Literature Review
This is the summary of background research into the domain of PwD and the social sub-system. It provides an extensive look at PwD, their carers, technologies used in this space, and previous efforts in designing in this space. It also includes preliminary user research. This research has and will continue to inform our domain identity and our design opportunities.
Globally, more than forty seven million people are known to be living with dementia (Boessen, Verwey, Duymelinck & Rossum, 2017, p. 1). Dementia, as an umbrella term for a host of neurodegenerative diseases, has gained increased awareness over the past decade following the sharp increase in the number of dementia diagnosis (Dementia Australia, 2018). It was predicted that by 2025, the number of people living with dementia in Australia will surpass the 536,000 mark (Dementia Australia, 2018). Our domain research explores the breadth and depth of experiences for both ‘caree’ and carer. We recognise the growing body of literature documenting the different experiences of younger PwD, or younger onset dementia, whose demographic often sits outside the scope of much of the findings below (Bell & Leong, 2017). As such, our research provides coverage on the experiences of PwD, carers and support networks, existing technological solutions for both PwD and carers , as well as papers on appropriate design methodologies.
A major facet of our research investigated the experiences of PwD, how the disease impacts their day-to-day lives, and issues with their treatment within society. Once confined predominantly to health facilities and residential aged care, a strong body of academic research emerged during the 1990s promoting the ‘right’ of PwD to ‘age in place’, (Vasara, 2015, p. 56). Within Australia, older PwD are increasingly choosing to stay within the home rather than be placed in residential care, leading to some calling for an even greater requirement for dementia awareness among the general public to mitigate the stigma and misunderstandings that were prevalent in the broader community (Annear et al., 2015, p. 2). Yet, of those who chose to remain within the community, approximately ninety-one percent still relied on someone in their life to provide informal care (Alzheimer’s Australia, 2015, p. 5).
PwD are often characterised unfairly as incompetent and incapable of independence, despite their demonstrated competence in completing tasks adapted for the stage of their neurodegenerative development (Seifert, 2001, p. 65). A significant issue of ageing in the home environment arises when the PwD develops a sense of loss in independence and autonomy, due to their increased inability to navigate routine tasks without extensive help from a carer- This presents the need for fostering psychosocial needs, which is apparent in residential care living arrangements or aged-care facilities, as these places may provide greater opportunities for socialisation and the building of a sense of self-worth from the undertaking of skill appropriate tasks as facilities are in place to consciously assess the abilities of PwD (Vasara, 2015, p. 63). Interestingly, the introduction of technology in traditional environments, such as self-service machines in store, libraries and automated phone lines for hospitals and pharmacies also discourages many PwD from frequenting these places, as such technology is often inaccessible for them (Brorsson, Öhman, Lundberg & Nygård, 2011, p. 594).
The development of dementia can alter the ways in which people relate to their physical and built environment, with crowded places, loud noises and unfamiliar landmarks proving to be upsetting for some. However, many highly value continued activities in familiar environments and the consistency and independence this brings (Brorsson, Öhman, Lundberg & Nygård, 2011, p. 591-592). One participant in their study highlighted their perseverance in the face of dementia impacting their ability to independently complete tasks:
I’m as stubborn as a mule. So that ..., helps me a lot, I must say. Now I’m going to darn well do this, so to speak. Now I’m going to, going to do this, and I do it with a certain amount of difficulty. But, but it’s better with difficulty than if I were just to sit down and fade away, right? (Brorsson, Öhman, Lundberg & Nygård, 2011, p. 592).
Furthermore, the tendency to keep PwD from wandering outside for fear of missing persons is heavily documented among medical journals, despite the fact that outdoor spaces can be therapeutic and are important for other aspects of both mental and physical health (Brittain, Corner, Robinson & Bond, 2010, p. 272). In fact, both physical exercise combined with a socially integrated lifestyle have been proven to help slow the effects of dementia significantly (Fratiglioni, Paillard-Borg & Winblad 2004, p. 351). Further, while drugs are often used to treat the symptoms of dementia, alternative forms of therapy have also proven to be successful in treating symptoms of dementia such as music therapy (Koger, Chapin & Brotons, 1999; Svansdottir & Snaedal, 2006). Music more generally also has the ability to reduce anxiety and provide a positive emotional and psychological result for PwD, as identified by a music intervention between carers and PwD by Sung, Lee, Li and Watson (2011), demonstrating that their is much promise in this space for possible dementia related design solutions.
Carers of PwD are an often overlooked and understudied group in the literature despite their prevalence in society. It has been estimated that there are approximately 200,000 people responsible for providing unpaid care to PwD (Alzheimer’s Australia, 2015, p. 4). The impact of this upon the lives of carers is significant, with thirty-one percent reporting in this same survey that taking on this role had negatively impacted their physical health and had generated a great deal of stress (Alzheimer’s Australia, 2015, p. 5). Singleton, Mukadam, Livingston & Sommerlad (2017) found that carers often felt unable to provide the level of support PwD need for simple activities outside the house and often felt the need to hide their stress level. This sense of lack of competence and time is a results of caring responsibilities and the lack of their own time for socialisation. It is important to note that carers in this study overwhelmingly attributed the social changes of PwD, including forgoing previously routine social activities, as a choice, whereas the researchers own interviews with PwD identified the underlying factors of fear, shame and depression (Singleton, Mukadam, Livingston & Sommerlad, 2017, p 7).
Often placed in a vulnerable position of caring for a person they themselves once relied on, carers of loved ones are having to acknowledge and accept this shift in the relationship and declining cognitive ability of the PwD. This often results in manifestations of grief in the carer for the loss felt (Gillies, 2011, p. 657). As the condition develops, PwD often find themselves retreating indoors and confining themselves to the familiarity of their own homes, whilst removing themselves from outside space. This behavioural change can lead to extended contact time between carer and caree (Brorsson, Öhman, Lundberg & Nygård, 2011, p. 592). This can at times result in negative interactions and miscommunication resulting from frustration (Gillies, 2011, p. 666). Ultimately, the identity of the PwD shifts with the development of their cognitive condition, which impacts their level of autonomy in their everyday lives. As such, the carers’ lives and psychosocial needs are often re-positioned entirely around their newfound, and often unexpected, identity as a carer, and constantly re-evaluated with the evolving nature of the condition their ‘caree’ is experiencing.
Technology solutions within this space have been largely concerned with assisting PwD, with a plethora of assistive aids and gadgets proliferating in the domestic market over the past decade. Examples of these assistive technologies include monitors, sensors, reminder tools, communication devices to support everyday living and often facilitate the idea of ageing in place. One study of assistive technology as used in the daily routines of PwD and their carers found that such technologies were often effective in supporting families overall, however noted that the diverse quality of products, from healthcare regulated to ‘off the shelf’ made it difficult to assess (Gibson, Dickinson, Brittain & Robinson, 2015, p. 89). In their study of current assistive technology offerings in the form of memory aids, der Roest et al (2017) found that current products ironically often lack fundamental usability or consideration of the needs and requirements of those with dementia. From a design perspective, conventional visual signifiers and markings such as maps, signs and icons are often difficult for PwD to interpret or utilise (Brorsson, Öhman, Lundberg & Nygård, 2011, p. 591-592). Further concerns pertain to the socio-economic issues surrounding the development and availability of assistive technologies within the community, which are often costly, as well as the ethical considerations regarding privacy and continuous monitoring of PwD (Bächle, Daurer, Judt, & Mettler, 2018; Remmers, 2010).
While the above concerns are not to be devalued, there are still many positive aspects of current and emerging assistive technology solutions, which can be utilised in order to empower PwD. Brittain, Corner, Robinson and Bond (2010) argue that technology is often utilised by PwD in order to mitigate feelings of exclusion and feel comfortable in outdoor environments. They argue that for people with MMD, going outdoors present social and physical landscapes that can enable someone who experiences memory loss to re-orientate themselves and carry out their day-to-day activities with a sense of fulfilment. Through their research, they have established that people with MMD tend to have a heightened awareness of the visual cues in their surroundings, given the knowledge that they may be at risk of being disoriented. Their data also presents the destabilising effect a dementia diagnosis may have on people with MMD’s experience or perception of the outdoor space, as their right to enjoy the outside environment is often constrained by the growing uncertainties in their abilities or the amplified fear or embarrassment associated with being lost. The dislodgment of oneself from a place which they previously enjoy may lead to more a profound sense of social isolation and downstream loss in one’s sense of identity. The study clearly aims to revisit data from previous relevant studies on how everyday technologies mediated people with dementia and their physical environment. In addition, the study aims to re-analyse the lived experiences of people with dementia and their carers, and explore the issue of how familiar or unfamiliar environments enable or disable those living with memory loss. Qualitative data was obtained using an inductive approach, constant comparative method (Glaser, 1965), and deviant case analysis. Focus groups were carried out to supplement qualitative data obtained from two relevant studies in literature. The pros and cons of the methods were well-documented and used in social research across a myriad of topics. The paper is credible and has been cited by around 88 peer-reviewed articles that were published in several quality journals. In particular, Vogt et al. (2012) referenced this article in their paper on putting dementia into context and had produced a set of design recommendations that strived to informed design for assistive context-aware applications for people with dementia. Through exploring “the varied meanings and lived experiences of older people with dementia, in relation to everyday technologies in public spaces outside of the home that both challenge and support their experience of everyday life”, the article addresses a crucial but understudied aspect of dementia research, as identified in Blackman et al. (2003). To improve on the quality of research on the specific group of participants, a cultural probe could be used to elicit insights on how comfortable they are with the current suite of assistive technologies, and how their preferences can shape future designs of assistive technologies.
Teipel et al. (2016) have investigated the potential of ICT devices for enabling PwD to successfully navigate outdoors environments autonomously, using situation-aware design solutions and machine learning.Further studies have assessed the potential of video games, chat rooms, social networks and personal reminder systems for empowering PwD and increasing their socialisation (Khosravi, Rezvani & Wiewiora, 2016, p. 603). Robotics have also proven to be promising in the area of dementia treatment and for companionship (often addressing important emotional needs), although researchers emphasise the need for a robust build and can become a burden (Hebesberger et al., 2016, p 27). Overall, situational technology is promoted as among the most promising design spaces for PwD, though cost is once again a prohibitive factor (Teipel et al., 2016, p 699).
Carers are not necessarily the end users of any specific technology in their role beyond assisting PwD as they adjust to the changes from their disorder, though they are often the end users of monitoring technologies. As Megges et al. (2017) points out, assistive technologies such as locating systems are equally as important for easing carer anxiety and providing constant certainty over their status and whereabouts, as much as they are for patient safety. The easy retrieval and sharing of information concerning health (like medication use, weight and medical records) as well as record systems to account for everyone involved in the care process was flagged by one study as a major requirement by informal and formal carers (Boessen, Verwey, Duymelinck & Rossum 2017, 2). However, there are major issues with the delivery of technology for carers, with assistive technology solutions often designer for either formal or informal carers, yet rarely designed so as to encompass both (Boessen, Verwey, Duymelinck & Rossum, 2017, p. 1).
In terms of design methodology, our research indicated that there are few articles reflecting on the usability and user experience testing methodology process overall (Meiland et al. 2017, p. 1). However, projects that have emerged from several institutions do present interesting ways to approach the design process and design for carers of PwD. For instance, Boessen, Verwey, Duymelinck and Rossum (2017) explored the use of an online web platform to provide detailed statistics and medical records and history for easy availability to all involved in the care process of the people with acute dementia. They grounded their study with an iterative, user-centred design method, consulting carers of persons with dementia who were comfortable with smartphone and tablet technologies in their everyday life throughout the study to inform their design decisions. Accordingly, their online platform solution borne out of testing was praised by participants for truly enabling better communication and collaboration among all involved in the support of persons with dementia. Another project by Westphal et al. (2017) designed a tablet game for PwD (named Piece by Piece) which promoted nostalgic memories through content on screen and relied heavily upon the input of stakeholders ranging from occupational therapists, to doctors and over 440 PwD. Their iterative design approach, utilising PwD and valuing their input at each stage of the prototype was determined to be influential in leading to design conclusions that current tablet hardware solutions are not accessible enough for elderly people with decreasing cognitive abilities (Westphal et al., 2017, p. 39).
From these findings, we have decided to carry out a preliminary survey of our users to better understand the experiences of people with family or friends diagnosed with dementia, or who have cared for PwD as either informal carers or in a clinical setting such as nursing homes or hospital. These questions were carefully selected so as to best understand the complicated relationship that these individuals may have and how this changes as dementia progresses. We specifically wanted to uncover the emotional aspects of this situation or relationship and also uncover more about the routine and habits of the person who has dementia as understood by the interviewee themselves. This enables us to understand the perspective of this specific user group, not to necessarily learn more about the experiences of those with dementia themselves, and we can thus design to the needs of carers and support networks and ease their emotional discomfort.
Users were given the preliminary survey in the form of a Google form which was useful as many participants were interstate or out of Brisbane. This ‘quick and dirty’ approached enabled us to quickly gain invaluable end user perspectives and gain a better understanding as to the nature of dementia as understood by those who support or are part of the broader support system for PwD. The survey contained an opening disclosure section and consent information adapted from DECO7250/2500 (Human-Computer Interaction). Users were then requested to confirm consent based on these terms prior to commencing the survey. Questions were broken into different sections based on themes:
- Would you consider yourself a carer, support network or other?
- How often would you see this person who is diagnosed with dementia?
- Has your relationship with this person changed since the development of their dementia? If so, what has changed?
- What do you value in your time spent together?
- What do you value in your time spent apart?
- Can you still connect over old memories together?
- What is the current living arrangement for this person and how do you think they feel about this?
- What is the daily routine for this person?
- How do you think this person perceive/ makes sense of time?
- How would you describe your emotional state when you are with them?
- Do you feel like you can appreciate the relationship you currently have?
- Would you like anything to change?
- What do you think they need?
- If applicable, what are some misconceptions that you think people do not understand about dementia and their support systems?
- Is there anything else you would like to add or you think would be important for us to understand?
Three responses were obtained so far. These respondents are:
- (P01) The twin brother of a woman with dementia who now lives in residential care, acting as part of her emotional support network and visiting weekly. He has now come to terms with the changes to her cognition and is now emotionally present when he is with her and can appreciate their relationship, but says her immediate family has retreated which frustrates him.
- (P02) A nurse with experience caring for PwD in hospital environments and finds it hard to see families retreat from PwD due to misunderstanding, fear and feelings of frustration. She feels that from a healthcare perpsective, PwD need better systems in place to help them communicate their needs to those around them.
- (P03) The grandson of a person with dementia in residential care, visiting on an infrequent basis and appreciating learning from his grandfather but also feels that he is not the person he once knew which saddens him.
Figure 2. Affinity diagram of user sentiments
More findings with regards to our other survey questions can be accessed through our survey results spreadsheet. We intend to gather more responses and then proceed with in-depth analysis. Following which, we intend to follow-up with semi-structured interviews to gain more awareness of the value and emotional themes that have arisen from our surveys. A cultural and/or technological probe will be used in following iterations of our design process to gather impressions on their beliefs, desires, values, aesthetic and cultural preferences.