Abstract
Objectives
Smartphone and tablet devices appear to offer some benefits for enhancing the quality of life of people living with dementia, especially enabling them to stay independent and socially engaged in the early stages of the disease. However, there remains a need to understand the ways that these devices may enhance the lived experience of people living with dementia, mild cognitive impairment, and their caregivers.
Methods
We interviewed 29 people living with dementia, mild cognitive impairment, and their caregivers to explore their experiences of and attitudes towards smartphones and tablets.
Results
We generated three main themes: smart devices in practice as a person living with cognitive impairment; living in a digital world, and smart devices as appropriate and easily accessible support for everyday living. Smart devices were seen as valuable, versatile tools to complete essential and meaningful activities, and as necessary devices to participate in modern life. There was a strong desire for greater support to learn to use smart devices to facilitate living well with cognitive impairment.
Conclusion
The lived experience of people living with dementia and mild cognitive impairment emphasises the central role of smart devices in their lives, and the need for research to move beyond rehearsal of what is needed to co-production and evaluation of smart technology-based educational interventions.
Introduction and background
At present, there are over 55 million people worldwide living with dementia, and this number is expected to rise to 139 million by 2050 (World Health Organisation, 2022). There is currently no effective pharmacological treatment for dementia (Tisher & Salardini, Citation2019) but increasing interest in non-pharmacological approaches that optimise the physical health, cognition, activity, and wellbeing of people living with dementia (PlwD). Smartphone and tablet devices appear to offer some benefits for enhancing the quality of life of people living with dementia, especially enabling them to stay independent and socially engaged in the early phases of the disease (Thorpe et al., Citation2016).
Most older adults now own smartphones (Pew Research Center, Citation2021) and show growing interest in using smart technology devices to manage their health (Menéndez Álvarez Dardet et al., Citation2020; Pew Research Center, Citation2014). Smartphones are part of the everyday lives of today’s older adults and will only become more important as the population ages and the older adult demographic (and population of people living with dementia) grows to include people for whom smartphones and tablets have been an integral part of their lives for decades. There is a greater need to understand the ways that these digital devices may enhance the lived experience of people living with cognitive impairment (PlwCI). This has become more pressing during the COVID-19 pandemic when digitally-mediated interactions became a necessity for many and brought further attention to the role of digital technology in dementia care (Beaunoyer et al., Citation2020; Cuffaro et al., Citation2020; Doraiswamy et al., Citation2020; Neal et al., Citation2021).
Recent qualitative research has looked at the use of information and communication technology by PlwCI and their caregivers (Blok et al., Citation2020; Talbot & Briggs, Citation2022; Wójcik et al., Citation2021), however no primary studies have specifically explored the use of smartphone and tablet devices by PlwCI and caregivers in their everyday life. Qualitative data from a systematic review of smart device use by older adults (Wilson et al., Citation2022) showed that smartphones and tablets are seen by PlwCI as acceptable, enjoyable, and non-stigmatising alternatives to conventional assistive technologies, though current use of smart devices is hindered by the digital literacy of older people and a lack of input from researchers and clinicians. Quantitative data provided modest evidence that incorporating smartphone and tablet use into one’s routine could lead to improvements in cognition and memory (Wilson et al., Citation2022).
Much of the current evidence on smartphone and tablet use by PlwCI derives from smartphone and tablet training interventions (Wilson et al., Citation2022) and less is known about smartphone and tablet use of a PlwCI not involved in a training intervention. Additionally, most studies have so far ignored or underemphasised working with PlwCI to build on their lived experiences, and ignored the potential of self-initiated strategies for learning and problem-solving (Rosenberg & Nygard, Citation2017). Focusing on lived experience and how PlwCI spontaneously use their smart devices is important as spontaneous use can be predictive of how effective an aid will be (Sohlberg & Mateer, Citation2001). Therefore, we conducted an interview study to explore the patterns of everyday smartphone and tablet use by PlwCI and caregivers, and to explore the opportunities and challenges of these devices in these populations.
Method
Participants and recruitment
We recruited PlwCI due to dementia or MCI and/or caregivers for PlwCI living in the UK. Participants did not have to be expert users of smartphones or tablet computers but some experience with smartphones and/or tablets was required. Where possible, PlwCI and caregivers were interviewed as a dyad to aid or facilitate conversation, particularly where the PlwCI may experience communication difficulties.
Recruitment for the interview study was conducted using convenience sampling via social media (Twitter), national dementia organisations (Join Dementia Research), local dementia support networks, and via word of mouth. The aim was to recruit participants from across the UK, although participants were mostly located in the North of England.
Materials
The purpose of the interview was to understand how and why people living with cognitive impairment use smart devices in their everyday lives—both in general and to support their cognition and memory. We drew on the interview guide used by Gustavsson et al. (Citation2018) to describe participants’ experiences using smartphones and tablets before and after the onset of cognitive impairment and their experiences with healthcare and support services following their diagnosis. The work of Vaportzis et al. (Citation2017) informed questions on the advantages and disadvantages of traditional assistive technologies, smartphones, and tablets, and participants’ interest in smartphones and tablets to assist with everyday living, improve mental abilities, and improve health and wellbeing. We adapted the interview schedule (Supplementary File 1) iteratively to allow participants to voice their opinions on important matters that might not have been initially included in the interview schedule. For example, unanticipated topics, such as the provision of support to learn to use smart technology, were repeatedly raised in early interviews, thus we explicitly asked about this topic in later interviews.
Procedure
The interviews took place between March 2021 and November 2021. Interviews were conducted via telephone or videoconferencing software depending on participants’ preference. The interviews ranged in length from approximately 50 to 90 min, averaging approximately 60 min.
Interview data were transcribed verbatim and anonymised and participants were assigned pseudonyms. The transcripts were imported into NVivo 12 and analysed using thematic analysis with regard to the main analytical questions: how do PlwCI and caregivers use smart devices, and what are the benefits of and barriers to smart device use? The thematic analysis followed the steps identified by Braun and Clarke (Citation2006) and was conducted by experienced qualitative researchers. We used a grounded theory approach and viewed smartphone and tablet use through a phenomenological lens. This approach allowed us to examine participants’ lived experiences from their point of view rather than through predetermined theoretical understandings (Smith & Nizza, Citation2022).
SW conducted the initial analysis, coding a portion of the dataset in Nvivo using inductive reasoning, and then collating and examining the initial codes to identify themes. PB reviewed the initial themes and the analysis was discussed with suggestions on how to interpret the data. SW then coded the remaining dataset using a hybrid process of inductive and deductive thematic analysis, re-reading and revising codes and themes iteratively. The revised analysis was discussed and further revisions were made. Themes were defined and provided with narrative descriptions supported by quotes from the data (minor edits were made to some excerpts to enhance readability). Throughout the analysis, we kept detailed notes to aid the analysis and provide an audit trail that bolsters the trustworthiness of our findings (Nowell et al., Citation2017).
Ethics
Ethical approval was obtained from the University of Liverpool (reference: 8168). Written consent was obtained prior to contacting the interview. In accordance with the Mental Capacity Act (Department of Health, Citation2005), participants were assumed to have capacity unless they demonstrated otherwise. Capacity was assessed prior to each interview through discussion with the participants to determine their ability to understand and retain information about the research and to reach a clear decision to participate. Participants’ prior written consent, including consent to the interviews being audio-recorded, was re-affirmed verbally at the start of the interview. If there was any doubt about capacity, consent would not be taken, however, all participants demonstrated that they had capacity.
Following the interviews, all participants were provided with contact details for Alzheimer’s Society support lines and a link to find local support. To our knowledge, no participants felt this necessary.
Results
A total of 29 participants took part in the interview study: 17 PlwD, 2 people living with MCI (PlwMCI), and 10 caregivers of PlwD. Four interviews involved a dyad of a PlwD and a caregiver while the remainder of the interviews consisted of the interviewer and one interviewee. See for participant information.
Table 1. Participant information.
All participants owned a smartphone and/or tablet computer and most had done so for years prior to the onset of cognitive impairment. They had acquired these devices primarily for communication, but participants described how the use of their devices had developed following their symptom onset. Several participants owned other smart technology devices, such as e-readers, smart speakers or smart video displays, and spoke of the benefits and challenges they experienced with these devices.
The main themes and sub-themes can be found in . A summary infographic produced in collaboration with PlwCI is provided in Supplementary Figure 2.
Table 2. Themes and sub-themes.
These themes speak to the central role of smart devices in the lives of PlwCI and their caregivers, the versatility of smart devices to support PlwCI in completing essential and meaningful activities, the necessity of smart devices to participate in modern life, the obstacles faced by PlwCI when using smart devices, and the opportunities that smart devices may have to enable PlwCI to live well for longer.
Smart devices in practice as a person living with cognitive impairment
All the participants owned at least one smart device, and often owned multiple linked devices throughout their home. PlwCI used their smartphones and tablets for communication, entertainment, hobbies, navigation, and to assist activities of daily living such as shopping and managing finances. Some PlwCI made adjustments to accommodate the effects of their cognitive impairment—such as sharing a smart device with a caregiver or communicating via group chats so they could be prompted to respond—but most encountered no significant difficulties using their smartphone or tablet.
PlwCI valued the ability to quickly search for information to fill in gaps in their knowledge or memory and avoid the frustration, particularly where the subject was something they thought they should intuitively know.
‘I get a bit frustrated if I can’t remember something so, if I can, I get rid of the frustration by looking it up.’ Deborah, PlwMCI.
PlwCI reported extensive use of alarms, calendars, and reminders. Alarms and reminders could remind participants of specific scheduled events in their calendar or of routine daily tasks for which it would be beneficial to have a reminder. The use of smart devices for reminders was an everyday occurrence and a normal part of the routines of PlwCI. PlwCI often scheduled multiple reminders throughout the day.
‘I’ve got an iPhone and I rely on that [for] appointments and events and so on, and I also use the timer if I switch something on which needs to be switched off in two hours’ time then I will forget so I put a timer on the iPhone and that makes sure I don’t forget.’ Richard, PlwD.
‘The biggest thing that I use in my phone is alarms to remind me to do things at certain times of the day, and I can have six or seven alarms going in a day. […] I have all my calendars, lists I keep in there, alarms. Alarms are probably the thing I use the most, just to take your medication, you know, do this, do that.’ Mark, PlwD.
One PlwCI described reminders as ‘invaluable’ and were regarded as the main benefit they derived from their smartphone use.
PlwCI felt that using a smart device acted as a cognitively stimulating activity. It was important for PlwCI to feel that they were keeping their mind active. PlwCI used their smart devices to play games and puzzles for entertainment and cognitive stimulation. PlwCI considered these applications (apps) useful to ‘warm up’ their brains and practice cognitive skills that they felt needed to be reinforced, such as concentration. PlwCI considered that using their smart devices for cognitive stimulation could benefit their cognition at a fundamental level.
‘I don’t think any games are going to stop the process, but I think they help the remaining healthy brain to find ways and to keep flexible and to keep making the new connections.’ Robert, PlwD.
Although PlwCI enjoyed game and puzzle apps, most were sceptical about the efficacy of brain-training apps to improve their cognitive skills or protect their cognitive function. Nevertheless, PlwCI who had tried brain-training apps continued to do so in the hopes that these apps could have some protective effects.
‘I think there’s been some research done saying that that doesn’t necessarily help people with cognition but hey ho, [it] keeps my mind active.’ Margaret, PlwMCI.
Caregivers valued being able to contact and locate their loved one to ensure their safety. Caregivers also commented on the potential for smartphones and tablets to provide reminiscence. In addition to reviewing personal photos and videos, family and friends worldwide can easily share up-to-date photos and videos via multimedia messaging services. The ability to stream films and music makes smart devices ideal facilitators of reminiscence through these mediums too.
‘The tablet, laptop and my phone carry all the photographs I’ve done since 2014 and beyond, all my childhood and everything else, because that’s my memory bank.’ John, PlwD.
‘Watching videos or a movie on demand on a gadget can be really good and therapeutic.’ Ann, caregiver.
Finally, both PlwCI and caregivers frequently reported using their devices to monitor their health and physical activity through the use of inbuilt pedometers in smartphones and/or linked smartwatches. As well as monitoring health and physical activity, these devices could be used to alert others to a fall, adding to feelings of safety and security in PlwCI and caregivers.
‘If I stumble, because I have fallen before, my watch will say to me, “we think you might have fallen, are you okay?” And I have the opportunity to say, “okay,” or to ring for help.’ Margaret, PlwMCI.
Emphasising the benefits of being able to use smart technology to understand one’s health and access immediate assistance may be one way of overcoming anxiety around smart technology, technophobia, or a reluctance to engage with smart technology.
Innovative use of devices
Two participants reported innovative ways in which they used their devices to meet their needs. Richard, a PlwD, always leaves a spare handset plugged into his car’s power outlet. If he forgets where his car is parked, he can use his current smartphone to find the other smartphone and thus locate his car. This was a simple way to circumnavigate the potential problem of losing his car and was ‘cheaper than buying a tracker’.
Sharon provides care for her mother living with moderate dementia and has implemented technological solutions throughout her mother’s home. Sharon has a Meta Portal smart video display in her mother’s living room which Sharon purchased to check up on her mother remotely. Despite further impairment which means that her mother is unable to initiate video calls, Sharon’s mother remains able to recognise the device and receive calls. While her mother’s spontaneous use of the Portal device has decreased, Sharon’s use of the device to care for her mother has evolved.
‘I took over her Facebook account and I created a photo album […] a private one, then used that as the screensaver display on her Portal, which means that wherever I am, here [abroad] or in the UK, I can put images of my choice on the Portal. I have images [that] say things like, “don’t forget to fill your water filter up and drink more water,” […] “your milkman delivers on Friday,” or, “your bread arrives on Wednesday,” “don’t forget to put your milk bottle holder back at the doorstep,” and, because I have a little camera step up to check in on her, and there have been times that I’ve noticed as she’s sat there then she’ll be looking toward that and then she’ll go, “tch, oh, I need to put the milk bottle holder out,” and, like she thought about it, like she’s just remembered, but she’s seen it.’ Sharon, caregiver.
Sharon also uses the Portal to help her mother recall family members that she is unable to see regularly.
‘She’s been starting to forget names, particularly her grandchildren, my two adult children, so I put their pictures up but with the name underneath in big letters so when she’s talking to the carers, the carers know the names so they can prompt her if she forgets, so it’s helping her to remember the names.’ Sharon, caregiver.
Sharon is solely responsible for caring for her mother. She describes her responsibilities as ‘a lot of juggling’ and that ‘it’s definitely technology that’s helping me with that’. The smart video display was not recommended to Sharon, nor was she assisted in installing them; Sharon describes herself as ‘tech-savvy’ and was able to use her knowledge of smart technology to meet her mother’s care needs and her own needs as a caregiver. Sharon’s experience provides a case study that supports that matching PlwCI and caregivers with appropriate smart technology can assist people living with mild-to-moderate cognitive impairment to continue living well and living at home for longer.
Problems with smart devices
Despite finding smart devices helpful, participants had complaints about their devices. The most frequently raised complaints related to the small size of a smartphone screen and/or difficulties navigating devices. Though experienced by both PlwCI and caregivers, of particular concern for PlwCI were software updates. Software updates affected the layout of their devices and the pathways they needed to follow to access features.
‘The first [disadvantage] that springs to mind is when they do an update, something always changes. I go on the basis of […] you don’t fix what’s not broken.’ John, PlwD.
Breaking or losing a device meant losing an important tool PlwCI relied upon, and all the data contained within, such as phone numbers, photos and videos. This data may not be able to be recovered.
Additionally, participants complained that the rapid development of new smart technology devices led to their devices quickly becoming outdated and no longer supported by the companies which developed them. Smartphones were regarded as devices whose market quickly changed. The cost of devices was not wholly prohibitive but keeping up with the constantly changing smartphone market could be.
Participants were apprehensive about purchasing another device due to the overwhelming number of devices available on the market and inconsistencies between brands. For PlwCI who were comfortable with a particular brand, learning to use a different brand could be challenging. Voice-activated features were of interest to participants to counter a loss of dexterity or motor function due to age or neurodegeneration. Inconsistencies in the trigger word or phrases used between brands to initiate voice-activation could be an obstacle for PlwCI.
‘My husband can manage to ask Google to put the radio on because we have smart speakers but can’t use Siri. […] I think part of the problem is that you say, “hey Google,” and you say, “okay Siri,” or something like that and the timing is slightly different then. If there were consistency in the way that these things operated that could be helpful. And if the activation can expand in terms of what they’re able to do then that again could be helpful.’ Ann, caregiver.
Another concern was cybersecurity. Participants felt that the Internet was becoming increasingly commercialised and that accurate information and safe services were harder to find. Sorting the fact from the fictitious and the service from the scam could be challenging.
‘I’ve found as time goes by, it’s getting more and more difficult to investigate something with a search engine because it throws up marketing. […] There’ll be some people that won’t realise that the first three or four returns on the page are actually ads.’ Richard, PlwD.
Participants felt that PlwD could become particularly vulnerable to fraud. They emphasised that online communication should be as ‘secure as possible’ and that they needed guidance to understand how to navigate the Internet safely.
Finally, participants desired dementia-friendly smart device design. It is evident from the concerns and criticisms above that the needs of PlwCI are not being considered in the development of smart technology despite their extensive use of smart technology in their everyday lives. Joddrell and Astell (Citation2016) provided a comprehensive review of touchscreen technology design with recommendations for more inclusive digital device design.
Seeking support to learn to use smart devices
PlwCI and caregivers who had successfully implemented smart devices into their daily lives had not been instructed on how to do so. Participants had, through trial and error, found a way to use their smart devices. However, technology can be difficult to learn to use and PlwCI may need to invest significant time to learn to use new devices to reach a point where they can reliably do so independently.
There was a strong desire for assistance in learning how to incorporate smart device use into one’s everyday life in a way that would provide cognitive support.
‘I wish that everybody who gets a diagnosis who doesn’t already use a smartphone, I wish they were given one or at least helped to buy one and taught to use it so that they don’t feel frightened of it. […] I think there’s a big, big need for more.’ Robert, PlwD.
This assistance potentially could be provided by classes or via peer support networks. Opinion was divided on the best format; most participants showed a preference for small informal classes and/or peer support, whereas others would prefer to engage with a formal class. Similarly, there was no consensus on who should provide these services.
It was noted by participants that learning to use smart devices could facilitate conversation between PlwCI and their family and friends.
‘I think it’s good as well to encourage people to use their family, to use grandchildren and whatever, because that’s quite a good bond then as well, so that crosses into the isolation and the loneliness and all that sort of thing.’ Margaret, PlwMCI.
This could provide an opportunity for PlwCI to discuss their diagnosis with their family in a non-stigmatising way by focusing on the new skills they are learning and the things they are still able to do.
Living in a digital world
The stereotype that older adults are not interested in smartphone and tablet computers was not supported by participants in this sample. Both PlwCI and caregivers made extensive use of their smart devices and came to rely heavily on these devices. When asked to describe the disadvantages of smartphones and tablets, it was common for participants to struggle to think of disadvantages.
‘They’re just so invaluable. […] For many of us, it’s a companion through which we can connect with people. It’s a companion through which we can buy things that we can’t get locally. It’s a companion because we can pay our bills on it, and it’s a companion because we can find our music or films or connect with relatives overseas.’ Robert, PlwD.
Participants had grown up alongside significant advancements in technology. They have made concerted efforts to keep up with technology as it developed during their lifetime. Most participants were familiar with smart technology and were both comfortable and confident using their devices. They enjoyed using smart technology and ‘embraced’ it. Participants considered themselves to be living in an increasingly digital world thus being able to use smart devices and the Internet was essential to participate in modern society.
‘I can see that in my contemporaries as they get older. Technology changes so quickly. If I as an individual don’t keep up with it, I will become more and more disabled to participate in modern society.’ James, PlwD.
They were concerned that they would struggle if these devices were no longer available to them, or if their cognitive impairment meant they would be unable to use their smartphones and tablets in the future.
‘I think life would be much more difficult if I couldn’t do that or if I didn’t have that [smartphone]. […] I’d be lost, I think, without my smartphone. […] I don’t know, maybe the day will come when I look at my phone and think, what is this, what do I do with it, and so then what do I do if I’ve been so heavily reliant on it that that sort of then is taken away?’ Margaret, PlwMCI.
Participants reflected that people who showed reluctance to learn to use smart technology were unaware of what smart technology could do for them. Barbara, who provides care for her husband living with dementia, described that she struggled to keep up with the technological advancements she witnessed during her lifetime. She found smartphones and tablets complicated and difficult to learn to use resulting in frustration and inhibiting her motivation to use these devices.
‘We’ve seen such enormous change, but no one’s allowed for us going in gently as we got older.’ Barbara, caregiver.
Despite her criticisms and self-reported lack of ability or motivation to use smartphones and tablets, Barbara and participants like her found smart devices useful for functional purposes such as communication, health monitoring, and navigation.
‘We’ve just got to embrace what we need to embrace and bypass what we don’t.’ Barbara, caregiver.
‘To me, it’s a tool that should exist to do what I want it to do.’ Deborah, PlwMCI.
To engage PlwCI and caregivers who are reluctant to use smart technology with a smart technology intervention, it may be beneficial to focus on these functional uses of smart devices and build from there if desired.
Preserving self-identity through technology use
Preserving self-identity refers to holding on to the identity that defines oneself as a person. Smart technology offers opportunities for PlwCI to hold onto their identities through meaningful activities and their identities as technology users. Engagement in meaningful activities can be facilitated using smart devices. Deborah downloaded an app to help her identify plant species when gardening. Ann’s husband was an avid reader but found this increasingly difficult after the onset of his symptoms; audiobooks have offered him the opportunity to reengage with this pastime. Sharon’s mother was overwhelmed by the mess of small pieces of physical jigsaws but enjoyed digital jigsaws on her tablet. Activities can be booked online with transport co-ordinated via online services or via messaging apps with family and friends. Location tracking apps can reassure caregivers that their loved one is safe, enabling the PlwCI to continue taking part in activities and exercise outside the house.
Even during the COVID-19 restrictions, smart technology provided PlwCI a safe space to learn new skills or return to past hobbies. By accessing online resources in the relative anonymity of one’s own home, PlwCI felt that they could challenge themselves without fearing failure, presenting a unique opportunity for PlwCI to explore new pursuits in a safe and confidential environment.
Some participants were aware that their smartphone could help them engage with meaningful activities but needed more support. Michael, a PlwD, wanted to build on his smartphone use to incorporate music streaming services. He had been made aware of the music streaming service Spotify during a visit to a local hospital but received only general advice on his cognitive health during this hospital visit and was not assisted in installing the Spotify app to enable him to pursue his interest in music. This is a missed opportunity as meaningful activities such as listening to music have been widely researched and found to help preserve dignity and a sense of identity and self-worth associated with living well (Lamont et al., Citation2020; Roach & Drummond, Citation2014).
Hobbies become part of a person’s identity and staying engaged with these hobbies provided PlwCI with satisfaction. In this context, technology use can be a hobby from which PlwCI derives a sense of control and satisfaction. Many participants said they enjoyed using technology. Their use of smart devices formed part of their identity as a ‘techy’ or ‘tech-savvy’ individual or as part of a ‘high-tech’ household.
Support aiming to build skills with smart technology may help to preserve self-identity by seeing the PlwCI not as someone who is losing capacity, but as someone who can gain new skills and find ways to continue participating in activities they find meaningful.
Using smart technology during the COVID-19 pandemic
Participants in this study described smart technology as a ‘lifeline’ during the COVID-19 pandemic. PlwCI and caregivers who did not previously own a smart device found that they now needed to obtain a device.
‘I never touch the computer […] but when my daughter got us one of these tablets in lockdown, I found that very useful.’ Nancy, caregiver.
Access to online services such as online shopping, online banking, and telehealth services enabled them to continue these essential activities. Online communication was essential to stay in contact with friends and family in the UK and abroad.
‘While we’ve been in [lockdown] I haven’t seen my family in over two years, so it’s [a] really important thing for me to keep in contact with them. We often have Zoom calls to keep in contact with family.’ Mark, PlwD.
Peer support group meetings were hosted remotely via Zoom or other videoconferencing platforms and enabled group members to stay connected.
The COVID-19 pandemic and the emphasis on online communication and services highlighted a need for greater investment in online resources for PlwCI and caregivers.
‘Here we are 25 years on from the development of the Internet. I suspect more could be done and I have a feeling that the pandemic has meant that things like video calls to doctors have become the norm. I suspect some of that has pushed the development which would have happened over many years into a few months.’ Daniel, PlwD.
The COVID-19 pandemic is accelerating telemedicine and digital technology use by people living with chronic neurological diseases (Cuffaro et al., Citation2020). There is a shift that must be made from viewing PlwCI and older adult caregivers as passive observers to people who are actively engaged with digital technologies and the online world and able to benefit from investment in this.
Lack of support to live well following diagnosis
To understand main theme 3—smart devices as appropriate and easily accessible support for everyday living—it is important to first understand how participants accessed support to live well following their diagnosis.
When adapting to the news of their diagnosis, participants—particularly those who had no prior experience with dementia or MCI—felt confused, both about the trajectory of their illness and the options available to them for treatment or support. Participants reported needing greater post-diagnostic support and for this support to be explicitly signposted.
Some support services (for example, carers’ courses, day care, respite care, and discussion of end-of-life) could be distressing for people not presently in need of this level of support, causing fear and uncertainty about their ability to remain living independently in the community. This could cause people to disengage with these services, presenting obstacles to the future uptake of these services.
‘We went to day care, didn’t we, and it was just inappropriate. […] This isn’t what he needs.’ Patricia, caregiver.
Though appreciated by some PlwCI, others found peer support groups challenging to engage with.
‘You [husband] haven’t had any advice about day-to-day living except some advice about there being social groups that you could join and things like that, but that was a long way from what you were wanting.’ Elizabeth, caregiver.
In the absence of appropriate support, participants described the adaptations they made to their lifestyle; this included incorporating smart technology to meet their needs. Assisting PlwCI to learn to use smart devices is an appropriate form of support and may be preferable to peer support or other dementia support services for someone learning to live with mild-to-moderate cognitive impairment. This initial support could offer practical, easily implemented solutions for PlwCI and caregivers. This contact can then be built on to introduce peer support and other services in the future.
Smart devices as appropriate and easily accessible support for everyday living
The installation of equipment in a common modification for people learning to live with cognitive impairment (Giebel et al., Citation2021). 15 participants discussed their use of conventional assistive technologies, such as notice boards, whiteboards, and written calendars and diaries. A flaw with these items was that they required the PlwCI to remember to use them and be able to record accurate prospective reminders.
‘I’ll use a calendar in the kitchen but [wife] will fill all that in. I’ve filled it in but quite often I get the wrong date and possibly the wrong time as well so it’s absolutely useless.’ Thomas, PlwD.
On top of remembering to use these items for reminders, PlwCI also had to develop a new routine to remember to check these items otherwise the reminders were not useful.
‘A list is only any use if you actually have it with you or look at it and we people with dementia tend to forget to look at things.’ Robert, PlwD.
In comparison, participants already had a habit of checking their phone regularly throughout the day. Having a smartphone on one’s person enabled participants to easily reach for their device to act on a thought, providing fewer opportunities for these actions to be disrupted or thoughts to be forgotten. PlwCI in this study and in autobiographical accounts (Mitchell, Citation2018) frequently report the importance of being able to act on thoughts immediately. Building on current smartphone and tablet use to incorporate more cognitive aid features such as alarms, calendars, reminders, and to-do lists made these devices highly convenient as aids.
‘That becomes part of your everyday norm, isn’t it? That’s what you do. You pick your phone up, you put a reminder on it.’ David, PlwD.
Smartphones and tablets can be simplified or personalised to the user. Some PlwCI in this study had altered their smart devices’ settings to overcome sensory impairments. Caregivers removed unnecessary features to enable the PlwCI to continue to use them despite significant cognitive impairment.
PlwCI in the current study described how the ubiquity of smartphone and tablet devices and the commonality of their use meant that they were not seen as special aids. The use of a smartphone or tablet did not draw attention to the user or the user’s impairments.
‘It’s handy, it’s discrete, and you can access it anywhere at any time in most places.’ James, PlwD.
However, the use of smart devices to aid in their everyday life will not be useful to everyone living with cognitive impairment. Indeed, Ann reported that her husband’s decreasing confidence and increasing confusion when using devices with which he was previously familiar was ‘one of the ways it became evident that he was struggling’. There will come a point at which smart technology is no longer able to be used by a PlwCI. Smart devices are not a preventative technology nor a replacement for in-person care but instead are tools that have the potential to assist PlwCI to live independently in the community for longer.
Discussion
Previous research found that PlwCI would struggle with technology due to digital illiteracy (Giebel et al., Citation2022), however PlwCI were poorly represented in this work. Giebel et al. (Citation2022) relied primarily on the narratives of caregivers as opposed to the experiences of PlwCI; 111 caregivers were interviewed in this study compared to just 15 PlwD. It may be that in studies where the majority of participants are caregivers, these caregivers are providing care to a person with moderate-to-severe dementia who is unable to access digital devices. However, it may be that caregivers underestimated the value of smart devices to enable PlwCI to live well, as was found in the current study. This false assumption of digital illiteracy and the prohibition of technology use could decrease feelings of involvement and control and lead PlwCI to experience feeling stigmatised and patronised (Blok et al., Citation2020).
Though digital technologies require cognitive effort to use (Talbot et al., Citation2021), PlwCI in this study and Talbot and Briggs (Citation2022) valued that digital technology use could play a role in ‘keeping the brain active’. Smartphones and tablets were as central parts of the everyday life of older participants and were seen as versatile, essential tools to participate in modern life. Reminders were one of the most useful aspects of owning a smart device for PlwCI (Wong et al., Citation2017). Ross et al. (Citation2022) point to reminders as crucial external aids for older adults across the spectrum of cognitive status.
PlwCI who are interested in using their smartphones and tablets must be supported in learning to use these devices, particularly immediately after the onset of their cognitive impairment (Gustavsson et al., Citation2018). Support in learning to use smart devices as aids could be particularly helpful for PlwCI who live alone or who may not have other support services directly available to them (Talbot & Briggs, Citation2022). Support in learning to use smart devices could assist to overcome some of the practical problems raised by participants. For example, the barrier of overwhelming choice of devices could be countered by the recommendation of a smart device to match the needs and abilities of the individual (e.g. Alzheimer Scotland, Citation2022). If a device were provided, this would eliminate the barrier of the cost of smart devices. Training on cybersecurity threats could counter anxiety using technology (Nicholson & McGlasson, Citation2020), and adjustments could be recommended to improve accessibility (Bos et al., Citation2017).
Smartphone and tablet training interventions with PlwCI have previously been successful (Bos et al., Citation2017; Routhier et al., Citation2012) with some participants demonstrating long-term retention of this learning despite the impact of their impairment on their memory, cognition, and fine motor skills (Bier et al., Citation2015, Citation2018; Gustavsson et al., Citation2018; Imbeault et al., Citation2018). Training need not be extensive; 46% of PlwCI considered one training session sufficient to learn to use a smartphone application, and 46% reported that the training intervention encouraged them to explore new applications and devices (Ramirez-Hernandez et al., Citation2021).
Limitations
A prerequisite for inclusion in this study was that participants were at least somewhat familiar with smartphone and tablet technology. Due to the costs of smart technology, income is often found to be a primary factor in determining its use by older adults (Dermody et al., Citation2021; Ma et al., Citation2016). Thus, participants in this sample may occupy privileged positions to be able to access smart devices and the Internet. Three participants explicitly discussed living in areas of high deprivation. These participants had devices throughout their home, offering support to Petrovčič et al. (Citation2019) who found that older adults of lower socioeconomic backgrounds were more likely to view smart devices as affordable solutions to meet their health and social care needs. In the future, researchers could adopt an intersectional approach and recruit a more diverse sample including people of lower socioeconomic backgrounds.
Recruiting via online sources may have biased the sample towards younger people in the early stages of cognitive impairment and more familiar with digital technology. Participants in this study are not representative of people in the later stages of dementia. It is likely that people in the later stages of dementia experience significant barriers to smart technology use.
Conclusion
Smartphones and tablets were central to the lives of PlwCI and their caregivers, and were considered versatile, essential tools to complete essential and meaningful activities. Smart device use was a cognitively stimulating activity for PlwCI. Caregivers used smart devices to ensure the safety of the PlwCI and to alleviate the burden of some caregiving activities. By using their smartphones and tablets to engage in meaningful activities, PlwCI were able to preserve their self-identity and focus on living well. However, the opportunity of smart technology to facilitate living well continues to be neglected by clinicians and dementia support services. Future studies should explore the preferred delivery of a smart technology-based educational intervention for PlwCI. After this, research needs to move beyond rehearsal of what is needed to co-production and evaluation of smart technology-based educational interventions.
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We would like to thank participants for contributing their experiences and for their feedback on the supplementary summary infographic.
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The data set is available from the author upon request.
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