Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers

Abstract

Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD.

Keywords

assistive technology young-onset dementia family carer embodied everyday life-situated occupational therapy

Introduction

More than 70,000 people suffer from dementia in Norway, and figures based on Harvey, Skelton-Robinson, and Rossor (2003) estimate the occurrence of dementia in people under age of 65 to be somewhere between 2000 and 3000 (Haugen, 2012). Younger people with dementia (YPD) may suffer from disrupted circadian rhythms, which influence sleep patterns. Mood and behaviour can manifest as depression, anxiety, apathy, emotional blunting, and impulsivity (Podell & Torres, 2011). Those diagnosed with dementia before retirement age face different challenges compared to those affected at an older age. YPD have less co-morbidities; they might be physically fitter, and they are at another stage of life, which means that they have different needs to people with late-onset dementia (Rosness, Mjørud, & Engedal, 2011). Many of the YPD need to be able to take part in their children’s everyday life. They may have to adjust their workplace, and their spouses are likely to be working. Research reports that YPD have problems related to parenting tasks, work, loss of independence, and feelings of depression and low self-esteem (Beattie, Daker-White, Gilliard, & Means, 2004; Roach, Keady, Penny, & Hope, 2008). Studies investigating whether or not AT can help to minimise some of the challenges that YPD experience due to their particular life situation are scarce. Research has shown that family carers of YPD are more likely to get ‘burned out’, have anxiety, depression, and experience marital problems than carers of older people with dementia (van Vliet et al., 2011; van Vliet, de Vugt, Bakker, Koopmans, & Verhey, 2010; Werner, Stein-Shvachman, & Korczyn, 2009). It is important to explore the potential of AT to ease some of the burdens that family carers have described.

AT can be defined as a technological assistance intending to increased safety, security, social participation, mobility, and physical and cultural activities. It also aims at strengthening the ability of individuals to fend for themselves in everyday life, despite illness and social, mental, or physical disability. AT has been described as one solution that might support relatives, and furthermore may contribute to improve availability, resource utilisation, and quality of service provision. AT is also been highlighted as a solution to postpone the need for services or institutionalisation (NOU, 2011). It will be important to substantiate these claims with empirical research.

Previous studies have demonstrated that people with late-onset dementia can benefit from using assistive technology (AT), such as time aids or item locator devices (Cahill, Begley, Faulkner, & Hagen, 2007; Cahill, Macijauskiene, Nygård, Faulkner, & Hagen, 2007; Rosenberg & Nygård, 2011; Rosenberg, Nygård, & Kottorp, 2009). AT may support independent living, promote time orientation, and enhance well-being and safety for both people with dementia and their family members (Cahill, Begley et al., 2007; Rosenberg, Kottorp, & Nygård, 2012). One study emphasizes that it should not be taken for granted that people with dementia can manage technological devices during an early phase of dementia if they live alone and lack support from relatives (Nygård & Starkhammar, 2007). Research exploring YPD and family carers experience concerning the use and usefulness of AT living together is, to our knowledge, not yet been explored in previous studies.

Studies show that older people with dementia find that well-known equipment such as alarm clocks, mobile phones, and television remote controls can be difficult to handle (Rosenberg, Kottorp, Winblad, & Nygård, 2009). It is important to develop knowledge about how YPD cope with the ordinary equipment of daily life, and whether or not simplified mobile phones, remote controls, and so forth can help them maintain important and valued everyday life activities. There is a clear need for studies to investigate if, and in which ways, ATs can support YPD to maintain meaningful and more independent living.

More knowledge is needed about YPD and family carers’ experience of using AT in their everyday life. Central concerns are: can it minimize their challenges, support meaningful and independent living and ease some of the caregiver burden? To counter some of these questions this study exploring YPD and family carers’ experiences of using AT over a period of time. The research question addressed is: What, during the process, seems to be of significance whether the AT became beneficial or not for the YPD and family carers in their everyday life?

Methods and materials

Methodology

The study focuses on how ATs are being negotiated and transformed by active embodied and situated social subjects in their everyday life. As embodied agents, people participate with other embodied people in, and between, specific life contexts. This ontological basis frames the study. It is based in particular upon Merleau-Ponty's phenomenological conception of the ‘lived body’, and critical psychology's conception of participation in ongoing everyday life-situated practice (Arntzen & Elstad, 2013; Arntzen, Hamran, & Borg, 2014; Dreier, 2008; Merleau-Ponty, 1945/2002). In order to seek a deeper understanding of the meaning of AT as implemented for YPD and family carer, it is necessary to go beyond the individuals and investigate how different family members contribute to the process of incorporating AT. The chosen perspectives are suitable in problematising how new technology is absorbed into subjects’ habitual embodied practice, and how it can generate new meaning for the YPD and family carers.

What makes this a phenomenological study is its epistemological perspective, which is especially derived from Merleau-Ponty (1945/2002). He introduced phenomenology as a radical reflection that attempts to make a direct description of our experience prior to its psychological and scientific explanations (Merleau-Ponty, 1945/2002). This field is not an inner world; the phenomenon is not a state of consciousness. His phenomenology is concerned with the phenomena of concrete experience, particularly their coming into being, and ways of evolving (Merleau-Ponty, 1945/2002). The phenomenon investigated in this study is the AT, and the trajectory from when it is introduced, acted upon, explored, and evaluated by the YPD and family carers. The phenomenon is therefore approached both as it appears intersubjectively to close observers (researchers), and as it is being described by the YPD and family carers.

Participants

This qualitative study followed 12 YPD and their family carers for up to 19 months (Table 1). Eight women and four men, aged 52–65, with mild to moderate dementia participated. Most of them lived together with a spouse or cohabitant, but one lived alone, and one lived with a teenage daughter. The 14 family carers who participated had an age ranged between 19 and 89 years. Ten family carers worked full time, and some had positions that required travelling.

Table 1.

Overview of the participants

Name	Age	Diagnosis* = AchE inhibitors	At work	Former profession	Family carer	Public services	Assistive technology
Sverre	63	AD*	No	Craftsman	Spouse Child	Day centre 1 x week is offered, but not used	Simple remote TV control, simple mobile phone, stove timer and night & day-calendar
Kristian	65	AD	No	Engineer	Spouse	None	Digital calendar, 2 simple remote TV controls
Åse	52	AD	Yes	Office clerk	Spouse	None	Digital calendar, Simple remote TV control, medicine dispenser with alarm, simple mobile phone
Berit	60	AD*	No	Accountant	Spouse	Day centre 1 x week	GPS, speaking watch, medicine dispenser with alarm
Sissel	59	AD	No	Office clerk	Child	Day centre, supporting person	Item locator, simple remote TV control, memory clock
Inga	57	AD*	Yes	Health professional	Spouse	None	Digital calendar
Maria	65	AD*	No	Office clerk	Spouse	None	Digital calendar, simple remote TV control, verbal reminder connected to timer for coffee machine
Nora	62	D	No	Office clerk	Parent	Applied for supporting person	Digital calendar, simple remote TV control
Jakob	55	FTD	No	Craftsman	Spouse	None	Digital calendar
Elisabeth	60	AD*	No	Housewife	Spouse	None	Stove timer, auditive memory clock, white board
Gunn	64	AD*	No	N/A	Spouse	Day centre supporting person	Stove timer, auditive memory clock, digital calendar, simple remote TV control
Otto	64	AD*	No	Transport worker	Spouse Children	None	Speaking watch, electronic doorlock, auditive message box, simple remote TV control

D = unspecified dementia; AD = dementia by Alzheimer's disease; FTD = Fronto temporal lobe dementia; AchE = acethylcholine esterase inhibitors.

The YPD participants were recruited from four Memory Clinics in Norway. The inclusion criteria were that they had to be below 66 years of age, diagnosed with dementia (of any type) during the last 12 months, have a family carer willing to participate in the study, and that both must be willing to explore the use of one or more technological devices in their own home (Table 2).

Table 2.

Overview of assistive technology introduced during the project

Aim: to create safety and security at home	Aim: to simplify user interfaces	Aim: to support user's need for visual reminders	Aim: to support user's need for verbal reminders
Sensors, timers and a tracking device	Compensation technologies: simplified user interfaces to support lost functioning	Provide visible information	Provide verbal information
Cooker alarm with temperature sensor	Automatic day and night calendar	White board, with written messages	Speaking arm-wrist watch
Timer on coffee machine	Simple remote control to television	Digital calendar, digital messages and reminders	Message-box reading a message when activated
GPS – tracking device	Electronic door-lock, removes need for handling the key	Automatic calendar, showing day and date	Reminder, for example, the coffee is ready now!
	Item locator, locates lost objects	Colour coding, labelling to support localisation of objects, groceries, etc.	Memory clock
	Simple mobile phone		Medicine dispenser with alarm

Data production

To get access to significant elements in the process where AT was experienced as beneficial for YPD and their family carers, in-depth interviews about daily life and observations every third month were used to produce data during the implementation process. The first home visit focused on the YPD and family members’ everyday life, described challenges, and identified coping strategies (Figure 1). Various ATs were suggested by the occupational therapist project worker, based on how the YPD and family carers described their challenges and needs. The person with dementia and their family carer took an active part in the process of discussing and choosing an AT product. Through activity and active interaction with objects, the YPD in our study associated more spontaneously, and became more able to memorise and share their experiences. Combining interview and observation contributed to strengthen the YPD first-person perspective, and made it possible to produce more comprehensive data.

Figure 1.

Overview of the data production

The home visits varied from 90 to 150 min. The occupational therapist project worker carried out, and was responsible for, the implementation process. The researcher and/or the project worker conducted the in-depth interviews and carried out the observations. All interviews and observations took place in the participants’ homes. In total, 39 technical devices were explored during the project period.

The follow-up visits were consistently carried out by the same researchers. This study is based upon the follow-up in-depth interviews with both the YPD and the family carer, and also upon the field notes from the observations. The in-depth interview idea unfolded as a conversation, which was inspired by Kvale, Brinkmann, Anderssen, and Rygge (2009). Both the person with dementia and their relative were asked to reflect upon their experiences related to the AT they were introduced to. The follow-up interviews focused especially on the participants’ description of using the new tool during the preceding three months. The follow-up questions aimed to ensure that rich descriptions of problematic issues associated with AT use, as well as the significance and advantage of AT use in their everyday life, were obtained. An interview guide was designed, containing themes regarding how life had been before the disease, the illness story, the YPD and family carers’ experience of everyday life today, challenges, coping strategies, and experience and attitude to AT, as well as their experiences of testing a new AT. The interview guide was reviewed at the end of each interview. With some exceptions, the person with dementia and the family caregiver were interviewed together. The interviews lasted from 30 to 90 min. After each interview, spontaneous reflections about the interview situation were written down by the researchers.

Data analysis

NVivo 9 was used to structure the data. The process of structuring and further analysing the data was inspired by Lindseth and Norberg’s (2004) phenomenological hermeneutical method, which can be defined as three methodological steps. The first step, called ‘naïve reading’, is intended to grasp the overall meaning of texts. For the first step, all recorded interviews were listened twice before being transcribed verbatim. Periods of silence, laughing, crying, and so forth, were noted. The log notes were read several times. The next step, the ‘structural analyses’, began by identifying ‘meaning units’ (groups of statements that convey the same meaning) relevant for the research question). Meaning units were tracked in the transcribed text from each participant and labelled with a code, in terms close to those that had been transcribed. All coded units were then reflected against the background of the naïve understanding, and grouped across participants’ experiences. When ordering the coded log notes and interview data, five main themes with underlying sub-themes emerged. ‘Comprehensive understanding’ is the third step in the process of analysis. In this phase, themes and sub-themes were further developed, and a theoretical abstraction occurred, when exploring how the participants’ experience of AT use could be interpreted within their dynamical embodied and everyday life-situated practices.

Trustworthiness in this type of research relies upon systematic insight and integrity throughout the research process (Denzin & Lincoln, 2005). The second and third authors of this study ensured the thoroughness and accuracy of data collection and transcription of the data. All three authors have worked systematically on the interpretation of the material, and have read selected transcriptions, and coded meaning units. They have also had regular meetings discussing data collection, analysis, and interpretation.

The authors’ professional background as occupational therapists and their working experience of people with dementia constituted a pre-understanding. Discussing the empirical material and findings together and reading specific philosophical, sociological and psychological texts and relevant research literature helped to generate a necessary analytical distance throughout the research process. As a phenomenological–hermeneutical inquiry, this study does not offer the reader conclusive arguments or a determinate set of ideas. However, by using specific theoretical concepts analysing the participants' experiences of using AT, this study developed relevant insight beyond the 12 dyads participating in it.

Ethical considerations

The participants received written information about the study. The letter assured them that any information provided was confidential and that they could withdraw from the study at any time, without any consequences. Informed consent was provided both by the YPD and their family carer. The study has been approved by The Regional Committee for Medical and Health Research Ethics (REK). Reflection on the ethical aspects of the study has been a continual aspect of the project; it has been important to establish good and confidential relationships with the participants, ensuring that participation in the study did not become an extra burden. The participants expressed their happiness to contribute in developing knowledge that might help themselves and others. The participants are given fictitious names in the text.

Findings

The findings are based on the YPD and family carers’ experiences, as well as the described dynamical interactions that emerged between the people that were actively involved in the specific AT during the trajectory (log notes). Five elements became visible, which can be described as essential elements, whether the AT became beneficial or not for the YPD and family carers in their everyday life:

The AT had to be valuable by addressing practical, emotional, and relational challenges;

The AT had to fit well into, or be a better solution than, habitual practice and established strategies;

The AT had to generate positive emotions and become a reliable and trustworthy tool;

The AT had to be user-friendly, adaptable, and manageable;

The AT had to interest and engage the family carer.

AT had to be valuable by addressing practical, emotional and relational challenges

(1.1) AT addressed different needs for YPD and family carer. Memory problems were described as the most challenging consequence of dementia for both the YPD and the family carers. Sverre said: ‘my memory is like… when I turn around, it is gone’! While people with dementia spoke of the challenges of dealing with everyday living, the relatives talked especially about their worries concerning the consequences of the spouses’ memory problems. For example, Birgit, a spouse, said that she was afraid that her husband would forget the kettle on the hob when he was alone during the day. Most of the relatives are working full-time, and they felt squeezed between the demands of taking care of their partner or parent at home, and fulfilling their obligations as an employee at the same time.

Increasing memory problems generate different challenges for the YPD and the family carers. Based on this finding, the AT seems to address different needs and ascribe various values for the YPD and family carers. The husband of Gunn said, ‘The most significant device for Gunn is the simplified remote TV control, for me, it's the item locator’. The simplified remote TV control enabled Gunn to manage the television without assistance, which was of great value for her. Her husband could use the item locator to relocate lost objects, which considerably reduced stress and anxiety.

Both the YPD and family carers emphasised that frustration, irritation and relational difficulties were often related to the challenge of keeping control of appointments, time and daily activities. Generally, the family carers played a key role in maintaining an overview of the day and upholding a feeling of safety and control, by giving reminders, calling them from work, checking that their medications were taken, and so on. The monitoring role was gradually becoming more visible to the family carer and many felt it to be an additional load. In particular, the family carers articulated the need for technical solutions that could remove this burden and provide safety, as well as ensuring that appointments were kept and activities performed while they were not at home. They saw the potential relief that AT could provide, in terms of giving fewer reminders or reducing the amount of phone calls during their working day.

The analysis showed that AT provided a beneficial experience for the YPD and the family carer if the items served as a solution to some practical, emotional, or relational challenge in their life. However, YPD and family carer might, as shown, find the AT useful and beneficial for different reasons.

(1.2) The YPD and family carers’ need became visible through the implementation process. Something interesting happened in the process when the YPD and their family carer described everyday challenges and coping strategies and discussed possible AT solutions. It was revealed that this interaction process led to more engagement and curiosity in the family carers. If the YPD and/or the family carer found one AT useful for addressing a practical problem, they explained other challenging situations and asked for support. New meanings and insights actually emerged from the interactive process of collaboration and exploring the potential benefits and limitations of the chosen AT.

In the early phases, the YPD and family carers stated that they were not necessarily aware of their own needs, or which solutions could help them address the various challenges of everyday life. Erik, a husband, said:

All the devices we have got are devices I didn't know about, and I never thought that we needed any of them before they were presented. Information about the different aids is important to get out to others in the same situation.

The example illustrates that the YPD or the family carer, through participation in the project, became more conscious about their needs and their everyday life challenges. In the process, through communication and reflection with the occupational therapist and each other, by interaction with different objects, and through trial and error, they developed new insights and understanding. By modifying their practices and adjusting the equipment, they could see the potential of what assistance the device might, or might not, provide.

AT had to fit well into, or be a better solution than, habitual practice and established strategies

(2.1) The significance of habitual practice. Well-incorporated everyday equipment, such as a television remote control or mobile phone, became difficult to handle for many of the YPD in this study. The YPD described that these types of equipment were problematic to handle because they had too many buttons and required too many operations and procedures. AT such as a simplified TV remote control and a simplified mobile phone were quickly perceived to be beneficial because they were easier to handle. The family carers found the simplified remote control particularly useful, because it minimised stressful situations during the day. Gunn’s husband said: ‘It is working well! It is simple and easy to use! I use it myself too, and I find it is easy to explain to her’. Hans, Maria’s husband, said that ‘The TV remote control is fantastic’. He is also glad that he no longer has to update the TV channels as a result of his wife's experimentation with their old remote control.

Sometimes Maria used the old remote control and Hans had to remind her that she had got her own remote control now. Along the same lines, Gunn’s husband said: ‘The simple remote control is really nice, but I have to hide the other remote controls so that she only finds her own’. Looking at his father, Sverre’s son said:

You forget that you have got a new remote control. I should hide the old one, but I think you will search around and find it. The new one is placed just in front of your nose, and you still search for the old one!

The family carers’ experience was that if the old and the easy-to-use TV remote control were both available on the table, the YPD had a tendency to immediately pick up the old familiar one.

Despite the fact that the new remote control is easier and more manageable, the YPD favours and searches for the old and more familiar one; this interesting finding shows that established patterns of practice and the internalised use of equipment as well as familiarity with objects can make it more difficult for the YPD to transform and adapt to new technologies. The old remote TV control is internalised in their everyday habitual practice and influences their ability to incorporate the new AT.

(2.2) Old patterns of habits and established strategies are stronger. Another finding indicates that all families had already established some new strategies to support the YPD to remember appointments, to organise the day, and to reduce the burden on their relatives. There were various established routines: a system of ‘post-it’ notes (yellow stickers), notebooks, diaries, messages and reminders on the mobile phone, clocks, and paper calendars with written messages. Kristian’s wife said that it was important to establish proper habits from the beginning:

We have been using a little pocket-sized calendar … It is easy to fold up and to carry about. If we need more space we stick a ‘post-it’ note on it, a shopping list and such like … Inside there is a notebook and an address book, where I have written down his and my phone numbers. The notebook lies open on the kitchen bench and we write in it mostly in the mornings and evenings. He can find the date on his watch, which he still uses.

Established habits and familiar strategies are not always sufficient to help the YPD master everyday life and contribute to a sense of being in control. In both Kristian and Åse’s cases, the situation arose where there were too many ‘post-it’ notes around the house, which eventually made it impossible to select the right one. Therefore, they were both eager to find a new solution that might solve their problem.

During the implementation process established strategies and routines were maintained while the YPD learned to embrace and use a new technology. This means, for example, that the families would try out the digital calendar, and at the same time continue to write in the diary. This was to ensure that they did not make mistakes and lose control. It felt more safe to maintain a ‘dual accounting system’ while testing out the technology, since they were uncertain whether or not the new technology could replace the ‘pen and paper method’. Keeping parallel routines going increased the workload for carers, since two different systems could be more confusing than helpful for the YPD.

In some cases YPD and family carers stopped testing the equipment because it became too overwhelming to keep track of two or more systems simultaneously. In these cases, both the YPD and family carer reasoned that ‘pen and paper work, and that is what we are used to’. Nora gave up using the digital calendar: ‘It is second nature for me to write down things I need to remember in my diary; it is much faster than using that thing [pointing at the digital calendar]’.

In the case of the digital calendar, old patterns of habits and established strategies such as using pen and paper were stronger and seemed generally to be more simple and useful compared to the new technology for the participants in this study.

AT had to generate positive emotions and become a reliable and trustworthy tool.

(3.1) Establish trust and reliability. While some YPD and family carers immediately felt confident and believed that the aids could be of help in their everyday life, others were more sceptical and hesitant. Differing emotional attitudes toward the AT were especially visible on the day that the AT was introduced to their homes. Sceptical spouses remained in the background; they occupied themselves with other things in the house, did not ask any questions, and showed little interest during the demonstration and training. Spouses or cohabitants who showed emotional engagement and interest appeared differently during the first meeting. They were actively involved in the learning situation with the occupational therapist and the YPD. They asked questions, problematised and touched the AT and were eager to learn. However, the sceptic YPD, uncertain of the usefulness of the AT or whether or not they would be able to manage it, were passive; they held themselves in the background and let the family carer do all of the work. They had to be urged to try the AT, and some of them spoke about it in negative terms.

Using the AT could also generate mixed feelings for the YPD. The tension between trust and doubt was clearly articulated by Inga concerning the digital calendar: ‘I find that I can trust it, although I do check my diary as well, because that is what I am most used to … ’. Sissel described how her level of trust increased as the technology was incorporated into her daily life and became an integral part of it: ‘I feel that I have got into a good routine with that clock and I feel safe with it … ’.

The YPD and family carers’ emotional attitudes shifted during the exploration process of testing the AT; the emotional relation towards the device could develop in negative or positive directions. The AT therefore had to become reliable and trustworthy. This was an essential element in regard to whether the AT becomes beneficial for the YPD and family carers, or not.

(3.2) The AT generate different emotions through the process: Some YPD and family carers felt motivated, optimistic and enthusiastic about the aid, others found it led to chaos, irritation, anger, and an increased workload as time went by. Sissel heard the noise of the digital calendar and wondered whether it was raining outside. Birgit complained about the noise from the cooker alarm, and said: ‘the noise is so intense… it even bleeps when we are eating dinner’. Frank said that the reminder clock worked on the same frequency as the radio in the living room, and that it started buzzing and bleeping. Hans described how the digital calendar bleeped day and night, and this was stressful for Maria because each time it bleeped she had to find her diary and check it to see what she was supposed to be doing: ‘When she can’t find her diary, she gets distressed, and I get frustrated’, he said. Maria managed most, but not all, of the steps involved in adding appointments into the calendar. As a result, some appointments ended up being scheduled at the wrong time, which caused problems with the calendar. Frequent complaints were about what Gunnar (a husband) called ‘hassle and annoyance’. Shortcomings in the design of the AT, which resulted in complicated and non-user-friendly procedures, as well as inconvenient settings, which were difficult to alter, were contributory factors to negative emotions. Sissel’s daughter said: ‘I am not very familiar with the settings on it [the memory clock]. I tried to alter the message which was programmed. I wanted to change the day, but wasn’t able to… It isn’t that easy’. Some family carers became annoyed when they were responsible for adding appointments and updating the digital calendar. The source of irritation was partly due to the effort they had to invest in order to complete the task, and partly the feeling of added burdens in an already busy and stressful life.

Some aids could be something of a ‘double-edged sword’, both useful and frustrating at the same time. Some family carers described how the usefulness of the AT, and the confidence it provided, outweighed the irritation it caused. Sverre’s son illustrated this by describing the cooker alarm:

It goes off after we have started our dinner; it’s irritating with its bleeps, but it works. It’s really annoying when we make food that takes more than an hour. I remember at Christmas: we didn’t hear the alarm after an hour had passed and it [the oven] turned itself off. It took a while to get that turkey roasted … But it is safe.

Some couples still wanted the AT despite the inconveniences, and found creative solutions to the challenges. For example, the cooker alarm went off every time someone took the kettle off the hob. Hans, Maria’s husband, tackled it in his own way, by having a kettle full of cold water ready to put on the hob as soon as the food was cooked.

Negative emotional attitudes toward the AT were generated when the aid behaved in an unexpected manner (e.g. made a noise), was difficult to gain control over, or ‘demanded’ too much of the participants. But, in some cases the experienced usefulness overshadowed the inconvenience of the AT.

AT had to be user-friendly, adaptable and manageable

(4.1) Characteristics and user-friendliness. Generally, the technology should not be intrusive in the home. However, sometimes the strategy was exactly the opposite: to let the AT have the most visible place in the living room. For some devices it was important that they should be handy to carry around. In order for digital calendars to be user-friendly, they needed to be simple and easy to use, with clear pages that were personalised in regard to the design and content of messages. A non-hibernating screen was also a necessity if it was to catch the attention of the YPD.

The degree to which the AT could be tailored and adapted to meet the particular participant’s cognitive condition and the needs of the family was of huge importance. In some cases the occupational therapist personalised the chosen AT, for example, by sticking illustrations on the buttons of the locator for lost items. Developing a well-adjusted relationship between the YPD’s cognitive capacity and the ATs complexity and adaptability was crucial for the incorporation process.

(4.2) YPD capacity, the feeling of mastery and the complexity of technology. Six participants started to use the digital calendar by themselves. Kristians’ wife, Unni, was immediately interested in the digital calendar, while Kristian tended to be more reserved. Kristian explained:

Of course, one is not particularly motivated by that thing … so I am left with the feeling that this is just too difficult for me, and for others in my situation. It is just too much to cope with.

As he sat down with the occupational therapist to learn how to use the digital calendar he said:

There’s an awful lot of information here. One needs to know which button to press. There is just too much to cope with. If one makes a mistake [during the operation], it will be difficult to discover what went wrong.

Inga, who tested the same calendar, said: ‘I don’t use it much; it isn’t logical! I have tried to grasp it, but it isn’t easy!’ Nora’s mother explained that Nora was fairly enthusiastic about it in the beginning, but found it difficult to add appointments, and after a while she refused to use it. Her mother thought it was a strain for her to use the digital calendar. The stress of not mastering the use of digital calendars led to frustration and unnecessary inconvenience, as well as the feeling of being incompetent.

For an AT to be successfully incorporated, it was vital that it created a feeling of mastery in the YPD. In order to become a skilful user, the AT needed to be appropriate, and adjusted to the individual’s condition and capacity.

AT had to interest and engage the family carer

(5.1) The family carers’ engagements. As described, the digital calendar was often seen as being too difficult to administrate for the participant, and most of the family carers were not motivated enough to follow up the technology. Kristian’s wife, Unni, was not interested in taking on responsibility for adding appointments to his calendar; she did not have the capacity. And husband Gunnar said:

There is more than enough to think about without having to struggle with that thing over there as well! We don’t really need the calendar because we have a large diary which we have used for years, and that works fine for us. That thing [pointing at the digital calendar] is just a troublesome waste of time!

The carers’ attitude, commitment and will to learn about and follow through with the testing of the technology were vital if the equipment was to be useful and functional. Successful incorporation required relatives to make an effort to learn about the technology, spend time on follow-up, and be willing to change their own routines. This was particularly true for the implementation of the digital calendar.

The ATs that were found to be useful and were successfully incorporated into their everyday life were primarily those which the YPD were able to operate themselves without too much involvement from relatives.

Discussion

In a phenomenological sense, people and things reciprocally constitute each other and generate meaning, but as Merleau-Ponty clarifies: ‘The relation between things or aspects of things is always having our body as their vehicle’ (Merleau-Ponty, 1945/2002, p. 373). It means that things come into being by peoples’ involvement with them, and they become what they are on the basis of our lived, bodily, practical, and social everyday life. It became obvious in our study that meanings were generated through use, and also through the dynamics that were created in the intersection between the YPD lived body, their cognitive capacity, the AT characteristics, the family carers’ engagement and competence and the professional support. This reciprocal interactional process created different emotions which influenced whether the AT was experienced as beneficial or not.

Similar to studies investigating the benefit of AT to people with late-onset dementia (Cahill, Begley et al., 2007; Cash, 2003), this study demonstrates that AT can also be beneficial and thus become successfully incorporated in YPD and family carers’ everyday lives. We found that the device(s) had to be perceived as valuable in addressing the practical, emotional and relational challenges of everyday life. However, AT may be experienced differently and ascribed varying values by the YPD and the family carer. The family carers are mostly concerned about safety and security, and want AT to monitor and prevent fire, flood, and falls (NOU, 2011). One study found that the use of AT may reduce caregiver stress and increase individual autonomy (Beattie, Daker-White, Gilliard, & Means, 2003). We find that AT use can both promote and reduce stress for the family carers. Similarly it can increase autonomy as well as promote feelings of incapacity for the YPD.

Our study illustrated that AT generated both feelings of joy, mastery, experience of being in control, and safety, as well as negative emotions such as hopelessness, irritability, restlessness, defeat or guilt. This study showed, as Heidegger (1962/2005) emphasised, how tools are given meaning through use, how they can be annoying and intrusive when they do not fit in, and also how they can become useless or cause more trouble than help in everyday life. Based on this and other studies (Cahill, Begley et al., 2007) one has to be especially aware of the risk of unwanted effects when offering AT for people with dementia, such as increased confusion and feelings of incompetency. The field needs to reveal the AT’s positive as well as negative effects on YPD and family carers’ everyday lives.

The new technology has to fit in with, or be easily incorporated into, family life routines and the different members' habitual practices. Similarly to other studies (Rosenberg & Nygård, 2011; Rosenberg et al., 2012) the analysis in our study also showed that successful incorporation was associated with the experience that AT must be perceived as a better solution than already established self-initiated strategies, such as the use of paper and pen. A successful implementation was due to avoidance of the simultaneous use of competing systems or strategies which overlapped.

Merleau-Ponty’s (1945/2002) concept of the habitual lived body, and his descriptions of how the material world is inseparable from the structures of the embodied agent, can be of help in interpreting the tendency that the YPD favour their old familiar objects despite the fact that the simplified aids are easier and more manageable for them. It seems that their bodily intentionality, described by Merleau-Ponty (1945/2002), which has been internalised through bodily habits and routines, is stronger and more dominant in the YPD tool-relation. The internalised habits and relationships with familiar objects may be more robust, especially when memory problems occur for the YPD. However, the study also illustrates that it is possible for the YPD to incorporate new tools and absorb new patterns and principles of actions. Facilitation of change requires time, close follow-up, family carer involvements, and furthermore a careful consideration of which objects should be available in their homes. Others also claim that people with dementia respond more easily to familiar than unfamiliar objects (Cahill, Begley et al., 2007).

The simplified mobile phone and TV remote control were considered more beneficial than, for example, the digital calendar. Both the simplified mobile phone and remote control are familiar objects, which already are internalised in the everyday social situated practice, and they do not require a large restructuring of established daily routines. Lindqvist, Nygård, & Borell et al. (2012) found that one significant juncture of becoming an AT user is the person’s willingness to adjust daily routines in order to include a new device. The example also illustrates the significance of building on habitual practice and routines when incorporating AT.

The process of successful incorporation was connected to the YPD and family carers’ trust and confidence in the AT. If they found it proven that the AT worked, they became more convinced about the AT’s potential to support. Confidence was partially related to the experience of mastering the object; that the YPD or the family carer could intuitively use the AT without requiring a lot of training. Lindqvist, Nygård, & Borell (2012) investigated how people with Alzheimer’s disease in its early stage became users of AT, and found that relying on the device was a central juncture in the acceptance process.

The AT’s potential to be adjusted to the cognitive capacity of the YPD, and to individual needs and preferences when it was already in use were key components for its successful incorporation. These findings correspond with Rosenberg and Nygård (2011), who highlight that people with dementia find AT useful when they intuitively understand it, and when the AT is capable of automatically correcting errors made by the user. Others have also demonstrated (Cahill, Begley et al., 2007) that devices that represent technical difficulties when used (e.g. they have an inappropriate user interface, or tend to create feelings of incapability in the user), present the risk of the AT being perceived as less beneficial both for the YPD and family carer. Of the utmost importance for a successful incorporation was the degree of engagement and interest of the family carer. Rosenberg and Nygård (2011) says that the process of becoming an AT user is depended on the actor/actors involved, which might have different and sometimes conflicting views about the ‘right thing to do’. The researchers find that many driving forces were involved in these complex processes and the choices were determined by the one who had decision-making power. The participants with decision-making power in our study were mainly the family carers, because they had to be interested and engaged in the chosen AT in some way or another. Other studies have also emphasised the role of significant others in AT use, both to support the person with dementia and as users themselves (Podell & Torres, 2011; Werner et al., 2009), and that the use of AT is influenced by the availability of the caregiver and their willingness to remind the person about the product (Cahill, Begley et al., 2007). Rosenberg, Kottorp, and Nygård (2012) show that carers usually have a positive overall attitude toward AT, and in agreement with our findings they also highlight the carers’ requirement that AT support must not ask too much of them.

Using a phenomenological and social-situated frame of reference in analysing the data made it possible to process new knowledge about the very complex and dynamic processes involved in the trajectory of implementation. The findings highlight that the scope of possibilities, change and successful incorporation of AT is not entirely up to the YPD alone. The use and experience of usefulness are highly dependent upon the extent to which the family carers engage, and whether they become interested in the AT and in its potential to support. The findings in this study bring to light the idea obtained from critical psychology that ‘We cannot understand individual possibilities and change processes on the basis of purely individual conception of subjectivity and action’ (Dreier, 2008, p. 30). The embodied and everyday life-situated perspective shows how YPD and their family members are participants in ongoing interrelated social practice, and contribute to the process of change by their modes of functioning, skills and meaning-making abilities. We underline how important it is for professionals to evaluate different AT products on the basis of embodied agent involvement in their everyday life context. The perspective requires insight into all family members’ habitual practice and established compensatory strategies, as well as knowledge about people with dementia and their family members’ capacity, competencies, expectations and interest.

Footnotes

Acknowledgements

The author thanks the participating YPD, family carers and project workers who made this study possible.

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) received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Cathrine Arntzen has a PhD and is an Occupational Therapy specialist in elderly health. She is an associate professor at Department of Health and Care Sciences, the Artic University of Norway, and a senior researcher at Division of Rehabilitation Services, University Hospital of North Norway. Research interest is; people’s everyday life challenges due to different neurological disorders in the elderly, trajectories creating processes of learning- and change, patient- and family experiences, and the complexity of occupational therapy practice.

Torhild Holthe is an Occupational Therapist with a MSc degree. She now works as Researcher on the Norwegian Advisory Unit for Ageing and Health. Clinical experience from old-age psychiatry and dementia assessment (1986–1997). From 1997 she has been working in the Norwegian Advisory Unit for Ageing and Health. Main tasks are lecturing and research on dementia and technology. She led the current project on Younger people with dementia and use, benefit and significance of AT, 2009–2011. She has participated in several projects in Norway, in Scandinavia, and in EU-funded European projects.

Rita Jentoft is Associate Professor and Head of The Occupational Therapy Program and The Joint instruction to Health Science Program at UIT, the Artic university of Norway. Clinical experience from various mental health services, included psychogeriatric and dementia. Research interest is to achieve knowledge in two fields; Flexible learning in education and the relationship between young onset dementia and new technology.

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