Perspectives of People with Dementia: Experiencing Shame. An Interpretative Phenomenological Analysis

Background People with dementia who have participated in research have reported experiencing shame (Cheston, in press; Mitchell, McCollum & Monaghan, 2013), and other uncomfortable self-conscious experiences, such as self-criticism (Langdon, Eagle & Warner, 2006), embarrassment (Imhof, Wallhagen, Mahrer-Imhof & Monsch, 2006), and fears of stigma (Harman & Clare, 2006). Public Health guidance has emphasised the importance of addressing the stigma and marginalisation of people with dementia (Department of Health, 2009; World Health Organisation & Alzheimer’s Disease International, 2012). Methodology This study uses Interpretative Phenomenological Analysis to explore experiences of shame for six people in the early stages of dementia, living independently in the community. Data was collected through the use of individual, semi-structured interviews conducted within participants’ homes. The interviews were transcribed by the primary researcher and analysed through an in-depth, interpretive examination. Results Four superordinate themes emerged from the data. Firstly, Avoidance reveals how the participants made several levels of attempts to hide and distance themselves from shaming experiences. Secondly, the participants’ accounts highlight Negative Self-Perceptions, including a weakening sense of self, a loss of value, and meaninglessness. Thirdly, Relationship Matters involve issues around trust, feeling a burden, and the impact of past relationships on current levels of shame. Fourthly, Uncertainty and loss of control highlights the participants’ search for an understanding of their experiences, and fears about an unknown future and losing control. Conclusion The study contributes ideas for developing both public and professional awareness for promoting non-shaming experiences for people with dementia. In particular, suggestions are provided for improving communication during the assessment and diagnosis process, as well as options for responding to shame through psychological therapies.

Name dc:type.qualificationname

phd

Level dc:type.qualificationlevel

doctoral

Grantor dc:publisher.institution

University of East Anglia

Year dc:date.issued

2015

Author dc:creator

• Aldridge, Hannah

Language dc:language

en