'It's definitely not Alzheimer's': Perceived benefits and drawbacks of a mild cognitive impairment diagnosis

Abstract

Objectives: To understand the perceived benefits and drawbacks of a mild cognitive impairment (MCI) diagnosis from the perspective of those living with the label.

Methods: Participants were included if they had recently (within 6 months) received a MCI diagnosis. We also recruited close family members to gain their perspectives. Each was interviewed separately with a semi-structured topic guide covering three areas: (1) experience of cognitive impairments and changes in the individual; (2) impact of cognitive impairment(s) on daily activities and social relationships; and (3) experience of the diagnosis process and living with the label. Transcribed interviews were stored in Nvivo^® . Grounded theory procedures of memo writing, open coding, constant comparison, and focused coding were used to derive conceptual themes.

Results: Eighteen dyads were interviewed. The overarching themes surrounding diagnosis benefits and drawbacks were as follows: (1) emotional impact of the diagnosis; (2) practical benefits and limitations of the diagnosis, in terms of (a) understanding one's symptoms and (b) access to clinical support. Although participants were glad to have clinical support in place, they expressed frustration at the lack of clarity, and the lack of available treatments for MCI. Consequently, living with MCI can be characterized as an ambivalent experience.

Conclusion: As a clinical label, MCI appears to have little explanatory power for people living with cognitive difficulties. Work is needed to clarify how clinicians and patients communicate about MCI, and how people can be helped to live well with the label. Despite an emerging body of prognostic studies, people with MCI are likely to continue living with significant uncertainty. Statement of contribution What is already known on this subject? Mild cognitive impairment is a state of cognitive decline between normal cognitive ageing and dementia. This clinical category has been an important domain of academic debate over recent years. From a clinical perspective, diagnosing MCI is a helpful way to enable communication between health professionals, and a diagnosis can be important for patients in need of support and education. However, diagnosis can be fraught with difficulties, while patients have reported significant uncertainty about the label. This study aimed to examine the perceived benefits and drawbacks of receiving a MCI diagnosis. What does this study add? The emotional impact of a MCI diagnosis is complex and raised conflicting and fluctuating emotions in our participants' accounts - most notably worry and relief. Participants were glad to have clinical support available to call on; however, they were frustrated at the lack of 'treatments' available for MCI and were often anxious to slow any cognitive decline down Health psychologists will have an important role to play in understanding and improving clinical communication about MCI.

Keywords: ageing; diagnosis; grounded theory; illness experiences; illness perceptions; memory; mild cognitive disorder; mild cognitive impairment; neurocognitive illness; qualitative research; semi-structured interviews.