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Abstract
Objectives To explore people’s experiences of cognitive decline and receiving a diagnosis of dementia.
Design 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.
Setting 9 memory clinics (UK).
Participants People with mild/moderate dementia.
Results 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 personal agency. (4) Maintaining agency and self-worth: some people focused on what they could do and the benefits of diagnosis. This involved accepting the diagnosis, adapting to changes by using coping strategies and accepting support from others. This helped people to maintain personal agency and self-worth.
Conclusion While personal acceptance of dementia is challenging, people are additionally troubled about disclosing their diagnosis to others. Limited time in diagnostic appointments and limited postdiagnostic support leave few opportunities to address the emotional impact of a dementia diagnosis. There may be opportunities for healthcare professionals to discuss with patients the benefits of staying positive, implementing coping strategies and accepting support to live well with dementia.
- dementia
- patient experience
- diagnosis
- stigma
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Footnotes
Contributors RM conceived the idea for this study and obtained project funding. PX contributed to the data collection. RM and PX were responsible for data analysis and interpretation of data. PX prepared the first draft of the paper. RM and PX contributed to drafting of the paper and approved the final manuscript.
Funding This study was funded by the NIHR Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-1111-26063).
Competing interests None declared.
Ethics approval The study obtained ethical approval from the Camden and Islington Research Ethics Committee (13/LO/1309).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Interviews and observational data from this study are personally identifiable for patients and staff, and are therefore not available for data sharing.
Patient consent for publication Not required.