The Bubble of Normalisation: A Qualitative Study of Carers of People With Dementia Who Do Not Seek Help for a Diagnosis

1. Alzheimer's Disease International . World Alzheimer Report 2019: Attitudes to Dementia. London: Alzheimer's Disease International; 2019.
Google Scholar2. Prince, M, Bryce, C, Ferri, C. Alzheimer's Disease International World Alzheimer Report 2011 the Benefits of Early Diagnosis and Intervention. London: Alzheimer's Disease International; 2011.
Google Scholar3. World Health Organisation . Global Action Plan on the Public Health Response to Dementia 2017-2025. Geneva: World Health Organisation; 2017.
Google Scholar4. OECD . Care Needed: Improving the Lives of People with Dementia. Paris: OECD; 2018.
Google Scholar | Crossref5. Dubois, B, Padovani, A, Scheltens, P, Rossi, A, Dell'Agnello, G. Timely diagnosis for Alzheimer's disease: a literature review on benefits and challenges. J Alzheimers Dis. 2016;49(3):617-631.
Google Scholar | Crossref | Medline6. Perry-Young, L, Owen, G, Kelly, S, Owens, C. How people come to recognise a problem and seek medical help for a person showing early signs of dementia: a systematic review and meta-ethnography. Dementia. 2018;17(1):34-60.
Google Scholar | SAGE Journals | ISI7. Bunn, F, Goodman, C, Sworn, K, et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Med. 2012;9(9):e1001331.
Google Scholar | Crossref | Medline8. Rogers, K, Coleman, H, Brodtmann, A, Darby, D, Anderson, V. Family members’ experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence. Int Psychogeriatr. 2017;29(9):1425-1437.
Google Scholar | Crossref | Medline9. Wilkinson, D, Stave, C, Keohane, D, Vincenzino, O. The role of general practitioners in the diagnosis and treatment of Alzheimer's disease: a multinational survey. J Int Med Res. 2004;32(2):149-159.
Google Scholar | SAGE Journals | ISI10. Wackerbarth, SB, Johnson, MM. The carrot and the stick: benefits and barriers in getting a diagnosis. Alzheimer Dis Assoc Disord. 2002;16(4):213-220.
Google Scholar | Crossref | Medline | ISI11. Drebing, C, Movitz, R, Lyon, P, Harden, T, McCarty, E, Herz, L. Documenting pathways to dementia care: relative validity of questionnaire, interview, and medical record formats. Am J Alzheimers Dis Other Demen. 2004;19(3):187-197.
Google Scholar | SAGE Journals12. Parker, M, Barlow, S, Hoe, J, Aitken, L. Persistent barriers and facilitators to seeking help for dementia diagnosis. A systematic review of 30 years of the perspectives of carers and people with dementia. Int Psychogeriatr. 2020;6:1-24.
Google Scholar13. Bradford, A, Kunik, ME, Schulz, P, Williams, SP, Singh, H. Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Dis Assoc Disord. 2009;23(4):306-314.
Google Scholar | Crossref | Medline | ISI14. Koch, T, Iliffe, S. Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review. BMC Fam Pract. 2010;11:52.
Google Scholar | Crossref | Medline | ISI15. Aminzadeh, F, Molnar, FJ, Dalziel, WB, Ayotte, D. A review of barriers and enablers to diagnosis and management of persons with dementia in primary care. Can Geriatr J. 2012;15(3):85-94.
Google Scholar | Crossref | Medline16. Mansfield, E, Noble, N, Sanson-Fisher, R, Mazza, D, Bryant, J. Primary care physicians’ perceived barriers to optimal dementia care: a systematic review. Gerontol. 2019;59(6):e697-e708.
Google Scholar | Crossref17. Nguyen, T, Li, X. Understanding public-stigma and self-stigma in the context of dementia: a systematic review of the global literature. Dementia. 2020;19(2):148-181.
Google Scholar | SAGE Journals | ISI18. 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. Washington: American Psychological Association; 2014.
Google Scholar | Crossref19. NHS, Digital. Dementia 65+ estimated diagnosis rate March 2019. NHS Digital; 2019. https://app.powerbi.com/view?r=eyJrIjoiN2FkMmJjODUtNDQ5Yy00OGFjLWFlNjItYmQzNzE2ZDEzOTljIiwidCI6IjUwZjYwNzFmLWJiZmUtNDAxYS04ODAzLTY3Mzc0OGU2MjllMiIsImMiOjh9. Accessed .
Google Scholar20. Lui, D, Green, E, Kasteridis, P, et al. Incentive schemes to increase dementia diagnosis in primary care in England. Br J Gen Pract. 2019;69(680):e154-e163.
Google Scholar | Crossref | Medline21. NHS Commissioning Board . Commissioning for Quality and Innovation (CQUIN): 2013/2014. In: Department of Health , ed. London: Crown Copyright; 2012.
Google Scholar22. Robinson, L, Gemski, A, Abley, C, et al. The transition to dementia--individual and family experiences of receiving a diagnosis: a review. Int Psychogeriatr. 2011;23(S1):1026-1043.
Google Scholar | Crossref | Medline23. Tong, A, Sainsbury, P, Craig, J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357.
Google Scholar | Crossref | Medline | ISI24. Lowery, DP, Warner, J, Cerga-Pashoja, A, Thuné-Boyle, I, Iliffe, S. Clinicians as recruiters to dementia trials: lessons from the EVIDEM-E project. Int J Geriatr Psychiatry. 2011;26:767-769.
Google Scholar | Crossref | Medline25. Waite, J, Poland, F, Charlesworth, G. Facilitators and barriers to co-research by people with dementia and academic researchers: findings from a qualitative study. Health Expect. 2019;22:761-771.
Google Scholar | Crossref | Medline26. Savin-Baden, M, Howell Major, C. Qualitative Research the Essential Guide to Theory and Practice. Abingdon: Routledge; 2013.
Google Scholar27. Braun, V, Clarke, VC. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
Google Scholar | Crossref28. QSR International Pty Ltd . NVivo Qualitative Data Analysis Software. QSR; 2018.
Google Scholar29. Bowers, BJ . Intergenerational caregiving: adult caregivers and their aging parents. ANS Adv Nurs Sci. 1987;9(2):20-31.
Google Scholar | Crossref | Medline30. Bowers, BJ . Family perceptions of care in a nursing home. Gerontol. 1988;28(3):361-368.
Google Scholar | Crossref31. Clemmensen, TH, Busted, LM, Søborg, J, Bruun, P. The family’s experience and perception of phases and roles in the progression of dementia: an explorative, interview-based study. Dementia. 2019;18(2):490-513.
Google Scholar | SAGE Journals | ISI32. Nolan, M, Keady, J, Grant, G. Developing a typology of family care: implications for nurses and other service providers. J Adv Nurs. 1995;21(2):256-265.
Google Scholar | Crossref | Medline | ISI33. Gove, D, Downs, M, Vernooij-Dassen, M, Small, N. Stigma and GPs’ perceptions of dementia. Aging Ment Health. 2016;20(4):391-400.
Google Scholar | Crossref | Medline34. Dhedhi, SA, Swinglehurst, D, Russell, J. ‘Timely’ diagnosis of dementia: what does it mean? A narrative analysis of GPs’ accounts. BMJ Open. 2014;4:e004439.
Google Scholar | Crossref | Medline35. Burn, AM, Bunn, F, Fleming, J, et al. Case finding for dementia during acute hospital admissions: a mixed-methods study exploring the impacts on patient care after discharge and costs for the English National Health Service. BMJ Open. 2019;9:e026927.
Google Scholar | Crossref | Medline36. Burn, AM, Bunn, F, Fleming, J. Dementia case-finding in acute hospitals: a qualitative study of perspectives of hospital clinicians and general practitioners. Lancet. 2016;388:S29.
Google Scholar | Crossref37. van den Dungen, P, van Kuijk, L, van Marwijk, H, et al. Preferences regarding disclosure of a diagnosis of dementia: a systematic review. Int Psychogeriatr. 2014;26(10):1603-1618.
Google Scholar | Crossref | Medline38. 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.
Google Scholar | SAGE Journals | ISI39. Iliffe, S, Manthorpe, J. The hazards of early recognition of dementia: a risk assessment. Aging Ment Health. 2004;8(2):99-105.
Google Scholar | Crossref | Medline40. Bailey, A, Dening, T, Harvey, K. Battles and breakthroughs: representations of dementia in the British press. Ageing Soc. 2019;41:1-15.
Google Scholar41. Innes, A, Manthorpe, J. Developing theoretical understandings of dementia and their application to dementia care policy in the UK. Dementia. 2012;12(6):682-696.
Google Scholar | SAGE Journals42. Horsfield, P, Stolzenburg, S, Hahm, S, et al. Self-labeling as having a mental or physical illness: the effects of stigma and implications for help-seeking. Soc Psychiatry Psychiatr Epidemiol. 2020;55(7):907-916.
Google Scholar | Crossref | Medline43. Swaffer, K . Dementia: stigma, language, and dementia-friendly. Dementia. 2014;13(6):709-716.
Google Scholar | SAGE Journals | ISI44. 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.
Google Scholar | Crossref | Medline45. Kolanowski, A, Mulhall, P, Yevchak, A, Hill, N, Fick, D. The triple challenge of recruiting older adults with dementia and high medical acuity in skilled nursing facilities. J Nurs Scholarsh. 2013;45(4):397-404.
Google Scholar | Crossref | Medline46. Field, B, Mountain, G, Burgess, J, et al. Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia. BMJ Open. 2019;9:e030829.
Google Scholar | Crossref | Medline47. Fox, C, Lafortune, L, Boustani, M, Brayne, C. The pros and cons of early diagnosis in dementia. Br J Gen Pract. 2013;63:e510-e512.
Google Scholar | Crossref | Medline | ISI48. Peel, E . ‘The living death of Alzheimer’s ‘versus’ Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociol Health Illn. 2014;36(6):885-901.
Google Scholar | Crossref | Medline49. Underwood, BR, Thompsell, A, Sidhom, E, Burns, A. Providing memory assessment services during COVID-19. Aging Ment Health. 2020;25:1-3.
Google Scholar50. Alzheimer’s, Society. Alzheimer’s Society Comment on How Coronavirus Is Affecting Dementia Diagnosis and Assesment; 2020. https://www.alzheimers.org.uk/news/2020-08-10/coronavirus-affecting-dementia-assessment-diagnosis. Accessed 6/2/21.
Google Scholar

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