IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v64y2007i4p989-1000.html
   My bibliography  Save this article

Making sense of dementia in the social world: A qualitative study

Author

Listed:
  • Langdon, Shani A.
  • Eagle, Andrew
  • Warner, James

Abstract

The reactions of others can have a significant effect on the lived experience of dementia. Although the literature contains some theories of dementia that take this into account, few studies have asked people with early stage dementia about their experiences of other people's reactions to their changed condition and social status. In the present study, 12 men and women aged 66-87 with early stage dementia, recruited through an Older Adult Mental Health Unit in London, England, were interviewed to elicit their views on others' reactions to them since receiving the diagnosis. They were also asked what they thought others understood by the terms 'dementia' and 'Alzheimer's Disease'. Transcripts were analysed using Interpretative Phenomenological Analysis. Participants displayed somewhat negative reactions to the term dementia, and were concerned others would associate it with being 'demented'. In connection with this, although they were comfortable sharing their diagnosis with those closest to them, they were reluctant to do so beyond this private inner circle. Participants were keen for those who did know about the condition to respond authentically and honestly to them, helping them when necessary but as far as possible carrying on life as normal. A number of the participants seemed to be trying to work out how dementia differed from age-related memory loss and compared themselves with others to aid their understanding of this. The implications of these findings for clinical practice, carers and wider society are discussed.

Suggested Citation

  • 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.
  • Handle: RePEc:eee:socmed:v:64:y:2007:i:4:p:989-1000
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(06)00553-3
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. 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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Johnson, Rebecca & Harkins, Kristin & Cary, Mark & Sankar, Pamela & Karlawish, Jason, 2015. "The relative contributions of disease label and disease prognosis to Alzheimer's stigma: A vignette-based experiment," Social Science & Medicine, Elsevier, vol. 143(C), pages 117-127.
    2. 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).
    3. 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.
    4. 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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. 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.
    2. 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.
    3. 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.
    4. 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.
    5. 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.
    6. 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).
    7. 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.
    8. 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.
    9. 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.
    10. 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.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:64:y:2007:i:4:p:989-1000. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.