Wahl
Publication date
01-12-2012
Publisher
Springer Netherlands
Published in
European Journal of Ageing / Issue 4/2012
Print ISSN: 1613-9372
Electronic ISSN: 1613-9380
DOI
https://doi.org/10.1007/s10433-012-0242-8

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