Illness representations and lived experience in early-stage dementia

Area of Science:

• Psychology of Health
• Neuroscience
• Gerontology

Background:

• The self-regulation model of illness behavior offers a framework for managing chronic illness threats.
• Illness representations play a crucial role in this self-regulation model.
• This framework has not been previously applied to the context of early-stage dementia.

Purpose of the Study:

• To explore illness representations in individuals with early-stage dementia.
• To understand how these representations relate to the daily lived experiences of people with dementia.
• To apply the self-regulation model of illness behavior to the context of dementia.

Main Methods:

• Semistructured interviews were conducted with 9 participants diagnosed with early-stage dementia.
• Interpretative phenomenological analysis (IPA) was used to analyze the interview data.
• Focus on lived experience and individual perceptions of dementia.

Main Results:

• Two overarching themes emerged: 'It will get worse' (understanding of dementia progression) and 'I want to be me' (desire to maintain identity).
• Participants experienced personal and interpersonal dilemmas related to their illness.
• Illness representations significantly influence the lived experience of early-stage dementia.

Conclusions:

• Illness representations are central to the lived experience of early-stage dementia.
• A preliminary model is presented illustrating the contribution of illness representations to daily life.
• Findings highlight the importance of identity maintenance and understanding of disease progression for individuals with dementia.