The destigmatisation of dementia through awareness raising campaigns and associated activities has become a key pillar of dementia studies and related activism. This anti-stigma agenda is undermined by a poor evidence base and inadequate operationalisations of stigma. Scambler’s distinction between felt stigma and enacted stigma provides a conceptual basis for improvement. Felt stigma encompasses negative self-appraisals and fears regarding the reactions of others, while enacted stigma describes active discriminatory behaviours. Awareness campaigns based around high-profile spokespeople and pathology-based models of dementia may effectively tackle enacted stigma, but they may also unintentionally exacerbate felt stigma. Distinguishing people with dementia as an exceptional group to elicit public sympathies promotes benevolent othering, unwittingly implying their negative otherness. This is problematic because felt stigma is typically more prevalent and deleterious to wellbeing than enacted stigma.
Alzheimer’s Disease International. (2012). National Alzheimer and dementia plans planned policies and activities: Early detection, access to diagnosis, and stigma reduction. London, UK: Alzheimer’s Disease International.
2.
Alzheimer’s Research UK. (2017). Keeping pace: Progress in dementia research capacity. Cambridge: Alzheimer’s Research UK.
AshworthR. (2017). Perceptions of stigma among people affected by early- and late-onset Alzheimer’s disease. Journal of Health Psychology. DOI: 1359105317720818.
8.
BallengerJ. F. (2006). The biomedical deconstruction of senility and the persistent stigmatization of old age in the United States. In LeibingA.CohenL. (Eds.), Thinking about dementia: Culture, loss, and the anthropology of senility (pp. 106--120). New Brunswick, NJ: Rutgers University Press.
9.
BatschN. (2017). Conceptualising empowerment from the perspectives of people with mild dementia. London, UK: King’s College London.
10.
BatschN.MittelmanM. (2012). World Alzheimer’s report 2012: Overcoming the stigma of dementia. London, UK: Alzheimer’s Disease International.
11.
BeardR. L. (2016). Living with Alzheimer’s: Managing memory loss, identity, and illness. New York: New York University Press.
12.
BlayS. L.PelusoE. T. P. (2010). Public stigma: The community’s tolerance of Alzheimer disease. The American Journal of Geriatric Psychiatry, 18, 163–171.
13.
BurgenerS. C.BergerB. (2008). Measuring perceived stigma in persons with progressive neurological disease: Alzheimer’s dementia and Parkinson’s disease. Dementia, 7, 31–53.
14.
BurgenerS. C.BuckwalterK.PerkhounkovaY.LiuM. F. (2015a). The effects of perceived stigma on quality of life outcomes in persons with early-stage dementia: Longitudinal findings: Part 2. Dementia, 14, 609–632.
15.
BurgenerS. C.BuckwalterK.PerkhounkovaY.LiuM. F.RileyR.EinhornC. J., … Hahn-SwansonC. (2015b). Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1. Dementia, 14, 589–608.
16.
ChanP.ChanT. (2009). The impact of discrimination against older people with dementia and its impact on student nurses professional socialisation. Nurse Education in Practice, 9(4), 221–227.
17.
DixonJ.LaingJ.ValentineC. (2018). A human rights approach to advocacy for people with dementia: A review of current provision in England and Wales. Dementia. DOI: 1471301218770478.
18.
FantuzziG. (2014). The sound of health. Frontiers in Immunology, 5(351). DOI: 10.3389/fimmu.2014.00351.
19.
Fletcher, J. R. (2018a). Renegotiating relationships: theorising shared experiences of dementia within the dyadic career. Dementia. DOI:10.1177/1471301218785511.
20.
Fletcher, J. R. (2018b). A symbolic interactionism of dementia: a tangle in ‘The Alzheimer Conundrum.’ Social Theory & Health, 16(2), 172–187.
21.
Fletcher, J. R. (2019a). Discovering deviance: the visibility mechanisms through which one becomes a person with dementia in interaction. Journal of Aging Studies, 48, 33–39.
22.
Fletcher, J. R. (2019b). Mythical dementia and Alzheimerised senility: discrepant and intersecting understandings of cognitive decline in later life. Social Theory & Health. DOI:10.1057/s41285-019-00117-w
23.
GoffmanE. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall Inc.
24.
GoveD.DownsM.Vernooij-DassenM.SmallN. (2016). Stigma and GPs’ perceptions of dementia. Aging & Mental Health, 20, 391–400.
25.
GoveD.SmallN.DownsM.Vernooij-DassenM. (2017). General practitioners’ perceptions of the stigma of dementia and the role of reciprocity. Dementia, 16(7), 948–964.
26.
GreyF. (2016). Benevolent othering: Speaking positively about mental health service users. Philosophy, Psychiatry & Psychology, 23(3), 241–251.
27.
HornerB.MoyleW.BeattieE.OsborneA.ColquhounS. (2013). The experience of stigma. Australian Journal of Dementia Care, 2, 31–34.
28.
KirkmanA. (2006). Dementia in the news: The media coverage of Alzheimer’s disease. Australasian Journal on Ageing, 25(2), 74–79.
29.
LinkB. G.PhelanJ. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27(1), 363–385.
30.
LionK. M.SzcześniakD.BulińskaK.EvansS. B.EvansS. C.SaibeneF. L., … RymaszewskaJ. (2019). Do people with dementia and mild cognitive impairments experience stigma? A cross-cultural investigation between Italy, Poland and the UK. Aging & Mental Health. DOI: 10.1080/13607863.2019.1577799.
31.
LockM. (2013). The Alzheimer conundrum: Entanglements of dementia and ageing. Woodstock, UK: Princeton University Press.
32.
LundquistT. S.ReadyR. E. (2008). Young adult attitudes about Alzheimer’s disease. American Journal of Alzheimer’s Disease & Other Dementias, 23, 267–273.
33.
MackenzieJ. (2006). Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia, 5(2), 233–247.
34.
MilneA. (2010). The ‘D’word: Reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health, 19(3), 227–233.
National Audit Office. (2007). Improving services and support for people with dementia. London, UK: The Stationery Office.
39.
NussbaumR. L.EllisC. E. (2003). Alzheimer’s disease and Parkinson’s disease. New England Journal of Medicine, 348(14), 1356–1364.
40.
O’ConnorD.MannJ.WiersmaE. (2018). Stigma, discrimination and agency: Diagnostic disclosure as an everyday practice shaping social citizenship. Journal of Aging Studies, 44, 45–51.
41.
O’SullivanG.HockingC.SpenceD. (2014). Dementia: The need for attitudinal change. Dementia, 13(4), 483–497.
42.
PeelE. (2014). ‘The living death of Alzheimer’s’ versus ‘Take a walk to keep dementia at bay’: Representations of dementia in print media and carer discourse. Sociology of Health & Illness, 36, 885–901.
ScamblerG. (2004). Re-framing stigma: Felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Social Theory & Health, 2(1), 29–46.
47.
ScamblerG. (2009). Health‐related stigma. Sociology of Health & Illness, 31(3), 441–455.
48.
ScamblerG.HopkinsA. (1986). Being epileptic: Coming to terms with stigma. Sociology of Health & Illness, 8(1), 26–43.
49.
SchneiderJ. W.ConradP. (1980). In the closet with illness: Epilepsy, stigma potential and information control. Social Problems, 28(1), 32–44.
50.
SwafferK. (2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13(6), 709–716.
51.
TalbotC.O’DwyerS.ClareL.HeatonJ.AndersonJ. (2018). Identifying people with dementia on Twitter. Dementia. DOI: 1471301218792122.
52.
Van GorpB.VercruysseT. (2012). Frames and counter-frames giving meaning to dementia: A framing analysis of media content. Social Science & Medicine, 74, 1274–1281.
53.
WernerP. (2005). Social distance towards a person with Alzheimer’s disease. International Journal of Geriatric Psychiatry, 20, 182–188.
54.
WernerP.DavidsonM. (2004). Emotional reactions of lay persons to someone with Alzheimer’s disease. International Journal of Geriatric Psychiatry, 19, 391–397.
55.
WernerP.GoldsteinD.BuchbinderE. (2010). Subjective experience of family stigma as reported by children of Alzheimer’s disease patients. Qualitative Health Research, 20, 159–169.
56.
WernerP.HeinikJ. (2008). Stigma by association and Alzheimer’s disease. Aging & Mental Health, 12, 92–99.
57.
WernerP.MittelmanM.GoldsteinD.HeinikJ. (2012). Family stigma and caregiver burden in Alzheimer’s disease. The Gerontologist, 52, 89–97.
58.
WhitehouseP. J.GeorgeD. (2008). The myth of Alzheimer’s: What you aren’t being told about today’s most dreaded diagnosis. New York: St Martin’s Griffin.
