by hannah.wasserfaller -

Story based formats in Dementia treatments | Part 1.1: Digital storytelling in dementia treatment

Digital storytelling in dementia treatment

To gain a better understanding as to why digital storytelling could have a potentially positive impact on people with dementia, the following paragraphs will assess the 2017 conference paper “Digital Storytelling and Dementia” and elaborate on the findings of the authors.

Similar to other definitions, the authors of the paper suggest that digital storytelling is a type of narrative which utilizes media technology in order to create short films. Media can include sound, pictures, music, and videos. (Park, 2017, 1) It should be noted that the authors, too, agree on the fact that there is no single definition of digital storytelling, as they vary in the literature and can include the usage of communication assistive devices, ambient assistive technology, or reminiscence therapy, for the purpose of the documented study, however, the first mentioned definition holds. (Park, 2017, 2) 

The authors indicate that past research on this topic has shown potential positive effects for people with dementia to include enhanced relationships and better communication. (Park, 2017, 1) Other benefits that have been mentioned in literature are enhanced well-being, a higher level of confidence, and a sense of purpose.    Furthermore, it is stated that digital storytelling can be effective for conveying important information since it is not dependent on a single method for telling a story but allows for multiple ways to communicate it. Visuals, music and spoken words are, while being selected independently, working as a collective in relaying messages to an audience. Another beneficial factor is the ongoing availability of the content over time: participants can repeatedly  listen to or view stories whenever they please. Also, the stories can be preserved and given to loved ones as a form of legacy. (Park, 2017, 2)

For the study discussed in the paper, seven participants with dementia in the early disease stage were involved in a seven-session workshop over a six-week period. The objective of the workshops was to create digital stories with the help of care partners and researchers. The paper focuses on the first location of an ongoing multi-site project as at the time of its creation, the study was still in the preliminary stage of analysis at the first site only. The purpose of the conducted study was to better understand the benefits of storytelling and digital media usage for people suffering from dementia. (Park, 2017, 2) Sessions included a pre-study interview that was used to collect demographic information and give an impression of the participant’s usage of technology, amongst other factors. In the interview, questions that were intended to stimulate the discussion of stories from the participant’s past and present life. The first two sessions then included conversations about stories meaningful to the participant, encouraging them to think about what story they would want to follow and develop more in-depth. Sessions after that were used to create digital stories and lastly, the participants could share their stories with a larger audience, friends and family included. (Park, 2017, 5)

The discussed outcome of the study suggest an overall beneficial experience with a positive impact on the participants.These preliminary results from the study’s first site were in line with what the literature on the topic suggested in terms of positive developments in the relationship between the participants and their caregivers, as well as increased communication abilities and interactions. Generally, it can be said that topics emerging from the analysis of the data were continuously linked to engagement: the process, the stories as well as the relationships with care partners and the project’s facilitators all proved to be engaging for the participants. The usage of technology was, at times, challenging, as participants were, for example, uncomfortable using the equipment without support. (Park, 2017, 7-8)  Other challenges involved issues with memory and communication. Still, they were in turn appreciative of support and when asked to choose images, effects or songs that would be part of the digital story. Having the right setting with positive support from facilitators and care partners seemed to further enhance the experience for the participants and ultimately, not only the participants but also their care partners enjoyed the final product. (Park, 2017, 7-8) 

To sum up the results, it can be said that the overall outcome of the study can be considered quite positive and the authors feel like the usage of digital methods was, while challenging, still essential in allowing the participants to share their stories in a unique way. Digital storytelling is, according to the preliminary outcome, a promising tool for working with people suffering from dementia in order for them to create stories and interact with others through these stories, as well as to share and preserve them in a rewarding and meaningful way.(Park, 2017, 1, 9)

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by hannah.wasserfaller -

Story based formats in dementia treatment | Part 1: Digital Storytelling

Digital Storytelling

For this and the following blogpost there shall be a focus on the usage of digital storytelling in dementia treatment. This first part will explain the fundamentals of the concept of digital storytelling whereas the second part will concern itself with the contents of a study that applied the method in a project with persons living with dementia in order to gain a more detailed insight into possible use cases. 

As mentioned in the very first blogpost, dementia is a progressive neurological condition primarily seen in older people, including symptoms like memory loss and difficulties in managing everyday life. (Fels, 2011, 535-536) Interestingly, while people with dementia often struggle with recalling or speaking about current events, it is easier for them to access memories from their earlier lives. (Fels, 2011, 536) Alongside other methods, there is the approach of including digital storytelling into the treatment of people suffering from dementia. Findings of a 2022 literature review indicate that most commonly, digital storytelling is being used as a way of supporting a patient’s memory, identity, reminiscence and their self-confidence. (Rincon, 2022) It also indicates, however, that the level of evidence for the effectiveness in terms of improving emotional, cognitive or affective skills through digital storytelling is rather low and needs to be considered by clinicians when trying to reach certain treatment goals. 

Still, digital storytelling can be a useful tool in upholding an individual’s personality. Various studies indicate that the key factors in the usage of digital storytelling are, as was already mentioned above, the support of a person’s memory, identity, reminiscence or self-confidence and follow an approach based on personal experiences.

In order to understand how these methods are being used, it is necessary to explain the term digital storytelling and the significance of storytelling itself further. 

Storytelling in general has always been used for passing on the knowledge connected to a peoples’ history, heritage and traditions from one generation to the next, and has therefore always been a powerful technique to exchange experiences and communicate knowledge. (Smeda, 2014)

It is an important method of communication – and is also recognized as such in many fields of study such as sociology, nursing research, folklore, and communication studies –  in all of life’s stages, as sharing narratives provides people with the possibility to connect with others and convey lived experiences and events through conversation. Stories can emerge in various forms, be it myths, fictional, autobiographical or other narratives.  (Fels, 2011, 535)

With the evolution and development of digital technologies people continued to tell stories with the help of new multimedia tools, such as digital cameras, computers or editing softwares. (Smeda, 2014)

Simply put, digital storytelling happens when digital technologies are being used to create or tell stories. (Rincon, 2022)  The concept of digital storytelling emerged at the California Center for Digital Storytelling in the late 1980s as a method used by community theatre workers to record, produce and disseminate stories. Generally, there is no one definition of the term “digital storytelling”, however most explanations emphasize the usage of multimedia tools such as video, audio, animation and graphics. The association defines it as a “modern expression of the ancient art of storytelling” (The Digital Storytelling Association, 2011). A definition by Normann describes digital storytelling as “a short story, only 2–3 minutes long, where the storyteller uses his own voice to tell his own story. The personal element is emphasised, and can be linked to other people, a place, an interest or to anything that will give the story a personal touch” (Normann [2011]). 

There are also other definitions that vary in their details, such as a more technology-focused definition  by Meadows that suggests digital storytelling uses cost-effective cameras, computers and non-linear authoring tools in order to produce short multimedia stories that fulfill the social components of storytelling. (Smeda, 2014)

The process of digital storytelling involves active contribution of the individual participants who are invited to construct digital stories in the form of short movies that make use of various media technologies such as images, narration, music, or text. The content consists of personal perspectives on experiences and narratives. (Sitter, 2024, 907) It can be especially useful as a means of combining an individual’s context based experience with meaningful content. Digital storytelling is often mentioned in an educational context, as the concept has been more and more incorporated into the educational systems of the Global North such as North America and Europe. The term Global North describes societies and countries that “are developed in terms of democracy, technology, wealth, and politics.” (Sonday, 2021, 1) The usage of this format in a learning environment can foster qualities such as problem solving ability, critical thinking, collaborative skills. (Sonday, 2021, 1)

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by hannah.wasserfaller -

Topic Introduction: The Memory of Stories 

The  following and upcoming blogposts intend to dive into the topic of story-based methods and their impact on people living with dementia / Alzheimer’s disease. First steps would be to analyze the illness and both traditional and new treatment methods, as well as to explore the usage of story-based formats such as digital storytelling during treatment or/and as a tool for communication. For further understanding of the topic there shall be an explanation as to what story-based approaches are, what (digital) storytelling is, how it is currently being used and eventually it should be defined what kind of approach could be implemented for a practical application of the obtained knowledge into a real-life project. The idea is to use a story-based format as a foundation for developing a creative approach in dealing with and/or raising awareness for the topic. 

This first blogpost will briefly touch upon the topic of dementia and its subtypes in order to gain some insight into the illnesses and the symptoms connected to it.

INTRODUCTION: DEMENTIA

One of the defining processes of the 20th century was the global population aging, with its consequences continuing into the 21st century. Populations are growing even though fertility rates are falling, meaning that the world population of elderly people will overtake the number of children. (Sosa-Ortiz, 2012)

Generally, it can be said that with the population’s rising life expectancy, the rates of dementia are increasing as well. (Rincon, 2022) Globally speaking, the number of  people living with dementia is expected to rise to 82 million over the next 11 years – in 2019, the number was significantly lower, with 50 million people suffering from dementia. (World Health Organization [WHO], 2019). 

There are various types of dementia, which, according to diagnostic criteria can be divided into subtypes such as Alzheimer’s disease, fronttemporal dementia or vascular dementia. A construct frequently used to describe groups of people that are at risk of developing dementia is called mild cognitive impairment (MCI), which is especially important to recognize in order to be able to take preventative measures. (Sosa-Ortiz, 2012)

Overall „Dementia is a syndrome caused by different disorders that affect cerebral structures and functions, causing progressive deterioration of memory, other mental functions and behavior.“  (Sosa-Ortiz, 2012, 600)

Dementia is an umbrella term that includes a broad range of symptoms but it is not in itself a disease. These symptoms commonly include memory decline, changes in the ability to think, judge or reason, loss of focus and attention as well as changes in behavior and language. (Graff-Radford, 2024)  

Peoplesuffering from dementia will be impaired in their ability to perform everyday tasks, which has tremendous effects on a person’s autonomy and independence. This can be challenging for all parties involved, including the patient themselves, caregivers and families. (Sosa-Ortiz, 2012, 600-601)

Dementia can generally occur at any age, however, the risk of developing it increases with a person’s age and is more common in the demographic group of people above the age of 60. There are also other factors that can contribute to the risk of developing dementia, such as high blood pressure, diabetes, genes or smoking. (Loh, 2023)

TYPES OF DEMENTIA

Alzheimer’s disease 

Even though the terms are often used interchangeably, dementia and Alzheimer’s are not the same thing. Alzheimer’s disease is a specific brain disease marked by symptoms of dementia that gradually become more and more severe. As mentioned above, it is the most common dementia type. It affects the part of the brain responsible for learning, which is why early signs often include changes in thinking, memory and reasoning skills. With the disease progressing, also the symptoms worsen and can include behavioral changes or confusion amongst others. (Graff-Radford, 2024)
Alzheimer’s disease is thought to emerge due to abnormal protein deposits forming in the brain, disrupting the communication between the brain cells. (Loh,2023)

Vascular Dementia 

Vascular dementia is caused by a reduced blood supply of the brain due to blocked, narrow, or damaged  blood vessels, often connected to a stroke or damaged blood vessels caused by diabetes or high blood pressure. Following this diminished blood supply, the brain is deprived of oxygen and essential nutrients. It is also a common form of dementia. (Loh,2023)

Lewy body Dementia

When there is a build-up pf protein deposits called Lewy bodies it can lead to Lewy Body Dementia. As is the case with Alzheimer’s disease, the protein deposits disrupt the function of a person’s brain cells and lead to a decline of cognitive abilities and issues with movement, amongst others. Since the symptoms can be similar, Lewy body Dementia could be confused with Parkinson’s disease. (Loh,2023)

Frontotemporal Dementia

Frontotemporal dementia is caused by the progressive degeneration of nerve cells in the temporal and frontal lobes of the brain and characterized by behavioral and personality changes as well as alterations of the language abilities. It is a rare form of dementia. (Loh,2023)

Most types of dementia can not be cured, however, certain treatment methods and strategies can help with the symptoms and improve the patients’ quality of life.  (Loh, 2023)

The next blogpost will elaborate on the topic of story-based treatment methods such as digital storytelling and explain the fundamentals of the concept. 

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