Personal and complex: The needs and experiences related to technology use for people living with dementia

Abstract

Background

With increasing focus on living well with dementia, technology has been identified as having potential benefits for safety, independence and wellbeing. Despite a large growth in specialised technology development, there has been limited uptake. There is a need to understand the current use and needs related to technology for people living with dementia and their care partners (informal carers).

Methods

As part of a participatory design study, a qualitative inquiry into technology experiences and needs was undertaken within an interpretive description approach. A cross-disciplinary team including living experience experts (people living with dementia, unpaid care partners) was involved. Semi-structured interviews, including sharing technology locations and supports, were conducted, audio-recorded and transcribed. Key aspects of the technology use experience were constructed.

Findings

Thirteen people living with dementia and 21 care partners participated in the study. Two core aspects of technology use were identified: Lots of moving parts: the complex context, and A technology cycle: the use and non-use. The findings indicated that the context involved an individual configuration of multiple factors including the user, their technology identity, their supporters, the technology and the environment. The experience is underpinned by shifting foundations created by constantly changing technologies and user characteristics. The cycle of use and non-use identified the processes required to maintain technology engagement.

Conclusion

The use of technology for people living with dementia is complex and personal. Future technology development, policies and practices need to consider this complexity and the effort required to keep using technology to realise the benefits.

Keywords

technology assistive technology participation lived experience carer

Introduction

There is a current focus on ways of living well for people with dementia and their care partners (World Health Organization., 2017). Increasingly, technology has been identified as a potential means of both improving outcomes and reducing the need for formal and informal supports (Astell et al., 2019; World Health Organization., 2017). Despite a growth in dementia-specific technology development, there has not been a widespread increase in use (Ienca et al., 2017). Various reasons for this have been suggested including a lack of human-centred approaches to technology development and a lack of infrastructure and supports for technology use (Astell et al., 2019; Ienca et al., 2017).

There is widespread acceptance that both purpose-specific assistive technologies (e.g. wheelchairs, reminder systems) and mainstream technologies (e.g. email programs, microwaves) have the potential to support people’s participation within and contributions to their communities (Boyd et al., 2017; Gibson et al., 2019; Layton & Borg, 2019). There is also emerging evidence of the important role technologies and related supports may play for people living with dementia and their care partners (Laver et al., 2017). Preliminary research suggests there is potential for technology in assessment and monitoring, assistance with daily activities, caregiver support and wellbeing (Astell et al., 2019; Moyle, 2019; Moyle et al., 2021). However, the development of technologies and research about their impact is not yet considering the requisite issues including theoretical frameworks, user perspectives, privacy of data management, interoperability and cost-effectiveness (Ienca et al., 2017; Lazar et al., 2017; Moyle et al., 2021).

Mapping of technologies onto the dementia care pathway according to function of technology, stage of dementia and context of care indicated there were many aspects of functioning and stages where technology may support care (Lorenz et al., 2019). The most common function of technology developed for people living with dementia focused on safety and passive monitoring. However, potential was also identified for technology-based supports ranging from memory support, therapeutic engagement and care delivery. While a range of technologies is being created, the authors noted there was little uptake of specialised technology, with everyday technologies being more commonly used (Lorenz et al., 2019). A large randomised controlled trial of assistive technology and telecare practice for people living with dementia in the community indicated that technology recommendations and prescriptions often did not lead to use, and, current practices seemed unlikely to lead to benefits for users (Forsyth et al., 2019). They also identified that quality of life and participation issues were rarely considered, rather, a focus on technology related to safety was common. The authors identified necessary future research focus on understanding technology-related needs, and how these may better translate to technology recommendations and use. Others also support the need to understand technology-related experiences and needs to inform better technology design and technology support services (Forsyth et al., 2019; Ienca et al., 2017; Lazar et al., 2017). Research needs to move from laboratory-based evaluation of prototype technology use, or health professional recommendations that are not translating into practice and critically challenging existing approaches (Lazar et al., 2017). We need to understand how technology is used, and not used, within the homes of people living with dementia, and the related needs.

This study aimed to explore the current experiences and contexts of use of technologies for people living with dementia and their care partners (unpaid family members or friends providing care and support). A particular focus was placed on technologies that support communication and participation, reflecting the nature of funding for the study (a language research centre) and the stated priorities of the Living Experience Expert Reference Group. This is a broad grouping of technologies, including everyday and specialised technologies and aiming to capture the experiences and needs related to many technologies encountered in the home and community. Definitions and categorisations of included technologies were kept purposefully broad to enable participants to share their practices and experiences that they felt related to communication and participation. The study aimed to gain this understanding to inform the development of better technologies and related practices.

Methods

Within a larger participatory design study (Robertson & Simonsen, 2013) which aims to codesign communication technologies, an initial inquiry into the issues around communication changes and technology use was conducted. The overall project was guided by a living experience expert reference group (with a dynamic membership of approximately 15 members including people living with dementia and people providing unpaid care/support to a friend or family member living with dementia), who were involved in setting priority areas for the study, providing feedback on methods and engagement in data analysis. The current study represented an initial exploration of context, experiences, needs and advice to inform the next stages of co-designing technologies, and form a shared understanding of use and needs prior to designing new technologies. An interpretive description approach (Thorne, 2016) was applied to the initial inquiry, with a focus on understanding and improving practice within the studied context. Within this approach, investigators are recognised to have understanding and perspectives from working within the context, which they apply directly in building understandings that can be applied back to improve practice in that context (Thorne, 2016). Four members of the living experience expert reference group (2 living with dementia, 2 care partners) were members of the investigator team for this study and are coauthors.

Population and recruitment

Potential participants were invited to participate in an interview about two main areas: a) the experiences of living with communication changes related to dementia and b) technology experiences and needs. Newsletters, health and community groups, and social media were used to share information about the study and invite participation. Purposive sampling was applied, in that the research team attempted to hear from people with a range of dementia and health characteristics, as well as technology engagement, through targeted requests and recruitment attempts. Characteristics sought and monitored in purposive recruitment were gender (person living with dementia, care partner), age group (younger or older onset), dementia type and severity, experience with technology (self-described – high, moderate and low) and living situation with carer (coresident or not). Attempts were made to include people speaking different languages at home (as a communication consideration) and in including people from regional and remote areas. Recruitment continued until perspectives from a range of participants could be included. However, no potential participants who volunteered to participate and met inclusion/exclusion criteria were excluded.

Participants could be living with dementia or a care partner/regular communication partner of someone living with dementia. Participants who were living with dementia needed to be able to provide consent (or have consent provided along with their assent), be living in the community and be able to communicate sufficiently for an interview. Care partners needed to be regularly involved in providing unpaid support for a friend or family member living with dementia, be an adult and be able to communicate in English.

Signed consent was required before participation. The study was approved through the University of Queensland and Bond University Human Research Ethics Committees (2017000705, 2017000712; 16114).

Participation was flexible and could occur face to face, via the telephone or via videoconferencing. Basic demographics, description of dementia and level of impact (based on the matrix within Clinical Dementia Rating Scale (Berg, 1984)) was elicited conversationally. The matrix indicates the impact on aspects of cognitive, and community and home participation, giving an overall severity level from 0 (no dementia), to 3 (severe dementia). An audio-recorded interview was then conducted. Flexibility in scheduling and communication approaches were prioritised to optimise participation. Following completion of the interview, participant checking was conducted through a summary of key points from the interview being prepared and sent to participants within a week after their interview to check the team’s understanding, build a shared understanding of key issues, and to provide an opportunity for participants to offer feedback and potentially further information.

Data collection and analysis

Semi-structured interviews were undertaken using interview guides and flexible communication approaches. The interview guide was developed from the clinical and technology experiences of the research team (from occupational therapy, speech pathology, technology design perspectives), feedback from the living experience reference group and reflection of key issues within the literature. The guide contained questions about the experiences of living with communication changes, using technologies, and their current and future needs. Participants were also asked to share locations of use and adaptations they had made to technologies to support use, via direct demonstration, photographs and sharing of blogs and videos. Interviews were conducted by two interviewers who are also health professionals (JL, AG). They were not known to the participants before the interviews. The interviews were summarised by the interviewer before participant checking. In addition, the full audio recording was transcribed verbatim by a transcription service.

Analysis involved reading and rereading transcripts throughout the data collection period and were undertaken by a core group (JL, SA), with purposeful wider consultation with the interdisciplinary project team including living experience experts at times. Key ideas were noted and organised after each interview. Data were managed in Dedoose software (version 8.3.41; web application SocioCultural Research Consultants), enabling exploration of demographic characteristics alongside content categories. Three main content areas were constructed from the interview data. These were: the experiences and needs related to communication changes, the impact of technology design, and the experiences and needs of living with technology. The latter is the focus of this current work, with the former two reported elsewhere. Within the data about living with technology, two researchers (JL, SA) conducted line by line coding where six core areas were derived. These included environmental considerations, life history, types of technologies used, the purpose of technology, use experiences, and processes of learning and using technology. Living experience expert investigators and research team members discussed how best to engage in analysis. Accessible approaches were used including sketches of summarised content, provision of brief and more detailed findings (including anonymised verbatim quotes), and options for preferred engagement including zoom discussion (1:1 or group), emails and other written discussions. The investigator team were asked to provide perspectives on what made sense (or didn’t), what reflected (or contradicted) their experience in this area, what seemed most important, and what was useful (or not) for application. Points of confusion or nonagreement were encouraged to be shared and were discussed openly, with reflection on the nature of each investigator’s understanding and perspectives. Through discussion between the coders, and the broader research team, including the living experience reference group, these were synthesised to two main areas reflecting the experiences of living with technology: Lots of moving parts – the complex context of technology and A technology cycle – the process of use and non-use of technology. These were refined through discussion amongst researchers, including the development and iteration of diagrams showing the relationships and processes (Figures 1 and 2) which were helpful in making key aspects and relationships between these clear.

Figure 1.

Lots of moving parts: The complex context of technology use for people living with dementia.

Figure 2.

A technology cycle: The use and non-use of technology for people living with dementia and care partners.

Rigour

The trustworthiness of the research was supported through a range of strategies including peer and participant checking, the use of interview guides, the maintenance of researchers’ logs, triangulation of data sources in data collection and perspectives in data analysis. Members of the research team considered reflexivity within the research process. They reflected upon and shared their disciplinary (health professional, technology) and lived perspectives and the impact on their understandings and assumptions within the design, conduct and analysis of the research. This included regular team reflexivity discussions as part of general team practices, and specific reflexive discussion in relation to findings, understandings and perceptions of usefulness of insights. These were conducted individually and in small groups including with living experience experts as part of analysis. Accessibility and communication preferences of living experience experts were considered in conducting the analysis to enable genuine engagement. Within the findings, verbatim quotes are provided as examples, and pseudonyms have been allocated.

Findings

A total of 13 people with dementia and 21 care partners (including 11 dyads) participated in interviews. Each participant participated in one interview (although for some participants, this was flexibly delivered over more than one session). Demographic details are summarised in Tables 1 and 2. All interviews were conducted in English. Three dyads and two additional care partners described communication considerations related to the use of other languages (mainly European and Asian languages). In addition, two carers described specific communication considerations in relation to literacy (1) and aphasia related icons use (1). Two people living with dementia participated without a care partner involved. Eight care partners participated without the person living with dementia, providing additional experiences related to people living with Alzheimer’s disease (3), and other types of dementia (Parkinson’s (2), primary progressive aphasia (1), not specified (1). Carer-reported severity of dementia of these additional people living with dementia ranged from 2 to 3. Most interviews were conducted face-to-face, with 6 occurring via telephone or video conferencing. Interviews (not including demographic and technology use data collection) generally lasted between 30 minutes and 1 hour (median 34 minutes), but extending to 90 minutes. Participants also added to sharing of interview information by sending written reflections (email and mail), sharing photographs, blogs and videos.

Table 1.

Participant Characteristics: People Living with Dementia (n = 13).

Gender	Male 10 (76.9%)
Gender	Female 3 (23.1%)
Age	70.4 (61–82) years
Type	Alzheimer’s 7 (53.8%)
	Frontotemporal dementia 2 (15.4%)
	Vascular 1 (7.7%)
	Lewy body dementia 1 (7.7%)
	Primary progressive aphasia 1 (7.7%)
	Mixed dementia 1 (7.7%)
Severity (self or family reported)	0.5 3 (23.1%)
	1 7 (53.8%)
	2 1 (7.7%)
	2.5 2 (15.4%)
Living situation	Community with family 12 (92.3%)
Living situation	Alone 1 (7.7%)
Technology independently used	None 2 (15.4%)
	HomSimple clock 1 (7.7%)e phone 9 (69.2.4%)
	Smartphone 10 (6.9%)
	Tablet 7 (53.8%)
	Computer 5 (38.5%)
	Email 6 (46.2%)
	Internet 8 (61.5%)
	Video conferencing 3 (23.1%)
	Health technology 6 (46.2%)
	Games (including brain training) 6 (46.2%)

Table 2.

Participant Characteristics: Carer Partners (n = 21).

Gender	Female 16 (76.2%)
Gender	Male 5 (23.8%)
Age	64.9 (35–81) years
Relationship	Spouse/partner (including ex) 17 (81.0%)
	Offspring 3 (14.3%)
	Friend 1 (4.8%)
Living situation	Coresident 15 (71.4%)
Living situation	Separate 6 (28.6%)

Participants included 11 dyads. Two people living with dementia participated without a care partner involved. Eight care partners participated without the person living with dementia, providing additional experiences related to people living with Alzheimer’s disease (3), and other types of dementia (Parkinson’s (2), primary progressive aphasia (1), not specified (1), carer-reported severity of dementia ranged from 2 to 3.

Fieldnotes were taken and the primary research kept a research log of key insights, questions and issues raised during data collection and analysis. These were discussed with the research team as part of analysis.

Lots of moving parts: the complex context of technology

Participants characterised technology as both being an expected part of the environment, and serving specific purposes within their life, related to dementia. The multiple factors affecting technology choice, use and outcomes were complex and highly individual. Participants described many factors that supported or restricted their technology use. These were centred around the technology users (people living with dementia, care partners and supporters), the technology itself, and the context of use including the physical, temporal and social environments. These factors were not experienced as static, rather an uncertain and shifting underpinning was experienced as people managed new and updating technologies, changes to their condition and daily fluctuations. Each participant described a different configuration of contextual supports and barriers to technology use. The shared aspects of the technology context found in this study are summarised in Figure 1 and explored in more detail below.

Motivations for engaging with technology

The motivation for technology use of people living with dementia was described by participants in terms of supporting their roles and responsibilities. Importantly, some participants noted that activities requiring technology use had begun to limit their broader participation, particularly along with changes in communication and other abilities. Graeme, living with dementia, described new difficulties with using the phone:

Graeme: I can’t use the pullup or the words.

Interviewer: You can’t find the words?

Graeme: Yep. And I slur or just mumble.

His wife, Lorraine, described strategies to support his continued involvement in meal preparation as he experienced increasing difficulty with using the microwave:

I’ve got masking tape taped over a lot of buttons, because there’s all those options that you don’t ever use, like defrost a frozen chicken, or defrost a piece of fish, …but I taped over all of that so that only the buttons that he would need to use were visible.

Technology to support roles and participation

Others indicated how technology facilitated their ongoing participation in important roles and in continuing to use their strengths, skills and abilities. This included supporting advocacy roles, social connection with family and friends, developing new skills and contributing to volunteer work. It also could support fun and wellbeing. Janice described trying technology with her husband Steven for leisure: ‘I brought him an iPad for Christmas and there was a lot of joy in it for him’.

Some noted a reduction in their technology use with the surrender of roles, including the paid work role, making technology feel less relevant to their current identity and daily life patterns. Joan noted about her husband Jack, ‘From the day he finished work, he just wouldn’t touch the computer’. Raymond, living with dementia, also described how he was not interested in newer technologies like smart speakers ‘Well, if I need to find anything I go and type in request in Google. But having a box sitting out here telling you, the traffic’s all good. I mean, I don’t need the traffic’.

Supporting care

Care partners described introducing and using technology to support the person living with dementia and to support their own caregiving role. Again, technology was seen as potentially helpful in maintaining engagement in multiple roles, and in managing the administration associated with care provision and engagement of health and support services. Sophie described increasing her availability for her father by multitasking using technology:

I have actually just recently, … bought a hands-free kit for the car because a few times I had been on a highway, either on the way down or coming home and they would be trying to call me to calm him down again. And so I bought that just a couple of weeks ago so that, if necessary, I could talk to him while I am driving.

Technology was particularly highlighted as helping with care, communication and wellbeing by care partners who lived separately from the person living with dementia. Richard described his aims of introducing technology for his father, living a few suburbs away, as his father’s dementia progressed ‘How do we just give him a quality of life at home that is simple and can you know, take him to the – to the end, let’s say, with the love and support’. Remote contributions to wellbeing included providing timely reassurance, and changing the environment to support relaxation and comfort: ‘Frank Sinatra or something like that would start playing and he would just relax, you know, and sit back’.

A differing motivation for use, raised by care partners but not generally by participants living with dementia was the use of technology to support safety. This type of technology included sensors and alarms, pendant alarms or wearables and mechanisms for getting help. Some carers also identified concerns about the safety of some technologies. Michelle described her concerns about the microwave that health professionals had recommended for her mother ‘But it was really me overriding the decision, saying’, ‘Well, it may be safe today, but it might not be tomorrow’. The impact of technology on relationships was also a focus – with some indicating it could support easier interactions and stronger connections, and others focussing on conflict related to technology use. Richard identified that reducing the work of caregiving enabled his family to focus on wellbeing and the relationships: ‘when I talk about assistive technology tools, high tech, low tech stuff, … It’s just to kind of get the job done, to focus on emotions or the relationships’.

Conflict and stress related to technology

Others noted that the potential stress and conflict related to technology use could amplify tensions in difficult contexts and at difficult times. Heated exchanges, removal of technologies, avoidance of locations and broken devices were described in relation to conflict. Participants also noted the technology division of labour in a household or relationship could impact technology use and could shift with changes related to dementia. Mary described her partner’s new need for technology support ‘He was very, very good with computers … and he’s forgetting what to do and so, he becomes very frustrated with that’.

A technology identity

An important aspect of meaning-making with technology raised by both people living with dementia and care partners was the apparent impact of a technology identity. People’s life history with technology, their mastery and their preferences appeared to support the formation of an identity in relation to technology usage. People’s identification (and others’ perceptions of them) as being – or not being – a technology person seemed to influence the meaning and value of taking time to master and use technology, even when it got more difficult. Robert described ‘Well, I worked in IT a lot of my life so I’m familiar with that aspect’. People who had an occupational history with technology or who liked to try new things or liked to tinker, were more likely to find the work and effort to keep using technology as meaningful. The shift towards needing help with technology for someone with a central technology identity could be emotionally difficult: Yvette described how challenging it was to need to repeatedly ask for help with technology ‘I always was the top of the class or sort of fairly bright at working things out. And I know it’s gone down, but yeah, you sort of think, you know, I think people think – I’m not stupid, but I appear stupid’. Others, who did not see themselves as a ‘tech person’, may still use technology, but were less likely to attribute the time and effort as meaningful and valuable. Care partners who seemed to describe a technology identity seemed more likely to look towards and to use technology in attaining a feeling of mastery in the caregiving role. Michelle described her interest in caregiving technology ‘I have lots of ideas. That’s pretty much what I’m passionate about’. In contrast, Jane, described ‘I am not a technology person. I have taught myself to use an iPhone, but sometimes I think that’s the curse of society’. Importantly, when people living with dementia were not seen as being technology people by others, they may not be offered or supported to use technology, even when it may be wanted or helpful.

Technology characteristics and infrastructure

The technology itself, and the infrastructure supporting its use appeared to play a part in technology choices and use. Most participants described abandoning some technologies that were difficult to use, or unappealing in some way. Most people described using mainstream, rather than specialised dementia products, with enthusiastic descriptions of technology that was easy to use or that served an important purpose. Gordon described finally finding a smartphone that made sense to him:

“I’ve got what I call a dementia phone. It’s the best phone for anyone with dementia. It’s the only phone that they should have. I’ve had iPhones, I’ve had everything. I’ve had the Samsung phones. I’ve had everything. But I have a dementia phone now. Have you ever heard of a dementia phone?

Absolutely brilliant, they are. It’s called a Google Pixel. It’s the new phone. Google Pixel. it’s so easy.”

Some technologies were not used due to labelling, stigma or concern about privacy with the way they worked. David, living with dementia described multiple concerns about location tracking wearables ‘I don’t like being labelled’.

There was not a consistent description of a device or operating system that was regarded as acceptable and easy to use for all participants. However, some actions of technologies were often described as helpful. These were technologies that enabled – in ways that made sense to users – connection to others, access to valued activities, and reminders and organisers that helped facilitate attendance, participation and completion of necessary daily tasks. Simple interfaces that could be used independently were more generally successful: Janice described her husband finding a tablet more usable than other options ‘he understands how to swipe to look at pictures…He could look because they’re larger; they’re not like on an iPhone. Instead of opening the computer up and having to find documents, pictures, such and such, a holiday, it’s on the iPad and you can just swipe through it’. Other participants described that tablets were difficult to start or finish activities on. Less commonly, some people described being supported by devices to help with wayfinding, including Google maps on a smartphone. The most common specialised technology described was a simple clock/calendar which provided a clear statement of the day and date. It appeared to assist with readability, but not always on the ability to apply the information further. Michelle described:

The one that I got Mum has four lines on it. … So it orients the time of day, and it’ll say, “Today is Tuesday, October 31.” Then it has the time, and then it says whether it’s morning, afternoon or evening. But that has been the most significant, I guess, improvement or helpful item so far to communication. But it’s not foolproof.

…So she quite proudly will tell people on the phone what day and date it is now. Whereas in the past, she had no way of knowing. … I’ve got one of those large whiteboard calendars from Officeworks that sits on the fridge. And I write down her schedule; daily pick-ups and things like that. And that doesn’t work so well, because even though Mum can see what day it is on the clock, she will still call me and say that somebody didn’t turn up today, even though it’s the wrong day. So she is not able to link the two together.”

Contexts of use: physical, social, routines

The context of the technology use seemed very important. Participants described a series of challenging contexts related to living with dementia where technology use might be particularly valuable. These included busy social situations, unfamiliar contexts (e.g. a hospital visit) and time spent alone. Having funding, and information about technologies that may be helpful now or in the future could be an essential part of a technology supportive environment. The physical location of technology needed to be chosen in a way that made sense to how it would be used, with reminders and orientation supports being placed either near to the activity or near a place where the person often checked (e.g. the refrigerator or phone). As well as physical placement, embedding assistive technologies into the daily routine in a meaningful way was seen as supportive of learning and ongoing use. Having dedicated time to learn and optimising the time of day for use may be beneficial. Joyce described ‘In the morning I find it easier to do things and listen. But in the afternoon I'm usually tired and then I find it hard to concentrate’.

Some participants noted that losing highly portable technology could be stressful and a source of conflict. In addition, the ongoing use of technology could be supported by aspects of the social environment (e.g. tech support, informal assistance) and physical environment (e.g. an environment where technology wouldn’t be moved or used by others). Sophie described that her father was still using his computer for complex tasks, but required support to find and charge it.

“He can still use his laptop but things like the charging and remembering how to charge it. It’s not the keyboards or the programs or that kind of thing. … It’s those funny little housekeeping aspects like using the charger, using the wrong thing, not realising that the problem is it is dead because it has run out of battery. … He can still use Excel but his problem about using it would be…remembering that he could use it on the laptop, getting the laptop charged up”.

Shifting foundations of technology use

While many participants described actions towards keeping things in their life stable, the lack of stability in technology use was particularly noted. Participants described the shifting foundations of technology use while living with dementia. The impact of dementia on their daily lives, and on their ability to learn and use technologies was noted as challenging. People described daily fluctuations which meant that sometimes effective or accessible solutions wouldn’t work for them. Anticipated and actual degeneration due to dementia, was described by participants, with the aim of getting technology timing right. Many participants indicated that there might be optimal timing within the condition to learn to use technology (i.e. while learning was less effortful), with its familiarity then allowing longer ongoing use. Joan reflected on her husband’s experiences with technology:

“I think with technology, it’s changing so fast it’s just really hard for anyone to – it’s hard enough for me to keep up with, it’s much harder for him because he can’t remember so I can show him, I can show him over and over and over and he doesn’t even have the interest in it anyway. But … the things that he does are the things that he’s done for years and they’re staying in his memory more than newer things that are happening. So I think one of the secrets, I think, would be to start making the changes really early for what you want later on down the track.”

Technology itself added to the shifting foundations. Today’s technologies did not feel comfortable and familiar to some people living with dementia, and changes and regular updates seemed to exacerbate the experience of the feeling of instability with technology. Daniel described his wife Elizabeth’s difficulties in finding emails: I don't think that’s entirely her fault, I think it's the way that the emails are - when they revise their programs how they now have these big strings of emails that all get attached to each other and they're on a string and it's like, ‘Where is that email? I know it was there’.

How the moving parts work for different people

As examples of how the many aspects affecting technology use could interact to support or hinder technology use, the different configurations (or set of ‘moving parts’) for David and George can be explored. Both lived in the community with a partner, and both described active participation in valued life roles. David was living with frontotemporal dementia. He described a technology identity related to both his work roles in earlier life, and his past and current interests. He was responsible for technology tasks in the home, and often in his group of friends. His solutions for continuing to participate in meaningful roles included technology solutions he had developed himself, low-tech solutions (paper, people) ‘I’m just using one of my other bits of technology, it’s called a pen’, and he had a focus preparing for his future needs. He identified aspects of technology design that he found problematic in use (touchscreens, small screens, hidden data collection), and noted that there were some issues with the internet in his regional area, as well as with access to information and support for specialised technologies. He described finding it frustrating that it is always assumed that people living with dementia are not the ones in charge of technology in the home. He expressed irritation with frequent software updates, as well as fluctuating ability with managing some technologies – which meant he had to walk away. He embedded his low- and high-tech solutions within his busy routine of community engagements and within key parts of his home. He also indicated that technology development has not taken a broad view of people living with dementia ‘their concept of a person with dementia involved someone in a care facility’.

George was living with Alzheimer’s disease. While he described using technology in his working life, he rarely used it in his current life. He had previously managed the technology tasks for the household, and the transition to his wife managing it was challenging ‘George’s forgotten all his passwords, and I’m trying to find them, because he’s the administrator of our Wi-Fi, I’m trying to find that now to make me, and I don’t know how to do that’. (Linda, George’s wife). George’s current strategies to support his memory and functioning tended to include written notes, printed maps and reminders from his wife ‘if Linda tells me to do something, I’ve got to write a note on it. If I turn something on or do something for her, or if we’ve got to go out somewhere, a bit of a warning’. Linda, his wife, noted that single purpose and simpler devices would be required ‘I think a simplified version of an electronic calendar basically. I don’t think it needs much else, really. The problem is these have become too complex because they do too many things’. She noted that while he still participated in community activities and ‘cryptic crosswords, sudoku, all of those’ – he did not wish to learn new technologies and struggled with the updates and changes to existing ones. They had not encountered any useful information or support with regards to technology use, and aimed to reduce conflict and optimise participation by doing things at times and in locations that were not busy and noisy, and when George was not fatigued.

A technology cycle: processes in the use and non-use of technology

The dynamic and often effortful nature of introducing and continuing to use technology was described by most participants. Technologies could be described as being currently in use, currently in non-use (i.e. no longer in use after attempts at use or introduction), or in pre-use (where the technology was possible but not yet in use). These are depicted in Figure 2. While most participants indicated that they were aware that there were a lot of technologies in existence, most discussed difficulties in finding information about what was available, and what might be helpful as well as what was likely to be feasible to use. Participants also identified a lack of formal or informal supports for the processes of choosing, accessing and paying for technologies. Inability to access these needed supports could result in people not knowing about, or being able to use technologies that could support them. If the supports were available, the new technology may move into a cycle of actions to support use.

From pre-use to use

Participants described discussions and negotiations that may take place before a decision to use technology. In some cases, this may be education and discussion about what the technology might do and why it might be needed. Some participants described bargaining or trading off in deciding to use specific technologies. They may consider a reduction in privacy for enhanced feelings of safety or might have agreed to introduce technology with accepting a service, or continuing to live independently. Richard described the progress of considering and negotiating about technologies with his parents:

Here are the challenges….what are your solutions? What are your options? And which is the best one and it’s not going to be the most happy one, where everyone will be happy, but is it a resource issue? Is it a safety issue? … what is the best of those options? And that’s what I always say. Pick the best one.

…Where you come to an agreement saying if we have three incidences [of getting lost or being in danger] or whatever number you pick. Then that’s a sign, Dad, we need to protect you, right?

Use: negotiation, agreement, decisions

Some reported wanting to try technologies but supporters were unsure if it was safe or suitable. Yvette, living with dementia, described her husband’s concerns about her using a smartphone: ‘I know William would say, take my mobile phone, smartphone off me. But then again, is that really a bad thing, if I’m doing it? And I’m sort of saying, sometimes you need relaxation and things like that’. Often family members were involved in the process of negotiating and deciding to use technologies, with peers and health professionals also occasionally involved. Kim talked about her misgivings with technology being recommended for her husband Matthew:

“I don’t know that – everyone talks about assist[ive] technology and I don’t – I just – whenever I hear the word “technology” associated with Matthew I just don’t think the two go together. It’s been a huge source of frustration to him and to me because of having to fix up everything that gets undone and has to be put back together again. So he’s doing less and less and less and less in all sorts of ways, which is I’m sure not good for him but it’s just – it’s the way it has to be.”

Use: introduction, learning, support

Participants described processes and actions related to introducing, learning and getting accustomed to new technologies. Raymond described his new process of learning:

“Well, I can’t have too many inputs. So it’s getting to the stage where I’m going to have to do them in parallel. Do all that and then wait and do the others… And that’s why I have trouble learning new things but I’ll sit down there and logically go through it - methodically go through it and try and work my way through. If I have to ask, I have to ask, but years ago I never had to.

Increasing human and environmental supports (e.g. laminated instructions, sticky notes) were often required initially in learning to use new technologies. These may be used less over time.

Use: personalising, maintaining, troubleshooting, changes

A process of personalising or setting up the technology to suit the user occurred after initial familiarisation. This involved scaffolding aspects of use, applying the use to meaningful activities or roles, and embedding it within routines and environmental locations that were helpful. Even when people successfully used the technology within meaningful activities and independently, maintaining the use was challenging.

Small ongoing maintenance requirements could derail the use of technology, such as charging, software updates, managing errors or difficulties in use. External support was often be required to manage ongoing maintenance, which was particularly difficult in care environments. Conflict related to maintaining technology use was noted by about half of participants.

The ongoing use of technology almost always involved encountering changes. Unusually these was sometimes initiated by the person living with dementia and was enacted to improve technology use or enable new activities. David described ‘12 months ago I bought a Windows phone which syncs with my Outlook calendar and I now use that all the time…But I find that, now, a much easier way of managing time’. Most commonly these related to either new changes in abilities related to dementia, external changes to the technology or trying to find a technology that worked. Encountering changes to previously successful use of technology could result in non-use. Updates to apps/software or needing to replace hardware were the most commonly described technology-related changes encountered, and these required resources, support and sometimes restarting the technology cycle.

From use to non-use

The non-use of technology or abandonment of a considered or previously used technology could occur for several reasons. Often the technology was unable to be used in an ongoing way. Using the technology may have been recognised as causing stress and conflict, or there was concern about harm from the technology use. Jill described her husband’s difficulties with managing phones, which had previously been a regular technology embedded in his roles:

“He often says to me I don’t want to have a phone. And I think that’s because - he says to me that he doesn’t like talking on the phone because he thinks that people believe that he’s drunk, because he’s slurring and he’s trying to find words. So therefore he hates talking on the phone to strangers. He often doesn’t hear the phone ringing. He often forgets his phone. So that brings with it more stress. Because when he forgets his phone, he’s looking for it. But, yeah, he gets really agitated when people are calling him”.

For some participants, the context did not support technology use – which could be a lack of specialist or regular human support for technology use, limited technology infrastructure or a technology not being a regular part of the social environment. Available technology may not support the way a person wished to undertake their activities. Finally, non-use could represent a conscious choice. It could be that the person was not comfortable with the nature of the technology available, found the effort required for ongoing usage was too high for the benefit or found a preferred option. Elizabeth described abandoning an online calendar for a paper one ‘I got tired of having to log in every time I wanted to see what was happening’. In these cases, non-use might be met with feelings of relief and heightened feelings of mastery. However, most instances of non-use resulted in unmet needs. Not being able to move from pre-use into use, because of a lack of supports, or having to abandon technology in use, because of being unsuccessful in navigating the steps in the use cycle could result in people feeling upset, isolated and unable to access essentials. The assumed ability of everyone to navigate and use technologies required for everyday life (e.g. telephones, banking technologies, websites for information), meant for some people that even getting the supports to use the technologies was impossible. For some family members, it meant a very long process of trying out technology after technology, which could leave all involved frustrated and upset. Michelle described ‘She’s probably had about 15 mobile phones, but yeah, they’ve all been unsuccessful, in terms of her figuring them out. And a definite no to a smartphone’.

Perspectives on future technology use

Despite recognition of the effort and actions required to keep technology in use, most participants indicated that they felt hopeful about future technology. Some participants identified technologies that they felt may be useful with the progression of dementia. Janice and her husband reflected on pendant alarms ‘We haven’t got to the bracelet or the necklace to press the button as yet, but it is something we could have in the future’. However, there was a strong indication that future technologies should focus on being helpful, and respect the values, ability and learning requirements of users. Importantly there was a concern that the introduction of future technology may serve to disrupt the person’s context in an unwanted way - with concern expressed about creepy, enforced and surveilling technologies. Elizabeth noted ‘Not a robot…because it’s so impersonal. Impersonal and no emotion, they’ve got no emotions’. Her husband described an expectation that acceptability (or acceptance of inevitability) may change for future generations ‘Probably our children’s generation, the Gen-X generation, they will probably cope well with robots. But us Baby Boomers it’s like, no I don’t want a robot. I want a real person’.

Most participants described an openness to consider future technologies but emphasised that the technology needed to be helpful and easy to use, as well as consider the support required for learning and use. Yvette described

But once again, the technology is good, but knowing how to use it… I don’t know if they can invent simpler apps or programs or something to be able to – but that’s what I really need.

Discussion

This study indicated the complexity and individual nature of technology within the lives of people living with dementia and their care partners. Importantly, the roles of people, the technology itself, and the context were shown to be underpinned by an unstable foundation of constant change, and a cycle of ongoing effort to keep using technology. Similarly to studies in other contexts (e.g. Lorenz et al., 2019), participants reported primarily using mainstream technologies. Most had also not engaged with formal assistive technology prescription or support services, similarly to the findings in the ATTILA study (Forsyth et al., 2019).

Participants described a range of purposes or potential purposes of technologies. Care partners tended to describe safety as a priority, whereas participants living with dementia focused more on role and activity participation, as well as connection and leisure. This differing priority is consistent with practice approaches of health professionals reported in the ATTILA study (Forsyth et al., 2019), which also indicated the lack of translation of assistive technology recommendations into use. Our findings contribute to a growing recognition of the need to consider individualised priorities. Although safety is clearly important and contributes to delaying the need for formal care (Lorenz et al., 2019), considering users’ values and perceptions of their needs, and their context affects willingness to use recommended technologies.

Within our study, the effort required for technology use and the willingness to engage with it may relate to a technology identity. The personal meaning of the interaction with technology, as well as the roles it enables can support uptake and use. A study conducted in the UK about assistive technology use of people with dementia and family carers indicated that mainstream technologies and assistive technology use were mainly driven by carers, and mainly directly benefited carers/the care role (Gibson et al., 2016). They identified a lack of information and formal support, as identified in our study. In addition to this, our study indicated the potential negative impact on relationships and ongoing conflict in managing technology usage. This may necessitate relationship or external technology supports.

Goodall and colleagues (2020) investigated the potential role of technology in supporting meaningful activity engagement for people living with dementia via a systematic review. They indicated that a range of technologies could be used to facilitate activity participation, but individualisation of the approach and assistance seemed important. Our research supports their finding, with participants describing a wide range of ways of engaging with technology that keeps participation possible. Our study and others (Arntzen et al., 2016; Gibson et al., 2016; Olsson et al., 2012) indicate that there need to be a person-centred, context-aware and flexible approaches to information, recommendation and use of technology. As the systematic review suggests, larger, more robust studies with outcomes measures that are consistent (and reflect users’ values or purpose of engagement) are required. Our study also indicated the effort that is required to keep using technology within shifting processes. Future technology development could facilitate cognitive accessibility and ease of use in a meaningful way. In addition, person-centred models of development and support could ensure people living with dementia are not excluded from meaningful technology use and can realise the potential benefits. This has been described as a capability approach (Kenigsberg et al., 2019), a person-centred approach (Lazar et al., 2017), and an approach to managing barriers to translation (Forsyth et al., 2019). The current study indicates that a flexible configuration of factors may need to be considered in recommending, measuring outcomes and supporting learning and use of technology.

Technology practice and research needs to move away from the device, to centre on the person, their support networks and the context of use, as well as the purpose of use. Further, the timeframe considered in technology research, and technology service provision (and related funding) may need expansion, given the processes and issues evolving over time described by participants. Our study indicates that effort and assistance may be required in an ongoing way, given the changeable nature of dementia and technologies. Consistent with many studies (e.g. Brankaert & Kenning, 2020; Ienca et al., 2017; Moyle, 2019), our study also indicated that technologies, both specialised and everyday need to be more usable for this group, and that critical engagement and human-centred and participatory design approaches may be important for advancing this goal (Lazar et al., 2017).

Limitations and future directions

This study involved flexible interviewing with a relatively small sample of community-dwelling people living with dementia and care partners. While recruitment aimed for diversity, we engaged more men than women, more spousal care partners than other types, and more people in metropolitan areas. We also heard from more people who regularly use technology. It is possible that technology support may also be a different type of caregiving (technology caregiving), not always provided by the primary care partner, and future research may need to explore the dynamics of this changing technology division of labour and roles. Ethnicity was not formally documented or included as an aspect in purposive sampling and ethnicity, culture, language and context may be important considerations in technology development and use.

Future studies may expand the range of participants and contexts of use, particularly considering culture, languages and ethnicities, and including international and rural contexts. It also may measure some of the outcomes and challenges described in this study over time to help build the understanding of the needs related to ongoing technology use. The findings from this study may be applied in evaluating or developing technologies and related support services. This study indicated, as others have (e.g. Hung et al., 2019), the high value in including living experience experts in the research teams in conducting technology research. Accessible approaches that enable genuine engagement and shared learning between all members of the research team should be reported to support wider adoption.

Conclusion

Technology is an important, and often challenging part of life for people living with dementia and their care partners. Participants describe that it can serve important purposes in engagement in meaningful roles and activities, continued connection, wellbeing, safety and independence. The use of technology is affected by the complex and individual context where people live and participate, as well as identity, people and the technology itself. The use of technology feels as if it is underpinned by a constantly changing foundation. A cycle of steps and processes that people undergo to engage with technology and keep using it. Supports and future technology design should consider the complex and personal nature of technology for people living with dementia and care partners – to prevent exclusion and ensure the potential benefits.

Footnotes

Acknowledgements

We gratefully acknowledge the contributions of the participants in this project, the support from dementia and community groups in conducting the study, and the wider Human Centred Computing group at the School of Information Technology and Electrical Engineering. We thank Tiffany Linke (tif.image Design) for making the diagrams pretty. We acknowledge the contribution of research assistants Amanda Gellatly and Shelley Allen.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded through the Australian Research Council, Centre of Excellence for the Dynamics of Language (Project ID: CE140100041)

ORCID iDs

Jacki Liddle

Daniel Angus

Janet Wiles

Jacki Liddle is an occupational therapist and researcher at the University of Queensland researching quality of life, participation and life transitions. She uses innovative technology, along with qualitative, quantitative, and participatory research methods to investigate the needs and experiences of people living with neurological conditions (dementia, Parkinson’s disease, stroke), older people and their caregivers, and create approaches to improve outcomes. She is currently part of a multi-disciplinary team co-designing technology with people living with dementia and their care partners to support communication.

Peter Worthy is an interaction designer and research fellow at the University of Queensland. His research interests extend across design theory and practice, human-computer interaction and user experience, and the application of the theory of these domains into practical and novel contexts, as well as the ethics of design and development of technology. He seeks to ensure that interactive technology is truly designed for people so that it supports what is important to them within the specific context that they are using that technology. He is working in codesign with people living with dementia, and people with aphasia.

Dennis Frost was born in country NSW, Australia in the mid 1950’s and is old enough to have witnessed Neil Armstrong Step onto The Moon in 1969 but young enough to have avoided conscription. Working in education, Petroleum Geophysics, IT support and training and had run his own IT business for over 20 years. He was diagnosed with FrontoTemporal Dementia – at age 59. In 2014 he became involved in the Dementia Friendly Kiama Pilot and was elected chair of the Advisory Group. This has awoken the sleeper within. He was recently elected co-chair of Dementia Australia’s Advisory Committee. He continues to be involved in several research projects, both in an advisory role and as a participant. He is an active advocate for all with a dementia.

Eileen Taylor is a retired social worker with clinical rehabilitation experience primarily with children. She is a living expert in dementia having been diagnosed at age 59 with Younger Onset Alzheimer’s Disease in 2010. Since her diagnosis, Eileen has actively been engaged in advocacy and dementia research as a research participant, (clinical and social) and a research co-investigator in several dementia related research projects. Including the International STRiDE Project. She has served in senior positions with key dementia organisations - Dementia Alliance International, and Dementia Australia and presented papers nationally and internationally at conferences and workshops.

Dubhglas (Dubhg) Taylor is a retired social worker with a clinical psychotherapeutic background. Currently a part-time sessional lecturer with Christian Heritage College, Brisbane lecturing in social science at under-graduate and post-graduate levels. He is the care partner to his wife Eileen who lives with Alzheimer’s Disease. This has also led him to be a dementia advocate / activist, dementia research participant, and research co-investigator in several dementia related research projects. Including the International STRiDE Project led by the LSE. He, along with Eileen have presented papers nationally and internationally at conferences and workshops.

Ron Beleno is an active advocate for dementia, caregiving, aging, and research communities. Being a caregiver to his father who lived with Alzheimer’s for 10+ years to age in place at home until January 2018, Ron utilized technology, community, and access to research to support his family’s life to live well and as best as possible. He is an active member, advisor, and mentor to numerous organisations and educational institutions such as AGE-WELL NCE, Centre for Aging and Brain Health Innovation (CABHI) at Baycrest, City of Toronto’s Seniors Strategy, The Centre for Addiction and Mental Health (CAMH), SE Health, and the Translational Research Program (TRP) at the University of Toronto’s Faculty of Medicine.

Prof. Daniel Angus is Professor of Digital Communication in the School of Communication, and leader of the Computational Communication and Culture program in QUT’s Digital Media Research Centre. His research focuses on the development and application of visual computational analysis methods in communication and media studies, with a specific focus on conversation and social media data. His novel computational methods have improved our understanding of the nature of communication in medical consultations, conversations in aged care settings, television broadcast, social media, and newspaper reporting.

Janet Wiles is a Professor in the Human Centred Computing discipline at the University of Queensland and leads the Future Technologies Thread of the ARC Centre of Excellence for the Dynamics of Language (CoEDL). Her multi-disciplinary team researches language technologies to support people living with dementia and their care partners; new tools to enable Indigenous communities to develop their own speech recognition systems; and social robots for applications in health, education, and neuroscience. She received her PhD in computer science from the University of Sydney, and completed a postdoctoral fellowship in psychology.

Anthony Angwin is a speech pathologist and an associate professor at the University of Queensland, and a chief investigator with the ARC Centre of Excellence for the Dynamics of Language. His research interests are focussed upon the co-design of technology to support communication for people living with dementia, as well as technology to facilitate language recovery in people with aphasia. He also focuses on research using psycholinguistic and neuroimaging methodologies to investigate language processing and word learning in healthy adults and people living with neurogenic communication disorders.

Florence Project Living Experience Expert Reference Group. The Florence Project is guided by people living with dementia and regular conversational partners of people living with dementia including care partners and other family members and friends. Members of the group are involved in consultation, research design and conduct, analysis, meaning making, mutual skill building, research dissemination and teaching. The membership of and engagement with the group is flexible and accessible. Members of the reference group who contribute to authorship, and wish to be named, are also named as authors individually.

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