Use and impact of the Alzheimer Experience: a free online media production to raise public awareness and enhance knowledge and understanding of dementia

Abstract

Objectives: This study aims to evaluate an online media production called 'the Alzheimer Experience' (AlzExp), which was developed to raise public awareness and enhance knowledge and understanding of dementia. Method: Before and after watching AlzExp, all visitors of AlzExp (February-June 2012) were asked to complete questionnaires on demographics, knowledge about dementia, attitude towards people with dementia (person-centeredness) and the use of AlzExp. McNemar's chi-squared test, multivariate linear regression analysis and paired t-tests were used to analyze change in knowledge, predictors for change in person-centered attitude and differences between subgroups in change in person-centered attitude.Results: Participants in this study (n ¼ 213) were mostly professionals and working with people with dementia, or had someone with dementia among their acquaintances. An increase of personcentered attitude between pre-and posttest was predicted by age, having a professional or personal relationship with someone with dementia, person-centeredness at pre-test and time spent in AlzExp. Professionals had a more person-centered attitude after watching AlzExp, as did younger people, those who spent more time in AlzExp and those who had a lower score at pre-test. Conclusion:The beneficial impact of AlzExp found in this study was modest and in particular present for people who deal with people with dementia (professionally or personally). More insight is needed in the effects of tools aimed at raising public awareness and enhancing knowledge and understanding of dementia to tackle stigmatization associated with dementia and, thereby, improving the quality of life of people with dementia and their caregivers.

Exploring self-experience practices in dementia care: A scoping review

“…In passive interventions [ 41 , 60 , 71 ], for example theatre interventions, the participants’ experiences occur through reflective observation. Participants are exposed to a concrete scenario in which they are not actively involved.…”

“…Two film intervention programmes [ 60 , 71 ] were identified: ‘Barbara’s Story’ and ‘Barbara’s Evolving Story’ [ 60 ] were designed to train an entire health facility by having personnel watch a film in groups, accompanied by facilitated discussions. The online media production ‘The Alzheimer Experience’ [ 71 ] aimed to provide public education via a website. Each scene was followed by information about the content and its relation to dementia.…”

“…Each scene was followed by information about the content and its relation to dementia. While one report emphasised comprehensive support and guidance for participants [ 60 ], the second publication [ 71 ] did not provide any detailed information for this purpose.…”

Reducing dementia-related stigma and discrimination among community health workers in Brazil: protocol for a randomised controlled feasibility trial

“…The most common approach is education; however, a wide variety of methods—from creative arts-based approaches to those which emphasise empowering people with mental health conditions—can be successful, including social contact interventions 18. Currently, very little is known about interventions which reduce stigma related to dementia19 and research on knowledge and attitudes related to dementia in Latin American countries is scarce 20 21. There is an urgent need for further research on dementia-related stigma in different contexts and cultures 1 6…”

Pensar El Estigma Social Y Los Programas Educativos Antiestigma, Desde La Complejidad

“…Si bien, se han realizado programas educativos que involucran estrategias innovadoras, como la atención centrada en el paciente, la optimización de habilidades de comunicación, el desarrollo y refuerzo de la empatía, el fortalecimiento de las habilidades de observación, la mejora en la calidad de la atención, la importancia de la participación familiar, la integración intergeneracional, el impacto de la enfermedad en las familias que tienen la enfermedad y el uso de herramientas de aplicación masiva a través de la utilización de tecnologías de la información y la comunicación tales como los cursos MOOC y el uso de redes sociales (Prins et al , 2020). El pensamiento causal que sigue en la actualidad la salud pública toma como base el determinar las causas que conllevan a la aparición de una enfermedad para eliminarlas, controlarlas o frenarlas, proporcionando una visión medicalizada y determinista del abordaje de los fenómenos que se estudian, que solo permite que se ubiquen unos determinantes sociales y ambientales que influyen en la aparición de la enfermedad (Friedman et al, 2021).…”