Skip to main content

Advertisement

Log in

The Impact of Dementia on the Self: Do We Consider Ourselves the Same as Others?

  • Original Paper
  • Published:
Neuroethics Aims and scope Submit manuscript

Abstract

The decline in autobiographical memory function in people with Alzheimer’s dementia (AD) has been argued to cause a loss of self-identity. Prior research suggests that people perceive changes in moral traits and loss of memories with a “social-moral core” as most impactful to the maintenance of identity. However, such research has so far asked people to rate from a third-person perspective, considering the extent to which hypothetical others maintain their identity in the face of various impairments. In the current study, we examined the impact of perspective, comparing first- and third-person perspectives, as well as memory type. This online study asked 201 participants to consider hypothetical scenarios in which either themselves or another person (their parent, partner, or a stranger) experienced different types of memory failures associated with a diagnosis of AD. For each scenario, participants rated the degree to which the depicted individual remained the same person, and how impactful the impairment was. Social semantic memory failures – involving failures to recognise a loved one – were rated as most detrimental to self-continuity, and procedural memory failures the least. Averaged across all memory types, people considered their own and their partner’s self-continuity to be more resilient to memory failures than that of a parent or stranger. However, this pattern was reversed for some memory types: forgetting semantic or episodic information about close relationships was rated as more detrimental from a first-person than third-person perspective. Our findings suggest that perspective and type of memory impairment interact to impact judgements about the extent to which people maintain their identity when they experience dementia, and highlight the importance of social relationships to maintaining a sense of self.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. United Nations, Department of Economic and Social Affairs, Population Division. 2020. World Population Ageing 2019 (ST/ESA/SER.A/444). Retrieved from https://www.un.org/en/development/desa/population/publications/pdf/ageing/WorldPopulationAgeing2019-Report.pdf.

  2. Gallagher, S. 2013. A pattern theory of self. Frontiers in Human Neuroscience 7: 443. https://doi.org/10.3389/fnhum.2013.00443.

    Article  Google Scholar 

  3. Neisser, U. 1988. Five kinds of self-knowledge. Philosophical Psychology 1 (1): 35–59. https://doi.org/10.1080/09515088808572924.

    Article  Google Scholar 

  4. Conway, M.A. 2005. Memory and the self. Journal of Memory and Language 53 (4): 594–628. https://doi.org/10.1016/j.jml.2005.08.005.

    Article  Google Scholar 

  5. Bluck, S., & N. Alea. 2008. Remembering being me: The self continuity function of autobiographical memory in younger and older adults. In F. Sani (Ed.), Self Continuity: Individual and collective perspectives (p. 55–70). New York: Psychology Press.

  6. Bluck, S., and N. Alea. 2011. Crafting the TALE: Construction of a measure to assess the functions of autobiographical remembering. Memory 19 (5): 470–486. https://doi.org/10.1080/09658211.2011.590500.

    Article  Google Scholar 

  7. Habermas, T., and C. Köber. 2015. Autobiographical reasoning in life narratives buffers the effect of biographical disruptions on the sense of self-continuity. Memory 23 (5): 664–674. https://doi.org/10.1080/09658211.2014.920885.

    Article  Google Scholar 

  8. Prebble, S.C., D.R. Addis, and L.J. Tippett. 2013. Autobiographical memory and sense of self. Psychological Bulletin 139 (4): 815–840. https://doi.org/10.1037/a0030146.

    Article  Google Scholar 

  9. Cohen, D., & C. Eisdorfer. 1986. The loss of self: A family resource for the care of Alzheimer’s disease and related disorders. London: W.W. Norton.

  10. Irish, M., M. Hornberger, S. Lah, L. Miller, G. Pengas, P. J. Nestor, ..., & O. Piguet. 2011. Profiles of recent autobiographical memory retrieval in semantic dementia, behavioural-variant frontotemporal dementia, and Alzheimer's disease. Neuropsychologia 49 (9): 2694-2702. https://doi.org/10.1016/j.neuropsychologia.2011.05.017.

  11. El Haj, M., P. Antoine, J.L. Nandrino, and D. Kapogiannis. 2015. Autobiographical memory decline in Alzheimer’s disease: A theoretical and clinical overview. Ageing Research Reviews 23 (Pt B): 183–192. https://doi.org/10.1016/j.arr.2015.07.001.

    Article  Google Scholar 

  12. Mograbi, D.C., R.G. Brown, and R.G. Morris. 2009. Anosognosia in Alzheimer’s disease – the petrified self. Consciousness & Cognition 18 (4): 989–1003. https://doi.org/10.1016/j.concog.2009.07.005.

    Article  Google Scholar 

  13. Tippett, L.J., S.C. Prebble, and D.R. Addis. 2018. The persistence of the self over time in mild cognitive impairment and Alzheimer’s disease. Frontiers in Psychology 9: 94. https://doi.org/10.3389/fpsyg.2018.00094.

    Article  Google Scholar 

  14. Klein, S.B., L. Cosmides, and K.A. Costabile. 2003. Preserved Knowledge of Self in a Case of Alzheimer’s Dementia. Social Cognition 21 (2): 157–165. https://doi.org/10.1521/soco.21.2.157.21317.

    Article  Google Scholar 

  15. Strikwerda-Brown, C., M.D. Grilli, J. Andrews-Hanna, and M. Irish. 2019. “All is not lost” – Rethinking the nature of memory and the self in dementia. Ageing Research Reviews 54: 100932. https://doi.org/10.1016/j.arr.2019.100932.

    Article  Google Scholar 

  16. Klein, S.B., L. Cosmides, K.A. Costabile, and L. Mei. 2002. Is there something special about the self? A neuropsychological case study. Journal of Research in Personality 36 (5): 490–506. https://doi.org/10.1016/S0092-6566(02)00001-6.

    Article  Google Scholar 

  17. Klein, S.B., and C.E. Gangi. 2010. The multiplicity of self: Neuropsychological evidence and its implications for the self as a construct in psychological research. Annals of the New York Academy of Sciences 1191 (1): 1–15. https://doi.org/10.1111/j.1749-6632.2010.05441.x.

    Article  Google Scholar 

  18. Ryan, E.B., K.A. Bannister, and A.P. Anas. 2009. The Dementia Narrative: Writing to reclaim Social Identity. Journal of Aging Studies 23 (3): 145–157. https://doi.org/10.1016/j.jaging.2007.12.018.

    Article  Google Scholar 

  19. Harding, N., & C. Palfrey. 1997. The social construction of dementia. Philadelphia: Jessica Kingsley.

  20. Sabat, S.R., and R. Harré. 1992. The construction and deconstruction of self in Alzheimer’s disease. Ageing & Society 12: 443–443. https://doi.org/10.1017/S0144686X00005262.

    Article  Google Scholar 

  21. Erikson, E.H. 1968. Identity: Youth and crisis. New York: W.W. Norton & Company.

  22. Strohminger, N., and S. Nichols. 2014. The essential moral self. Cognition 131 (1): 159–171. https://doi.org/10.1016/j.cognition.2013.12.005.

    Article  Google Scholar 

  23. Strohminger, N., and S. Nichols. 2015. Neurodegeneration and Identity. Psychological Science 26 (9): 1469–1479. https://doi.org/10.1177/0956797615592381.

    Article  Google Scholar 

  24. Sheehan, K.B. 2018. Crowdsourcing research: Data collection with Amazon’s Mechanical Turk. Communication Monographs 85 (1): 140–156. https://doi.org/10.1080/03637751.2017.1342043.

    Article  Google Scholar 

  25. Flury, J.M., and W. Ickes. 2007. Having a weak versus strong sense of self: The Sense of Self Scale (SOSS). Self & Identity 6 (4): 281–303. https://doi.org/10.1080/15298860601033208.

    Article  Google Scholar 

  26. Sunderland, A., J.E. Harris, and A.D. Baddeley. 1983. Do laboratory tests predict everyday memory? A neuropsychological study. Journal of Verbal Learning & Verbal Behavior 22 (3): 341–357. https://doi.org/10.1016/S0022-5371(83)90229-3.

    Article  Google Scholar 

  27. Harris, C.B., A.J. Barnier, J. Sutton, and P.G. Keil. 2014. Couples as socially distributed cognitive systems: Remembering in everyday social and material contexts. Memory Studies 7: 285–297. https://doi.org/10.1177/1750698014530619.

    Article  Google Scholar 

  28. Haslam, C., J. Jetten, S.A. Haslam, C. Pugliese, and J. Tonks. 2011. ‘I remember therefore I am, and I am therefore I remember’: Exploring the contributions of episodic and semantic self-knowledge to strength of identity. British Journal of Psychology 102 (2): 184–203. https://doi.org/10.1348/000712610X508091.

    Article  Google Scholar 

  29. Razani, J., S. Bayan, C. Funes, N. Mahmoud, N. Torrence, J. Wong, ..., & K. Josephson. 2011. Patterns of deficits in daily functioning and cognitive performance of patients with Alzheimer disease. Journal of Geriatric Psychiatry and Neurology 24 (1): 23-32. https://doi.org/10.1177/0891988710390812.

  30. Ray, R.E. 2000. Beyond nostalgia: aging and life-story writing. Charlottesville: University Press of Virginia.

  31. Haslam, C., T.A. Morton, S.A. Haslam, L. Varnes, R. Graham, and L. Gamaz. 2012. “When the age is in, the wit is out”: Age-related self-categorization and deficit expectations reduce performance on clinical tests used in dementia assessment. Psychology & Aging 27 (3): 778–784. https://doi.org/10.1037/a0027754.

    Article  Google Scholar 

  32. Midorikawa, A., C.E. Leyton, D. Foxe, R. Landin-Romero, J.R. Hodges, and O. Piguet. 2016. All is not lost: Positive behaviors in Alzheimer’s disease and behavioral-variant frontotemporal dementia with disease severity. Journal of Alzheimer’s Disease 54 (2): 549–558. https://doi.org/10.3233/JAD-160440.

    Article  Google Scholar 

  33. Harris, S.A., A.D. Baird, & C.B. Harris. under review. “She starts to be her old self again”: Familial reflections of pre- and post-onset identity in people with Alzheimer’s and behavioural-variant frontotemporal dementia.

Download references

Funding

This research was supported by an NHMRC-ARC Dementia Research Development Fellowship awarded to Amee Baird (APP1104833) and an Australian Research Council Discovery Early Career Research Award to Celia B. Harris (DE150100396).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Celia B. Harris.

Ethics declarations

Ethics Approval

This research was approved by the Macquarie University Human Research Ethics Committee (Approval #5201831634903).

Disclosure of Interests

The authors have no conflicts of interest to report.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Appendix A: Scenarios

Appendix A: Scenarios

  1. 1.

    Your daughter comes to visit you, and the next day you call her on the phone and ask why she has not visited for so long. [Episodic Social Own]

  2. 2.

    You go to visit your father. You mention that your sister visited him yesterday, but he can’t recall her visiting and insists he hasn’t seen her for years. [Episodic Social Parent]

  3. 3.

    You go to see a play with your partner. The next day, you ask your partner a question about it, but they have forgotten the outing altogether. [Episodic Social Partner]

  4. 4.

    You pass your neighbour’s house and stop to talk to him in the garden. He tells you he has not had any visitors for a long time, even though you know his daughter visits every week. [Episodic Social Stranger]

  5. 5.

    You go to the local grocery shops and get lost on your way home. [Episodic Non-Social Own]

  6. 6.

    Your father calls you and tells you that he cannot find his way home from the local shops. [Episodic Non-Social Parent]

  7. 7.

    Your partner calls you on their way home from grocery shopping as they are lost and cannot find their way home. [Episodic Non-Social Partner]

  8. 8.

    In the corner shop, you overhear someone telling the shop assistant that they are lost and don’t know how to find their way home. [Episodic Non-Social Stranger]

  9. 9.

    When your son drops in to visit you, you don’t recognise him and think he must be selling something. [Semantic Social Own]

  10. 10.

    When you go to visit your mother, she does not recognise you and mistakes you for a childhood friend. [Semantic Social Parent]

  11. 11.

    Your partner wakes up distressed in the middle of the night and asks who you are. [Semantic Social Partner]

  12. 12.

    As you walk down the street, you see your neighbour refusing to let their son into their house, saying they don’t know who he is. [Semantic Social Stranger]

  13. 13.

    You are looking through old photo albums and find some from a previous overseas holiday, but you cannot recall which country you visited. [Semantic Non-Social Own]

  14. 14.

    You discuss an overseas family holiday with your father and he cannot recall the country that you visited. [Semantic Non-Social Parent]

  15. 15.

    You are looking at photos of an overseas trip you took with your partner and they cannot recall the country that you visited. [Semantic Non-Social Partner]

  16. 16.

    You see someone printing photos at the kiosk in front of you, complaining to their daughter that they can’t remember the trip on which the photos were taken. [Semantic Non-Social Stranger]

  17. 17.

    You go to your regular dance class but find that you forget the dance steps you were taught the week before. [Procedural Social Own]

  18. 18.

    Your mother tells you that she is having trouble keeping up with her dance class as she cannot recall the steps. [Procedural Social Parent]

  19. 19.

    You attend a weekly dance class with your partner and they cannot recall the dance steps they were taught the week before. [Procedural Social Partner]

  20. 20.

    You overhear someone in a café telling their friend that they will have to stop going to their dance class as they cannot recall the steps. [Procedural Social Stranger]

  21. 21.

    You try to add an appointment into your phone calendar. You have done this many times before but cannot recall how to do it. [Procedural Non-Social Own]

  22. 22.

    Your mother complains that she cannot figure out how to use her mobile phone, even though she has been using it successfully for several years. [Procedural Non-Social Parent]

  23. 23.

    Your partner cannot figure out how to send a text message to you, even though they have done this many times before. [Procedural Non-Social Partner]

  24. 24.

    Waiting for the doctor, you hear someone asking the receptionist for help using their mobile phone to call a taxi. They say they have forgotten how to use it, even though they have done it many times before. [Procedural Non-Social Stranger]

N.B. although scenarios are presented in blocks in this appendix, they were presented to each participant in a unique random order.

Identity Preservation (a, b, c) & Daily Importance (d, e) Questions:

  1. a)

    Would you/they/he/she still be the same person?

  2. b)

    Would you/they/he/she still know who you/they/he/she are/is?

  3. c)

    Would you/they/he/she still feel like your/their/him/her self?

  4. d)

    Would you/they/he/she be upset if this occurred?

  5. e)

    Would this impact on your/their/his/her daily life?

0 = not at all, 5 = to the fullest extent.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Harris, S.A., Baird, A., Matthews, S. et al. The Impact of Dementia on the Self: Do We Consider Ourselves the Same as Others?. Neuroethics 14 (Suppl 3), 281–294 (2021). https://doi.org/10.1007/s12152-021-09472-w

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12152-021-09472-w

Keywords

Navigation