Edited by: Iracema Leroi, Manchester Academic Health Sciences Centre, UK
Reviewed by: Vijaykumar Harbishettar, South Essex Partnership University NHS Foundation Trust, UK; Abebaw Mengistu Yohannes, Manchester Metropolitan University, UK
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An interactive web tool has been developed for facilitating shared decision-making in dementia-care networks. The
A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the
(1) The user friendliness of the
Participants found the
Decision-making in dementia-care networks is complex (Epstein and Gramling,
Shared decision-making, which has its roots in the medical encounter, is an approach that involves patients in decision-making in collaboration with their professional caregivers (Elwyn et al.,
Case management in dementia care is a fairly recent phenomenon. As in most countries in Europe, Canada, and the United States, community-dwelling patients in the Netherlands diagnosed with dementia and their caregivers are entitled to receive assistance in the form of case management (Koch et al.,
Supportive tools that enable shared decision-making in the clinical encounter can be paper based or web based (Stacey et al.,
Our intended improvement is an interactive web tool, the What do people with dementia, informal caregivers, and case managers think of the user friendliness of the Are users of the What value do people with dementia, informal caregivers, and case managers put on the
During the 5-month field study, 4 community-dwelling people with dementia, their 12 informal caregivers, and 3 case managers used the
The
The
Two manuals for using the
The principal researcher recruited case managers who had participated earlier in the development of the
The inclusion criteria were
Mild to moderate dementia and the ability to participate in a conversation. Availability of a care network consisting of a person with dementia and a minimum of two informal caregivers. Willingness to use an interactive web tool like the Willingness to provide oral or written feedback.
The case managers explained the study to potential participants and asked for their consent to give their contact details to the researchers. Then, the principal researcher (Marijke Span) contacted the people with dementia and the informal caregivers (whom the case manager had approached and selected by phone) and explained the aims and methods of the field study. The potential participants were asked for their oral consent. Then, a confirmation of their participation and written information about the pilot study was emailed to them or sent by regular mail. A week later, the principal researcher phoned them, checked whether they still consented, and if so, made an appointment to get acquainted at their homes. The people with dementia were asked who were important to them, and the informal caregivers they named were also approached for participation in the field study. The same procedure was followed for these participants as for the people with dementia.
Participants used the
First, the principal researcher (Marijke Span) explained to the participating case managers how to use the
Second, the principal researcher visited the people with dementia and their informal caregivers who had initially consented to getting acquainted at home, where they received the explanation of the study, the iPad, and the
Third, the principal researcher made new appointments with all the participants for the first interview cycle. During the visit, the participants could also discuss anything that was unclear, as well as any errors or mistakes in using the
Fourth, at the end of each interview in the intervention period, the participants were given ample opportunity for small talk, and the researcher expressed and emphasized the importance of their participation and information. As most participants were interested in the results of the field study, preliminary results were shared with them after the interview.
The principal researcher was on stand-by during office hours in the intervention period. The participants could contact the principal researcher by phone or email if questions or problems arose.
The data collected (Table
Research question 1 | Research question 2 | Research question 3 | |
---|---|---|---|
Interview at |
X | ||
Interview at |
X | X | X |
Interview at |
X | X | X |
Observations | X | X | X |
Information in tool | X | ||
Field notes and memos | X | X | X |
The structured interviews lasted from 45 to 75 min. They were carried out at the beginning (
The interview topics at
The interview topics at
At
The IT skills were measured with a self-developed instrument. The topics were the devices participants used, the programs they used with the devices, and a self-estimation of their IT skills. Decision-making was measured with a self-developed interview guideline that was based on existing measures about decision-making: decision self-efficacy, decision regret scale, and decision conflict scale (O’Connor,
The principal researcher observed four case-manager visits with people with dementia at home. The attendees of these visits were people with dementia, their spouses, case managers, and in one case, two children as well. The visits lasted 60–90 min. The observations focused on verbal and non-verbal communication, the atmosphere, and the role and meaning of the
All participant activities were logged in the
During the pilot study, the principal researcher took field notes at the home visits and, for case managers, at work. She produced salient memos about what happened and about participants’ problems and questions while using the
To answer the three research questions, we used qualitative content analysis to analyze the interviews, observations, information logged in the
All participants gave their written informed consent. Special attention was paid to the informed consent of the people with dementia, the most vulnerable group in this study. Our investment in their ongoing consent included reserving time for social talk to get to know them, checking that their consent was still valid during the pilot study, and giving positive affirmation by emphasizing the importance of their contribution (Murphy et al.,
Three of the six case managers we reached agreed to participate. In the opinion of the case managers, the reason for non-participation was the lack of dementia-care networks who could or would participate and use the interactive web tool. The three case managers selected six care networks, of which four care networks completed their participation in the 5-month field study. The care networks included 4 people with dementia, 12 informal caregivers, and 3 case managers (Table
From the two dropouts, a daughter of a person with moderate dementia who had been willing to participate canceled their consent and participation. She believed that her mother was unable to participate, that it would be too difficult for her because she had no experience using a computer, and that participation would confuse her. In another selected network, the spouse of the person with dementia canceled their participation 2 weeks after starting the field study. The condition of the person with dementia deteriorated to such an extent that relocation was necessary, and the spouse’s burden increased to such an extent that they refrained from participating. Moreover, their daughters were not as enthusiastic about their participating as the spouse had expected.
Characteristics | Participants ( |
||
---|---|---|---|
People with dementia ( |
Informal caregivers ( |
Case managers ( |
|
Gender | 3 Male | 5 Male | 0 Male |
1 Female | 7 Female | 3 Female | |
Age in years | 72–82 ( |
19–86 ( |
40–62 |
Educational level |
1 Low | 1 Low | 0 Low |
1 Medium | 4 Medium | 1 Medium | |
2 High | 6 High | 2 High | |
Type of dementia | 2 Alzheimer’s disease |
||
Reisberg scale | 2–4 | ||
Marital status | 4 Married | 10 Married |
|
Relation to person with dementia | 4 Spouse |
||
Experience as a case manager in years | 3.3–4 | ||
Electronic equipment (computer, laptop, tablet, smartphone) | 2 Computer | 6 Computer | 3 Computer |
2 Laptop | 9 Laptop | 1 Laptop | |
1 Tablet | 8 Tablet | 3 Tablet | |
0 Smartphone | 8 Smartphone | 3 Smartphone | |
Software and networks used (Word, Excel, Power Point, Email, Internet, Social media) | 2 Word/Excel/Power Point | 10 Word/Excel/Power Point | 3 Word/Excel/Power Point |
3 Email | 10 Email | 3 Email | |
1 Internet | 11 Internet | 3 Internet | |
0 Social media | 7 Social media | 2 Social media | |
0 Gaming | 4 Gaming | 2 Gaming | |
Assessment of one’s own IT abilities (excellent, good, moderate, or poor) | 0 Excellent | 4 Excellent | 0 Excellent |
1 Good | 2 Good | 2 Good | |
1 Moderate | 4 Moderate | 1 Moderate | |
2 Poor | 2 Poor | 0 Poor |
Of the remaining networks, network 1 consisted of four people: a person with dementia living independently with a spouse, a younger sister living nearby, and a case manager. Network 2 consisted of five people: a person with dementia (who was already using an iPad) living independently with a spouse, two sons (one nearby and the other at distance), and a case manager. Network 3 consisted of six people: a person with dementia living independently with a spouse and a son, a son and daughter at a distance, and a case manager. Network 4 consisted of five people: a person with dementia living independently with a spouse, two daughters (one nearby and the other at a distance), and a case manager. Table
Two people with dementia were very motivated to participate, and they appreciated the researcher’s regular visits. In their opinion, dementia research is very useful; it is important to generate more knowledge about dementia. Both their spouses were more reluctant, and they participated only because their spouses were so motivated. The other two people with dementia were less outspoken about why they participated, although they mentioned communication as an item to be improved. In these networks, the people with dementia needed more time to express themselves because they had speech problems. Their spouses did the speaking most of the time.
The findings resulting from the analysis of the user friendliness of the
The ease of use of the
The
A little difficult, in spite of my past experience with computers. I do have trouble with my memory. Logging in is too much effort for me, too much energy. But of course it has to be safe. (R1, person with dementia (pwd))
In general, practical and easy. Self-explanatory. Deciding together is the most difficult part. Easy way of making contact. Everybody can do it at the times that suit them. (R7, case manager (cm))
Technical failures influence the user-friendliness experience of a tool. The technical failures that occurred during the field study concerned lost messages and a temporary non-access to the
Functions that have not yet been included in the tool, but which participants would like, and which influence the sense of user friendliness are “nice to haves.” One “nice to have” that case managers and informal caregivers suggested was a notification at the
Add notification of new activity. By email or on the app itself, like Facebook does. It would encourage people to react to each other. (R19, informal caregiver (ic))
More things could be added to the tool, for example, connections to client registration systems and domotica. (R7, cm)
Participants 70 years of age or younger were very well able to use the
One case manager stated that the tool was too difficult to use from the perspective of the person with dementia because the estimated level of functioning of people with dementia was too high in this study. The people with dementia said that it took a lot of their energy, that they needed to get used to it, and that it took time.
I do have trouble with my memory. If I were younger, it would have been a very handy thing for me. (R1, pwd)
Older people have to work very hard to get used to a tablet, even if things go well in the pilot study. Older people have to keep on using the iPad and the tool, otherwise they lose the skill. (R7, cm)
The most important hindrance is that it is more difficult for people older than 80 years than I had thought. (R9, ic)
Most participants older than 70 years needed time to learn to get access to the tool and send a message. This improved with practice. They tried to use the
Most of the participants used the
I think not, it’s not in my system. (R6, ic)
I don’t use it enough. Don’t really need it. But would need it if the dementia gets worse. (R11, ic)
There is too little activity, and then you don’t use it as much. (R5, pwd)
Nice to see how people do their best to work with the tool, and to master the art of using the iPad and the tool. (R7, cm)
Among the 19 participants, 3 informal caregivers from different networks did not participate actively. One older informal caregiver lacked any interest in IT, one young informal caregiver felt that he did not need the tool because he was still living with his parents, and another informal caregiver, although initially very enthusiastic, did not really participate. No reason for her inactivity could be determined because this participant did not react to any email or phone calls. The network members recognized this behavior in their family life.
All participants valued the tool positively, despite the low frequency of their use. They liked the easy way of communicating within the network, and they said that it was a handy tool for that. Nevertheless, some informal caregivers stated that they did not yet need such a tool, despite the benefits. They felt that this might change if the condition of the person with dementia became worse and more problems occurred. People with dementia found the
In general, valuable and useful! Especially for me and those around me. A little group conversation is useful. Easy to use for solving problems. It was good to be able to speak freely. A lot of contact with the case manager too. The tool has to be used regularly, otherwise it fades away. The tool suits me well so far. It will become more difficult in the future because of my memory. (R5, pwd)
The tool is interesting as a lovely aid to have conversations with each other. Otherwise it is not so easy to talk about things. It has a low threshold for starting a conversation. (R8, ic)
The tool can be valuable if you can get things off your chest. Using the tool was good. I had less need of it. I’m not in that phase yet. It would have been a lot more helpful to me when the person with dementia had a stroke (a year or a year and a half ago). Now I don’t have any burning questions that I need help with. (R15, ic)
It’s a real plus that the person with dementia takes part. It is a pleasant way of consulting each other. It’s easy to use and you can use it in your own sweet time. It is more accessible than email. (R7, cm)
Valuable tool, I see that now more than in the beginning, especially now that I am not using it (due to personal circumstances). I miss it. A pity that he doesn’t continue. Informal caregivers can let off steam with it. (R13, cm)
The
It would be nice to use deciding together more often, especially after the questionnaires have been answered. It organizes one’s thoughts, but there is no step after that, about how to continue. (R19, ic)
The questionnaires about the eight dementia-related life domains helped informal caregivers with a structured analysis of problems, and they appreciated the individual aspect of the questionnaires. Moreover, they were very interested in the opinions of the other network members. People with dementia liked having their answers in the questionnaires visible; it was handy because of their memory difficulties. Case managers appreciated the questionnaires because they showed all the opinions in the networks. It helped them prepare the home meetings.
The tool structures your thoughts and lets you look and think more broadly. It’s a good thing that you answer the questionnaires individually. Though I would like to know what the others and the person with dementia say. But privacy is a very valuable thing. (R4, ic)
It adds something. A good supply for the process. Handy to have all the opinions beforehand. Then you can get deeper into a conversation. (R7, cm)
But if you are forgetful, it is great. (R1, pwd)
The participants had two concerns about using the
Sometimes the questions are too difficult. I’m not such a talker. I keep some things to myself. Sometimes I don’t know what I think of things. I just try to be myself. (R14, pwd)
I’d rather do fun things than answer ‘difficult questions’. It’s confronting. (R11, ic)
Four themes emerged from the participants’ appraisal of the
The informal caregivers and case managers reported that the
The tool did not help directly, but it did indirectly because we were concerned with all the elements. We just didn’t do it via the tool. Family conversations and the telephone were quicker and better. (R9, ic)
The tool does help in the various decision phases and in moving toward a decision. The decision itself occurs mainly in oral conversation. (R17, ic)
The tool certainly helps with the various parts. Only not all of them. (R19, ic)
The tool did ensure that we got talking to each other – because of the questions. The decision-making took place outside the tool. It speeded up. (R11, ic)
The tool was sometimes used to make decisions and sometimes not. It also happened partially in a conversation. (R7, cm)
All the respondents appreciated the short, direct communication lines with the network members and the case manager. Their opinion was that the
It is pleasant to have a direct communication line. It is also handy that other family members can join in. (R13, cm)
It does improve communication and includes parties at a distance. (R8, ic)
Using the
You work in a structured way to get to a decision. (R9, ic)
You think more precisely about what’s going on in reference to the questionnaire. The person with dementia has to think about what she wants in order to type it in. Become more aware. Problems are observed by the case manager. (R4, ic)
The DecideGuide did help me think about the questions that were asked. Sometimes that was good. Sometimes not so good (can’t think of an example at the moment). You become more aware of yourself. (R14, pwd)
The tool gave me suggestions. The preparatory work went through the tool and the joint decision took place in a conversation at the table. (R11, ic)
In the case managers’ opinion, they were overall more aware of the decision-making steps and this awareness helped them, although they did not always record the results of the steps in the
In general, the tool works supportively. It helps in the process (the landscape you have to walk through) towards a decision. You do have to be able to reason further yourself. It is remarkable and peculiar that I miss the tool, now that I have not used it for a while. (R13, cm)
The deciding together function with questionnaires is great. Only I have not used the steps and phases well. I do the steps, but not consciously; I don’t write them down. (R7, cm)
The questionnaires with examples about dementia-related problems helped informal caregivers map out the options. The case managers were pleasantly surprised at the different opinions that arose from the completed questionnaires and at the conclusions. The answers led to valuable information. People with dementia noted some restrictions. They did not want to expose all their thoughts in the tool. Sometimes they preferred the telephone and sometimes they kept things to themselves.
Questionnaires provide a lot of information. They open the conversations. As a case manager, you can use them to prepare a talk well. It worked well. You can always get it again because it’s in the system. Because of the questionnaires other things and ideas came forward. (R3, cm)
But not your innermost thoughts. Then I phone. (R1, pwd)
But I don’t want to talk about everything. Some things you keep to yourself. (R15, pwd)
The main point of improvement was in the steps of the
Handy. Organizes the thoughts (questionnaires). But how to continue? That’s left up in the air. What we do after that is not entirely clear. (R19, ic)
In this study, the The participants thought that the The participants appreciated the The
The
In the context of serious illness, Epstein and Street (
Our findings show that the
Nevertheless, ethical values can be risked when assistive technology is implemented in the home environments of older people and people with dementia (Zwijsen et al.,
Some people with dementia tried very hard to learn to use the tool; they had a strong intrinsic motivation to participate. Such motivation is a key factor for the successful use of the tool and should therefore be cherished. Researchers should focus on how they can help people with dementia use IT tools like the
Lindqvist et al. (
Lindqvist et al. (
In our study, two of the four people with dementia and three of the four spouses were enthusiastic and motivated to learn to use an iPad and the
Our study initially achieved three of Lindqvist and colleagues’ four significant decisions for helping older adults and people with dementia become users of assistive technology. Later on, our study only succeeded in evoking one of the four significant decisions: to become a user. More attention should be paid to the other three decisions: how routines in daily life really can be adjusted, how to promote ongoing trust in the assistive technology, and what increases their sense of ability when people are using the assistive technology.
This study has some methodological limitations. First, a small and select but diverse sample was involved. Only four of the six care networks that initially consented to participate actually did participate and complete the 5-month field study. Second, the field study started in the summer. This delayed several informal caregivers who were late starting due to holidays. Third, although we tried to achieve diversity in the care networks beyond some diversity in age and gender, all our people with dementia were community dwelling and lived independently with their spouses. There was some diversity in informal caregivers regarding gender and living distance. Nevertheless, the strength of this study lies in its thorough and in-depth approach, the participation of all intended target user groups, the time that was spend to get familiar with the older participants, and the rich data provided by participants and diversity of data collection.
In a 5-month pilot study people with dementia, their informal caregivers, and case managers used the
Most participants appreciated the
All authors contributed to the study design. MS supervised the data collection, analysis, and interpretation, and wrote the initial draft of the paper. LG, JJ, RJ, MH, and CS contributed to the data collection, analysis and interpretation of data, and commented critically on the work. CS, MH, MV, and JE critically revised the paper.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
The Dutch Foundation Innovation Alliance [SIA RAAK (Regional Attention and Knowledge Circulation) PRO], Zorgpalet Hoogeveen (Residential care organization for older adults), and Windesheim University of Applied Sciences funded this study.