[Subjective perception of and coping with dementia in its early stages. A qualitative interview study with people with dementia and their relatives - SUWADEM]

The study SUWADEM has completed the long overdue transition from objective to subjective research in the field of dementia in Germany. The perception and coping processes are reconstructed on the basis of 25 interviews with people with dementia (Pwids) and their family members. Data collection and analysis were conducted on principle of a qualitative research method, the "Grounded Theory". The subjective experience of dementia was presented in a biopsycho-social perspective. On the basis of the identified subjective ageing and disease theories, Pwids evaluate their perceived cognitive and functional deficits. According to the evaluation outcome the emotional distress varies. The lack of insight into the disease (anosognosia) in the early stage is mainly due to psychological (e.g. internalised stereotypes concerning old age) and social factors (e.g. undifferentiated subjective disease theories of person in authority). Within the framework of the disease coping process, anosognosia is a function of different forms of self-protection: (1) The regulation of emotions and the stabilisation of the sense of self-worth, (2) resistance to stigmatisation, (3) defence of one's own autonomy. The results indicate the importance of public relations work, which is intended to raise public awareness of the early stages of dementia. In addition Pwids have to be active partners in dementia research and in the development of support structures. Finally the development and evaluation of person-centered single- and group-interventions is absolutely necessary.