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The legal implications of dementia in the workplace: establishing a cross-disciplinary research agenda

Published online by Cambridge University Press:  23 June 2017

VALERIE EGDELL ,
JILL STAVERT  and
REBECCA MCGREGOR
VALERIE EGDELL*
Affiliation:
Employment Research Institute, Edinburgh Napier University, UK.
JILL STAVERT
Affiliation:
Centre for Mental Health and Capacity Law, Edinburgh Napier University, UK.
REBECCA MCGREGOR
Affiliation:
Centre for Mental Health and Capacity Law, Edinburgh Napier University, UK.
*
Address for correspondence: Valerie Egdell, Employment Research Institute, Edinburgh Napier University, Craiglockhart Campus, Edinburgh, EH14 1DJ, UK E-mail: v.egdell@napier.ac.uk
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Abstract

Dementia is a growing issue in the United Kingdom (UK) with over 800,000 people affected. Of these people, in excess of 40,000 are aged under 65 years. Thus, a significant number of individuals may be experiencing symptoms of dementia while in employment. In addition, as working lives extend, the potential impact of dementia on the workplace could be substantial. However, to date, there has been little research on experiences of dementia in the workplace. The research that exists highlights the lack of support for workers with dementia. Dementia may be considered to be a disability under the Equality Act 2010. Therefore, the legislation potentially provides a framework for individuals to request that their employer make reasonable adjustments to support their continued employment. International human rights law is potentially another tool that could be utilised to obtain necessary adjustments. This paper argues that in developing the evidence base on workplace experiences of dementia, it is important that the legal framework be considered. This paper reviews the existing literature on dementia in the workplace and embeds this in the legislative framework in order to establish a cross-disciplinary research agenda. While the paper focuses on the UK legal context, the argument presented in the paper is still relevant to other national contexts.

Keywords

dementiaworkplaceolder workersEquality Act 2010human rights lawcross-disciplinary research
Type
Article
Information
Ageing & Society , Volume 38 , Issue 11 , November 2018 , pp. 2181 - 2196
Copyright
Copyright © Cambridge University Press 2017 

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References

Allen, J. and Oyebode, J. R. 2009. Having a father with young onset dementia: the impact on well-being of young people. Dementia, 8, 4, 455–80.Google Scholar
Alzheimer's Society 2015. Creating a Dementia-friendly Workplace – A Practical Guide for Employers. Alzheimer's Society, London.Google Scholar
Appannah, A. and Biggs, S. 2015. Age-friendly organisations: the role of organisational culture and the participation of older workers. Journal of Social Work Practice, 29, 1, 37–51.Google Scholar
Arksey, H. and Glendinning, C. 2008. Combining work and care: carers’ decision-making in the context of competing policy pressures. Social Policy and Administration, 42, 1, 1–18.Google Scholar
Baldwin, C. 2008. Narrative, citizenship and dementia: the personal and the political. Journal of Aging Studies, 22, 3, 222–8.Google Scholar
Bartlett, R. and O'Connor, D. 2007. From personhood to citizenship: broadening the lens for dementia practice and research. Journal of Aging Studies, 21, 2, 107–18.Google Scholar
Bell, M. 2015. Mental health at work and the duty to make reasonable adjustments. Industrial Law Journal, 44, 2, 194–221.Google Scholar
Brown, A. and Roach, P. 2010. My husband has young-onset dementia: a daughter, wife and mother's story. Dementia, 9, 4, 451–53.Google Scholar
Cahill, S., Pierce, M., Werner, P., Darley, A. and Bobersky, A. 2015. A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia. Alzheimer Disease and Associated Disorders, 29, 3, 255–75.Google Scholar
Chaplin, R. and Davidson, I. 2016. What are the experiences of people with dementia in employment? Dementia, 15, 2, 147–61.Google Scholar
Ciampa, E. and Chernesky, R. 2013. Creating supportive workplace environments for older workers. In Brownell, P. and Kelly, J. J. (eds), Ageism and Mistreatment of Older Workers. Springer, Dordrecht, The Netherlands, 93–110.Google Scholar
Clemerson, G., Walsh, S. and Isaac, C. 2013. Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia, 13, 4, 451–66.Google Scholar
Conen, W. S., Henkens, K. and Schippers, J. 2012. Employers’ attitudes and actions towards the extension of working lives in Europe. International Journal of Manpower, 33, 6, 648–65.Google Scholar
Council of Europe 1950. European Convention on Human Rights – Convention for the Protection of Human Rights and Fundamental Freedoms, as Amended by Protocols Nos. 11 and 14, Supplemented by Protocols Nos. 1, 4, 6, 7, 12 and 13. Council of Europe, Rome.Google Scholar
Council of Europe 1961. European Social Charter. European Treaty Series 035, Council of Europe, Turin, Italy.Google Scholar
Donnelly, M. 2014. A legal overview. In Foster, C., Herring, J. and Doron, I. (eds), The Law and Ethics of Dementia. Hart Publishing, Portland, Oregon, 271–82.Google Scholar
Doron, I. 2006 a. Bringing the law to the gerontological stage: a different look at movies and old age. International Journal of Aging and Human Development, 62, 3, 237–54.Google Scholar
Doron, I. 2006 b. Elder law: current issues and future frontiers. European Journal of Ageing, 3, 1, 60–6.Google Scholar
Doron, I. 2012. A judicial Rashomon: on ageism and narrative justice. Journal of Cross-cultural Gerontology, 27, 1, 17–28.Google Scholar
Doron, I. 2013. Older Europeans and the European Court of Justice. Age and Ageing, 42, 5, 604–8.Google Scholar
Doron, I. 2014. The demographics of dementia. In Foster, C., Herring, J. and Doron, I. (eds), The Law and Ethics of Dementia. Hart Publishing, Portland, Oregon, 15–24.Google Scholar
Doron, I. and Hoffman, A. 2005. Time for law: legal literacy and gerontological education. Educational Gerontology, 31, 8, 627–42.Google Scholar
Doron, I., Lowenstein, A., and Biggs, S. 2017. Law and intergenerational relationships: comparing labor case law in the United States, Canada, and Israel. Journal of Applied Gerontology, 36, 3, 277–95.Google Scholar
Doron, I. and Meenan, H. 2012. Time for geriatric jurisprudence. Gerontology, 58, 3, 193–6.Google Scholar
Doron, I. and Werner, P. 2008. Facts on law and ageing quiz: older people's knowledge of their legal rights. Ageing & Society, 28, 8, 1159–74.Google Scholar
Ducharme, F., Kergoat, M.-J., Antoine, P., Pasquier, F. and Coulombe, R. 2013. The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease and Other Dementias, 28, 6, 634–41.Google Scholar
Egdell, V. 2013. Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care. Ageing & Society, 33, 5, 888–907.Google Scholar
Equality and Human Rights Commission 2011. Equality Act 2010: Employment Statutory Code of Practice. Equality and Human Rights Commission, London.Google Scholar
Fair Work Convention 2016. Fair Work Framework 2016. Fair Work Directorate, Glasgow, UK.Google Scholar
Fraser Butlin, S. 2011. The UN Convention on the Rights of Persons with Disabilities: does the Equality Act 2010 measure up to UK international commitments? Industrial Law Journal, 40, 4, 428–38.Google Scholar
Friedman, D. B., Becofsky, K., Anderson, L. A., Bryant, L. L., Hunter, R. H., Ivey, S. L., Belza, B., Logsdon, R. G., Brannon, S., Vandenberg, A. E. and Lin, S.-Y. 2015. Public perceptions about risk and protective factors for cognitive health and impairment: a review of the literature. International Psychogeriatrics, 27, 8, 1263–75.Google Scholar
Fuertes, V., Egdell, V. and McQuaid, R. 2013. Extending working lives: age management in SMEs. Employee Relations, 35, 3, 272–93.Google Scholar
Harris, P. B. and Keady, J. 2009. Selfhood in younger onset dementia: transitions and testimonies. Aging and Mental Health, 13, 3, 437–44.Google Scholar
HM Government 2010. Equality Act. Chapter 15. The Stationery Office, London.Google Scholar
James, G. 2004. An unquiet mind in the workplace: mental illness and the Disability Discrimination Act 1995. Legal Studies, 24, 4, 516–39.Google Scholar
Johannessen, A. and Möller, A. 2013. Experiences of persons with early-onset dementia in everyday life: a qualitative study. Dementia, 12, 4, 410–24.Google Scholar
Kanter, A. S. 2009. The United Nations Convention on the Rights of Persons with Disabilities and its implications for the rights of elderly people under international law. Georgia State University Law Review, 25, 3, 527–73.Google Scholar
Karnieli-Miller, O., Werner, P., Aharon-Peretz, J. and Eidelman, S. 2007. Dilemmas in the (un)veiling of the diagnosis of Alzheimer's disease: walking an ethical and professional tight rope. Patient Education and Counseling, 67, 3, 307–14.Google Scholar
Kayess, R. and French, P. 2008. Out of darkness into light? Introducing the convention on the rights of persons with disabilities. Human Rights Law Review, 8, 1, 1–34.Google Scholar
Kim, S., Sargent-Cox, K. A. and Anstey, K. J. 2015. A qualitative study of older and middle-aged adults’ perception and attitudes towards dementia and dementia risk reduction. Journal of Advanced Nursing, 71, 7, 1694–703.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Kitwood, T. and Bredin, K. 1992. Towards a theory of dementia care: personhood and well-being. Ageing & Society, 12, 3, 269–87.Google Scholar
Lawson, A. 2010. Reasonable accommodation and accessibility obligations: towards a more unified European approach? European Anti-Discrimination Law Review, 11, December 2010, 11–23.Google Scholar
Lawson, A. 2011. Disability and employment in the Equality Act 2010: opportunities seized, lost and generated. Industrial Law Journal, 40, 4, 359–83.Google Scholar
Lockwood, G., Henderson, C. and Thornicroft, G. 2014. Mental health disability discrimination: law, policy and practice. International Journal of Discrimination and the Law, 14, 3, 168–82.Google Scholar
Loretto, W. and White, P. 2006. Employers’ attitudes, practices and policies towards older workers. Human Resource Management Journal, 16, 3, 313–30.Google Scholar
Low, L.-F. and Anstey, K. J. 2009. Dementia literacy: recognition and beliefs on dementia of the Australian public. Alzheimer's and Dementia, 5, 1, 43–9.Google Scholar
Lüdecke, D., von dem Knesebeck, O. and Kofahl, C. 2016. Public knowledge about dementia in Germany – results of a population survey. International Journal of Public Health, 61, 1, 9–16.Google Scholar
McDowell, C. and Fossey, E. 2015. Workplace accommodations for people with mental illness: a scoping review. Journal of Occupational Rehabilitation, 25, 1, 197–206.Google Scholar
McNamara, G. 2014. Dementia and the workplace. Occupational Health, 66, 5, 27–9.Google Scholar
McParland, P., Devine, P., Innes, A. and Gayle, V. 2012. Dementia knowledge and attitudes of the general public in Northern Ireland: an analysis of national survey data. International Psychogeriatrics, 24, 10, 1600–13.Google Scholar
Milne, A. 2010. The ‘D’ word: reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health, 19, 3, 227–33.Google Scholar
Milne, A., Brigden, C., Palmer, A. and Konta, E. 2013. The intersection of employment and care: evidence from a UK case study. European Journal of Social Work, 16, 5, 651–70.Google Scholar
Nicholson, P., Mayho, G., Robson, S. and Sharp, C. 2016. Ageing and the Workplace. A Report from the BMA Occupational Medicine Committee. British Medical Association, London.Google Scholar
O'Connor, D., Phinney, A., Smith, A., Small, J., Purves, B., Perry, J., Drance, E., Donnelly, M., Chaudhury, H. and Beattie, L. 2007. Personhood in dementia care: developing a research agenda for broadening the vision. Dementia, 6, 1, 121–42.Google Scholar
Office for National Statistics 2014. Self-employed Workers in the UK – 2014. Office for National Statistics, London.Google Scholar
Ohman, A., Nygard, L. and Borell, L. 2001. The vocational situation in cases of memory deficits or younger-onset dementia. Scandinavian Journal of Caring Sciences, 15, 1, 34–43.Google Scholar
Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A., Wittenberg, R., Adelaja, B., Hu, B., King, D., Rehill, A. and Salimkumar, D. 2014. Dementia UK: Update. Alzheimer's Society, London.Google Scholar
Principi, A., Lamura, G., Sirolla, C., Mestheneos, L., Bien, B., Brown, J., Krevers, B., Melchiorre, M. G. and Dohner, H. 2014. Work restrictions experienced by midlife family care-givers of older people: evidence from six European countries. Ageing & Society, 34, 2, 209–31.Google Scholar
Ritchie, L., Banks, P., Danson, M., Tolson, D. and Borrowman, F. 2015. Dementia in the workplace: a review. Journal of Public Mental Health, 14, 1, 24–34.Google Scholar
Roach, P. and Drummond, N. 2014. ‘It's nice to have something to do’: early-onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21, 10, 889–95.Google Scholar
Roach, P., Drummond, N. and Keady, J. 2016. ‘Nobody would say that it is Alzheimer's or dementia at this age’: family adjustment following a diagnosis of early-onset dementia. Journal of Aging Studies, 36, January 2016, 26–32.Google Scholar
Roach, P., Keady, J., Bee, P. and Hope, K. 2009. Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice. Reviews in Clinical Gerontology, 18, 2, 165–74.Google Scholar
Robertson, D., Kirkpatrick, P. and McCulloch, S. 2015. Sustaining adults with dementia or mild cognitive impairment in employment: a systematic review protocol of qualitative evidence. JBI Database of Systematic Reviews and Implementation Reports, 13, 3, 124–36.Google Scholar
Robertson, J., Evans, D. and Horsnell, T. 2013. Side by side: a workplace engagement program for people with younger onset dementia. Dementia, 12, 5, 666–74.Google Scholar
Schmidt, W. C. 2014. Proxy decision-making: a legal perspective. In Foster, C., Herring, J. and Doron, I. (eds), The Law and Ethics of Dementia. Hart Publishing, Portland, Oregon, 311–26.Google Scholar
Schneider, U., Trukeschitz, B., Mühlmann, R. and Ponocny, I. 2013. ‘Do I stay or do I go?’ Job change and labor market exit intentions of employees providing informal care to older adults. Health Economics, 22, 10, 1230–49.Google Scholar
Schröder, H., Muller-Camen, M. and Flynn, M. 2014. The management of an ageing workforce: organisational policies in Germany and Britain. Human Resource Management Journal, 24, 4, 394–409.Google Scholar
Spanier, B., Doron, I. and Milman-Sivan, F. 2013. Older persons’ use of the European Court of Human Rights. Journal of Cross-cultural Gerontology, 28, 4, 407–20.Google Scholar
Stephen, H. 2015. Research is identifying how employers can help people with dementia stay in work for longer. Living with Dementia Magazine, July.Google Scholar
Surtees, D. 2014. Discrimination. In Foster, C., Herring, J. and Doron, I. (eds), The Law and Ethics of Dementia. Hart Publishing, Portland, Oregon, 445–56.Google Scholar
Svanberg, E., Spector, A. and Stott, J. 2011. The impact of young onset dementia on the family: a literature review. International Psychogeriatrics/IPA, 23, 3, 356–71.Google Scholar
Svanberg, E., Stott, J. and Spector, A. 2010. ‘Just helping’: children living with a parent with young onset dementia. Aging and Mental Health, 14, 6, 740–51.Google Scholar
Taylor, P. and Walker, A. 1998. Policies and practices towards older workers: a framework for comparative research. Human Resource Management Journal, 8, 3, 61–76.Google Scholar
Tolson, D., Ritchie, L., Danson, M. and Banks, P. 2016. Dementia in the Workplace: The Potential for Continued Employment Post Diagnosis. University of the West of Scotland., PaisleyGoogle Scholar
United Nations 2006. Convention on the Rights of Persons with Disabilities. A/RES/61/106, 13 December, United Nations, New York.Google Scholar
Werner, P. 2006. Lay perceptions regarding the competence of persons with Alzheimer's disease. International Journal of Geriatric Psychiatry, 21, 7, 674–80.Google Scholar
Werner, P. 2014. Common perceptions of dementia. In Foster, C., Herring, J. and Doron, I. (eds), The Law and Ethics of Dementia. Hart Publishing, Portland, Oregon, 189–96.Google Scholar
Werner, P. and Doron, I. 2016. Alzheimer's disease and the law: positive and negative consequences of structural stigma and labeling in the legal system. Aging and Mental Health. Published online, 27th July 2016, doi:10.1080/13607863.2016.1211989.Google Scholar
Werner, P., Goldstein, D. and Buchbinder, E. 2010. Subjective experience of family stigma as reported by children of Alzheimer's disease patients. Qualitative Health Research, 20, 2, 159–69.Google Scholar