Experiencing dementia: How does assessment of cognition and language relate to daily life?

This Swedish study investigates how persons living with dementia report their experiences of cognitive and linguistic testing, as well as their perspectives on the communicative resources and barriers they experience in daily interactions. Eight dyads were included in this qualitative exploratory study; eight persons with dementia and eight family members with whom they interact with daily. Semi-structured interviews, with questions focusing on experiences of diagnostic pathways as well as communicative and cognitive function in daily life, were carried out together with standard clinical testing. The data were analysed using qualitative content analysis. The results shed light on the experiences of uncertainty during the dementia assessment process related to the assessment tasks, the consequences of the assessment and receiving a diagnosis. We interpret this as a result of the unfamiliar clinical focus on function as measured in decontextualised tasks, compared to the participants’ view based on their abilities in everyday life. The study also reveals that adjustments in daily life that are necessitated by the consequences of neurological change are often developed in collaboration between the person with dementia and their conversation partners. There are, however, reports of conflicting feelings by the persons diagnosed with dementia, and by their families, as well as their views on how to best handle change, while maintaining a sense of being a competent person through the progression of disease.