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Questionable practices despite good intentions: coping with risk and impact from dementia-related behaviours in care homes

Published online by Cambridge University Press:  17 April 2017

TAMARA BACKHOUSE ,
BRIDGET PENHALE ,
RICHARD GRAY  and
ANNE KILLETT
TAMARA BACKHOUSE*
Affiliation:
School of Health Sciences, University of East Anglia, Norwich, UK.
BRIDGET PENHALE
Affiliation:
School of Health Sciences, University of East Anglia, Norwich, UK.
RICHARD GRAY
Affiliation:
Department of Nursing, LaTrobe University, Melbourne, Australia.
ANNE KILLETT
Affiliation:
School of Health Sciences, University of East Anglia, Norwich, UK.
*
Address for correspondence: Tamara Backhouse, School of Health Sciences, University of East Anglia, Queen's Building, Norwich Research Park, Norwich NR4 7TJ, UK E-mail: Tamara.Backhouse@uea.ac.uk
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Abstract

Care-home residents with dementia can experience behavioural and psychological symptoms such as aggression, agitation, anxiety, wandering, calling out and sexual disinhibition. Care-home staff have a duty to keep residents safe. However, residents with dementia can pose particular challenges in this area. In this paper, we draw on a study which explored how care-home staff manage dementia-related behaviours. In-depth ethnographic case studies at four separate care homes were conducted in England. These involved interviews with 40 care-home staff and 384 hours of participant observation. Our analysis showed that some residents with dementia experience behaviours which can either create risks for, or negatively impact on, themselves and/or other residents or staff members. It emerged that the consequences of the behaviours, rather than the behaviours themselves, created difficulties for staff. To cope with the risk and impact of behaviours, staff employed multiple strategies such as surveillance, resident placement, restrictions and forced care. Using the data, we explore how actions taken by staff to manage the risk and impact of behaviours in these communal settings relate to residents’ human rights. Our findings have particular relevance for care-home staff who need support and guidance in this area, for service development worldwide and for the global ageing population whose valued human rights may become under threat, if they require long-term care.

Keywords

older peoplecare homehuman rightsriskimpactdementia behavioursbehavioural and psychological symptoms of dementia (BPSD)
Type
Article
Information
Ageing & Society , Volume 38 , Issue 9 , September 2018 , pp. 1933 - 1958
Copyright
Copyright © Cambridge University Press 2017 

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References

American Nurses Association 2012. Reduction of Patient Restraint and Seclusion in Health Care Settings. Revised Position Statement. Available online at http://www.nursingworld.org/restraintposition [Accessed 16 March 2017].Google Scholar
Backhouse, T., Killett, A., Penhale, B., Burns, D. and Gray, R. 2014. Behavioural and psychological symptoms of dementia and their management in care homes within the East of England: a postal survey. Aging & Mental Health, 18, 2, 187–93.Google Scholar
Backhouse, T., Killett, A., Penhale, B. and Gray, R. 2016. The use of non-pharmacological interventions for dementia behaviours in care homes: findings from four in-depth, ethnographic case studies. Age and Ageing, 45, 6, 856–63.Google Scholar
Banerjee, S. 2009. The Use of Antipsychotic Medication for People with Dementia: Time for Action. Department of Health, London.Google Scholar
Brechin, D., Murphy, G., James, I. A. and Codner, J. 2013. Briefing Paper: Alternatives to Antipsychotic Medication: Psychological Approaches in Managing Psychological and Behavioural Distress in People with Dementia. The British Psychological Society, Leicester, UK.Google Scholar
British Geriatrics Society 2011. Quest for Quality: An Inquiry into the Quality of Healthcare Support for Older People in Care Homes: A Call for Leadership, Partnership and Improvement. British Geriatrics Society, London.Google Scholar
Brooker, D. 2007. Person Centred Dementia Care: Making Services Better. Jessica Kingsley, London.Google Scholar
Burns, D., Hyde, P. and Killett, A. 2016. How financial cutbacks affect job quality and care of the elderly. Work and employment relations in healthcare. Industrial Labor Relations Review, 69, 4, 991–1016.Google Scholar
Camarano, A., Kanos, S., Leitão e Mello, J. and Carvalho, F. D. 2010. As Instituições de Longa Permanência para Idosos no Brasil. In Camarano, A. (ed.), Cuidados de longa duração para a população idosa: um novo risco a ser assumido? IPEA, Rio de Janeiro, 187–212.Google Scholar
Care Fit for VIPS 2016. Free Training Programme. Available online at http://www.carefitforvips.co.uk/ [Accessed 16 March 2017].Google Scholar
Care Quality Commission (CQC) 2014. Regulations for Service Providers and Managers: Regulation 13. Available online at http://www.cqc.org.uk/content/regulations-service-providers-and-managers [Accessed 16 March 2017].Google Scholar
Centers for Medicare and Medicaid Services (CMS) 2014. National Partnership to Improve Dementia Care Exceeds Goal to Reduce Use of Antipsychotic Medications in Nursing Homes: CMS Announces New Goal. Available online at https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2014-Press-releases-items/2014-09-19.html [Accessed 16 March 2017].Google Scholar
Centers for Medicare and Medicaid Services (CMS) 2015. Proposed Rule: Medicare and Medicaid Programs; Reform of Requirements for Long-term Care Facilities. Available online at https://www.federalregister.gov/articles/2015/07/16/2015-17207/medicare-and-medicaid-programs-reform-of-requirements-for-long-term-care-facilities#h-18 [Accessed 16 March 2017].Google Scholar
Cheung Wong, Y. and Leung, J. 2012. Long-term care in China: issues and prospects. Journal of Gerontological Social Work, 55, 7, 570–86.Google Scholar
Clough, R. 1999. The abuse of older people in institutional settings: the role of management and regulation. In Stanley, N., Manthorpe, J. and Penhale, B. (eds), Institutional Abuse Perspectives Across the Life Course. Routledge, London, 205–22.Google Scholar
Code of Federal Regulations (CFR) 1989. Title 42, Part 483, Subpart B, Requirements for States and Long Term Care Facilities. Available online at https://www.gpo.gov/fdsys/pkg/CFR-2011-title42-vol5/pdf/CFR-2011-title42-vol5-part483.pdf [Accessed 16 March 2017].Google Scholar
Commission for Social Care Inspection (CSCI) 2007. Rights, Risks and Restraints: An Exploration into the Use of Restraints in the Care of Older People. Making Social Care Better for People. CSCI, London.Google Scholar
Council of Europe 2014. Recommendation CM/Rec 2 of the Committee of Ministers to Member States on the Promotion of Human Rights of Older Persons. Available online at https://wcd.coe.int/ViewDoc.jsp?id=2162283& [Accessed 16 March 2017].Google Scholar
Department of Health 2010. ‘Nothing Ventured, Nothing Gained’: Risk Guidance for People with Dementia. Available online at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215960/dh_121493.pdf [Accessed 16 March 2017].Google Scholar
Eisenhardt, K. M. and Graebner, M. E. 2007. Theory building from cases: opportunities and challenges. Academy of Management Journal, 50, 1, 25–32.Google Scholar
Equality and Human Rights Commission 2014. Human Rights in Action: Case Studies from Regulators, Inspectorates and Ombudsmen. Available online at http://www.equalityhumanrights.com/publication/human-rights-action-case-studies-regulators-inspectorates-and-ombudsmen [Accessed 16 March 2017].Google Scholar
European Commission 2010. European Strategy to Combat Elder Abuse Against Older Women (EUSTaCEA). DAPHNE Toolkit. Available online at http://ec.europa.eu/justice/grants/results/daphne-toolkit/en/content/european-strategy-combat-elder-abuse-against-older-women-eustacea-0 [Accessed 16 March 2017].Google Scholar
General Assembly 2015. Draft Resolution. Inter-American Convention on Protecting the Human Rights of Older Persons (Presented by the Chair of the Working Group on Protection of the Human Rights of Older Persons Based on the Agreements Reached at the Last Meeting, Held on May 5, 2015). Available online at http://www.oas.org/consejo/cajp/personas%20mayores.asp [Accessed 16 March 2017].Google Scholar
German Federal Ministry of Family Affairs, Senior Citizens, Women and Youth and the German Federal Ministry of Health 2007. Charter of Rights for People in Need of Long Term Care from Practical Responsibility to Everyday Practice – From Entitlement to Living Reality and Assistance. Round Table for Long Term Care. Available online at https://www.pflege-charta.de/fileadmin/charta/pdf/Die_Charta_in_Englisch.pdf [Accessed 16 March 2017].Google Scholar
Goffman, E. 1961. Asylums. Anchor Books, New York.Google Scholar
Gold, R. L. 1958. Roles in sociological field observations. Social Forces, 36, 3, 217–23.Google Scholar
Hammersley, M. and Atkinson, P. 2007. Ethnography: Principles in Practice. Third edition, Taylor & Francis, London.Google Scholar
Health Education England, Skills for Care and Skills for Health 2015. The Care Certificate. Available online at http://www.skillsforcare.org.uk/Documents/Learning-and-development/Care-Certificate/The-Care-Certificate-Standards.pdf [Accessed 16 March 2017].Google Scholar
Hughes, R. (ed.) 2010. Rights, Risk and Restraint-free Care of Older People: Person-centred Approaches in Health and Social Care. Jessica Kingsley, London.Google Scholar
Human Rights Act 1998. s 1(3) (Article 5). HMSO, London.Google Scholar
International Psychogeriatric Association 2015. The IPA Complete Guides to Behavioral and Psychological Symptoms of Dementia (BPSD). Available online at https://www.ipa-online.org/publications/guides-to-bpsd [Accessed 16 March 2017].Google Scholar
Kelly, F. and Innes, A. 2013. Human rights, citizenship and dementia care nursing. International Journal of Older People Nursing, 8, 1, 61–70.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Magaziner, J., German, P., Zimmerman, S. I., Hebel, J. R., Burton, L., Gruber-Baldini, A. L., May, C. and Kittner, S., for the Epidemiology of Dementia in Nursing Homes Research Group 2000. The prevalence of dementia in a statewide sample of new nursing home admissions aged 65 and older. The Gerontologist, 40, 6, 663–72.Google Scholar
Mental Capacity Act 2005. c.9. HMSO, London.Google Scholar
Mittler, P. 2016. Position Paper: UN General Day of Discussion on CRPD Article 19: The Right of Persons Living with Dementia to be Supported to Live Independently in the Community. Available online at http://www.dementiaallianceinternational.org/human-rights-dementia/ [Accessed 16 March 2017].Google Scholar
National Institute for Health and Clinical Excellence and Social Care Institute for Excellence [2006] 2012. Dementia: Supporting People with Dementia and Their Carers in Health and Social Care. National Institute for Health and Clinical Excellence and Social Care Institute for Excellence, London.Google Scholar
Owen, T. and Meyer, J. 2009. Minimising the Use of ‘Restraint’ in Care Homes: Challenges, Dilemmas and Positive Approaches. Social Care Institute for Excellence, London.Google Scholar
Peisah, C. and Skladzien, E. 2014. The Use of Restraints and Psychotropic Medications in People with Dementia: A Report for Alzheimer's Australia. Paper 38. Available online at http://www.dementiaresearch.org.au/images/dcrc/pdf/Alz_Aus_report_on_restrain_and_psychotropic_use_in_RACFs_260314.pdf [Accessed 16 March 2017].Google Scholar
Penhale, B. and Manthorpe, J. 2004. Older people, institutional abuse and inquiries. In Stanley, N. and Manthorpe, J. (eds), The Age of the Inquiry, Learning and Blaming in Health and Social Care. Routledge, London, 257–72.Google Scholar
Prince, M., Wimo, A., Guerchet, M., Ali, G. C., Wu, Y. T. and Prina, M. 2015. World Alzheimer Report 2015. The Global Impact of Dementia. An Analysis of Prevalence, Incidence, Cost and Trends. Alzheimer's Disease International, London.Google Scholar
Quince, C. 2013. Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes. Alzheimer's Society, London.Google Scholar
Ritchie, J. and Lewis, J. (eds) 2003. Qualitative Research Practice: A Guide for Social Science Students and Researchers. Sage, London.Google Scholar
Ritchie, J. and Spencer, L. 1994. Qualitative data analysis for applied policy research. In Bryman, A. and Burgess, R. G. (eds), Analyzing Qualitative Data. Routledge, New York, 173–94.Google Scholar
Sarantakos, S. 2005. Social Research. Palgrave Macmillan, Basingstoke, UK.Google Scholar
Sasat, S., Choowattanapakorn, T., Pukdeeprom, T., Lertrat, P. and Arunsaeng, P. 2013. Long-term care institutions in Thailand. Journal of Health Research, 27, 6, 413–8.Google Scholar
Social Care Institute for Excellence 2014. Restraint: A Human Rights Issue. Different Films Video. Available online at http://www.scie.org.uk/socialcaretv/video-player.asp?v=restraint-a-human-rights-issue [Accessed 16 March 2017].Google Scholar
US Food and Drug Administration 2008. Information for Healthcare Professionals: Conventional Antipsychotics. Available online at http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm124830.htm [Accessed 16 March 2017].Google Scholar
Wardhaugh, J. and Wilding, P. 1993. Towards an explanation of the corruption of care. Critical Social Policy, 13, 37, 4–31.Google Scholar
World Health Organization 2015. Ensuring a Human Rights-based Approach for People Living with Dementia. Available online at http://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_human_rights.pdf [Accessed 16 March 2017].Google Scholar
World Human Rights Forum 2014. Marrakech Declaration: ‘Old-age Human Rights: Opportunities and Ways to Protect and to Promote the Rights of the Elderly. Available online at https://social.un.org/ageing-working-group/documents/sixth/MarakechDeclarationOlderPeopleRights.pdf [Accessed 16 March 2017].Google Scholar
Yin, R. K. 2009. Case Study Research: Design and Methods. Sage, London.Google Scholar