MinD Secondment 12: 6–20 March 2017 in Spain
Michele was once more warmly welcomed to INTRAS and received an update of the projects of the foundation. The secondment then was given over to two tasks: firstly, coding and analysing the interviews with people with dementia as well as carers that had been conducted in Spain. Secondly, colleagues from INTRAS and the visiting researcher collected the MIND visual diary/activity books from participants and talked with them about the experience filling it in. Colleagues The overall plan and aims for the secondment were to learn about data analysis and analyse all then prepared the diaries for passing digital copies to MinD colleagues for analysing them during their secondment in Australia.
Other highlights during the visit were a workshop promoted by the Centre of Reference for Alzheimer’s (Salamanca) where 4 cases receiving music therapy intervention were presented including some dynamic exercises for the attending professionals. Esther García Valverde, the expert in music therapy in dementia explained the humanist psychological approaches she uses with regard to promoting wellbeing and communication, centred on the person and their capacities for creation and Self-realization.
The interviews coded during this visit were conducted in Spain in November 2016, they involved 6 people wit dementia and a focus group of caregivers. Reading them provided initial insights about issues such as the importance that people with dementia gave to still being useful and active in their life. It also highlighted the importance of their social support networks, for example through caregivers and the friends. Caregivers, in turn, emphasised the lack of support for people in the early stages of dementia, and both sides felt that additional professional care would be helpful while the use of design was still mostly alien to them and largely associated with technology for use in the later stages of dementia.
MinD Secondment 11: 14 February–26 March 2017 in Brisbane
The overall plan and aims for the secondment at Queensland University of Technology (QUT) were to learn about data analysis and analyse all diaries/’do-books’ from the data collection. In addition, the aim was to complete a number of papers relating to work packages 2, 3 and 4 for the dissemination of the project work and results of the first year. Further participation in an international symposium and Designing for Dementia was planned as well as presentation of the work to students at QUT.
The first few days were given over to the arrival, settling in and getting to know staff at QUT. The hosts took the researchers to see some relevant exhibitions on living in aged care as an introduction to some of the cultural sites and the work about dementia and aged care at QUT. Researchers also prepared their presentation for the symposium the following week, discussing the process of coding for the diaries and developing the coding scheme, relevant coding programmes.
The second week was given over to the participation in the symposium, the coding of the Dutch and German diaries, and the work on several papers on mindfulness and the data collection and design methodologies. The symposium was a great success with 12 international speakers, including the MinD team, other colleagues from QUT, from Sydney and the UK, and from Canada. The symposium was attended by approx. 170 delegates (including the speakers), many from professional backgrounds (architects, formal and informal carers and healthcare professionals), which made for a great audience and lively and enlightening discussions, which highlighted progress in the area of the presented work as well as much need for further research.
The third week focused on coding and analysis of the Spanish diaries as well as further paper writing. The MinD researchers also presented the MinD project work to a group of about 40 final year design students who were very much interested in some of the methodological and conceptual aspects of the work.
Week 4 was given over to discussion of the different ways of analysing and communication of the coded data with regard to qualitative and quantitative analysis techniques, and the relevance and significance of the different approaches for the aims of the study. Qualitative thematic analysis was discussed as important for insights and the emergence of themes with regard to recognising problems and gaps in managing daily and social living for people with dementia, and hence to offer intervention points for design. Quantitative methods such as analysis of co-occurrence etc. can be used to insure validity of coding, significance of findings/themes, etc. With regard to quantitative coding, researchers learned about other analysis programmes (Noldus Observer), which had been used by QUT researchers to code and analyse data of a small early design study. Time was given over also to discussing and writing up the results.
MinD Secondment 10: 9–23 January 2017 in Berlin
The latest MinD visit took place in Berlin and was hosted by St. Hedwig Kliniken, Alexianer Krankenhaus Hedwigshöhe (Prof. Dr. med. Vjera Holthoff-Detto).
This time, the visit really centred on interview analysis (Julia and Thomas) and paper writing (Aleksandra, Isabelle, Julia, and Thomas).
The interviews coded and analysed during this visit were conducted in the autumn of 2016 in the Netherlands, and involved people with dementia and their carers. Analysing the data was a very insightful journey as it allowed team members to actually step inside the shoes of “people with dementia and their carers, and thus to get an insider perspective.
Apart from getting to know about their struggles and delights encountered during daily activities (such as shopping and going for a bike ride) and social interactions (such as visiting neighbours and meeting others at the supermarket), what emerged as really important for people with dementia and their carers in experiencing and coping with dementia was the social-psychological factors such as personality, social support, empathy, and openness towards others.
For instance, a high need for control makes it difficult to hand over control as a patient progresses through the stages of dementia, and might bring about additional marital problems between partners. Openness and willingness to talk about dementia also surfaced as crucial. That is, to experience social support in one’s environment (rather than just within the walls of one’s own house), a willingness to talk and be open about dementia is important. Additionally, the interviews showed examples of cases in which an unwillingness to let other people know were very energy-consuming, aggravating fatigue and weariness. These are just a few examples of what the interviews brought to the fore, but it does show why it is so important to conduct them and give a voice to people with dementia.
Interview analysis will continue, and results from the Dutch as well as the German and Spanish data collection will be compared to see how the German, Dutch, and Spanish interviews differ and/or overlap. Are there cultural differences in terms of, for instance, social and professional support? Do the same problems and issues in activities and social interactions arise? And what about support tools people use? Things mentioned during the varied from large scale calendars, print-outs of pictures of products to be bought at the supermarket, to a newspaper on the table throughout the day to tell date and time.
Meanwhile, paper writing focused on establishing a mindfulness framework, analysing environmental interventions aimed at assisting PwD and to improve their wellbeing, and analysing research methodologies of relevance to our project.
MinD continues in Brisbane, Australia, where the diaries that complemented the interviews will be analysed. What will they reveal about PwD and their ways of coping? Together with the interviews and focus groups (one of them conducted here in Berlin during our visit by our wonderful Berlin hosts), they will provide the much-needed basis to enter the design phase of MinD.
Last but not least, we had a wonderful time in the beautiful city of Berlin, this time including a dinner at an authentic Italian restaurant (thanks Michele!).
Ninths MinD exchange in the UK, December 2016
Participants from Alexianer St Hedwig Kliniken Berlin and Fundacion INTRAS were hosted by University of Wolverhampton and Nottinghamshire Healthcare NHS Foundation Trust, respectively.
The secondment was dedicated to advancing the work on the data collection phase, including discussions and workshops on public participant involvement in the project and on data analysis, and work on the literature review to contextualise the work undertaken.
Of particular importance in this visit was the joint workshop with the Public and Patient Involvement (PPI) group at the Institute of Mental Health (IMH) to explore and get feedback on the mindful task based scenario analysis which the team will use to analyse the information gathered through the data collection phase to identify and develop opportunities for design interventions.
Also, a workshop on data analysis was conducted to share and develop knowledge on qualitative content analysis and jointly develop the coding tree for the analysis of the data gathered in Germany, The Netherlands and Spain form people with dementia and their carers.
In the second week, the 1st MinD symposium was held at Europe House in London, which offered an opportunity for the team to review and present the work done over the 10 months of the project and to share the MinD project ideas with the public. The symposium included a keynote speech by Prof Cathy Treadaway, three presentations by members of the consortium (Dr Isabelle Tournier, Prof Vjera Holthoff, Prof Kristina Niedderer) about the different aspects of the project, a design brainstorming workshop, and a panel discussion.
A summary of events of the symposium are available on the news page.
The programme is available on the events page.
Eighth MinD exchange in Valladolid, Spain, November 2016
Participants from Alexianer St Hedwig Kliniken Berlin were hosted by the fundacion INTRAS in Valladolid to work on the data collection; training relating to dementia care and planning the next project actions.
To begin with, participants took part in the CENTAC (National Congress of Assistive Technologies) where a lot of new technology and research programs to help ill people were discussed and presented.
Contact and exchanges were made to many in the first days with psychologists, occupational therapists and many other professionals from INTRAS. In the CRPS (day centre of Zamora) there was a choice in taking part of different therapy and therapeutic activities with the patients of the fundacion. The participants also visited an IBIP Lab (Iberian Institute in Psycho-Sciences Lab), where many different and interesting research paths were compared and discussed to enhance new ideas and convergence of intents.
Out of INTRAS centres, participants also visited CRE (Public Research Center for Alzheimer) in Salamanca; the visit was interesting and pleasant, the multidisciplinary approaches for the wellbeing of the patients are amazing!
In the second week the participants prepared and conducted many interviews of people who have dementia and a focus group with caregivers. The sessions were really interesting and full of information. We are anxious to see the final report of the data analysis to compare them with the results of other countries. Some differences in Germany are already notable.
During the weeks, research of previous literature about mindfulness, wellbeing and Dementia was conducted.
We exchanged appreciation and thankfulness to our host, guests and people that we interviewed – people were really pleasant, interesting and productive.
Research team with hosts and research
Sevenths MinD exchange in The Netherlands, November 2016
Participants from INTRAS Foundation (Spain) were hosted by Zoerggrop Sint Maarten with support from Twente University to work on the data collection with people with dementia and share experiences of care in Spain and the Netherlands.
Visits to the Gerardus Majella nurse home for people with dementia of ZSM were made, to know the way that people with dementia live in a representative institution in the Netherlands. Gerardus Majella is a house for the elderly, 30 people with dementia live there, and they receive permanent medical and psychological care. ZSM also provides nurse home assistance for old people on the Twente region, integrated on a case management model. Four visits allowed researchers to understand the kind of assistance that people with dementia (and their care-givers) receive by the whole staff (doctors, nurses, psychologists and home nurses).
Working meetings conducted with Twente University researchers allowed exchanging experiences on treatment approaches for people with dementia in both countries. Different health and social policies should be taken on account to understand daily life issues in each country. Researchers also worked on data collected on previous exchange visits of the project. Information from diaries and interviews was discussed. Several brainstorming sessions were held to identify new points of view in interpreting the available information. This way, ideas about possible lines of design emerged. The researcher also attended lectures on architecture for people with dementia and ethics on technological design and use.
Research meetings were held at the Design Lab of Twente University, which is a truly inspiring place to think of new approaches to mindful design. New designs, and ways to work on them, are the basis of the work of students and teachers. We hope we can get a little of that and put it into our project!
Sixth MinD exchange in Barcelona, October 2016
The sixth secondment of the MinD project ‘Designing for People with Dementia’ in October was the first secondment wholly dedicated to design. It saw a renewed discussion on the basic tenets of the MinD framework and its application through design. It provided an excellent preparation for the actual design phase of the project in 2017 through work packages 4 and 5, which focus on personal design and environmental design respectively to support people with dementia. These discussions were supported by a series of inspiring presentations and visits centered on architecture and wellbeing and technology health applications, such as wearables and e-textiles through the two hosting partners in Barcelona.
PICHARCHITECTS, a renowned architecture agency, and EURECAT, a major technology provider in Catalonia, who were the hosts for this secondment, presented their work and vision, and arranged for a series of insightful and inspiring visits in the city and in the Barcelona surrounding to give the group first hand experience of their projects and development and production facilities.
The presentations and visits by PICHARCHITECTS fuelled discussions on the relationship between technology and nature, person and environment, and on their affect on human well-being. Visits included the Paideia School and several hospitals and care homes who support children and adults with mental health issues and also dementia.
The presentations and visits to the laboratories and workshops at EURECAT offered insights into recent and on-going technological developments and research projects connecting to opportunities offered by, for instance, e-textiles and e-health applications. The visits sparked discussion and considerations, e.g. about ‘what tactile feedback could be offered when anxiety and stress are overwhelming?’
Alongside throughout the visit, based on the first findings of the interviews and focus groups, researchers and designers discussed the dynamics underlying social engagements (or the lack thereof), and the role of mindfulness. A core question identified was not only where do people with dementia experience a lack of social engagement and what potential strategies could be used to remedy this, but most importantly how social relationships and challenges associate with them can be transformed through mindfulness.
These discussions allowed for a rich (mindful) understanding of dementia and the ways in which it manifests itself in everyday (social) interactions as a basis for the design development. As such, the MinD framework further took shape, and the potential roles of environmental design and technology really came to the fore under the influence of our generous and inspiring hosts. Needless to say, the Barcelona region provided the ideal climate for idea generation with its numerous (architectural) highlights, including the timeless Gaudi monuments.
Fifth MinD exchange in the UK, October 2016
The participants of the MinD project were hosted by the University of Wolverhampton and the Nottinghamshire Healthcare NHS Foundation Trust (through the Institute of Mental Health) for working on the data analysis process, training relating to dementia care and for planning the next project actions.
Professionals from Fundación INTRAS (Spain) and Alexianer St. Hedwig Kliniken (Berlin) were involved in a variety of activities including data analysis of the interviews previously conducted in Berlin, contacting and establishing synergies with different actions coordinated by the Centre for Dementia in Nottingham, like the PPI – Patient and Public Involvement Group and the DAWN – Dementia, Arts and Wellbeing Network, planning next secondments and the data collection activities to be initiated in November in Spain (Castilla y León Region).
Other relevant activities included the attendance of different seminars promoted by the Centre for Dementia and the institute of Mental Health, with the goal of training MinD researchers in Holistic Care for Dementia, Social engagement, and Research methods. A presentation of several assistive devices for elderly people with dementia at the University of Wolverhampton emphasised the variety of these objects as well as the opportunities and restrictions designing them with a foresight of what is going to be there in the future.
The analysis of the interviews carried out in Germany is under way. It promises important insights from participants with dementia and their carers about their daily life and subjective well-being that will feed into our mindful design phase.
The project participants were delighted with the professional development opportunities, and want to thank the groups that opened their working sessions to us and to the MinD project.
Fourth MinD exchange, September 2016: The Netherlands
Participants of the MinD project were hosted by 3 institutions, Panton Design in Deventer, Zorgcentrum st Maarten and TU Twente in Enschede, for the two-week visit of the 4rd secondment between 19.09.2016 and 03.10.2016 in Netherlands. The first week, researchers visited all three partners to get to know them and to see dementia-care environments in The Netherlands.
Visit of Zorgcentrum St Maarten – dementia-care partner
During this period, at the Design lab at TU Twente, the design team developed a state of the art “design for dementia” overview map of existing projects and assistive devices as a research background for the project.
Design for dementia mapping
Also during the first week, the team completed all preparation for the delivery of the data collection in The Netherlands, and also finalised all data collection materials, including the visual diaries.
In the second week of the secondment, the team started with the data collection. Through hosts Zorggroep Sint Maarten, 12 people – people with dementia and their caregivers – had been identified and who were interviewed over three days by a team of care staff from Zorggroep Sint Maarten and of MinD researchers. In addition, the health care researchers of the MinD team were working on translations, papers and transcriptions of observation of the interviews during their stay.
The design team, hosted by Panton, discussed the representation of the Mind project process and began with the generation of infographics for our Project workflow management. A design workshop for all the team gave momentum to the start of the design phase to start considering the main issues encountered by people with dementia and their carers, such as: (un)familiar environment, delivery of diagnosis, acceptance of the diagnosis and changing the relationships between the people who are involved in the situation.
Design workshop – generating of ideas design for dementia solutions
Third MinD Exchange, August/September 2016 – Germany
Members of the Mind Team travelled to Germany for the third exchange hosted by Alexianer St. Hedwig Kliniken Berlin (AKB) and TU Dresden (TUD). Participants attended for 2 weeks during the period from 29 August to 12 September. Five participants from four institutions (University of Twente, University Wolverhampton, University Luxembourg and Panton Design) took part in this exchange to work on the data collection.
The first week started with an introduction to the MinD project and Mindful Design (Kristina Niedderer) for colleagues new to the MinD project, and a tour of the hospital by colleagues of AKB (Vjera Holthoff-Detto, Berit Ziehbur, Michele Zanasi), including the dementia wards and the drug rehabilitation ward. The tour provided important insights into the life conditions of people with dementia who are passing through short to long term treatment.
The main part of the week was given over firstly to reviewing, finalising and getting ready all data collection materials (focus group interview schedules, information and consent forms, supplementing visual cards, and diaries). Secondly, the approaches and methods to be used for the textual and visual data analysis (Aleksandra Galasinska, Kristina Niedderer) were discussed, and presentations and training sessions on these were held within the group to share knowledge and expertise.
The second week was charactarised by the preparation and conduct of the first focus group with caregivers, and by adding the design perspective. The latter included presentations by several team members on:
– ‘Technisches Design’ (Jens Krzywinski), including core areas of research, academic and social relevance and examples;
– ‘Design methods’ (Christian Woelfel), including user experience design approaches, and relevant examples from TUD.
– presentations by two student teams about the results of a three week short-term duration design project which took the MinD theme on designing for dementia as its focus.
– user experience design (Thomas van Rompay), and
– professional design strategies of Panton Healthcare Design (Ben Bokkers)
The working group also had the chance to visit the Center for Demography and Diversity (CDD) at the TU Dresden, with a presentation by the Prof Dr.-Ing. Gesine Marquardt on ‘Architecture for demographic change and dementia’, which reflected on the investigation of demographic change challenges, the transfer of research results, and projects concerning environment Design and Dementia.
The data collection commenced with the first focus group on 08 September 2016 which was conducted with carers (spouses) of people with dementia. Further focus group and individual interviews will be conducted across four countries (Germany, The Netherlands, the UK, and Spain) over the next six months.
A presentation and guided tour in the Museum of Applied Arts, Pillnitz rounded this visit off. The talk by Dr Christian Woelfel was about the designer’s perspective of various exhibits, including materials and production technologies in relation to the formal aesthetic development of design. It was followed by a guided tour about the Deutsche Werkstätten Hellerau provided by Klára Nemecková.
Second MinD exchange June 2016 – Luxembourg
The second exchange was hosted by Universite du Luxembourg (UL) and Alzheimer Europe (AE). Participants attended for 1-2 weeks during the period from 13 June to 2 July. This exchange formed a solid basis for the data collection stages to follow. Led by Prof Dr Vjera Holthoff-Detto, participants created an interview schedule and guidelines for the interviews that will take place with both people with dementia and their caregivers in the following exchanges. Due to the differences ethics procedures in the participating countries (UK, DE, NL, ES), there will be some procedural variation in each context, but a common basis was agreed. The design participants began work on cards to be used when interviewing people with dementia (to provide visual prompts around activities of daily living), and diaries that can be used between interviews by the people with dementia as an engaging activity that will provide us with more detail about their experience.
Building common ground during first MinD exchange May 2016 – UK
During the first exchange of the MinD project, that was hosted by the University of Wolverhampton (UoW) and Nottinghamshire Healthcare NHS Foundation Trust (NHT) we started our work on a mindful design approach to dementia care. This being the first exchange, to develop a mutual understanding between the different disciplines in the project, knowledge exchange formed a crucial part of this exchange. While our medical partners informed us about different types of dementia, mindfulness and research in the medical field, the design and technology partners updated the group on the current state of the art in design for dementia and assistive technology and the design research partners contributed by highlighting design research methods and findings from other design for dementia projects.
Through several discussions, a common ground was developed on what it means to design for dementia following a mindful approach. This common ground served as a basis to develop our first ideas on mindful design for dementia which in its turn helped us define what knowledge we need to generate from our user research activities. Following, a start was made on defining methodologies for data collection, these will be further developed during the next exchange in Luxembourg. In most of our discussions, public representatives from MindTech contributed. This ensured that the research group could reflect on their ideas and approaches. To further connect with care practice, the group made visits to care and demonstration facilities in and around Nottingham and Wolverhampton; Highbury Hospital, St. Francis Unit, Lings Bar Hospital, Wren Hall Nursing Home, Attenborough Nature Reserve and Bilbrook house. These visits have all highly contributed to the groups understanding of best practices and challenges in dementia care. As a team, we feel that our activities together have created a solid base to built our future work on and we are confident that the team in the next visit can use our work to further refine the data collection methods.