Psychosocial impact of being diagnosed with mild cognitive impairment: patient and carer perspective

Abstract

BACKGROUND: Mild cognitive impairment (MCI) may represent an intermediate, prodromal phase of dementia. Although persons with MCI (PwMCI) are able to function independently, they often experience reduced ability to carry out their usual activities. This can result in social, emotional and functional challenges. AIMS: To explore the understanding and psychosocial impact of receiving a diagnosis of MCI on patients and carers. METHOD: A cross-sectional cohort study was conducted at St James's Hospital Memory Clinic involving patients who attended the clinic for assessment from 1 January 2020 to 30 April 2021 and received a diagnosis of MCI. We completed questionnaires with patients and a nominated family member or friend of each patient (FwMCI). RESULTS: Forty-seven PwMCI participated in the study, and 36 nominated family members and/or friends completed the FwMCI questionnaire. In our cohort of PwMCI, most of the participants were not aware of their diagnosis; only 21% used the term MCI, and only 25% attributed their problems to a pathological cause. The majority of participants had no recollection of any discussion around the likelihood of progression. One-third of participants expressed relief that they did not have dementia. Most PwMCI reported positive psychological well-being and did not endorse symptoms of depression or anxiety. There was slight discordance of illness perception among the PwMCI-FwMCI dyads. Forty-seven per cent of FwMCI reported at least a mild degree of carer burden on the Zarit Burden Scale. CONCLUSIONS: Patients' awareness of being diagnosed with MCI is relatively limited. Public education campaigns raising awareness about MCI can help influence the 'illness representation' for MCI and enable people to seek timely advice and support.