Persona

Abstract

Dementia shows us human existence without any decoration. We see it is heartbreaking, fragile, and delicate in all details. And we see more similarities than differences in our lives than we might imagine. We are all familiar with sadness, joy, fear, despair, depression, and happiness. People who have dementia feel the same way. Sadly, emotions confuse them and us.

Formal and informal caregivers play a major role in caring for people who have dementia. These caregivers, however, frequently face great strain from care, stress, and have an increased risk of depression and anxiety. Their psychological distress is mostly caused by the shifting nature of dementia and its complexity. Despite the growing global impact, a lack of understanding of dementia leads to fears and to stigmatization. For those living with dementia (both the person and their family), the stigma gives rise to social isolation and to delays in looking for diagnosis and help. Therefore, there is an urgent need to raise awareness and understanding of dementia in all strata of society as a move towards enhancing the quality of life of people who have dementia and their caregivers and to adequately prepare formal and informal caregivers. ‘Persona’ is an artistic research project that adopts multiple design strategies to convey a better understanding of dementia to (in)formal caregivers and the public. Centered around scientific studies, and insights from primary caregivers, specialists, designers, and in collaboration with artists, this project aims to create an immersive experience to cultivate empathy, improve competence and alleviate psychological distress, and in doing so, humanize the disease and embrace the fragility of the human mind.