Participating in the European InLife project – perspectives from a university and social care institution
The InLife project – INdependent LIving support Functions for the Elderly – ran for three years and concluded in February 2018 with an online platform for ICT services supporting older adults living with dementia. Dr. Sarah Kate Smith, researcher at the University of Sheffield and Belinda Black, Chief Executive of Sheffcare, who manages a number of residential care homes and day centres, give some insights in what it meant for them to participate in this project and what personal lessons they learned.
“Technologies can be disabling as well as enabling and we have a tendency to blame the user, although often it is the fault of the technology.” Dr. Sarah Smith
What was the role of your institution in the InLife project?
Sarah: The University of Sheffield was one of the six pilot sites, developing and testing the specifications that were then going to be included in the online InLife platform. Arlene Astell was the project lead. My tasks were to design the research protocol and lead on the data collection from 220 people living with dementia, 100 health professionals, 80 informal carers and 12 stakeholders.
Belinda: Our role was working with the staff at Sheffcare to generate enthusiasm for the research project, then work with Sarah to identify people who wanted to participate in the research. Following on from this we then recruited an activity worker who could, after training with Sarah, implement the activity sessions.
What problem in the UK would you like to see solved with the outcomes of the InLife project?
Sarah: When we talk to people with dementia, one of their most reported unmet needs is something meaningful to do during the day. Their time engaging with activities outside the home may have been reduced, driving licenses are often taken away and ultimately people are sitting at home with nothing to do. It is in this context, that the InLife platform can deliver value: it can be engaged with at any time of day or night and offers a choice of activities to the users. It provides opportunities for people living with dementia to engage with meaningful activities.
Belinda: In my area of work in residential care homes and day care centres, we are constantly seeking new ways to meaningfully engage our service users and provide new opportunities. Our participation in the InLife project allowed us to do that.
How was the concrete user feedback?
Sarah: We found the feedback generally excellent from those who chose to engage. Of course, there will always be people who chose not to participate and of course we never pushed them. It has to be the person’s choice.
We used the CIRCA tool in its original form and then did a comparison of using CIRCA on the InLife platform. The feedback was really good. We found that the platform and the available apps on there, engaged the users and provided opportunities to reminisce and exchange about it. Their conversations increased and the platform supported and enabled users and carers to equally engage with each other.
Since we partnered with Sheffcare, we used the InLife platform in group activities involving residents and staff. It was generally the staff who logged everybody onto the platform, but some participants were also interested in using it independently and to access the platform using their own ICT devices at home.
Belinda: Indeed, the feedback was excellent from everyone involved with the project and people were very engaged.
Were there any surprises for you in the project? Unexpected results, unexpected technical challenges, unexpected reactions from stakeholders?
Sarah: An interesting aspect of the In_Life project was its multi-disciplinary nature. Of course this proved advantages but also had its challenges. We had computer scientists, psychologists, clinicians, health professionals and IT experts all coming together for this project. The reality is that we all speak different languages (and I do not mean their national language) and we all have different priorities. We often had the situation where technical knowledge would come at the expense of a deeper understanding of the condition of dementia and visa versa. For example, when integrating a new app or function in the platform, the seamless technical integration would be important to the computer expert while the psychologist would look at making sure that the user with dementia was happy with this new app or function and it was intuitive to use.
In an ideal world without money or time constraints, would there be any dimension that you would like to add to the project to achieve optimum results?
Sarah: I would have loved to have provided everyone with the opportunity to participate in the IN-LIFE study and certainly to have access to the CIRCA system whenever they wanted. Many people asked during the project: “When can we have it?” They wanted to subscribe to it and use it, and it was sometimes difficult to explain that at the moment it is only being used as a research tool.
Then of course, WIFI can be inconsistent and there was almost always an issue. Whether it was the person’s connection at home that was not strong enough to stream video or the overall capacity at a certain time of the day.
Belinda: It would be great to have more immersive tools. For example, to have smells associated with the tools, as we know a lot of discourse can be achieved through the use of smell. Also 3D effects or something like virtual reality would be fantastic. All of this would enhance the experience of the service user, make it more real.
Sarah: We are currently looking at more immersive interventions involving streaming video footage of the old Sheffield tram road back in the 1940’s on large curved screens, similar to augmented reality. This experience would be similar to the idea of CIRCA but taking it one step further and being more immersive. The enjoyment gained from reminiscing engages people of all ages – we all love to reminisce, it is not about dementia, it is about being human.
What would you need as next step to be able to implement the outcomes of the project in real life?
Sarah: Money, money, money. Ideally an implementation grant. We do these wonderful interventions in research projects and show people these tools, but then when the project is over, we take it away. We cannot rely on everyone, especially older generations, to own their own technologies to access online tools and services.
What did you personally learn from the project?
Sarah: I am a dementia researcher and undertaking a project with people living with dementia was fantastic. This group are very able in their use of technology and tend to be extremely enthusiastic in their participation in research. What they are lacking is opportunity and appropriate facilitation and support.
Belinda: I learnt that you are never too old to engage in technology and that zest for life, new ideas and change remains with us all.
The InLife project aimed to prolong and support the independent living of seniors with cognitive impairments, through interoperable, open, personalised and seamless ICT solutions that support home activities, communication, health maintenance, travel, mobility and socialisation tasks, with novel, scalable and viable business models, based on feedback from large-scale and multi-country pilot applications. The project ran from 2015-2018 and resulted in a number of publications.
InLife project: http://www.inlife-project.eu/
University of Sheffield: https://www.sheffield.ac.uk/socstudies