City Research Online

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

Xanthopoulou, P. and McCabe, R. ORCID: 0000-0003-2041-7383 (2019). 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, 9(8), e026071. doi: 10.1136/bmjopen-2018-026071


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.

Publication Type: Article
Additional Information: © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See:
Subjects: R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Departments: School of Health Sciences > Healthcare Services Research & Management
Date available in CRO: 10 Sep 2019 10:01
Date deposited: 9 September 2019
Date of first online publication: 1 August 2019
Text - Published Version
Available under License Creative Commons Attribution.

Download (504kB) | Preview



Downloads per month over past year

View more statistics

Actions (login required)

Admin Login Admin Login