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. Examples of good practice and learning are drawn from three doctoral research studies which focus 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, ethics of care and virtue ethics 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 provide learning for early career researchers going into this field of research to support their decisions in planning and conducting research with people with dementia as active collaborators

‘Just ask me what it means to live with dementia’ – people with mild dementia’s strategies and techniques shared through in-depth qualitative interviews

Aims and objectives: 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.  Background: 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. Design: 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. Results: 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. Conclusion: 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 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

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 1,261 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

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

In dementia research, there is limited knowledge about how people with dementia experience their daily life including how they experience the services they attend. This means a lack of knowledge about how people with dementia judge the quality of services provided for them. In this study visual and creative methods were used to understand the experience of people with early stage dementia who attend an adult school, Voksenskolen for Undervisning og Kommunikation (VUK) in Denmark. The study explored the students’ experience of being a student at VUK and what it means to engage in life-long learning. Alongside the aim to evaluate the service provided for them, seen from their perspective. Photo-elicitation was used, with cameras provided to each student, who took photographs of their school and home life. Students’ photographs were used to support focus group discussions, with the images integral to the process of talking about and recalling stories. Ten students were recruited to participate in four weekly sessions. Two groups were run with five students in each group. Each session was video recorded, these sessions were then transcribed and analysed using Braun and Clarke’s thematic analysis. Visual images were found to support the students’ memory of current experiences and prompted reminiscences about the past, leading to rich descriptions about being a student at VUK and their experiences of living with dementia. Being able to attend VUK was found to be important for these students with dementia, providing them with a sense of purpose, a way to support their cognitive function and also to develop new friendships. The method provided a way for people with dementia to be active in the research process and provide their perspective about a novel service, which promotes an ethos of learning and development

The effect of a lifelong learning intervention on people with dementia: a pilot control study

Introduction: An education service in Denmark is providing lifelong learning for people diagnosed with early stage dementia. Lessons are specially developed to support cognitive function, quality of life, problem solving, self-esteem and social engagement. These are provided through classes in cognitive training, music, art and woodwork. Qualitative studies report positive outcomes for the students, who feel the lifelong learning is supporting them to stay independent for longer and to develop their friendships. This pilot study estimates the variability of the measures used to explore the potential effect of lifelong learning on people with dementia (intervention), compared with receiving treatment as usual (controls) and assesses the feasibility of using them in this population. Methods: This study compared people with dementia attending lifelong learning classes (n=36) and people with dementia receiving treatment as usual (n=34). The utilised tests were cognition (MMSE), quality of life (QOL-AD), self-efficacy (General Self-Efficacy Scale), self-esteem (Rosenburg Self-Esteem Scale), and socialisation (Hawthorne Friendship Scale). Data was analysed using descriptive statistics and repeated measures analysis of variance. The study is part of a mixed-methods study where qualitative research investigates how people with dementia experience these measures, and how best to support their dignity. Results: The estimates of variability of the tests can be used in designing a future, definitive study. Recruitment of participants relies heavily on the motivation and understanding of the concept with the staff at the education service. Mean changes in scores in the control (C) and intervention (I) groups (baseline to follow-up) for three of the measures appear to warrant further investigation. The mean and standard deviations (SD) for the scores were: MMSE (C) 0.030 (2.963), (I) 0,588 (3,350); General Self-Efficacy Scale (C) -1.060 (5,127), (I) 0.219 (4.353); Hawthorne Friendship Scale: (C) -0.500 (3.670), (I) 0.224 (2.407). Repeated measures analysis of variance showed no significant differences from baseline to follow-up within the same group or between the intervention and control groups. Conclusions: This pilot-study had low power in detecting significant changes in the groups, but does, however, provide information for estimating sample sizes in future, larger studies. Differences between the intervention and control group were indicated by a slightly greater increase in MMSE scores per person in the intervention group, a slight decrease in QOL-AD score for both groups, a small increase in the General-Self Efficacy score for the intervention group, and a small average increase in Hawthorne Friendship Scale scores for the intervention group

Exploring how the use of validated measures may affect the way people with dementia respond and how their dignity can best be supported

The lifelong learning concept is an ongoing cognitive stimulation program that people with dementia can participate in as long as it is experienced as beneficial and meaningful. Focus is on supporting people’s cognition, decision making, activities of daily living and social engagement. This program was compared with social and physical dementia services in six municipalities in Northern Denmar

Observations on strategies used by people with dementia to manage being assessed using validated measures - a pilot qualitative video analysis

Background: Analysis of video data was conducted of validated assessments with people with dementia as part of a feasibility control study comparing a lifelong learning service with other dementia services. Objective: The aim was to provide a new perspective on what occurs during the assessment process when using validated measures in research and explore which strategies people with dementia use to manage their participation. Design: Video recordings were made of pre- and post-intervention assessments with people with dementia. An initial pilot analysis of 10 videos of the pre-assessments was conducted. Setting: Lifelong learning services and other dementia services situated in six municipalities in Northern Denmark took part in this study, with 55 people with dementia participating. Results: The themes identified were: “State of mind” and “Mental resources”, showing how these aspects influenced the participants reactions and the strategies they used. Discussion: The results are discussed in relation to how individual personal traits influence the assessment process and the way a person with dementia will manage the situation. Conclusion: The assessment situation is complex and can be influenced by the strategies adopted by the individual with dementia as they try to manage the assessment process. Patient or public contribution: People with dementia supported the decision making for the choice of validated measure used within this study