Hostname: page-component-6bf8c574d5-gr6zb Total loading time: 0 Render date: 2025-02-28T04:13:49.375Z Has data issue: false hasContentIssue false
  • English
  • Français

Representing the Social Problem of Dementia: Reflexions on Carol Bacchi’s What Is the Problem Represented to Be Approach

Published online by Cambridge University Press:  24 February 2025

Steve Iliffe  and
Jill Manthorpe Open the ORCID record for Jill Manthorpe [Opens in a new window]
Steve Iliffe
Affiliation:
UCL, London, UK
Jill Manthorpe*
Affiliation:
King’s College London, London, UK
*
Corresponding author: Jill Manthorpe; Email: jill.manthorpe@kcl.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Dementia is represented as a condition deserving urgent policy attention. In the United Kingdom (UK) substantial resources have been invested in it, including in earlier intervention and in basic science. This selective narrative review explores England’s national dementia policy and practices. It uses Bacchi’s framework of questions, grounded in a Foucauldian understanding of governmentality, to understand how policy initiatives, service re-orientation and lobbying campaigns shape dementia as a problem. This ‘What is the Problem Represented to Be’ (WPR) analytic approach helps explain why prevention has often been overlooked and reminds us that not all ‘stakeholders’ have the same motivations. Our preliminary conclusions are that Bacchi’s approach does elucidate the representation of dementia and illuminates how a ‘medicalindustrial-charity-complex’ shapes the representation of dementia. Bacchi’s approach could be used to construct an agenda for change in dementia research and care.

Keywords

DementiapolicyBacchiWhat is the problem represented to be
Type
Article
Information
Social Policy and Society , First View , pp. 1 - 13
Copyright
© The Author(s), 2025. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Academy of Social Science Research (2016) Spotlight on Dementia Research, London: Academy of Social Science Research, https://www.socialsciencespace.com/2016/03/spotlighting-social-sciences-role-in-dementia-fight/?msclkid=86283a9dadc611eca10e0303a432f5b7 (accessed 07.05.2024).Google Scholar
Archibald, T. (2020) ‘What’s the problem represented to be? Problem definition critique as a tool for evaluative thinking’, American Journal of Evaluation, 41, 1, 6–19.CrossRefGoogle Scholar
Audit Commission (2000) Forget-Me-Not. Mental Health Services for Older People, London: HMSO.Google Scholar
Bacchi, C. (2009) Analysing Policy: What’s the Problem Represented to Be?, London: Pearson.Google Scholar
Bacchi, C. (2012) ‘Introducing the “What’s the problem represented to be?” approach, in Why Study Problematizations? Making Politics Visible’, Open Journal of Political Science, 2, 1, 1–8.CrossRefGoogle Scholar
Bacchi, C. (2021) Introducing ‘What’s the Problem Represented to Be?’ A Work in Progress, Karlstad: Karlstad University, https://www.kau.se/files/2021-10/BACCHI%20KICK-OFF%20POWERPOINT_1.pdf (accessed 07.05.2024).Google Scholar
Banerjee, S., Willis, R., Matthews, D., Contell, F., Chan, J. and Murray, J. (2007) ‘Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model’, International Journal of Geriatric Psychiatry, 22, 8, 782–788.CrossRefGoogle ScholarPubMed
Bond, J., Stave, C., Sganga, A., O'Connell, B. and Stanley, R. L. (2005) ‘Inequalities in dementia care across Europe: key findings of the facing Dementia survey’, International Journal of Clinical Practice, 59, suppl 146, 8–14.CrossRefGoogle Scholar
Burns, A. and Buckman, L. (2013) Timely Diagnosis of Dementia: Integrating Perspectives: Achieving Consensus, London: NHS England, https://www.dementiaaction.org.uk/assets/0000/3808/NHS_England_BMA_Diagnosis_Consensus.pdf (accessed 07.05.2024).Google Scholar
Callahan, D. and Nuland, S. B. (2011) ‘The quagmire’, New Republic, http://www.newrepublic.com/article/economy/magazine/88631/american-medicine-health-care-costs# (accessed 07.05.2024)Google Scholar
Campaign for Social Science (2017) The Health of People: How the Social Sciences can Improve Population Health, London: Campaign for Social Science, www.campaignforsocialscience.org.uk (accessed 07.05.2024).Google Scholar
Canevelli, M., Cesari, M., Lucchini, F., Valletta, M., Sabino, M., Lacorte, E., Vanacore, N., Bruno, G. (2017) Need to recalibrate research outcomes in Alzheimer's disease: focus on neuropsychiatric symptoms. Journal of the American Geriatrics Society 265(9), 2071–2073. https://doi.org/10.1111/jgs.14989.CrossRefGoogle Scholar
Cations, M., Laver, K. E., Crotty, M. and Cameron, I. D. (2018) ‘Rehabilitation in dementia care’, Age & Ageing, 47, 171–174.CrossRefGoogle ScholarPubMed
Chapman, M., Philip, J. and Komesaroff, P. (2022) ‘A person-centred problem’, Humanities and Social Science Communications, 9, 154, https://doi.org/10.1057/s41599-022-01166-9 (accessed 07.05.2024).CrossRefGoogle Scholar
Chapman, M., Phillip, J. and Komesaroff, P. (2019) ‘Learning from the cultural challenge of dementia’, Bioethical Inquiry, 16, 159–162.CrossRefGoogle ScholarPubMed
Chochinov, H. M. (2013) ‘Dignity in care: time to take action’, Journal of Pain and Symptom Management, 46, 5, 756–759.CrossRefGoogle ScholarPubMed
De Kock, C. (2020) ‘Cultural competence and derivatives in substance use treatment for migrants and ethnic minorities: what’s the problem represented to be?’, Social Theory and Health, 18, 4, 358–394.CrossRefGoogle Scholar
Department of Health (2009) Living Well with Dementia: A National Dementia Strategy, London: HMSO.Google Scholar
Department of Health and Social Care (2015) Policy Paper: 2010 to 2015 Government Policy: Dementia, London: DHSC, https://www.gov.uk/government/publications/2010-to-2015-government-policy-dementia/2010-to-2015-government-policy-dementia (accessed 07.05.2024).Google Scholar
Department of Health and Social Care (2023) Major Conditions Strategy: Case for Change and Our Strategic Framework, London: Department of Health and Social Care, https://www.gov.uk/government/publications/major-conditions-strategy-case-for-change-and-our-strategic-framework/major-conditions-strategy-case-for-change-and-our-strategic-framework--2 (accessed 07.05.2024).Google Scholar
Derouesné, C. (2003) ‘What is dementia? 2. A fuzzy construct’, Psychologie Neuropsychiatrie Vieille, 1, 1, 15–24.Google ScholarPubMed
Eagles, J. M., Beattie, J. A., Blackwood, G. W., Restall, D. B. and Ashcroft, G. W. (1987) ‘The mental health of elderly couples. I. The effects of a cognitively impaired spouse’, British Journal of Psychiatry, 150, 299–303.CrossRefGoogle ScholarPubMed
Fletcher, J. R. (2020) ‘Mythical dementia and Alzheimerised senility: discrepant and intersecting representations of cognitive decline in later life’, Social Theory & Health, 18, 50–65.CrossRefGoogle Scholar
Forlenza, O. V., Diniz, B. S. and Gattaz, W. F. (2010) ‘Diagnosis and biomarkers of predementia in Alzheimer’s disease’, BMC Medicine, 8, 89.CrossRefGoogle ScholarPubMed
Foucault, M. (1991) ‘Governmentality’ in Burchel, G., Gordon, C. and Miller, P. (eds.), The Foucault Effect: Studies in Governmentality, 87–104. Chicago: University of Chicago Press.Google Scholar
Galvin, J. E. (2017) ‘Prevention of Alzheimer’s disease: lessons learned and applied’, Journal of the American Geriatrics Society, 65, 2128–2133.CrossRefGoogle ScholarPubMed
George, D. R. and Whitehouse, P. J. (2014) ‘The war (on terror) on Alzheimer’s’, Dementia, 13, 1, 120–130.CrossRefGoogle ScholarPubMed
Gilmour, G. A. and Brannelly, T. (2010) ‘Representations of people with dementia – subaltern, person, citizen’, Nursing Inquiry, 17, 3, 240–247.CrossRefGoogle ScholarPubMed
Greaves, I. and Jolley, D. (2010) ‘National dementia strategy: well intentioned — but how well founded and how well directed?’, British Journal of General Practice, 60, 193–198.CrossRefGoogle ScholarPubMed
Hebert, C. A. and Scales, K. (2019) ‘Dementia friendly initiatives: a state of the science review’, Dementia, 18, 5, 1858–1895.CrossRefGoogle ScholarPubMed
Hillman, A. and Latimer, J. (2017) ‘Cultural representations of dementia’, PLOS Medicine, 14, 3, e1002274.CrossRefGoogle ScholarPubMed
Holmes, C. and Lovestone, S. (2003) ‘Long-term cognitive and functional decline in late onset Alzheimer’s disease: therapeutic implications’, Age and Ageing, 32, 2, 200–204.CrossRefGoogle ScholarPubMed
Huang, Y-M., Shen, J. and Zhao, H-L. (2019) ‘Major clinical trials failed the Amyloid hypothesis of Alzheimer’s disease’, Journal of the American Geriatrics Society, 67, 841–844.CrossRefGoogle ScholarPubMed
Joyner, M. J., Paneth, N. and Ioannidis, J. P. A. (2016) What happens when underperforming big ideas in research become entrenched? JAMA 316 (13) 1355–1356. https://doi.org/10.1001/jama.2016.11076.CrossRefGoogle ScholarPubMed
Karran, E. and De Strooper, B. (2016) ‘The Amyloid cascade hypothesis: are we poised for success or failure?’, Journal of Neurochemistry, 139, S2, 237–252.CrossRefGoogle ScholarPubMed
Kaur, P. and Stoltzfus, J. (2017) ‘Type I, II, and III statistical errors: a brief overview’, Biostatistics, 3, 2, 268–270.Google Scholar
Knapp, M., Prince, M., Albanese, E., Banerjee, S., Dhanasiri, S., Fernandez, J. L., Ferri, C., McCrone, P., Snell, T. and Stewart, R. (2007) Dementia UK, London: Alzheimer’s Society.Google Scholar
Kontos, P. and Martin, W. (2013) ‘Embodiment and dementia: exploring critical narratives of selfhood, surveillance and dementia care’, Dementia, 12, 3, 288–302.CrossRefGoogle Scholar
Lalli, G., Rossor, M., Rowe, J. B. and De Strooper, B. (2021) ‘The dementia UK ecosystem: a call to action’, Lancet Neurology, 20, 9, 699–700.CrossRefGoogle ScholarPubMed
Le Couture, D. G., Doust, J., Creasy, H. and Brayne, C. (2013) ‘Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis’, British Medical Journal, 347, 5125.CrossRefGoogle Scholar
Lin, J. S., O’Connor, E., Rossom, R. C., Perdue, L. A. and Eckstrom, E. (2013) ‘Screening for cognitive impairment in older adults: a systematic review for the US Preventive Services Task Force’, Annals of Internal Medicine, 159, 601–612.CrossRefGoogle Scholar
Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L., Howard, R., Kales, H., Kivimaki, M., Larson, E., Ogunniyi, A., Ortega, V., Ritchie, K., Rockwood, K., Sampson, E., Samus, Q., Schenider, L., Selbaek, G., Teri, L. and Mukadam, N. (2020) ‘Dementia prevention, intervention, and care: report of the Lancet Commission’, The Lancet, 396, 10248, 413–446.CrossRefGoogle ScholarPubMed
Lyle, S., Grizzell, M., Willmott, S., Benbow, S., Clark, M. and Jolley, D. (2008) ‘Treatment of a whole population sample of Alzheimer’s disease with donepezil over a four year period: lessons learned’, Dementia Geriatric Cognitive Disorders, 25, 3, 226–231.CrossRefGoogle Scholar
Mangialasche, F., Solomon, A., Winblad, B., Mecocci, P. and Kivipelto, M. (2010) ‘Alzheimer’s disease: clinical trials and drug development’, Lancet Neurology, 9, 7, 702–716.CrossRefGoogle ScholarPubMed
Manthorpe, J. and Iliffe, S. (2016) The Dialectics of Dementia, London: King’s College London, https://daanow.org/wp-content/uploads/2016/07/The-dialectics-of-dementia.pdf Google Scholar
Manthorpe, J. and Moniz-Cook, E. (eds.) (2020) Timely Psychosocial Interventions in Dementia Care: Evidence-Based Practice, London: Jessica Kingsley.Google Scholar
McParland, P., Kelly, F. and Innes, A. (2017) ‘Dichotomising dementia: is there another way?’, Sociology of Health & Illness, 39, 2, 258–269.CrossRefGoogle ScholarPubMed
Mintun, M. A., Lo, A. C., Evans, C. G., Wessels, A. M., Ardayfio, P. A., Andersen, S. W., Shcherbinin, S. and Skovronsky, D. M. (2021) ‘Donanemab in early Alzheimer’s disease’, New England Journal of Medicine, 384, 1691–1704.CrossRefGoogle ScholarPubMed
Moniz-Cook, E., Vernooij-Dassen, M., Woods, B., Orrell, M. and Network, Interdem (2011) Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging & Mental Health, 15(3), 283–290. https://doi.org/10.1080/13607863.2010.543665 CrossRefGoogle ScholarPubMed
Murray, J., Schneider, J., Banerjee, S. and Mann, A. (1999) ‘EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer’s disease: II- a qualitative analysis of the experience of caregiving’, International Journal of Geriatric Psychiatry, 14, 662–667.3.0.CO;2-4>CrossRefGoogle Scholar
Parker, J., Cutler, C. and Heaslip, V. (2021) ‘Dementia as Zeitgeist: social problem construction and the role of a contemporary distraction’, Sociological Research Online, 26, 2, 309–325. https://doi.org/10.1177/1360780420929033 CrossRefGoogle Scholar
Peel, E. (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, 6, 885–901.CrossRefGoogle Scholar
Prime Minister’s Office (2022) Prime Minister Launches ‘Dame Barbara Windsor Dementia Mission’, London: Prime Minister’s Office, https://www.gov.uk/government/news/prime-minister-launches-dame-barbara-windsor-dementia-mission--2 (accessed 17.1.2025).Google Scholar
Reed, P., Carson, J. and Gibb, Z. (2017) ‘Transcending the tragedy discourse of dementia: an ethical imperative for promoting selfhood, meaningful relationships, and well-being’, American Medical Association Journal of Ethics, 19, 7, 693–703.Google ScholarPubMed
Regier, D. A., Kuhl, E. A. and Kupfer, D. J. (2013) ‘The DSM-5: classification and criteria changes’, World Psychiatry, 12, 2, 92–98 https://doi.org/10.1002/wps.20050 CrossRefGoogle ScholarPubMed
Roche (2022) https://www.roche.com/media/releases/med-cor-2022-11-14 (accessed 07.05.2024).Google Scholar
Rossor, M. and Knapp, M. (2015) ‘Can we model a cognitive footprint of interventions and policies to help meet the global challenge of dementia’, The Lancet, 386, 9997, 1008–1010.CrossRefGoogle Scholar
Samarasekera, U. (2022) ‘Funding dementia research: new initiatives’, Lancet Neurology, 21, 11, https://doi.org/10.1016/S1474-4422(22)00403-3 (accessed 07.05.2024).CrossRefGoogle ScholarPubMed
Sanders, S. (2005) ‘Is the glass half empty or half full? Reflections on strain and gain in caregivers of individuals with Alzheimer’s disease’, Social Work and Health Care, 40, 3, 57–73.CrossRefGoogle ScholarPubMed
Sigurdsson, E. M. (2010) ‘Alzheimer’s disease: challenges ahead’, Frontiers in Psychiatry, 1, 1, 5, https://doi.org/10.3389/fpsyt.2010.00005 (accessed 07.05.2024).CrossRefGoogle ScholarPubMed
Singer, M., Bulled, N., Ostrach, B. and Mendenhall, E. (2017) ‘Syndemics and the biosocial conception of health’, Lancet, 389, 941–950.CrossRefGoogle ScholarPubMed
Sohn, E. (2018) ‘A quest to stave off the inevitable’, Nature, 559, S18–S20.CrossRefGoogle Scholar
Sontag, S. (1978) Illness as Metaphor, New York: Farrar, Straus and Giroux Publishers.Google Scholar
Tricco, A. C., Ashoor, H. M., Soobiah, C., Rios, P., Veroniki, A. A., Hamid, J. S., Ivory, J., Khan, P., Yazdi, F., Ghassemi, M., Blondal, E., Ho, J., Ng, C., Hemmelgarn, B., Majumdar, S., Perrier, L. and Straus, S. (2018) ‘Comparative effectiveness and safety of cognitive enhancers for treating Alzheimer’s disease: systematic review and network meta-analysis’, Journal of the American Geriatrics Society, 66, 1, 170–178.CrossRefGoogle Scholar
Van der Linden, M. and Van der Linden, A. C. (2018) ‘A life-course and multifactorial approach to Alzheimer’s disease: implications for research, clinical assessment and intervention practices’, Dementia, 17, 7, 880–895.CrossRefGoogle ScholarPubMed
Waldemar, G., Phung, K. T., Burns, A., Georges, J., Ronholt Hansen, F., Iliffe, S., Marking, C., Rikkert, M. O., Selmes, J., Stoppe, G. and Sartorius, N. (2007) ‘Access to diagnostic evaluation and treatment for dementia in Europe’, International Journal of Geriatric Psychiatry, 22, 1, 47–54.CrossRefGoogle ScholarPubMed
Walsh, S., Merrick, R., Milne, R. and Brayne, C. (2021) ‘Aducanumab for Alzheimer’s disease?’, British Medical Journal, 374, 1682.CrossRefGoogle ScholarPubMed
Wilson, C. (2022) ‘Expect a row over controversial Alzheimer’s drug’, New Scientist, 29 December.Google Scholar
Wu, Y. T., Fratiglioni, L., Matthews, F. E., Lobo, A., Breteler, M.M., Skoog, I. and Brayne, C. (2015) ‘Dementia in western Europe: epidemiological evidence and implications for policy making’, Lancet Neurology, 15, 1, 116–124.CrossRefGoogle ScholarPubMed
Zeilig, H. (2013) ‘Dementia as a cultural metaphor’, The Gerontologist, 54, 2, 258–267.CrossRefGoogle ScholarPubMed
Zeilig, H. (2015) ‘What do we mean when we talk about dementia? Exploring cultural representations of “dementia”’, Working with Older People, 19, 1, 12–20.CrossRefGoogle Scholar