Reflections on “The Many Faces of Dementia”

While I criticise that dementia is often used too indiscriminate in technology development, I have not decided myself how to narrow down the research area in my own project. To support this process I have undertaken the “Many Faces of Dementia” FutureLearn course that has been developed at UCL. It is a four week course that introduces familial Alzheimer’s Disease (fAD), different variants of frontotemporal dementia (FTD), dementia with Lewy bodies (DLB) and posterior cortial athrophy (PCA). The course materials cover both information about the symptoms and biological changes given by researchers and practitioners in the area and interviews with caregivers and people diagnosed with dementia to highlight the everyday impact as well as describe the route of diagnosis. A discussion forum at all stages of the course supported discussion with and learning from other participants.

While behavioral-variant FTD was one of the main research areas for my MA project, I only knew the other types of dementia by name and not much about how they manifested themselves. Even though much of the information is available freely from different interest groups, it has been very beneficial to have it presented in such an concise way. The short lessions have been a suportive format to fit the course around my work. Taking part in this course has definitively enhanced my understanding how the other types of dementia differ.

Particularly the presented case studies have been useful as they gave the opportunity to observe people living with the condition and fill the symptoms as they were described ‘with life’. Differences in behaviour and speech were much more prominent that in the scientific descriptions of the symptoms.

To all types of dementia the course gave the biological background which was useful as it suported the understanding of the symptoms at times, but this information has not been relevant to my project. More relevant to some extent were the descriptions about how the illness is diagnosed and particularly how complicated it was for many people to reach a diagnosis. In many cases the symptoms show overlaps with other illnesses and people have been misdiagnosed before the dementia diagnosis had been confirmed. These stories underline that ‘living with dementia’ is not as static as it is often described in the literature when it focuses on the medical symptoms, but rather a complex process in which many people are involved.

While doing this course, I refined my plan of work and I think the type of dementia most relevant to my work is Alzheimer’s disease. It is the form with the highest risk of hereditory predisposition, particularly in the case of familial Alzheimer’s disease. Even though this is by far not the only influencing factor, it may lead people to think more about the future and the consequences for them, if they were to be affected. For design futuring or some types of design fiction this could be a useful starting point.

Overall this course has deepened my understanding how the different types of dementia show themselves and made me realize some additional complexities of the illness that lie beyond the medical syptoms. In regards to my own project it has helped me to understand how to break down the term ‘people with dementia’ into something more specific and applied. Rather than focussing on a special symptom of dementia, I am interested in future technologies and therefore think that concentrating on hereditary forms of dementia such as Alzheimer’s disease will be the relevant focus for my work. Rather than focussing on support for people who are living with dementia now, it might be interesting to focus on those living with a risk of dementia and explore their hopes and concerns about technologies for the future.

Reflections on Sci Fi London

When arriving too early at the cinema, I picked up the flyer for Sci Fi London rather by accident. With the slogan “Where what if meets WTF” I could not resist to see what they have on offer as I see the slogan “What if…” on the mood board above my desk every day. I tried to see as many movies as possible which turned out to be 5 movies in 10 days. And between what the curators for the festival selected and what I chose to see, I could see a couple of themes emerging.

The future is NOW.
Prisoner X is a movie set in 2017 (and 2002 and an unknown future as it is about time travel). Androids Dream is set in 2025. The wonderful poetic short film Grafitti is set ‘7 years after the incident’. Tourbillon and The Great Fear are set in an unspecified future that looks much like the present. The sci-fi movies I think about first from my youth are all set in a far away future. So far that it becomes a different place. With technology that needs explanation, shines and creates awe. In 2016, we do not think far ahead. We are surrounded by topics, by fears, by dangers.

The future is FORLORN.
Many of the dystopian futures from the 90s I remember are overcrowded, with masses of people. Everywhere. Films in this festival showed a different image. Grafitti shows a sole survivor of the incident – well, most of the time. The main character in Tourbillon has to live by the rules – cutting ties with everyone she knows after 4 years so that noone realizes she does not age. The Great Fear plays in a rural farming area in the US. The wonderful Embers shows people staggering through a deserted, urban and derelict landscape. Prisoner X plays in a CIA bunker, cut off from the rest of the world. People are on their own, trying to communicate. Building up new channels, whether they are grafitties (Grafitti) or orange bands (The Great Fear).

Relationships between people are intimate, close, but fleeting. Structures prevent people from getting; staying together.

This new future is a lonely place. Outside dangers have led to a massive loss of life, leaving those on their own struggling for human contact and warmth. While this thought is not necessary new in science fiction, the way it is played out differs in the way people search for new ways to communicate.

The future is BROKEN.
In the sci-fi -and nearly all- movies of my childhood, technology is the saviour. In the James Bond movies of the 1960s he is given nearly magic gadgets and -like in the fairy tales or game logic- knows what to use in which situations. The movies at this years’ festival show a different kind of technology. Apart from the time machine in Prisoner X it is technology that we use every day. Possibly a bit more advanced. Labtops, phones, cars, used without thought, routinely. Technology is not the saviour. It is under scrutiny. Gene-modification leads to a terrible disease. Time machines are used to support terror.

One of the reasons technology is not new and shiny is a lack of infrastructure. Due to the illness people get in The Great Fear planes fall out of the sky. Whatever the incident was in Grafitti, it left a forlorn world without electricity and running water. People live of food cans and rats. Same in Embers. People are foraging. Shiny, new technologies have lost their place in these worlds. Obsolete and useless it breaks with the promises of its predecessors. While people, humans prove to be resourceful, alive and useful, technology does not.

The future is BLANK.
In Tourbillon, the main character admits to forgetting due to the artificially prolonged age. Too many memories just become too much causing glitches. In the Great Fear our food causes memory loss. Loosely connected to dementia in the newspapers in the movie, the illness makes people foget within days and weeks, rather than the months and years dementia takes. While I heartily dislike the zombie-like movements of the people affected, other syptoms have been shown sensitively and subtly. Hoarding, keeping to the things that mattered much for the identity; anxiety due to questions what happened before and ways of roaming the environment trying to find  a purpose link this illness with dementia. A different illness leads to memory loss in Embers. The movie contrasts a world in which people try to find out who they are in a derilict world with a sterile world controlled by technology. Safe and riskfree. The world outside is intense, dangerous, wonderful. It makes a strong case for the discrepancy between real world and a mediated one, avoiding to prefer one above the other.

The tone of science fiction has changed. At least outside the main stream as this festival shows. But even within as movies such as High-Rise and Eye in the Sky show. The role of technologies has changed. A strange apprehension relates to it. A wait for the incident. A wait for something to go wrong. What do we do when our food makes us ill, when our infrastructure erodes? When we are faced with consequences of a technology we did not foresee?  These movies are not bleak. Resourceful people are at the heart of them. People strong, loving and striving to improve. But the technology has failed its promise.

It is within this context that I seem my work emerging. Not much WTF yet, but an aim to understand what could go wrong. Before it happened. Because technology can fail. But people are resourceful. And we can deal with incidents. But possible better before they happen.