Relational experiences of people seeking help and assessment for subjective cognitive concern and memory loss

Abstract

Objective: To understand the experience of people who seek help for subjective cognitive concern and memory loss, including people not referred for further assessment. To understand the patients’ perspective of the medical process of receiving a cognitive assessment. This work is situated within the context of policy priorities for dementia diagnosis.

Methods: Participants with and without dementia were recruited through NHS trusts and community organisations in four regional areas in England. Data were collected using longitudinal qualitative interviews. Transcript data were thematically analysed.

Results: Sample of 41 people (mean 75 years, 25 dementia diagnoses). Interpretative thematic analyses focused on the presence or absence of trust in relational experiences. There were three transition points where trust could be specifically developed or undermined: (1) deciding to seek help; (2) healthcare practitioners’ response to help-seeking; (3) process and outcome of assessment. Triggers for help-seeking for subjective cognitive concern were being prompted by family and knowing a relative with dementia. When participants perceived healthcare practitioners’ behaviour as dismissive, they had less trust in the outcome of the healthcare encounter. Misunderstandings and absence of trust in assessment processes led to participants stating they did not fully agree with the outcomes of the assessment.

Conclusions: Healthcare practitioners have an important role in supporting people with subjective cognitive concern ensuring patients have trust in assessment outcomes. Where the validity of the assessment process is seen as ambiguous, people can be left dealing with uncertainty, rather than being clear about ways they can manage their condition, situation or status.

Keywords:

• Cognitive assessment
• dementia and cognitive disorders
• primary care
• qualitative methods
• screening and diagnosis

Acknowledgements

Thank you to the participants in this study. Thank you to the NHS Trust staff who supported recruitment and data collection. Thanks also to the management team of the Promoting Independence in Dementia programme Chief Investigator Professor Martin Orrell who have provided constructive peer review of our work.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Economic and Social Research Council/National Institute of Health [grant number ES/L001802/2]. This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.