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A Psychosocial Model of Understanding the Experience of Receiving a Diagnosis of Dementia

Sub-department of Clinical Health Psychology, University College London

Heather Wilkinson

Centre for Research on Families and Relationships, University of Edinburgh

Based on the findings of the study `Tell me the truth': A subjective understanding of diagnosis disclosure (Pratt & Wilkinson, 2001), this article proposes a psychosocial model for understanding the experience of people with dementia. The model operates on two main aspects, the combined desire and/or ability to know the diagnosis, and the social context that surrounds an individual. The model proposes that these two aspects are inexorably linked and are represented as two axes. There are four `quadrants' represented in the model: detachment, distress, maximizing coping, and decline and denial. The model proposes that individual experience can be located in any of these `quadrants' as a function of the combined effect of social context, alongside individual response. The model proposes that social context can contribute to the experience of `distress' or the ability of individuals to access `maximizing coping strategies'. In terms of diagnosis disclosure the model advocates that when an individual shows an `ability and desire' to know their diagnosis, withholding the diagnosis may directly contribute to feelings of distress. This situation would be one example of the potential impact of the social context on individual experience. The implication for practice, and research, is that social context needs to be assessed and explored as part of individual assessment to find ways to minimize distress and maximize positive coping responses.

Key Words: dementia • diagnosis • psychosocial model • social model • subjective experience

Dementia, Vol. 2, No. 2, 181-199 (2003)
DOI: 10.1177/1471301203002002004


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