WP3: A holistic Model of Dementia Care
WP3 of the MinD project has focused on holistic care and its approach in dementia. The objective of this work package was to assess which aspects of daily life activities are important for people with mild dementia and their caregivers. Our aim was to have a better understanding of the difficulties they encounter regarding social activities and decision making, in order to develop later in the project relevant design-related tools answering their real needs and concerns. To this aim, a literature review was undertaken to have a better understanding of how personal, interpersonal and environmental elements change self-empowerment and social interaction in people with dementia. These insights allowed us to develop a methodology to assess these aspects in people with dementia and their familial caregivers in Germany, Spain, and the Netherlands. Several assessment tools were implemented (i.e., interviews, focus groups, and design probes) to increase the richness of collected information. In addition, visual cards were developed purposely to support the conduct of interviews and focus groups with people with dementia. Collected data were analyzed and summarized as four main difficulties and seven main needs. The difficulties are: fear of losing identity and personal memories, experiencing insecurity and lack of confidence, coping with the diagnosis and the situation (“what now?”), and deciding what to do and planning new things. Some of them might be overcome by the following needs: the need to help others (“needing to be needed”), letting go of some responsibilities, keeping relationships going, more understanding and negotiating between carers and people with dementia, keeping activities that have a purpose, importance of familiarity, and importance of continuity. These results offer strong insights for the next steps of the MinD project, which will deal with the development of mindful design-related tools aiming to increase social engagement and empowerment in older adults with mild dementia.
WP3 has contributed to Milestones (M2: data collection framework, M3: data collection complete) as well as deliverables (web contributions, intranet papers, annual report, and publications) in a timely manner, with the final report and the remaining publications to be completed in early 2018. In particular, the completion of the data collection in May 2017 has been a major achievement and milestone (M3) of the MinD project in that it has provided the basis for the design development work. Its timely delivery has ensured that the MinD project has been able to proceed successfully and in a timely manner into the design ideation and development phase.
The work on WP3 has also been very important for the interdisciplinary understanding and training of consortium participants, especially designers who have learned about data collection and data analysis in a healthcare context, while healthcare professionals have learned about the perspectives and nature of the data required for design development.
WP3 is the first WP to finish in the MinD project and its successful completion under the lead of University of Luxembourg is a major achievement for the project.