Proposal
The project aims to investigate the role of technology in supporting the interactions people with dementia (PwD) have, and in particular, their interactions with carers, by directly considering the psychosocial needs of their carers. With the shared understanding of perceiving the model of context as an emergent feature of the “everyday, cultural, common-sense understandings of the nature of the social world” (Dourish, 2004), we are focusing our domain research on understanding the implications of dementia, as well as the everyday activities of the social sub-system as “it brings to our attention a set of problems about the ways in which context is conceived of in current design practice” and allows us to appreciate “practice as a dynamic process” (Dourish, 2004). The social sub-system includes the PwD and the support networks (herein understood as the family, friends and other carers that a PwD may rely on in order to provide assistance). Hereinafter, our report identifies people caring for PwD as ‘carers’- a term consistent with that in the literature. In addition, we have coined the term ‘caree’ to identify PwD in an informal care situation, and ‘patients’ to identify PwD only when they are in a clinical setting or environment.
Grounded in phenomenological theory, where agency and interpretation are acknowledged as the central facets of all social action, we seek to understand the evolution of agency and interpretation in the day-to-day activities of our stakeholders (Fig. 1). To support positive interactions in the social sub-system in the Australian community, we argue the need to understand the psychosocial needs of carers. Holland (2008) noted the evolving relationship carers have with the ‘caree’, with most respondents in her study implying a sense of being overwhelmed as they are thrust into a new life-pattern, identity, and grief that had arisen from the realisation that the circumstances have changed and are unlikely to revert to what they were. In general, carers struggle for services, help, and respite, in addition to the daily practicalities and the acquisition of new skills to take on new responsibilities (Holland, 2008). Carers also cited the diminishing self-worth that accompanied withdrawal from the workforce, due to caregiving commitments (Holland, 2008). However, they also reap intangible rewards from the process, knowing that they have made a difference to the lives of someone they cared deeply for (Holland, 2008).
In line with the Theory of Reasoned Action (Fishbein & Azjen, 2010), Broese van Groenou & De Boer (2016) argued that the intention of a specific behaviour, which in this case is informal care provision, is based on general beliefs, normative beliefs, and perceived constraints. The Informal Care Model (ICM) defined by Broese van Gronenou & De Boer (2016) provides a framework of understanding how we can decipher the (onset of or the evolving nature of) informal caregiving behaviour based on the aforementioned propositions. In particular, focusing on the perceived constraints or barriers to the provisioning of informal care can help design around these issues. Broese van Groenou & De Boer (2016) also predicted an increase in non-kin informal carers in the years ahead, due to current societal trends of higher prevalence of more complex family structure, lower fertility, and longer lives of older generations, thus, prompting a possible opportunity for designing a network support of carers to include people with weak normative solidarity.
The project entails the (co-)designing of a system to support the psychosocial needs of carers of PwD through understanding the evolution of agency and interpretation in the everyday activities of our stakeholders (Fig. 1). By the end of semester, we hope to develop a proof-of-function prototype which addresses this issue of carer’s sense of fulfillment and test this with real carers in the community.
Figure 1. Stakeholder identification
PwD suffer a variety of neurological diseases which affects the functioning capacity of the brain — this extends to the decline of cognitive, behavioural and fine-motor skills, as well as short- and long-term memory loss (Dementia Australia, 2018). In Australia, ninety-one percent of PwD living in the community are supported in some way by informal carers, and twenty-two percent of these people depend solely on informal care (Alzheimer's Australia, 2015). There are more than 200,000 informal carers in Australia– people who support those with dementia in a non-professional capacity– and comprise mostly of close friends and family members (Alzheimer's Australia, 2015).
Recent studies have found that thirty-one percent of carers report that this support role has negatively impacted their physical health and has caused great degrees of stress (Alzheimer's Australia). One study by Singleton, Mukadam, Livingston & Sommerlad (2017) found that carers often felt unable to provide the level of support required by PwD for simple activities outside the house, and often felt the need to obscure their stress arising from their caregiver responsibilities and the lack of their own time for socialisation.
As many carers are related or close to the person, and because of the person's condition, the relationship dynamics shift, often traumatically reversing roles, and results in manifestations of grief in the carer for what was (Gillies, 2011, p. 657). Additionally, as the PwD spends more time indoors and become secluded from society, there is often extended contact between carer and person (Brorsson, Öhman, Lundberg & Nygård, 2011, p. 592). This can at times result in negative interactions and miscommunication resulting from frustration (Gillies, 2011, p. 666).
As a result of their role, informal carers face two significant issues– physical and emotional stress caused by performing their role, and emotional strains born out of the changing ways they must interact and relate to their 'caree'.
For a more extensive overview of research in this domain and some preliminary insights on our user research, please visit this page.
From the above background research emerged two strong themes that can benefit from further design investigation: (i) "shared memory" as a locus of interaction between carer and 'caree', and (ii) "appreciating the present" as a concept to help ground the patient and carer relationship. Further, our design interest straddles the nexus between carer and 'caree', as with any design solution requiring a way to bridge the relationship between the two parties and foster positive emotional engagement and connection. Thus, we have identified that our primary user will be carers, specifically, informal or home carers who are placed in the position of caring for loved ones. Through assisting and helping carers we believe that we are best positioned to helps solve the issues of negative emotional and psychological experiences of both the carer and 'caree', as only by helping the carer can we indirectly assist the 'caree'.
Dementia carers often feel loss for the relationships they once had with carees and feel as though they may never have the same relationship again (Gillies, 2011, p. 657). However, as a neurological condition which develops over time, many dementia patients are often capable of remembering the past during moments of greater coherence or through the use of prompts and aids. This desire to reminisce and appreciate the past emerged as a theme during our survey, with participant 01 expressing that his greatest desire when visiting his sister who was living with dementia was simply "sharing memories, sharing jokes, just being with my sister and chatting". These ordinary activities can be harnessed to facilitate calming and comforting positive emotional experiences for the carer and 'caree'.
One particular way to facilitate positive emotional connections through memory would be through the utilisation of visualisations and music, which our background survey flagged as being an important aid for PwD. This solution would involve a system that uses music, triggered by the presence of the carer, to help interact with the caree. Music has been found to help stir unaffected parts of the brain and evoke reconnection with those around them (Koger, Chapin & Brotons 1999; Svansdottir & Snaedal 2006). This system would be catered to the carer and would trigger positive music based on conditions organised by the carer, such as their location and time of day. By creating a space that senses and triggers positive, helpful music based on the carer’s location, they are able to relate in a positive, helpful environment. The experience could immerse carer and caree in an ambient physical space that contains visualisations of selected photographs, calming lights or colours moving gently to the music to visually ‘bathe’ the participants in their memories. This system would use space based technology, such as ubicomp or tangible technology and would need to be context-aware or appropriate.
This system looks at appreciating the present through the use of a “needy” robot or tangible product. This would entail a piece of technology that needs to be cared for, in a way that promotes sociability from the users. This sort of system would allow both carer and 'caree' handle something new together, while giving the 'caree' a sense of autonomy. The cube could be managed by the carer so that it is not overwhelming or disruptive to the 'caree'. By promoting new and social behaviours in the carer and 'caree', the needy robot could provide the carers with a way to see their changing relationship in a new, positive light.
As dementia often temporarily debilitates a person from remembering their train of thought it can lead to the PwD feeling ‘out of place’, it can be incredibly hard for the carer to pick up the conversation, leading to feelings of frustration or disappointment. Many carers report that over time they socialise less and less with their 'caree' and the relationship shifts to become less familiar and more mechanical or routine (Gillies, 2011, p. 666). This in turn can lead to PwD feeling emotionally isolated or depressed as they are quite often capable of connecting and being present within the moment, but just need to have their focus shifted away from what they ‘forgot’ so as to move beyond the memory lapse. The pressures of caring also lead to high degrees of stress and physical health deterioration of carers (Alzheimer’s Australia, 2015, p. 5; Singleton, Mukadam, Livingston & Sommerlad, 2017).
This system then proposes a way of encouraging positive emotional connections between the 'caree' and carer through tangible communication aids that don’t rely on language, but instead provide a way of focusing on something within the space that both carer and 'caree' can both admire and reflect on. To remove these aids from language and memory barriers, they could instead take the place of communication cubes which are placed within the house and glow certain colours based on the emotions of the carer themselves (with a pendant or band worn to monitor this sign thus requiring ubiquitous computing). This design idea addresses the ethical issue of monitoring constantly being placed on the person with dementia (Bächle, Daurer, Judt, & Mettler, 2018; Remmers, 2010), instead letting the carer be in control of their own monitoring and knowing that they are the only one that has access to this information. The cubes would glow different colours based off the emotions of the carer; red to signal that they are stressed and at risk of negative interactions, blue to prompt calm conversation and pink to encourage more fun and engaging discussion with the 'caree'. The presence of the glowing cubes within the house would also provide a way for PwD to in that moment focus on the interesting and intriguing interactions of the item in front of them instead of focusing on their limitations. It is worth considering whether this concept would require additional functionality to stand out or provide true engagement for both carer and 'caree', as well as whether it would need to only sense when the two are in the room together and thus may be best placed in common spaces for daily routine such as the bedroom of the person with dementia or kitchen.
I hope to achieve a better understanding of working in a team environment as a contributor and follower; not as a critical or important leader. I have a tendency to voice my opinions or ideas without considering other possibilities, which can lead to overly focused discussions that are blind to expansion or change. While this tendency is useful for clarifying goals or summing up discussions, it does not lend itself well to the early stages of conceptual design, as personal bias can easily influence my conclusions.
My strengths would be my research background and understanding of ethnographic research, literature reviews and analysis. This is something that I have honed over time and throughout my university experience. I also believe that I bring a strong understanding of visual and branding fundamentals (having worked in marketing for 2+ years) and am able to communicate with team members to bring us to a cohesive design solution.
My weaknesses would be that I sometimes take time to warm to change and need time to process new ideas and domains before I can sometimes fully participate in brainstorming and other discussions. This is in large part because I fall back on to my research background, which I find very comfortable, so need to learn to jump straight into brainstorming instead. Another weakness would be that I am not very developed with coding, and I hope to learn much from this course to develop my prototyping skills.
In terms of what I hope to achieve, I would like to work more on my abilities to dive into each design sprint and be more comfortable giving things a go early on. Supporting my team mates and encouraging us all to work towards a successful design solution will be my biggest goal this semester, as well as truly developing and diversifying my programming
My strengths would be programming and developing. I have some experience with multiple languages, and multiple types of development, for example web, micro-controllers, and databases. In school we have learned Java, Python, JavaScript etc, and I am looking forward to learn more and expand my knowledge.
My weaknesses would be writing and understanding of literature reviews and analysis. I do not have much experience in that field, and my writing is very much something I need to work on. I also need some time when learning new things, which can be a problem for me.
What I hope to achieve is a somewhat working prototype, and expanded knowledge regarding reading research papers and picking out the most necessary information. I also hope we succeed as a group, and that our collaboration and communication will go well.
With a science background, my strengths include experimental design, reading research papers, data analysis, and having reasonable writing ability. However, I am aware that my writing can be improved as it tends to be verbose, and can have poor sentence structure.
In the context of Human-Computer Interaction and Interaction Design, I am still finding opportunities to develop my user research knowledge and am keen on gaining more experience in writing good non-leading questions and developing good protocols to obtain better insights. I hope to find a mentor in this respect. Having transitioned from hardcore marine environmental science, I want to work on meaningful design projects as a means to improving the human experience. Increasingly, we are putting our well-being into the hands of algorithms, but I am not sure they deserve that much trust. That being said, I am still trying to construct a more nuanced worldview, learning non-violent communication and looking for meaning and understanding in what is not said.
Through this project, I hope to explore human-centred design and value-centred design, through co-designing a system and deciding on an appropriate interaction paradigm. Hopefully, we can come up with an initial prototype that can then be an evolving technology probe for the next few iterations.
- Access to postgraduate/ mature student life experiences
- Access to peers for user research and design knowledge
- Access to peers for database and web development programming background
- Access to peers for enthusiasm and passion for motivation and conducive learning
- Access to peers for ideas, perspectives, and opinions
- Access to peers for critique and feedback
- Access to resources available to the physical computing students
- Access to user groups through our network, and Ms Jacki Liddle
- Access to breadth and depth of literature from the University of Queensland library subscriptions
- Access to knowledge and maturity, as well as in depth understanding of user research, through our amazing tutors and instructors
- Access to our peers for feedback on the feasibility of our design concept
- Access to our peers for refining our system concept statement to bridge mental models
- Access to peers and tutors for the suite of programming language knowledge and know-how in terms of interoperability
- Challenges arising from different understandings of requirements for the assignment and assessment rubric terminology
- Challenges arising from varied schedules, commitments in life, workload throughout the semester
- Challenges arising from disconnecting from the Internet and not having access to agreed modes of communication
- Challenges arising from the ability to quickly devise a prototype
- Challenges arising from the lack of inspiration and imagination
- Challenges arising from participating in remote collaboration and idea generation
- Challenges arising from illness and (family-related) emergencies
- Challenges arising from insufficient timely feedback
- Challenges arising from having a broad domain that is difficult to narrow in scope
- Difficult to hone in on our primary user group from the broad category of PwD and their social sub-system
- Challenges arising from lacking access to user groups due to varied schedules and time-poor nature of stakeholders
- Challenges arising from lack of sufficient empathy for our primary user group
- Risky to choose PwD as primary stakeholders because it is hard to get in touch and get information from them but, it would be an opportunity to make something useful and helpful for them
- Risky to touch base after two week sprints, but therein lies the opportunity for us to acknowledge our working styles, varied schedules, and work on our time management skills to address our tendencies for procrastinating
- Risky to let people develop their chosen skills, due to the short time frame, but therein lies the opportunity to make sure everyone is empowered and make sure everyone is on the same page
- Risky to choose to design around easing the problems of carers, as it could be a wicked problem, but therein lies the opportunity to document failures from technology probes, and practice user-centred design to attempt to create something to benefit society
- Potential stakeholder issues:
- Dementia patients might feel that we are excluding them from the design process
- Dementia carers might feel that there issues are not as important as those they are caring for
- Dementia carers might be time poor and thus unable to fully engage with the project
- What do dementia carer participants get out of it?
- Invite any participants to the showcase, involve them in the process, make them feel valued
- Our plan of work is efficient
- Don’t skim over user needs stage
- Constantly revisit user requirements in order to ensure that the final system effectively meets user needs
- An effective design solution won’t impede the duties and responsibilities of the carer (i.e. can’t distract)