Phase 1 – Collecting information

We have collected three different sorts of information for the MinD project: interviews, focus groups and a special diary with daily tasks. We did this work in three countries: Germany, Spain, and the Netherlands.

Our main aim was to learn as much as we can about the actual wishes and needs of people with dementia. We also talked to informal caregivers because they have complementary information and lots of practical expertise about dementia. We will be able to see if anything is different across the three countries.

Individual interviews:

We have interviewed people living with dementia and their caregivers. We usually talked separately with caregivers and people with dementia as they may have different perspectives.  However, sometimes people with dementia wanted to be talked to with their family members present, and we respected this wish.

The interviews lasted about an hour. We asked questions about daily life such as: “which activities are really relevant for you?”, “do you use any technological devices to help you in daily life?”, “are there any possible future changes that you are afraid of?”

To support these interviews, we developed some visual cards to help people to describe their everyday life (see pictures below) and what is meaningful for them.

Visual cards of main daily life activities

Focus Groups:

We also talked to small groups of caregivers, usually four or five in each group. This meant that they could give their own account about life challenges in the context of dementia, but also they could exchange experiences with each other. The groups were also focused around daily activities, similar to the interviews described above.

Diaries:

One novel part of the MinD project was that we used a “diary craft book” that included creative and mindful activities. We distributed diary craft books to several people with dementia and we asked them to complete a task each day for two weeks, with the assistance of their relatives if they needed it. The tasks included creative activities such as taking photos or writing a description of yourself.

Image of a page showing 3 empty jars, with the question, if you could put anything in this jar to relive, what would it be?

Example of a diary page Wallace et al. (2013)

What happens next?

We are most grateful to all the people who took part in the interviews, focus groups and diaries. Thank you very much indeed. We could not do this research without your help.

We have been analysing the information we have gathered. Our research team is meeting in Luxembourg in May 2017 to review the data from each country and bring it all together.

After this, we will pass the results to the designers on our team so that they can start work on promising areas for mindful design. Once we have some prototypes to work on, we will involve people with dementia and their caregivers to help us refine our design ideas. We will add more updates to our website as we move forwards.

“Thank you” cards sent to our Dutch participants

 

Reference

Wallace, J., Wright, P. C., McCarthy, J., Green, D. P., Thomas, J., & Olivier, P. (2013). A Design-led Inquiry into Personhood in Dementia. Paper presented at the CHI, Paris, France.