Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnosed in memory clinics in the UK

BMJ Open
Penny Xanthopoulou, Rose McCabe

Abstract

To explore people's experiences of cognitive decline and receiving a diagnosis of dementia. 61 semistructured interviews within 2 weeks of diagnosis. Audio recordings were transcribed, line-by-line coded using NVIVO V.11 and analysed using thematic analysis. 9 memory clinics (UK). People with mild/moderate dementia. Most participants were diagnosed with Alzheimer's disease (56% female, mean age 81 years). 104 codes were grouped into 22 categories, feeding into 9 subthemes and 4 overarching themes: (1) dissonance, threat to identity and visibility of dementia: dementia was associated with a progressive loss of competence, culminating in being an idiot, crazy and losing the plot. The stigma of dementia led people to hide their diagnosis from others, even close family members. However, decreasing competence in everyday tasks was becoming increasingly visible in family and wider social networks. (2) Vulnerability and being in limbo: people were frustrated by the impact of dementia on their lives and felt vulnerable. Moreover, people were disturbed by not knowing how much and when they would deteriorate further. (3) Loss of control and agency: loneliness, increasing dependence and becoming a burden foreshadowed increasing diminished...Continue Reading

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