Why diaries? Diaries preserve personal experiences from everyday life. How did I feel on a particular day? What did I do? What was on my mind? What happened to me? Most of these notes are very private, meant only for oneself. They are meant to help us gain clarity about ourselves, especially later, for the future. One day, they will tell us who we were, what occupied us, what we hoped for, and also what we feared.
But why diaries and dementia? There is, after all, a very essential difference: memories are kept in a diary, but with dementia they can be lost. Yet it was precisely this difference that seemed so important to us in the EnAct-Dem project. For us, the diaries were an attempt to counteract the fleetingness of memory.
From the very beginning it was made clear that these diaries were not only intended for those who wrote them. They could also enable others to better understand what it is like to live with dementia. Day by day. In particular, they helped people appreciate what it means, in concrete terms, to go through the week with dementia? The diaries enabled us to ask about opportunities to participate in the life around each of our diarists and the difficulties they encountered. We wanted to find out how people managed to cope with these difficulties, and what it all meant for care partners and other friends and relatives.
From the start, we recognized one difficulty: not every person with dementia can or wants to write down their memories. Written language is not the best way for many people with dementia to gain certainty about themselves. But experiences can also be preserved or reflected upon without writing. Pictures have always been a way of making experiences and memories visible, giving them duration.
That is why we designed the diaries in such a way that there was always room for drawings, paintings, or collages. We included pictures from art groups for people with dementia. They bring something playful and handmade into it. Each page of a day was lovingly provided with prompts in the form of questions and images. It should be a joy to devote oneself to the day and the week. It was not meant to become a sober protocol, a list of appointments or doctor’s visits. This booklet was to be a space for sensing, reflecting, and holding on to everything that seems important during these days. Beautiful things, but also difficult ones.
In addition to the many illustrations, the booklets contain a wide variety of questions:
“What did you do today?” “Where did you encounter limits?”
“What was beautiful today?”
“What did I dream? What does it mean to me? How did I sleep?”
“How do I wake up? Cheerful? Burdened?”
“What should the day bring me? What do I hope for?”
“Which person did I meet first?”
“What did I accomplish?”
“What did I touch? Who touched me? Whom did I touch?”
“How was the day: loud or quiet, slow or fast, cheerful or sad?”
“What did I learn about myself, what about others?”
We sent the diaries to people with dementia and their relatives and while the diary was being kept, we often spoke on the phone. Many questions came up and some uncertainties. For example, the comment: “For the first time in my life I am being asked what I think and feel! That is completely unfamiliar to me!”
When the diaries gradually came back to us, we were delighted; moved; overwhelmed. So many personal experiences were shared with us here! Very often, in addition to the writing, there were also drawings or collages in the booklets. A lot comes to expression there, in words or in images, about what it means to live with dementia: fears, grief, despair, worry and anger. But we also found people’s strengths become visible; the strength to cope with life. It will take us quite a while to fully understand everything that appears within the diaries but already we can say that when people with dementia express their perspectives, their thoughts, and also their imaginations, that is a very important step towards better participation.
In total, we received twelve diaries back from different places in Germany: from Gießen, Falkensee, Rendsburg, and Wiesbaden. Here we show some illustrations from these diaries. Our English-speaking visitors to this website may not be able to understand much of what is written there. But we hope that the many pictures can give a strong impression of the expressive power of people with dementia across existing language barriers.
Once again, we say a big thank you: to all those who agreed to work on these diaries, who took the trouble of daily writing and painting, and who now allow us to share these important pages with others. On behalf of the Gießen team of “EnAct-Dem”: Thank you!
Oliver Schultz