Int J Geriatr Psychiatry. 2022 Feb;37(2). doi: 10.1002/gps.5672.
Development and psychometric evaluation of the Dementia Public Stigma Scale.
International journal of geriatric psychiatry
Sarang Kim, Claire Eccleston, Shannon Klekociuk, Peta S Cook, Kathleen Doherty
Affiliations
Affiliations
- Wicking Dementia Research & Education Centre, College of Health and Medicine, University of Tasmania, Hobart, Tasmania, Australia.
PMID: 34997624
DOI: 10.1002/gps.5672
Abstract
OBJECTIVES: Dementia is a stigmatised condition and dementia-related stigma is associated with low self-esteem, poor psychological wellbeing, social isolation and poor quality of life in people living with dementia and their families. There is, however, a lack of valid measures that accurately quantify dementia-related stigma in the general public. This study reports the initial psychometric evaluation of a new tool designed to measure dementia-related public stigma amongst community dwelling adults.
METHODS: A sample of 3250 individuals aged 18 and over completed an online survey on their beliefs and feelings regarding dementia and people living with dementia, and their behavioural intentions towards people living with dementia. Exploratory factor analysis (EFA) using Maximum Likelihood with oblique rotation was performed to extract factors. Confirmatory factor analysis (CFA) was used to confirm the factor structure using goodness-of-fit index (GFI), the comparative fit index (CFI), and the root mean square error of approximation (RMSEA) to evaluate the model fit. Internal consistency was measured for the final scale version.
RESULTS: EFA resulted in a 16-item, 5-factor model (Fear and discomfort, Negative perceptions, Positive perceptions, Burden, and Exclusion) that explained 50.43% of the total variance. The CFA-estimated model demonstrated a good fit; all fit indices were larger than 0.95 (GFI = 0.967, CFI = 0.959) and smaller than 0.05 (RMSEA = 0.048). The final scale showed moderate to high reliability scores ranging from α = 0.738 to 0.805.
CONCLUSIONS: The Dementia Public Stigma Scale is a tool with reliability, and some demonstrated validity. This scale can be used to measure the public stigma of dementia amongst adults and may be used in the development and evaluation of interventions aimed at dementia-related stigma reduction.
© 2021 John Wiley & Sons Ltd.
Keywords: dementia; discrimination; scale development; stigma; validation
References
- Prince M, Wimo A, Guerchet M, Ali G-C, Wu Y-T, Prina M. World Alzheimer Report 2015: The global impact of dementia. An analysis of prevalence, incidence, cost and trends; 2015. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf - PubMed
- Batsch NL, Mittelman MS. World Alzheimer Report 2012: Overcoming the stigma of dementia; 2012. https://www.alzint.org/u/WorldAlzheimerReport2012.pdf - PubMed
- O'Connor D, Mann J, Wiersma E. Stigma, discrimination and agency: diagnostic disclosure as an everyday practice shaping social citizenship. J Aging Stud. 2018;44:45-51. https://doi.org/10.1016/j.jaging.2018.01.010 - PubMed
- Alzheimer's Association. Alzheimer's disease facts and figures. Alzheimers Dement. 2014;10(2):e47-92. https://doi.org/10.1016/j.jalz.2014.02.001 - PubMed
- MetLife Foundation. What American thinks: MetLife Foundation Alzheimer's Survey; 2011. https://www.metlife.com/content/dam/microsites/about/corporate-profile/alzheimers-2011.pdf - PubMed
- StollzNow Research. Dementia is everybody's business. Vol. 45. Health Report; 2011. - PubMed
- Mukadam N, Livingston G. Reducing the stigma associated with dementia: approaches and goals. Aging Health. 2012;8(4):377-386. - PubMed
- Livingston G, Cooper C. The need for dementia care services. In: de Waal H, Lyketsos C, Ames D, O'Brien, eds. Designing and delivering dementia services. John Wiley & Sons, Ltd; 2013:3-16. https://doi.org/10.1002/9781118378663.ch1 - PubMed
- Stites SD, Milne R, Karlawish J. Advances in Alzheimer's imaging are changing the experience of Alzheimer's disease. Alzheimer's Dement Diagnosis, Assess Dis Monit. 2018;10:285-300. - PubMed
- Katsuno T. Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing Soc. 2005;25(2):197-214. https://doi.org/10.1017/S0144686X0400279X - PubMed
- Werner P, Mittelman MS, Goldstein D, Heinik J. Family stigma and caregiver burden in Alzheimer’s disease. Gerontologist. 2012;52(1):89-97. https://doi.org/10.1093/geront/gnr117 - PubMed
- Kahn PV, Wishart HA, Randolph JS, Santulli RB. Caregiver stigma and burden in memory disorders: an evaluation of the effects of caregiver type and gender. Curr Gerontol Geriatr Res. 2016;2016:8316045. https://doi.org/10.1155/2016/8316045 - PubMed
- Blay SL, Peluso ETP. Public stigma: the community's tolerance of Alzheimer disease. Am J Geriatr Psychiatr. 2010;18(2):163-171. - PubMed
- Burgener SC, Buckwalter K, Perkhounkova Y, et al. Perceived stigma in persons with early-stage dementia: longitudinal findings: Part 1. Dementia. 2015;14(5):589-608. https://doi.org/10.1177/1471301213508399 - PubMed
- Stites SD, Johnson R, Harkins K, Sankar P, Xie D, Karlawish J. Identifiable characteristics and potentially malleable beliefs predict stigmatizing attributions toward persons with Alzheimer’s disease dementia: results of a survey of the U.S. general public. Health Commun. 2018;33(3):264-273. https://doi.org/10.1080/10410236.2016.1255847 - PubMed
- Low LF, McGrath M, Swaffer K, Brodaty H. Communicating a diagnosis of dementia: a systematic mixed studies review of attitudes and practices of health practitioners. Dementia. 2019;18(7-8):2856-2905. - PubMed
- Gove D, Downs M, Vernooij-Dassen M, Small N. Stigma and GPs’ perceptions of dementia. Aging Ment Health. 2016;20(4):391-400. https://doi.org/10.1080/13607863.2015.1015962 - PubMed
- Corrigan PW, Watson AC. Understanding the impact of stigma on people with mental illness. World Psychiatr. 2002;1(1):16-20. - PubMed
- Werner P, Heinik J. Stigma by association and Alzheimer's disease. Aging Ment Health. 2008;12(1):92-99. https://doi.org/10.1080/13607860701616325 - PubMed
- Jones N, Corrigan PW. Understanding stigma. In: Corrigan PW, ed. The stigma of disease and disability: Understanding causes and overcoming injustices. American Psychological Association; 2014:9-34. - PubMed
- Werner P. Stigma and Alzheimer's disease: a systematic review of evidence, theory, and methods. In: Corrigan PW, ed. The stigma of disease and disability: Understanding causes and overcoming injustices. American Psychological Association; 2014:223-244. - PubMed
- Link BG, Cullen FT, Struening E, Shrout PE, Dohrenwend BP. A modified labeling theory approach to mental disorders: an empirical assessment. Am Sociol Rev. 1989;54(3):400-423. https://doi.org/10.2307/2095613 - PubMed
- Corrigan PW. Mental health stigma as social attribution: implications for research methods and attitude change. Clin Psychol Sci Pract. 2000;7(1):48-67. https://doi.org/10.1093/clipsy.7.1.48 - PubMed
- Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Sociol. 2001;27:363-385. - PubMed
- Rüsch N, Angermeyer MC, Corrigan PW. Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. Eur Psychiatr. 2005;20(8):529-539. https://doi.org/10.1016/j.eurpsy.2005.04.004 - PubMed
- Nguyen T, Li X. Understanding public-stigma and self-stigma in the context of dementia: a systematic review of the global literature. Dement (London). 2020;19(2):148-181. https://doi.org/10.1177/1471301218800122 - PubMed
- Herrmann LK, Welter E, Leverenz J, et al. A systematic review of dementia-related stigma research: can we move the stigma dial? Am J Geriatr Psychiatr. 2018;26(3):316-331. https://doi.org/10.1016/j.jagp.2017.09.006 - PubMed
- Piver LC, Nubukpo P, Faure A, Dumoitier N, Couratier P, Clément JP. Describing perceived stigma against Alzheimer's disease in a general population in France: the STIGMA survey. Int J Geriatr Psychiatr. 2013;28(9):933-938. https://doi.org/10.1002/gps.3903 - PubMed
- Woo BKP, Chung JOP. Public stigma associated with dementia in a Chinese-American immigrant population. J Am Geriatr Soc. 2013;61(10):1832-1833. https://doi.org/10.1111/jgs.12472 - PubMed
- Cheng S, Lam LCW, Chan LCK, et al. The effets of exposure to scenarios about dementia on stigma and attitudes toward dementia care in a Chinese community. Int Psychogeriatr. 2011;23(9):1433-1441. - PubMed
- Werner P, Goldstein D, Heinik J. Development and validity of the Family Stigma in Alzheimer's Disease Scale (FS-ADS). Alzheimer Dis Assoc Disord. 2011;25(1):42-48. https://doi.org/10.1097/WAD.0b013e3181f32594 - PubMed
- O'Connor ML, McFadden SH. Development and psychometric validation of the dementia attitudes scales. Int J Alzheimer's Dis. 2010;2010:1-10. https://doi.org/10.4061/2010/454218 - PubMed
- Stites SD, Rubright JD, Karlawish J. What features of stigma do the public most commonly attribute to Alzheimer's disease dementia? Results of a survey of the U.S. general public. Alzheimers Dement. 2018;14(7):925-932. https://doi.org/10.1016/j.jalz.2018.01.006 - PubMed
- Cohen M, Werner P, Azaiza F. Emotional reactions of Arab lay persons to a person with Alzheimer's disease. Aging Ment Health. 2009;13(1):31-37. https://doi.org/10.1080/13607860802154440 - PubMed
- Werner P, Jabel HA, Reuveni Y, Prilutzki D. Stigmatic beliefs toward a person with Alzheimer’s disease among high-school students: does majority-minority status make a difference? Educ Gerontol. 2017;43(12):609-610. https://doi.org/10.1080/03601277.2017.1376461 - PubMed
- Alzheimer's Disease International. World Alzheimer Report 2019: Attitudes to dementia; 2019. https://www.alzint.org/u/WorldAlzheimerReport2019.pdf - PubMed
- Low L-F, Purwaningrum F. Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma. BMC Geriatr. 2020;20(1):477. https://doi.org/10.1186/s12877-020-01754-x - PubMed
- Eccleston C, Doherty K, Bindoff A, Robinson A, Vickers J, McInerney F. Building dementia knowledge globally through the Understanding Dementia Massive Open Online Course (MOOC). NPJ Sci Learn. 2019;4(1):3. https://doi.org/10.1038/s41539-019-0042-4 - PubMed
- Nunnally JC. Psychometric Theory. McGraw-Hill; 1978. - PubMed
- Tabachnick B, Fidell L. Using Multivariate Statistics. 6th ed. Pearson Education; 2013. - PubMed
- Costello AB, Osborne JW. Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Pract Assess Res Eval. 2005;10:1-9. - PubMed
- Streiner DL. Figuring out factors: the use and misuse of factor analysis. Can J Psychiatry. 1994;39(3):135-140. https://doi.org/10.1177/070674379403900303 - PubMed
- Hu Lt, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model A Multidiscip J. 1999;6(1):1-55. https://doi.org/10.1080/10705519909540118 - PubMed
- Eisinga R, Grotenhuis Mt, Pelzer B. The reliability of a two-item scale: Pearson, Cronbach, or Spearman-Brown? Int J public health. 2013;58(4):637-642. https://doi.org/10.1007/s00038-012-0416-3 - PubMed
- Pituch K, Stevens J. Applied Multivariate Statistics for the Social Sciences: Analyses with SAS and IBM’s SPSS. 6th ed. Routledge; 2016. - PubMed
- Babyak MA, Green SB. Confirmatory factor analysis: an introduction for psychosomatic medicine researchers. Psychosom Med. 2010;72(6):587-597. https://doi.org/10.1097/PSY.0b013e3181de3f8a - PubMed
- Cheung GW, Rensvold RB. Evaluating goodness-of-fit indexes for testing measurement invariance. Struct Equ Model A Multidiscip J. 2002;9(2):233-255. https://doi.org/10.1207/S15328007SEM0902_5 - PubMed
- Zimmermann M. Alzheimer's disease metaphors as mirror and lens to the stigma of dementia. Lit Med. 2017;35(1):71-97. https://doi.org/10.1353/lm.2017.0003 - PubMed
- McParland P, Devine P, Innes A, Gayle V. Dementia knowledge and attitudes of the general public in Northern Ireland: an analysis of national survey data. Int Psychogeriatr. 2012;24(10):1600-1613. - PubMed
- Garand L, Lingler JH, Conner KO, Dew MA. Diagnostic labels, stigma, and participation in research related to dementia and mild cognitive impairment. Res Gerontol Nurs. 2009;2(2):112-121. https://doi.org/10.3928/19404921-20090401-04 - PubMed
- Kada S, Nygaard HA, Mukesh BN, Geitung JT. Staff attitudes towards institutionalised dementia residents. J Clin Nurs. 2009;18(16):2383-2392. https://doi.org/10.1111/j.1365-2702.2009.02791.x - PubMed
- Johnson R, Harkins K, Cary M, Sankar P, Karlawish J. The relative contributions of disease label and disease prognosis to Alzheimer's stigma: a vignette-based experiment. Soc Sci Med. 2015;143:117-127. - PubMed
- Abdullah T, Brown TL. Mental illness stigma and ethnocultural beliefs, values, and norms: an integrative review. Clin Psychol Rev. 2011;31(6):934-948. https://doi.org/10.1016/j.cpr.2011.05.003 - PubMed
Publication Types