Managing identity in early-stage dementia: maintaining a sense of being valued

Abstract

Focusing on loss or maintenance of identity in persons with dementia may affect how they are approached and cared for. We performed a longitudinal study of 17 elderly persons with early-stage dementia with the aim of exploring changes in the experience of living with dementia. The major theme – a struggle to be valued – was clearly present in follow-up interviews. However, we observed a gradual shift in the concept of being valued: a shift from ‘being valued for what you do’ toward ‘being valued for who you are’. This progression represents a shift from performance-related core values of identity to those that are existentially related. These findings suggest that the self can be maintained by adjusting to loss

Living positively with dementia: a systematic review and synthesis of the qualitative literature

“…Positive experiences of loving relationships with others are strongly present in the findings of several studies (Caddell & Clare, 2011;Jonas-Simpson & Mitchell, 2005;Ostwald et al, 2002;Parse, 1996;Steeman et al, 2013):…”

“…For example, Gillies (2000) reports an exploratory study using thematic analysis. Most studies were cross-sectional with the exception of four longitudinal studies (Clare Roth & Pratt, 2005;Macquarrie, 2005;Nygard & Borell, 1998;Steeman et al, 2013). The disciplinary orientation of authors was varied and included clinical psychologists, nurses and social workers.…”

“…However, ensuring that life remains the same appears to require purpose, persistence and energy and this also involves a conscious decision to 'keep going' (e.g. Clare et al, 2008;Macquarrie, 2005;Steeman et al, 2013). Several studies make reference to the notion that this 'keeping going' requires strong agency on the part of the person with dementia: (2005) …”

“…Across studies, the importance of maintaining a sense of identity in general was highlighted as a strong concern for people with dementia (e.g. Clare et al, 2008;Harman & Clare, 2006;Steeman et al, 2013). In tandem, the need to feel of worth and 'believe in yourself' was highlighted (e.g.…”

“…(From the theme 'Seeing self as the same person'; Werzak & Stewart, 2002, p. 81) Furthermore, that for some people, that process of adjusting to a diagnosis of dementia may result in a shift in core values relating to identity (Steeman et al, 2013) potentially allowing for, the preservation of a positive sense of identity:…”