Digital storytelling for person-focussed dementia care

Dementia is a significant and growing health and aged care problem in Australia that has a substantial impact on the health and quality of life of people with the condition, as well as their family and friends. Dementia describes a group of similar conditions characterised by gradual impairment of brain function. The condition affects memory, speech, cognition (thought), behaviour, mobility and an individual’s personality. Health and functional ability decline as the disease progresses. Dementia is considered a terminal as well as chronic condition, with most people in the final stage of dementia requiring constant care and support, either from residential aged care services or community support1.

It is estimated that there were between 386,200 and 472,000 Australians living with dementia in 2021, and this number is predicted to more than double by 2058  reflecting Australia’s ageing population2. The delivery of meaningful aged care and dementia support, often called person-centred care, is challenged by a lack of personal knowledge about the person being cared for, and individualised service. One highly effective solution to this problem is for people with dementia and their families to record and share their life stories3. Life-story work (which involves collecting memories and moments that are important to the person to assist them to regain their sense of self) has the potential to enhance person-centred care4, improve quality of life and benefit the staff delivering care5. Research has found that five-minute documentary films, co-produced with the families of people with dementia, provide a personal insight into a person that clinical notes do not6. Furthermore, audio story recordings can help staff deliver tailored care and better understand the individual wants and needs of people with dementia3.
The process of life storytelling has been shown to provide positive experiences for both carers and families of people with dementia through strengthened relationships resulting from an increased understanding of life histories and preferences7. Despite its benefits and evidence of its promise, the number of published studies is small7 and suggests life storytelling in the dementia care context is yet to reach scale. There are a wealth of innovations reported8,9,10, but there are more reviews on the use of robots11 in aged care than on life stories, and implementation is piecemeal. Given the size of the population of people with dementia, their families, carers and service providers, digital technology could help life storytelling realise its potential as an accessible, adaptable, scalable and cost-effective intervention to support person-focussed dementia care. One such technology is StoryTiling.
StoryTiling is an existing and novel app technology that uses anthropological science to make it easy for people to capture their life stories in the form of video narratives. The app contains 40 topics and hundreds of questions that make the process of eliciting and preserving memories simple and enjoyable.

StoryTiling is an Australian tech company with roots in Sydney's start-up ecosystem. It has received investment from the Antler VC and has won the highly competitive MVP Grant from the NSW Government. While StoryTiling was formed just one year ago, it's already actively used by customers in eight countries worldwide, with stories recorded in over five languages. Competitors in the market offer the ability to privately share their stories with family members, however their focus is on social media distribution of the stories, and require the user to figure out how best to tell their own story; by contrast, StoryTiling’s unique value proposition for use in a dementia care setting is its guided storytelling process that is rooted in anthropological science – StoryTiling is the only product that combines the expertise of the social sciences with key learnings from social media platforms on how to make storytelling social and fun. This is important because Assistants In Nursing (AINs) who work with people with dementia have minimal education in communication techniques, yet the people they care for come from many cultural, religious and language backgrounds. The anthropologically informed approach of StoryTiling provides a platform to implicitly ‘teach’ and enable AINs in the art of asking questions no matter what the background of the person with dementia may be. This culturally sensitive feature is particularly valuable when working with people with dementia, who may have reverted to their first language, and may be cognitively embedded in their own past due to dissociation in remote and short-term memory12.
For these reasons, StoryTiling may offer people with dementia, carers and families a convenient solution for improved welfare and wellbeing. This project will examine the feasibility, acceptability and effectiveness of storytelling via the StoryTiling app to support person-focussed dementia care in residential and community care settings in Australia.