Navigating dementia: Engaging with Informal Caregivers through Stories

Abstract

According to the WHO, dementia is one of the main causes of elderly dependency and disability worldwide. People with dementia are not the only ones affected. As the demand for care is high, families and caregivers experience physical, emotional, and sometimes financial stress. Up to date, there is no cure for dementia and its progression. The current research nowadays focuses mainly on strategies for preventing dementia and improving people with dementia’s quality of life and those around them. Active Cues (now ‘Tover’) is an organization based in Utrecht, the Netherlands, that aims to create moments of happiness in residential care. They do so with the ToverTafel, an interactive set of projections that stimulates each of the company’s target groups, with games designed specifically for them. The starting point of this project was to enrich Active Cues’ current design process to keep designing for People with Dementia. In the first phases of the project, dementia and the needs of each of the individuals involved (Professional Caregivers, Informal Caregivers, and People with dementia) were researched through literature and generative techniques. It was found that people with dementia are fond of references to their past and that informal caregivers have access to it to a certain extent. Meanwhile, family members who act as informal caregivers go through dementia grief, have deep bonds with the PwD, know their preferences, and develop effective ways of engaging with them. Active Cues’ way of working was also explored. In their design process, professional caregivers are the representatives of PwD living in nursing houses . They support Active Cues by helping understand what happens during their design iterations and bringing suggestions for new games and their improvements. However, professional caregivers are not always aware of people with dementia history and background, nor do they have time to access it to transmit this knowledge to Active Cues. The generative techniques’ interviews show that informal caregivers are potentially rich sources of valuable insights, and they are not part of Active Cues’ design process. Integrating informal caregivers’ input in Active Cues creative design process was proposed to gain contextual knowledge about people with dementia. Based on the generative techniques’ insights, a number of requirements were identified for both the informal caregiver and Active Cues. The project focused only on the informal caregiver’s requirements: promoting reflection, being pertinent in the informal caregiver’s journey, and being light-hearted. After experimenting with digital prototypes and performing co-creation sessions with informal caregivers, a concept called Remi was designed. Remi is a digital journaling service that aims to provide informal caregivers space to decompress, reflect on one’s feelings, connect with others by journaling and sharing stories with Active Cues to generate valuable insights for their creative process. The concept was tested through storyboard sessions and an interaction test supported by semi-structured interviews. It was found that informal caregivers were willing to share personal stories with an organization such as Active Cues. They mentioned it would feel gratifying to know they are contributing to the big goal of improving the quality of life of people living with dementia.