Exploring the experiences of people with mild cognitive impairment and their caregivers with particular reference to healthcare - a qualitative study

Background: The aim of this study was to investigate the experiences of people with mild cognitive impairment (MCI; PWMCI) and their "advocates," particularly within healthcare services. Methods: Semi-structured interviews were conducted with 23 PWMCI diagnosed <= 6 months ago and 20 advocates recruited via patients. The resulting data were content-analyzed. Results: PWMCI interviewed rarely reported negative impressions of their general practitioner (GP). Reports regarding memory services were more mixed: positive impressions related to finding the service to be "well run" and the staff "pleasant," negative ones to the assessment process or a perceived lack of feedback. Aside from improved information provision, most PWMCI had no suggestions for improvements to their healthcare. However, these results should be interpreted with caution as many of the PWMCI interviewed displayed evidence of impaired recall and/or insight relating to their condition and healthcare. Advocates generally reported more negative impressions of both contact with the PWMCI's GP (most commonly reporting a "dismissive" attitude) and memory services (with common complaints relating to the assessments used in clinics and lengthy waiting times). This group generally had suggestions for improvements to services - particularly regarding information provision, changes in the assessment process, and improvements in communication by services. Conclusions: To our knowledge, this is the first in-depth study of the difficulties experienced by PWMCI and their advocates which includes the context of healthcare provision. The specific needs of these groups, as described here, as well as those of people with dementia, should be considered when designing memory clinics and other related services.