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.

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