A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark

Ward, Alison; Thoft, Diana Schack; Lomax, Helen; Parkes, Jacqueline

doi:10.1177/1471301218786636

Cited by 10 publications

(18 citation statements)

References 45 publications

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“…Two studies report that participants were aware that their ability to learn had decreased; and therefore, newer tasks were harder to remember [ 95 , 116 ]. A substantial number of studies report on challenges in communication: participants did not find the right words, repeated themselves in conversations, forgot what they wanted to say, or found it difficult to follow conservations as their focus was reduced [ 71 , 77 , 88 , 95 , 100 , 101 , 111 , 116 , 118 , 121 , 122 ]. This was illustrated by one of the participants as follows: “Sometimes I notice that I don’t give the right answers, you know, stray from the theme.…”

Section: Resultsmentioning

confidence: 99%

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.

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Section: Resultsmentioning

confidence: 99%

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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“…Twelve (65–82 years old) people with early-stage dementia participated in the study. They were recruited from the Adult School Voksenskolen for Kommunikation og Undervisning (VUK) in Denmark (VUK, 2013; Ward, Sorensen, Kousgaard, Thoft, & Parkes, 2018; Ward, Thoft, Lomax, & Parkes, 2018). This school centres on compensatory special education for adults, with a focus on lifelong learning regardless of functionality and on individual resources rather than diagnosis.…”

Section: Methods: Developing a Qualitative Participatory Research Modelmentioning

confidence: 99%

“…At VUK, people with early-stage dementia are called students. They receive cognitive training and stimulation, physical training and training in various creative disciplines at the school (VUK, 2013; Ward, Sorensen et al., 2018; Ward, Thoft et al., 2018). VUK was selected as the setting because it allowed collaboration with participants who knew each other in advance in an environment well-known to them.…”

Section: Methods: Developing a Qualitative Participatory Research Modelmentioning

confidence: 99%

The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research

et al. 2018

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Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups ( n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.

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“…The Lifelong Learning concept is an on‐going cognitive stimulation programme, aiming to support cognition, decision making, activities of daily living and social engagement. 22 , 23 , 24 , 25 , 26 The study followed the Standards for Reporting Qualitative Research (SRQR checklist for qualitative studies).…”

Section: Methodsmentioning

confidence: 99%

Assessing people with dementia participating in cognitive stimulation activities—A qualitative pilot video analysis exploring the importance of facilitating the participation

Thoft

Ottesen

Jensen

et al. 2021

Health Expectations

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Background This pilot video analysis was part of a feasibility control study, which aimed to gain information about the size and variability of the changes in outcome measures to plan a substantive effect study. It compared a cognitive stimulation programme named Lifelong Learning with other existing dementia services. Objective The pilot video analysis explored how facilitation is performed, when assessing people with dementia with standardized measures, to ensure their participation in research. Design A test battery of five measures (Mini‐Mental State Examination (MMSE), Quality of Life in Alzheimer's Disease Scale (QoL‐AD), General Self‐Efficacy Scale, Rosenberg Self‐Esteem Scale and Hawthorn Friendship Scale) was used. Each assessment was video‐recorded. The findings from a microanalysis of 10 videos are presented in this article. Setting The study involved 55 active participants with mild‐to‐moderate dementia in six municipalities in Northern Denmark. Results The identified themes related to supportive facilitation: Positive facilitator strategies; Creating a safe and comfortable environment; and to dilemmas in facilitation: Balancing multiple dilemmas and Balancing the MMSE test. Discussion Results are discussed in relation to using standardized measures. Conclusion The quality of facilitation when using standardized measures is of great importance as it may influence the participant, the assessment and the answers given. The facilitation role needs to be thoroughly planned and executed with ethical consideration to improve the participation of vulnerable groups in research and ensure a person‐centred approach. Patient or public contribution The identified measures were chosen based upon previous qualitative results and user‐involvement workshops with people with dementia.

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A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark

Cited by 10 publications

References 45 publications

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research

Assessing people with dementia participating in cognitive stimulation activities—A qualitative pilot video analysis exploring the importance of facilitating the participation

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