It is estimated that 55 million people are living with dementia worldwide in 2021, and the numbers are expected to rise to 78 million in 2030 and 139 million in 2050 (Siriaraya et al., 2022; World Health Organisation, 2022). Dementia is an umbrella term that describes neurodegenerative disorders that impact memory, cognition, language, and behaviour (Beck et al., 1998; Cohen-Mansfield, 2001; Kane, 2001). Along with symptoms of dementia such as forgetfulness, disorientation and communication, People with Dementia (PwD) often lose their sense of autonomy and capacity to make decisions in various or all aspects of their life (Garcia-Palacios et al., 2002; Jones et al., 2015).
Currently, there is no cure for dementia. Thus, promoting well-being in PwD or Quality of Life (QoL) is considered a quintessential measure of effective dementia care (Van Nieuwenhuizen and Nijman, 2009). QoL for dementia care is multifaceted, which includes measures related to i. physical comfort, hygiene, and wellbeing, ii. safety, security, and order, iii. maintaining a sense of autonomy, dignity, and privacy, as well as iv. living a meaningful life, individuality, maintaining relationships, and enjoyment (Kane, 2001). However, such measures of QoL can be challenging to achieve due to the complexity of dementia symptoms (i.e. cognitive decline, losing the ability to communicate, behaviour that challenges, etc.) (Hennelly et al., 2021) and families’ burden of caring for PwD against other competing priorities (Sury et al., 2013). In the case of institutionalised care, care settings suffer from understaffing and a low retention rate (Brown Wilson, 2009; Bunn et al., 2020), which leads care settings to focus on delivering everyday care (i.e. physical safety, assistance in eating and bathing) over other psychosocial QoL measures (Hicks et al., 2022). As such, there is an immense need to develop tools, interventions, and solutions to preserve and promote PwD's QoL and overall physical, emotional and mental well-being.
In the past few decades, substantial research within the HCI domain has investigated technology-supported healthcare and well-being interventions to cater to an array of cognitive, emotional and mental disorders such as body image and eating disorders (Matsangidou et al., 2020; Wiederhold et al., 2016), depression and anxiety disorders (Falconer et al., 2016; Griffiths et al., 2022; Otkhmezuri et al., 2019; Siriaraya et al., 2021), addiction (Intarasirisawat et al., 2020; Siriaraya et al., 2021, 2018), and prolonged grief disorder (She et al., 2022, 2021). Other HCI research has also investigated the use of technologies to promote positive health and well-being, including interventions for supporting and enhancing physical exercise (Kiriu et al., 2019; Matsangidou et al., 2017b, 2017a), elevating mood (Gaggioli et al., 2019; Lee et al., 2021; Peters et al., 2018), assisting in the pursuit of everyday happiness (Panote Siriaraya et al., 2022; Suzuki et al., 2021), and promoting pro-social behaviour and interaction (Ibrahim and Ang, 2018; Oliveira et al., 2021; Siriaraya et al., 2014, 2013; Slattery et al., 2021).
Given the wealth of literature on human-centred healthcare technology, we believe that utilising such technology to support PwD's lived journey through dementia holds great potential and benefits. However, such technologies need to attend to the unique design requirements when designing user-friendly and effective interventions for PwD. For instance, the fluctuation of cognitive impairment is a marked deficit of a dementia diagnosis. As such, PwD experience barriers in using mainstream web platforms due to difficulties in recognising the correct navigational path, have less eye/hand coordination when using input devices (i.e. mouse) and have a lower threshold for information overload (Slatin and Rush, 2003). Such cognitive deficits have also been reported to affect navigation and socialisation in 3D spaces (Siriaraya and Ang, 2019, 2012). Furthermore, PwD face difficulties in maintaining attention and struggle to deactivate irrelevant stimuli (Cohen-Mansfield, 2001), which may affect the efficacy of technology-based interventions. It has also been reported in the literature that PwD are sometimes reluctant to participate in activities, interventions or use new technologies, due to their concerns about how other people view them, especially if they carry out some tasks or use technologies incorrectly (Nolan et al., 2006). Hence, it is a challenge not only to persuade PwD to join an activity but also to let their guard down and be truly engaged. Finally, difficulties in the areas of language and communication is a common symptom in PwD; it can be challenging for PwD to share their thoughts or express their emotions (Banovic et al., 2018). As such, it is imperative that tools, solutions, interventions, and technologies developed are based on sound human-centred principles, and sensitive to the needs of this population in a bid to design more user-friendly, highly engaging, and effective solutions (Tabbaa et al., 2020), which can also help PwD and those around them understand their emotions through means beyond verbal communication (Jiang et al., 2022a, 2022c; Tabbaa et al., 2021; Zeng et al., 2020a, 2020b).
In the following sections, we discuss key areas of digital technologies which are relevant to dementia care. We then conclude by summarising the six papers of this special issue.
Cognitive Assessment, Training & Remeniscence
Designing and developing interventions to detect and assess cognitive deficits is one area of research that has received significant interest within the HCI community. Research has shown that older adults with mild cognitive impairment are at higher risk of progressing to more severe cognitive impairment (Petersen et al., 2001) and that early detection of subtle signs of cognitive decline provides a greater opportunity for timely intervention (Dubois et al., 2015). In one study, researchers
Promote Positive Well-being
Beyond diagnosis and assessment, many studies have focused on designing technology-based interventions to promote positive well-being and mood. One major factor leading to compromised QoL is the significant barriers PwD face in accessing stimulating, interesting and engaging experiences beyond their physical premises due to location, weather, safety concerns or mobility constraints. As such, many studies have examined how technologies can be designed to promote positive well-being. In one
Socialisation & Meaningful Conversations
The body of research has concluded that the use of technologies to build strong and meaningful connections between PwD and their social circles (i.e. family, friends, caregivers, the community, etc.) and engaging them in social activities can reduce the speed of the cognitive decline and depressive symptoms (Barbosa Neves et al., 2019; Kleinberger et al., 2019; Ramírez et al., 2014). However, family members often struggle to find topics to discuss with PwD because they are unsure if PwD will be
Physical exercise is important for PwD as it improves their physical fitness and contributes to a better QoL (Barnes, 2015). However, many PwD lose interest in themselves and others and lack the motivation to engage in activities (Kitching, 2015). Furthermore, PwD struggle to focus attention during exercise and deactivate irrelevant stimuli (Schutzer, 2004). As such, several research works have designed interventions to motivate physical exercise through gaming technologies or what is known as
Accessibility & Independence
PwD life, identity and personhood are not defined by their dementia diagnosis. As such, creating a positive narrative around “life with dementia” is essential to help PwD maintain their independence, autonomy, individuality, and, ultimately QoL for as long as possible (Yates et al., 2019). As such, many researchers have investigated ways in which PwD, especially those in their early stages of dementia, can enjoy life more independently. For instance, one study examined the accessibility
Summary of the Special Issue
It would be impossible to cover such a breadth of application areas of technology in dementia care within the scope of the special issue. We have received a significant number of submissions, and ultimately, we accepted six papers covering two key technology fields which are starting to make an important impact in healthcare generally, and dementia care more specifically: i) machine learning and ii) immersive technology.