A feasibility and pilot study of a "lifelong learning" intervention for people with dementia.

BACKGROUND: Developing evidence for the use of psychosocial interventions for people with dementia is a research priority. This pilot study aimed to provide variability estimates for a set of outcome measures that would inform the development of a more extensive controlled study. The larger study will seek to explore the effect of attending a lifelong learning intervention for people with dementia compared to receiving treatment as usual. This pilot and feasibility stage also analysed how data collectors and researchers evaluated the use of the outcome measures in a sample of people with mild to moderate dementia. METHODS: Before initiating the pilot study, a participant consultation was conducted with people with dementia, who attend a lifelong learning service known as a dementia school, and their teachers. From this consultation, the research outcomes identified were the mini-mental state examination (MMSE), Quality-of-Life Alzheimer's Disease (QoL-AD), General Self-Efficacy Scale (GSE), Rosenberg self-esteem scale, and the Friendship scale. The following study was divided into two steps. In step 1, participants were people with dementia attending a dementia school (intervention group) or usual services (control group). The participants were tested at baseline and at a 6-month follow-up. Data were collected between November 2018 and July 2019. In step 2, feasibility and acceptability issues with the recruitment of participants, data collection process, and outcome measures, identified in step 1, were evaluated through a data collector focus group. RESULTS: Fifty-five people with dementia were included in the analysis. Step 1 provided estimates of changes from baseline to follow-up, and ancillary standard deviations were supplied for all outcome measures. Step 2 provided reflections on the feasibility and acceptability of the intervention, data collection, and outcome measures. This included views on how people with dementia experience participating in a test situation. CONCLUSIONS: This study provided estimates of change and variability in the outcome measures. Additionally, issues regarding data collection were identified and should be addressed in future studies. The project demonstrated how to support people with dementia to participate in research that is meaningful to them. TRIAL REGISTRATION: According to national legislation, registration with a database of clinical studies was optional, as the study evaluated existing activities rather than a clinical intervention.

To become an expert within a week: Children's and parents' experiences of the child being diagnosed with type 1 diabetes and receiving diabetes education - A qualitative interview study.

PURPOSE: To explore children's and parents' experiences of the child being diagnosed with type 1 diabetes and receiving diabetes education during hospitalisation. DESIGN AND METHODS: A qualitative interpretive design was applied. Semi-structured interviews with 15 children and their parent(s) were conducted. Data were analysed via thematic analysis. RESULTS: The analysis revealed three themes: To be diagnosed with diabetes turns one's world upside down; It is positive to meet friendly and helpful healthcare professionals; and Diabetes education is overwhelming but required. CONCLUSIONS: To be hospitalised and receive a diabetes diagnosis is overwhelming. The family must learn, in a short time, the basic skills to manage the condition. While learning, the child may fluctuate between being active and passive. In this vulnerable situation, it is positive to meet helpful healthcare professionals. Children find the motivation to learn, as they want to self-manage and be independent. All necessary education is given, but often the families would like to be more actively involved in the teaching. Sometimes, the teaching is also very compressed. PRACTICE IMPLICATIONS: It is important to be aware of the vulnerable situation of the family and to adjust education to the fluctuations of the child. Teaching should be simplified and broken down stepwise, using pictures, artefacts, etc., to support the learning. More involvement may make education even more engaging and interesting. It has to be considered whether the education can be compressed into too short a time, making it difficult to transfer to the everyday lives of the families.

Exploring outcome measures with cognitive stimulation therapies and how these relate to the experiences of people with dementia: A narrative literature review.

A narrative literature review was undertaken to consider the outcome measures used in research on cognitive stimulation therapy (CST), cognitive training (CT) and cognitive stimulation (CS) interventions. This review extends findings from previous reviews by including a broad range of study methodologies, both qualitative and quantitative, and explored whether participant experiences of taking part in the research are discussed. A database search identified 1261 articles matching the search criteria, with 29 included in this review. Studies tended to use the manualised CST model, with 11 other models identified. Randomised control trials were chosen as the most used method to explore impact. Across the studies, 65 different outcome measures were used with people with dementia, and only four studies used a qualitative approach. Little information is provided on the assessment process in terms of time taken, assessor, or of the experience of the person with dementia. There is heterogeneity of measures used, within and across domains, and number, and agreement or consistency of measures would provide greater comparability across CS studies. Gaps in reporting were noted on the detail of the assessment process and the experience of people with dementia taking part in this research.

"Just ask me what it means to live with dementia" - people with mild dementia's strategies and techniques shared through in-depth qualitative interviews.

This article presents results from interviews with twelve persons with mild dementia about how life had changed since they received their diagnosis, exploring their experiences of dementia and how they manage life by using different strategies and techniques. Knowledge about how people with mild dementia experience life is important to explore through their unique perspective, providing clinical practice with knowledge to improve dementia care. Twelve participants were recruited at a Danish school service for people with mild dementia where they receive cognitive stimulation. Semi-structured interviews were conducted, video recorded, transcribed and analysed by using Max Van Manen's five lifeworld existentials: spatiality, corporeality, temporality, relationality and materiality. SRQR checklist was used. Five themes were identified, illustrating the dilemmas and challenges the participants experience, as all existentials are compromised in some way: living a social and active life regardless of difficulties; trying to look at the bright side of life with dementia; it takes time to adapt but at the same time, time is being lost; it is possible to learn, but it is challenging; to try to remember but keep forgetting. The article concludes that all existentials are negatively influenced by dementia, setting the lifeworld of the participants under pressure. However, they still try to live their lives regardless of the difficulties. The study shows it is possible for people with mild dementia to describe their lived experience of dementia and what strategies and techniques they use to manage life. The experienced dilemmas and challenges in the lifeworld of people with mild dementia are of great relevance to be aware of and address in clinical practice. To support people with dementia to identify relevant strategies and techniques, as expressed in the study, that can support them managing life with dementia.

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

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.

Journey of ethics - Conducting collaborative research with people with dementia.

This paper explores some of the ethical considerations of working collaboratively with people with dementia within research based upon the experiences, challenges and learning from three doctoral research studies. Focus is on the research relationship with participants and gatekeepers, the importance of setting and access, the power relations within the research and ways in which people with dementia can be supported to be active and have a voice in research. This sits within an ethical framework of principalist ethics and ethics of care to guide not only how research is planned ethically and with consideration of participants, but also how this can support decisions made in situ. The aim is to share, based upon these three studies, ways of managing and working through some of the ethical consideration to support researchers in their decisions in planning and conducting research with people with dementia as active collaborators.

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

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.