WP3 Year 1: Data Collection

Work package 3 oversees the dementia care context, both with regard to the theoretical review and with regard to the practical work with participants (data collection and PPI events) in the first phase of the project.

Semi-annual update 1 – September 2016

During the first two secondments (United Kingdom and Luxembourg) in Spring 2016, the project team worked on the development of the data collection schedules for the data collection phase starting in Berlin and Dresden from August 2016. Data collection will concern older adults with early stage dementia and their caregivers in four different countries (Germany, The Netherland , Spain and UK).

In the first two secondments, intense discussions were devoted to the construction of the interview and focus group framework and schedules, as well as visual diaries and other supporting materials for the data collection. The aim is to gain more insights about the challenges that people with dementia encounter in their everyday life, their needs and worries, what activities are important for them and what assistive devices are available to support them. All these aspects will orientate us in the development of mindful design favoring social participation and self-empowerment of older adults with early stage dementia.

Semi-annual update 2 – February 2017

There were a total of eight data collection secondments in the second half of the first year of the MinD project, two in each country, which were used to conduct the data collection (Germany, The Netherlands, Spain) and PPI events (UK).

The third secondment (Germany) was used to examine the last details about data collection and to explore how to analyze the incoming data, where also the first focus group (with carers) took place. Secondment 4 in the Netherlands continued the data collection through at home interviews of people with dementia and their caregivers. In addition, some of the participants were given a daily visual diary to complete with activities such as taking pictures of their day, things they appreciate, emotion, etc. Further data collection will be completed during the forthcoming 6 months (i.e. until March 2016) and results with be analyzed in May 2017 (Luxembourg secondment).

The secondment in The Netherlands also brought the healthcare and design strands of the project together through a “brainstorming day” about why kind of tools/actions might be developed in the context of MinD. Four main aspects related with dementia were investigated: a) the delivery of diagnosis, b) the changing relationships, c) the acceptance by oneself and by others, and d) the familiar world of people with dementia and their relatives. This generation of idea will feed into the WP 4 (Mindful design for personal social engagement) and the WP5 (Developing mindful design solutions for the care environment) and will be discussed further in May 2016 in Luxembourg.

The collected data and other information will feed into developing a framework of Holistic Dementia Care (WP3) by adding knowledge about relevant activities and social relationships of people with early dementia, and how their routines and activities are impacted by their illness. It will also provide important foundations for the design work in WPs 4 and 5.

The data collection and PPI secondments continued throughout the autumn with secondments in the UK, The Netherlands, Spain, again the UK, and in January 2017 in Germany, with the last of the data collection secondments in Spain to take place in March.

All secondments were given over to various aspects related to the data collection, including preparation of data collection schedules and materials in the different languages, the conduct of the focus groups and/or individual interviews, the distribution and collection of the visual diaries (or ‘do-books’), and the analysis of these materials, and the contextualisation through literature research and discussion.

In January, partners met in Berlin to continue the work. Besides intense work on the data analysis, there was a focus on providing the theoretical context to evaluate the data and focusing on the importance of empowering people with dementia. Broadly, the term of empowerment refers to how one can influence one’s environment and one’s life by exerting control over the decisions that affect one’s life. However, empowerment as well as social participation are often strongly reduced due to the effects of dementia (e.g., memory problems, mood changes). The team therefore began a theoretical review of how to tackle this aspect, i.e. how to preserve empowerment and social involvement of people with beginning dementia.

The theoretical review and data collection results are panned to be presented and reviewed by the MinD team in may 2017, as well as by the Alzheimer Europe European working group, including people with dementia as well as carers, and to be publicised in scientific journals in due course.