We investigated perceptions of identity in Alzheimer’s disease and behavioural-variant frontotemporal dementia. We asked family members of people with dementia to describe them before and after onset of the disease, comparing across type (Alzheimer’s disease versus behavioural-variant frontotemporal dementia) and time period. Family members’ perceptions of people with dementia changed over time. Compared with Alzheimer’s disease, behavioural-variant frontotemporal dementia was perceived to cause greater disruption to identity and more often associated with negative moral traits. We found a relationship between assessments of moral character and perceived self-continuity. Our data revealed different ways family members navigate stability and change in the identity of their loved ones with dementia.
Ablitt, A., Jones, G.V. and Muers, J. (2009) Living with dementia: a systematic review of the influence of relationship factors, Aging & Mental Health, 13(4): 497–511, doi: 10.1080/13607860902774436.
Addis, D.R. and Tippett, L. (2004) Memory of myself: autobiographical memory and identity in Alzheimer’s disease, Memory, 12(1): 56–74, doi: 10.1080/09658210244000423
AIHW (Australian Institute of Health and Welfare) (2021) Dementia in Australia, www.aihw.gov.au/reports/dementia/dementia-in-aus.
Basting, A.D. (2003) Looking back from loss: views of the self in Alzheimer’s disease, Journal of Aging Studies, 17(1): 87–99, doi: 10.1016/S0890-4065(02)00092-0.
Beard, R.L. (2004) In their voices: identity preservation and experiences of Alzheimer’s disease, Journal of Aging Studies, 18(4): 415–28, doi: 10.1016/j.jaging.2004.06.005.
Beard, R.L. (2016) Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness, New York: New York University Press.
Birt, L., Poland, F., Csipke, E. and Charlesworth, G. (2017) Shifting dementia discourses from deficit to active citizenship, Sociology of Health & Illness, 39(2): 199–211, doi: 10.1111/1467-9566.12530
Bora, E., Walterfang, M. and Velakoulis, D. (2015) Theory of mind in behavioural-variant frontotemporal dementia and Alzheimer’s disease: a meta-analysis, Journal of Neurology, Neurosurgery & Psychiatry, 86(7): 714–9, doi: 10.1136/jnnp-2014–309445.
Boylstein, C. and Hayes, J. (2012) Reconstructing marital closeness while caring for a spouse with Alzheimer’s, Journal of Family Issues, 33: 584–612, doi: 10.1177/019251 × 11416449.
Bryden, C. (2020) Challenging the discourses of loss: a continuing sense of self within the lived experience of dementia, Dementia, 19(1): 74–82, doi: 10.1177/1471301219876711
Caddell, L.S. and Clare, L. (2010) The impact of dementia on self and identity: a systematic review, Clinical Psychology Review, 30(1): 113–26, doi: 10.1016/j.cpr.2009.10.003.
Caddell, L.S. and Clare, L. (2011) I’m still the same person: the impact of early-stage dementia on identity, Dementia, 10(3): 379–98, doi: 10.1177/1471301211408255.
Clare, L. (2003) Managing threats to self: awareness in early stage Alzheimer’s disease. Social Science & Medicine, 57(6): 1017–29, doi: 10.1016/S0277-9536(02)00476-8.
Cohen, D. and Eisdorfer, C. (1986) The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders, London: W.W. Norton.
Cohen-Mansfield, J., Parpura-Gill, A. and Golander, H. (2006) Salience of self-identity roles in persons with dementia: differences in perceptions among elderly persons, family members and caregivers, Social Science & Medicine, 62(3): 745–57, doi: 10.1016/j.socscimed.2005.06.031.
Fletcher, J.R. (2020) Renegotiating relationships: theorising shared experiences of dementia within the dyadic career, Dementia, 19(3): 708–20, doi: 10.1177/1471301218785511
Fontana, A. and Smith, R.W. (1989) Alzheimer’s disease victims: the ‘unbecoming’ of self and the normalization of competence, Sociological Perspectives, 32(1): 35–46, doi: 10.2307/1389006.
Hagan, R.J. and Campbell, S. (2021) Doing their damnedest to seek change: how group identity helps people with dementia confront public stigma and maintain purpose, Dementia, 20(7): 2362–79, doi: 10.1177/1471301221997307
Harding, N. and Palfrey, C. (1997) The Social Construction of Dementia, Philadelphia, PA: Jessica Kingsley.
Hayes, J., Boylstein, C. and Zimmerman, M. (2009) Living and loving with dementia: negotiating spousal and caregiver identity through narrative, Journal of Aging Studies, 23(1): 48–59, doi: 10.1016/j.jaging.2007.09.002.
Hellström, I., Nolan, M. and Lundh, U. (2007) Sustaining ‘couplehood’: spouses’ strategies for living positively with dementia, Dementia, 6(3): 383–409, doi: 10.1177/1471301207081571.
Hodges, J.R. and Piguet, O. (2018) Progress and challenges in frontotemporal dementia research: a 20-year review, Journal of Alzheimer’s Disease, 62(8): 1467–80, doi: 10.3233/JAD-171087.
Hughes, J.C. (2001) Views of the person with dementia, Journal of Medical Ethics, 27(2): 86–91, doi: 10.1136/jme.27.2.86.
Hutchinson, A.D. and Mathias, J.L. (2007) Neuropsychological deficits in frontotemporal dementia and Alzheimer’s disease: a meta-analytic review, Journal of Neurology, Neurosurgery & Psychiatry, 78(9): 917–28, doi: 10.1136/jnnp.2006.100669.
Hydén, L.C. and Nilsson, E. (2015) Couples with dementia: positioning the ‘we’, Dementia, 14(6): 716–33, doi: 10.1177/1471301213506923.
Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First, Philadelphia, PA: Open University Press.
Kontos, P.C. (2004) Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease, Ageing & Society, 24(6): 829–49, doi: 10.1017/S0144686X04002375.
Kopelman, M.D., Wilson, B.A. and Baddeley, A.D. (1989) The autobiographical memory interview: a new assessment of autobiographical and personal semantic memory in amnesic patients, Journal of Clinical and Experimental Neuropsychology, 11(5): 724–44, doi: 10.1080/01688638908400928
Kuhn, M.H. and McPartland, T.S. (1954) An empirical investigation of self-attitudes, American Sociological Review, 19(1): 68–76, doi: 10.2307/2088175.
Lindemann, H. (2009) Holding one another (well, wrongly, clumsily) in a time of dementia, Metaphilosophy, 40(3–4): 416–24, doi: 10.1111/j.1467-9973.2009.01592.x.
MacRae, H. (2010) Managing identity while living with Alzheimer’s disease, Qualitative Health Research, 20(3): 293–305, doi: 10.1177/1049732309354280.
McKhann, G.M. et al. (2011) The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease, Alzheimer’s & Dementia, 7(3): 263–9, doi: 10.1016/j.jalz.2011.03.005.
Merrick, K., Camic, P.M. and O’Shaughnessy, M. (2013) Couples constructing their experiences of dementia: a relational perspective, Dementia, 15(1): 34–50, doi: 10.1177/1471301213513029.
Molyneaux, V.J., Butchard, S., Simpson, J. and Murray, C. (2012) The co-construction of couplehood in dementia, Dementia, 11(4): 483–502, doi: 10.1177/1471301211421070.
Patterson, K.M., Clarke, C., Wolverson, E.L. and Moniz-Cook, E.D. (2018) Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis, International Psychogeriatrics, 30(6): 791–805, doi: 10.1017/S1041610216002374.
Perry, D.C., Sturm, V.E., Seeley, W.W., Miller, B.L., Kramer, J.H. and Rosen, H.J. (2014) Anatomical correlates of reward-seeking behaviours in behavioural variant frontotemporal dementia, Brain, 137(6): 1621–6, doi: 10.1093/brain/awu075.
Perry, J. and O’Connor, D. (2002) Preserving personhood: (re)membering the spouse with dementia, Family Relations, 51: 55–62, doi: 10.1111/j.1741-3729.2002.00055.x.
Phinney, A. (2006) Family strategies for supporting involvement in meaningful activity by persons with dementia, Journal of Family Nursing, 12(1): 80–101, doi: 10.1177/1074840705285382.
Pozzebon, M., Douglas, J. and Ames, D. (2016) Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research, International Psychogeriatrics, 28(4): 537–56, doi: 10.1017/S1041610215002239P.
Rascovsky, K. et al. (2011) Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia, Brain, 134(9): 2456–77, doi: 10.1093/brain/awr179.
Ronch, J.L. (1996) Mourning and grief in late life Alzheimer’s dementia: revisiting the vanishing self, American Journal of Alzheimer’s Disease, 11(4): 25–8, doi: 10.1177/153331759601100404.
Sabat, S.R. (2002) Surviving manifestations of selfhood in Alzheimer’s disease: a case study, Dementia, 1(1): 25–36, doi: 10.1177/147130120200100101.
Sabat, S.R. and Harré, R. (1992) The construction and deconstruction of self in Alzheimer’s disease, Ageing & Society, 12: 443–61, doi: 10.1017/S0144686X00005262
Shenk, D., Davis, B., Peacock, J.R. and Moore, L. (2002) Narratives and self-identity in later life: two rural American older women, Journal of Aging Studies, 16(4): 401–13, doi: 10.1016/S0890-4065(02)00073-7.
Strauss, A. and Corbin, J. (1990) Basics of Qualitative Research: Grounded Theory Procedures and Techniques, Newbury Park, CA: Sage.
Strohminger, N. and Nichols, S. (2014) The essential moral self, Cognition, 131(1): 159–71, doi: 10.1016/j.cognition.2013.12.005.
Strohminger, N. and Nichols, S. (2015) Neurodegeneration and identity, Psychological Science, 26(9): 1469–79, doi: 10.1177/0956797615592381.
Wadham, O., Simpson, J., Rust, J. and Murray, C. (2016) Couples’ shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood, Aging & Mental Health, 20(5): 463–73, doi: 10.1080/13607863.2015.1023769.
|May 2022 onwards||Past Year||Past 30 Days|
|Full Text Views||470||470||88|