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Lookup NU author(s): Dr Ríona McArdle, Professor Sarah Slight
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Background: More than 55 million people have dementia worldwide; it is one of the major causes of disability and dependency globally. Mild cognitive impairment (MCI) is considered an early indicative factor for the development of dementia. There are growing efforts to develop tools to detect and diagnose MCI earlier; consequently, we need to understand the perspectives of patients and carers regarding the implications of a MCI diagnosis. Objective: To systematically review the qualitative literature to understand the impact of a MCI diagnosis on both the individual and their carers, focusing on wellbeing, everyday behaviours, and healthcare utilisation. Methods: Key search terms were used to search five databases (Web of Science, Scopus, Medline, Embase and Psychinfo) on 21st September 2022, and updated 28th April 2024. Studies were included if they were peer-reviewed qualitative research published in English that obtained the perspectives of community-dwellers with MCI or carers and focused on either their everyday behaviours, wellbeing, and/or healthcare utilisation. The protocol was pre-registered on PROSPERO (CRD42021291995). Data was synthesized narratively following PRISMA guidelines. Results: Fifteen papers were included. Reasons for exclusion included a focus on discrete symptoms only (n=16), incorrect study design (n=10), publication type (n=6), context (n=4), population (n=6), or unable to retrieve (n=6). Key qualitative findings highlighted the negative impact of an MCI diagnosis on the wellbeing of both patients and carers, due to stigma and limited understanding of the diagnosis/prognosis. Changes in everyday behaviour varied, with either increased or decreased motivation to conduct physical activity, hobbies and/or engage in social events or opportunities. Both patients and carers were sometimes dissatisfied with healthcare services, describing how their concerns were often not addressed. Trust in clinicians emerged as a key theme, with ineffective communication during clinical consolations highlighted as a reason for lack of trust. Conclusions: This review indicated that people with MCI and their carers perceived a MCI diagnosis as impactful to them across key facets of life. There was a critical need to effectively and clearly communicate the diagnosis and prognosis of MCI to ensure trust in healthcare services, and provide risk-reduction strategies to support wellbeing.
Author(s): Connolly EM, Mc Ardle R, Bimpong KAA, Slight SP
Publication type: Article
Publication status: Published
Journal: Journal of Alzheimer's Disease
Year: 2024
Volume: 101
Issue: 3
Pages: 715-729
Print publication date: 24/09/2024
Online publication date: 29/08/2024
Acceptance date: 12/07/2024
Date deposited: 17/07/2024
ISSN (print): 1387-2877
ISSN (electronic): 1875-8908
Publisher: IOS Press
URL: https://doi.org/10.3233/JAD-231466
DOI: 10.3233/JAD-231466
ePrints DOI: 10.57711/fv37-ds26
Data Access Statement: Data sharing is not applicable to this article as no datasets were generated or analyzed during this study.
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