The burgeoning interest in young onset dementia: redressing the balance or reinforcing ageism?

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Edward Tolhurst


Critical evaluation is undertaken of social scientific conceptualisations of dementia in relation to ageing. In response to the societal tendency to associate dementia with old age, there is a growing body of literature that seeks to explicate the particular challenges faced by younger people with the condition. While recognition of the distinctive impacts presented by dementia at different ages is crucial, an age-related conceptual model that focuses on a lifecourse divide at age 65 is problematic: it promulgates a sense that younger people with dementia have ‘‘unique’’ experiences, while dementia for older people is typical. This also reflects a societal ageism, under which concerns are focused on those situated within ‘‘productive adulthood.’’ Moreover, a straightforward chronological marker cannot adequately represent a social world shaped by significant demographic changes. A more textured appreciation of ageing and dementia is required to help articulate how distinctive experiences emerge across the lifecourse.


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Alzheimer’s Society. (2014). Dementia UK: Update. London: Alzheimer’s Society.

Alzheimer’s Society. (2015). What is Young-Onset Dementia? Available on (Accessed: April 10, 2016).

Armstrong, M. (2003). The needs of people with young-onset dementia and their carers. Professional Nurse 18(12): 681–684.

Bartlett, R. & O’Connor, D. (2010). Broadening the Dementia Debate: Towards Social Citizenship. Bristol: The Policy Press.

Bauman, Z. (2011). Collateral Damage: Social Inequalities in a Global Age. Cambridge, MA: Polity Press.

Beattie, A., Daker-White, G., Gilliard, J. & Means, R. (2004). How can they tell?’’ A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community 12(4): 359–368. DOI: 10.1111/j.1365-2524.2004.00505.x

Caddell, L. & Clare, L. (2013). A profile of identity in early-stage dementia and a comparison with healthy older people. Aging and Mental Health 17(3): 319–327. DOI: 10.1080/13607863.2012.742489

Chaston, D. (2011). Between a rock and a hard place: Exploring the service needs of younger people with dementia. Contemporary Nurse 39(2): 130–139. DOI: 10.5172/conu.2011.39.2.130

Clemerson, G., Walsh, S. & Isaac, C. (2014). Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed. Dementia 13(4): 451–466. DOI: 10.1177/1471301212474149

Cohen-Mansfield, J., Golander, H. & Arnheim, G. (2000). Self-identity in older persons suffering from dementia: Preliminary results. Social Science and Medicine 51(3): 381–394. DOI: 10.1016/S0277-9536(99)00471-2

Cowdell, F. (2010). Care of older people with dementia in an acute hospital setting. Nursing Standard 24(23): 42–48. DOI: 10.7748/ns.24.23.42.s48

Cox, S. & Keady, J. (1999). Introduction. In S. Cox & J. Keady (eds.), Younger People with Dementia: Practice, Planning and Development (pp. 11–14). London: Jessica Kingsley. DOI: 10.1090/surv/068/01

Dalby, P., Sperlinger, D. & Boddington, S. (2012). The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia 11(1): 75–94. DOI: 10.1177/1471301211416608

Gilleard, C. & Higgs, P. (2005). Contexts of Ageing: Class, Cohort and Community. Cambridge, MA: Polity Press.

Gilleard, C. & Higgs, P. (2010). Aging without agency: Theorizing the fourth age. Aging and Mental Health 14(2): 121–128. DOI: 10.1080/13607860903228762

Graham, N. & Warner, J. (2009). Understanding Alzheimer’s Disease and Other Dementias. Poole: Family Doctor Publications.

Harris, P. B. (2004). The perspective of younger people with dementia: Still an overlooked population. Social Work in Mental Health 2(4): 17–36. DOI: 10.1300/J200v02n04_02

Harris, P. B. & Keady, J. (2009). Selfhood in younger onset dementia: Transitions and testimonies. Aging and Mental Health 13(3): 437–444. DOI: 10.1080/13607860802534609

Higgs, P. (2013). Disturbances in the field: The challenge of changes in ageing and later life for social theory and health. Social Theory and Health 11(3): 271–284. DOI: 10.1057/sth.2013.13

Higgs, P. & Gilleard, C. (2014). Frailty, abjection and the ‘‘othering’’ of the fourth age. Health Sociology Review 23(1): 10–19. DOI: 10.5172/hesr.2014.23.1.10

Higgs, P. & Gilleard, C. (2015). Rethinking Old Age: Theorising the Fourth Age. London: Palgrave.

Higgs, P. & Rees-Jones, I. (2009). Medical Sociology and Old Age. London: Routledge.

Hubbard, G., Downs, M. & Tester, S. (2003). Including older people with dementia in research: Challenges and strategies. Aging and Mental Health 7(5): 351–362. DOI: 10.1080/1360786031000150685

Hughes, J. (2014). How We Think About Dementia: Personhood, Rights, Ethics, the Arts and What They Mean for Care. London: Jessica Kingsley.

Hulko, W. (2009). From ‘‘not a big deal’’ to ‘‘hellish’’: Experiences of older people with dementia. Journal of Aging Studies 23(3): 131–144. DOI: 10.1016/j.jaging.2007.11.002

Johannessen, A. & Mo¨ ller, A. (2013). Experiences of persons with earlyonset dementia in everyday life: A qualitative study. Dementia 12(4): 410–424. DOI: 10.1177/1471301211430647

Keady, J. & Nolan, M. (1994). Younger onset dementia: Developing a longitudinal model as the basis for a research agenda and as a guide to interventions with sufferers and carers. Journal of Advanced Nursing 19(4): 659–669. DOI: 10.1111/j.1365-2648.1994.tb01136.x

Killick, J. (1999). Dark head amongst the grey’’: Experiencing the worlds of younger persons with dementia. In S. Cox & J. Keady (eds.), Younger People with Dementia: Planning, Practice and Development (pp. 153–172). London: Jessica Kingsley.

Kirkwood, T. (2001). The End of Age: Why Everything about Ageing is Changing. London: Profile Books.

Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.

Kitwood, T. & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being. Ageing and Society 12(3): 269–287. DOI: 10.1017/S0144686X0000502X

Koopmans, R. & Rosness, T. (2014). Young onset dementia – What does the name imply? International Psychogeriatrics 26(12): 1931–1933. DOI: 10.1017/S1041610214001574

Lockeridge, S. & Simpson, J. (2013). The experience of caring for a partner with young onset dementia: How younger carers cope. Dementia 12(5): 635–651. DOI: 10.1177/1471301212440873

ONS (Office for National Statistics). (2015). National Life Tables, United Kingdom, 2012–2014. London: The Stationery Office.

Post, S. (2000). The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying. Baltimore, MD: The John Hopkins University Press.

Preston, L., Marshall, A. & Bucks, R. (2007). Investigating the ways that older people cope with dementia: A qualitative study. Aging and Mental Health 11(2): 131–143. DOI: 10.1080/13607860600844572

Priestley, M. (2004). Generating debates: Why we need a lifecourse approach to disability issues. In J. Swain, S. French, C. Barnes& C. Thomas (eds.), Disabling Barriers, Enabling Environments (pp. 94–99). London: Sage.

Reed, J., Cantley, C., Clarke, C. L. & Stanley, D. (2002). Services for younger people with dementia: Problems with differentiating needs on the basis of age. Dementia 1(1): 95–112. DOI: 10.1177/147130120200100105

Roach, P., Drummond, N. & 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: 26–32. DOI: 10.1016/j.jaging.2015.12.001

Roach, P., Keady, J. & Bee, P. (2012). ‘‘It’s easier just to separate them’’: Practice considerations in the mental health care and support of younger people with dementia and their families. Journal of Psychiatric and Mental Health Nursing 19(6): 555–562. DOI: 10.1111/j.1365-2850.2011.01836.x

Roach, P., Keady, J., Bee, P. & Hope, K. (2008). Subjective experiences of younger people with dementia and their families: Implications for UK research, policy and practice. Reviews in Clinical Gerontology 18(2): 165–172. DOI: 10.1017/S0959259809002779

Royal College of Psychiatrists and Alzheimer’s Society London. (2006). Services for Younger People with Alzheimer’s Disease and Other Dementias. Council Report CR135. London: Royal College of Psychiatrists and Alzheimer’s Society.

Sabat, S. (2001). The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Oxford: Blackwell.

Segal, L. (2013). Out of Time: The Perils and Pleasures of Ageing. London: Verso.

Steeman, E., Godderis, J., Grypdonck, M., De Bal, N. & De Casterle, B. D. (2007). Living with dementia from the perspective of older people: Is it a positive story? Aging and Mental Health 11(2): 119–130. DOI: 10.1080/13607860600963364

Svanberg, E., Spector, A. & Stott, J. (2011). The impact of young onset dementia on the family: A literature review. International Psychogeriatrics 23(3): 356–371. DOI: 10.1017/S1041610210001353

Tindall, L. & Manthorpe, J. (1997). Early-onset dementia: A case of illtiming? Journal of Mental Health 6(3): 237–249. DOI: 10.1080/09638239718770

Tolhurst, E., Bhattacharyya, S. & Kingston, P. (2014). Young onset dementia: The impact of emergent age-based factors upon personhood. Dementia 13(2): 193–206. DOI: 10.1177/1471301212456278

Weicht, B. (2011). Embracing dependency: Rethinking (in)dependence in the discourse of care. The Sociological Review 58(2): 205–224.

Weiss, R. & Bass, S. (2002). Introduction. In R. Weiss & S. Bass (eds.), Challenges of the Third Age: Meaning and Purpose in Later Life (pp. 3–12). New York: Oxford University Press.

Werner, P., Stein-Shvachman, I. & Korczyn, A. (2009). Early onset dementia: Clinical and social aspects. International Psychogeriatrics 21(4): 631–636. DOI: 10.1017/S1041610209009223