Right for knowledge – the perspective of significant others of persons with memory disorders

Abstract

People have a fundamental right to know about care and services within health care. This right is also important for persons with memory disorders (PwMD) and their significant others (SO) for empowering them to manage with difficult situations at home and in institution. This study explores the self-assessed level of received knowledge about care and services of the SOs of PwMDs and the understandability of that knowledge. This study employed an exploratory and correlational survey design in multisite settings for older people. Data were collected in Finland in 2010-2011 from the SOs of PwMDs (N = 304, n = 264, response rate 87%) using questionnaires, including the Knowledge of Care and Services for Persons with Memory Disorders; the level of knowledge and the understandability of the knowledge were assessed using visual analogue scale (VAS 0-100). Data were analysed statistically using descriptive statistics, independent samples t-test, one-way analysis of variance and Pearson's correlations coefficients. The self-assessed level of received knowledge of SOs about care and services was low (mean 47.7 ± 25.3 out of 100), with the highest level seen in medication (54.5 ± 31.1) and memory disorder as a disease (54.3 ± 30.3) and the lowest level in the services provided at home for PwMDs (45 ± 30.6) and generally for SOs (38.5 ± 31.7). SOs assessed the received knowledge as being understandable to a moderate degree (53.7 ± 25.5). More knowledge could be delivered to PwMDs to manage in their homes and especially to SOs to take care of PwMDs. New educational solutions could be created aimed at improving the understandability of the knowledge.