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

Abstract

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.

The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

“…The findings of this study would therefore parallel the findings of studies [37,38] that people with dementia are often unaware of their condition, pre-diagnosis.The news of a diagnosis of dementia was met with feelings of shock and disbelief and was upsetting for all three women. This study therefore supports previous findings [39][40][41] with regard to a diagnosis of dementia causing emotional distress.…”

“…Fears associated to the stigma of dementia did result in reluctance from people to engage in open discussion about their condition, which mirrors other studies [41] . This was certainly the case with Julie, who felt very much alone and was scared of the services taking over her life.…”

Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer's disease?

“…Based on these findings, the authors went on to develop a psychosocial model to help understand the experience of patients in receiving a diagnosis of dementia (Pratt and Wilkinson, 2003). The model draws on more recent conceptualizations of dementia that emphasize the interaction between biomedical and psychological factors-that tend to focus on the individual-and the social context that surrounds the person (e.g.…”

Primary care and dementia: 1. diagnosis, screening and disclosure

“…The benefits of a sharing a diagnosis include (Pratt and Wilkinson, 2003;Bamford et al, 2004) ending uncertainty, confirming suspicions, increasing understanding of problems, giving access to support, promoting positive coping strategies, facilitating planning and fulfilment of short term goals. (Husband, 1999(Husband, , 2000Smith and Beattie, 2001).…”