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Managing threats to self: awareness in early stage Alzheimer's disease

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  • Clare, Linda

Abstract

Lack of awareness is described as a clinical feature of Alzheimer's disease that is observed in a significant proportion of those assigned this diagnosis. There is an extensive literature emphasising biological explanations in which unawareness is viewed essentially as a symptom, but possible psychosocial factors, together with the socially constructed nature of expressed awareness, are largely neglected. The onset of dementia may be viewed as a threat to self occasioning attempts to regain control through a range of psychological strategies, which are likely to affect the ways in which people communicate an account of their experience and hence the extent to which they may be considered 'aware'. In the present study, 12 participants with a medical diagnosis of early stage Alzheimer's disease, who were described in clinical records as ranging from 'very aware' to 'unaware' of their illness, were interviewed on two occasions. Partners were also interviewed separately on each occasion. Transcripts were analysed using Interpretative Phenomenological Analysis. In response to their memory difficulties, participants were seen as engaging in the processes of acknowledging, reacting, explaining, experiencing the emotional impact, and adjusting. All participants acknowledged memory problems, indicating a basic awareness of changes in their memory functioning, but made varying judgements about the meaning and impact of these. The resulting spectrum of responses formed a continuum running from 'self-maintaining' to 'self-adjusting'. A self-maintaining stance related to attempts to normalise the situation and minimise the difficulties, thus maintaining continuity with prior sense of self, while a self-adjusting stance related to attempts to confront the difficulties and adapt one's sense of self accordingly. A preliminary model of the construction of awareness in early stage Alzheimer's is presented that acknowledges biological mechanisms but places the main emphasis on psychosocial factors and self-concept.

Suggested Citation

  • Clare, Linda, 2003. "Managing threats to self: awareness in early stage Alzheimer's disease," Social Science & Medicine, Elsevier, vol. 57(6), pages 1017-1029, September.
  • Handle: RePEc:eee:socmed:v:57:y:2003:i:6:p:1017-1029
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    Cited by:

    1. Thanh-Thao Luong & Van-Nam Huynh & Eunyoung Kim, 2023. "A Hybrid Use of Soft Systems Methodology for Developing a Framework of Evidence-Based Teaching for Hospitality and Tourism Instructors in Vietnam," Systemic Practice and Action Research, Springer, vol. 36(2), pages 241-274, April.
    2. Berry, Brandon & Apesoa-Varano, Ester Carolina & Gomez, Yarin, 2015. "How family members manage risk around functional decline: The autonomy management process in households facing dementia," Social Science & Medicine, Elsevier, vol. 130(C), pages 107-114.
    3. Francine Ducharme & Line Beaudet & Alain Legault & Marie-Jeanne Kergoat & Louise Lévesque & Chantal Caron, 2009. "Development of an Intervention Program for Alzheimer's Family Caregivers Following Diagnostic Disclosure," Clinical Nursing Research, , vol. 18(1), pages 44-67, February.
    4. Langdon, Shani A. & Eagle, Andrew & Warner, James, 2007. "Making sense of dementia in the social world: A qualitative study," Social Science & Medicine, Elsevier, vol. 64(4), pages 989-1000, February.
    5. Cohen-Mansfield, Jiska & Parpura-Gill, Aleksandra & Golander, Hava, 2006. "Salience of self-identity roles in persons with dementia: Differences in perceptions among elderly persons, family members and caregivers," Social Science & Medicine, Elsevier, vol. 62(3), pages 745-757, February.
    6. Surr, Claire Alice, 2006. "Preservation of self in people with dementia living in residential care: A socio-biographical approach," Social Science & Medicine, Elsevier, vol. 62(7), pages 1720-1730, April.
    7. Hanna‐Mari Pesonen & Anne M. Remes & Arja Isola, 2013. "Diagnosis of dementia as a turning point among Finnish families: A qualitative study," Nursing & Health Sciences, John Wiley & Sons, vol. 15(4), pages 489-496, December.
    8. Smith, Robert Courtney, 2021. "Analytic autoethnography of familial and institutional social identity construction of My Dad with Alzheimer's: In the emergency room with Erving Goffman and Oliver Sacks," Social Science & Medicine, Elsevier, vol. 277(C).
    9. Rapp, Thomas, 2014. "Patients' diagnosis decisions in Alzheimer's disease: The influence of family factors," Social Science & Medicine, Elsevier, vol. 118(C), pages 9-16.
    10. Beard, Renée L. & Fox, Patrick J., 2008. "Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss," Social Science & Medicine, Elsevier, vol. 66(7), pages 1509-1520, April.
    11. Clare, Linda & Rowlands, Julia & Bruce, Errollyn & Surr, Claire & Downs, Murna, 2008. "'I don't do like I used to do': A grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care," Social Science & Medicine, Elsevier, vol. 66(11), pages 2366-2377, June.

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