Using an Empathetic Approach to Explore Technology Readiness and Needs for Digital Services to Assist People with Dementia
Abstract
:1. Introduction
2. Materials and Methods
2.1. Population and Setting
2.2. Recruitment
2.3. Data Collection
2.4. Semi-Structured Interviews
2.5. Empathic Approach
2.6. Data Analysis and Codebook
2.7. Ethical Considerations and Informed Consent
3. Results
3.1. Self-Management
3.1.1. Impact of Condition
P1: “Yes, but when four people are talking at the same time, it’s a problem. Because you want to answer them all, but you can’t”.
EM: “Do you get frustrated with the sound?”
P1: “Yes, I don’t feel I can follow what’s going on, that is fucking annoying”.
EM: “How do you feel when there is a lot of noise?”
P1: “I usually go”.
EM: “So how do you think your general health is?”
P4: “Yes, I am very satisfied”.
P5: “No, not at all. Well, I have no health problems. I have not. Both health and mood. I have no problems with that”.
EM: “So it doesn’t matter much to you?”
P1: “No, I kind of don’t care”.
IC1: “No, you like that when you get lost, you can get in touch with me”
P1: “Yes, that’s right”.
3.1.2. Capabilities and Resources
P1: “Well, I can’t coordinate them anymore, the numbers. They are not quite as good as they used to be”.
IC2: “I would say that he has difficulty finding the words. He couldn’t explain what he meant. It was something with one foot, the carpet, or something? He finds it difficult to express himself, sometimes”.
P6: “What am I listening to? Radio, television. Then I see what is happening today. But otherwise, I don’t see much. I don’t sit and watch movies and such. I can’t do that anymore. That is also okay”.
EM: “So that’s also why you play Yatzy with animals on it, it’s easier than having numbers?”
P1: “Yes, pictures, are better”.
IC1: “All those numbers, ugh, it’s difficult. But when it’s animal yatzy… But we have fun with it anyway”.
EM: “What did you do last year?”
IC1: “He could cycle there himself, he could cycle well there”.
P1: “I could take the bike there”.
EM: “So it’s within the last year [P1 can’t ride a bike]?”
IC1: “Yes, the last year and a half”.
P1: “Yes oh, yes yes. I’m not that good at finding my way anymore”.
EM: “So there has been a change in his condition here in the last few months?”
IC2: “Yes, there is that too. As P1 also said here the last time, we were together, P1 could feel the difference between Christmas and now”.
EM: “Would you rather be at home or the activity home?”
P1: “I’d rather be in the activity home, where I do activities, it does a lot. I love going for walks”.
3.2. Social Support
3.2.1. Role of Individual Support
P3: “He calls every morning and wishes me a good day. Good son I have, and daughter-in-law. We have always been friends, and she comes with us when we travel”.
P6: “My daughter, she lives here somewhere. Her children have left home. They live in Copenhagen. They come to visit me. They are nice to that”.
IC2: “I also stand and direct him and help him remember various things when he stands there. Then he stands there and puts water on his body and I say that he must also remember to wash his body, remember to put soap on, wash his hair, and rinse his hair. He forgets that he has to do one thing and the other”.
IC1: “He asked about everything and then he [the doctor] got mad at me because I answered. I said, well, he can’t remember it himself. Well, if I couldn’t resist answering, I could go out. Then I thought, what the hell is he thinking? Are you sure it won’t get better? [asked the doctor], then I thought no, I can’t do this. No, but you’re a doctor and you ask if Alzheimer’s is getting better, right? Then you give up a little, right?”
IC1: “But to think that you have to sit and be afraid to call for something like that. Isn’t that terrible? I feel like a real chicken, it’s not because I’m afraid to call, I’m afraid of the answer”.
IC1: “He would not voluntarily be social today, he would very much like to sit in here and watch television all the time, if it was possible. And he could do that too, then I could sit here and wait, then it wouldn’t be many years before he could do nothing. So, I have to force him or push him into situations”.
EM: “But P1, in your everyday life. What do you think is best and what do you think is most difficult? Is there something that annoys you?”
P1: “I don’t know right now… I can’t figure it out”.
IC1: “Can I help you?”
P1: “Yes, you may”.
IC1: “What annoys you, I know that, and that’s why I don’t do it when you’re home. It’s all that crafty stuff that you’ve always been good at. If someone comes and helps me/us with it when he’s at home, he can’t! Because ‘I can do it myself, let it be’ [says P1], but he can’t do that anymore”.
IC2: “If he was here, he would ask what was going on and sit restlessly during the whole conversation and I would calm him down when you leave. Yes, then I thought I would rather be here myself”.
3.2.2. Community Support
P1: “Even though I had that string on. As you get for those with Alzheimer’s”.
IC1: “He has it around his neck like that, but it doesn’t help when people don’t know it”.
IC2: “It’s because his filter disappears. After all, he can also say to people, ‘Oh, you’re fat’. He was very police-like at first, not in front of people, but when we were standing at the pedestrian crossing, he said, ‘No, he must not cross, and he must not cycle there’. It was more to me that he said it, but I can’t run the risk that he will suddenly start saying it to people. He has the hand symbol of dementia on him, but no one knows that”.
EM: “How do you feel about people knowing you have dementia, is it nice?”
P1: “Yes, it’s quite nice, I don’t take it too seriously. Then people know it”.
IC1: “I’d actually rather they know that than they don’t know that. Instead of them walking around and thinking, shut up, he’s a strange man”.
P1: “Yes, instead of what kind of person is he, messing around and standing there”.
IC2: “So last year, he got that sunflower string. He was also wearing it when we came over to the Memory Clinic. There he [the doctor] also said that it was good that he was wearing it. Yes, I then said, because no one knows the other. No, he knew that well”.
EM: “Do you feel that people pay attention?”
IC2: “Both yes and no. But there was also someone who freaked out completely. We stood in line, so I told P2 that he could just go down at the other end and start packing. I don’t know what P2 said, but it wasn’t anything like that serious, but he completely freaked out. He asked if he was stupid. I also said, the man is demented, and he actually runs around with a sunflower string”.
3.3. Digital Health Literacy
Role of Technology
IC1: “I have never been good at computers. I bought a new one as I had to use it and we have never been good friends. Never ever”.
P3: “No, I don’t have a computer here. It is with my son. I can get it here, but I have nothing to use it for”.
P4: “Computers are a completely closed country for me”.
P6: “No, I haven’t. Because I was a hairdresser, so I didn’t work with computers. It is also after my time”.
P5: “Yes but, sometimes via friends and yes… acquaintances and colleagues for example”.
EM: “Is it like talking to them, through technology?”
P5: “Yes”.
EM: “You’re borrowing a phone here, aren’t you?”
P5: “Hmm no, I talk to them purely telegraphically”.
IC2: “No, not actually. After all, I still have my landline and it’s partly because of him that I have it too. When I’m out or something, I’ve called to say I’m on my way home. I have used the landline there. Well, he can easily figure out how to take it. He doesn’t have to do anything other than pick up the phone, he is also used to that telephone from his time”.
IC1: “He cannot learn new things. He can do it a little bit, the taxi thing. But in the beginning, it was very difficult. It really needs to be hammered in 1000 times”.
P1: “He [friend] is good at electronics and such. The rest of us are no longer like that”.
EM: “So it’s more small things?”
P1: “Yes, I can’t figure that out, that’s right”.
IC1: “That’s also why it’s more difficult with the phone and the iPad and things like that”.
EM: “So the thing about sitting and pressing small things (e.g., buttons), how is it?”
IC1: “Yes, phew..”.
P1: “Yes, it’s not so good. It was good before, but it is not anymore”.
IC1: “But the phone, you can see the movement more. Where the watch is, he’s standing there, and then boom, he’s over there. You can follow him completely on the phone”.
EM: “Okay, so you use a combination of both?”
IC1: “No, I use it. It is me. That watch, 1 can’t have contact with at all when he’s wearing it”.
EM: “P1, do you feel more secure?”
P1: “No, it makes my wife feel safe”.
4. Discussion
4.1. Principal Findings
4.2. Empathic Approach
4.3. Self-Management
4.4. Social Support
4.5. Role of Technology
5. Limitations and Strengths
6. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Participants | Gender | Age | Recruitment Method |
---|---|---|---|
Participant 1 (P1) | Male | 68 | Colleague referral |
Informal caregiver (IC1) | Female | N.R. | Colleague referral |
Participant 2 (P2) | Male | 74 | Community event |
Informal caregiver (IC2) | Female | N.R. | Community event |
Participant 3 (P3) | Female | 78 | Personal contact to nursing home |
Participant 4 (P4) | Female | 97 | Personal contact to nursing home |
Participant 5 (P5) | Male | 58 | Personal contact to nursing home |
Participant 6 (P6) | Female | 102 | Personal contact to nursing home |
Participant 7 (P7) | Female | 92 | Personal contact to nursing home |
Main Category | Subcategories | Code |
---|---|---|
Self-management | Impact of condition - heiQ4: Constructive attitudes and approaches - heiQ8: Emotional distress | - Affected by condition including well-being - Emotional reactions related to the dementia condition |
Capabilities and Resources - heiQ3: Self-Monitoring and insight - heiQ5: Skills and technique acquisition | - Attitude and mental coping with the condition - Insight and acknowledgment of limitations, as well as the ability to adhere to them - Lack of understanding of abilities, skills, and health - Treatment, aids, and techniques for managing condition-related symptoms and health problems | |
Social Support | Internal Support - HLQ4: Social support for health | - Limitations or challenges regarding support from family and friends - Emotional support or feeling understood - Practical support from family and friends - Social life |
External Support - HLQ1: Feeling understood and supported by healthcare providers | - Feeling understood, supported, and considered by healthcare professionals regarding help, guidance, and counseling - Challenges and limitations regarding trust and confidence in healthcare professionals and the system - Relevant services and respite options | |
Community Support | - Community support | |
Digital Health Literacy | Competencies - eHLQ3: Ability to actively engage with digital services - eHLQ6: Access to digital services that work - eHLQ7: Digital services that suit individual needs | - Competencies |
- Use and context of existing technology | ||
- Limitations or challenges related to technology | ||
Motivation - eHLQ5: Motivated to engage with digital services | - Attitude and motivation towards the use of technology |
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Share and Cite
Engblad, M.A.; Herstal, E.P.; Wegener, E.K.; Kayser, L. Using an Empathetic Approach to Explore Technology Readiness and Needs for Digital Services to Assist People with Dementia. Int. J. Environ. Res. Public Health 2024, 21, 1023. https://doi.org/10.3390/ijerph21081023
Engblad MA, Herstal EP, Wegener EK, Kayser L. Using an Empathetic Approach to Explore Technology Readiness and Needs for Digital Services to Assist People with Dementia. International Journal of Environmental Research and Public Health. 2024; 21(8):1023. https://doi.org/10.3390/ijerph21081023
Chicago/Turabian StyleEngblad, Mille Aagaard, Emilie Pind Herstal, Emilie Kauffeldt Wegener, and Lars Kayser. 2024. "Using an Empathetic Approach to Explore Technology Readiness and Needs for Digital Services to Assist People with Dementia" International Journal of Environmental Research and Public Health 21, no. 8: 1023. https://doi.org/10.3390/ijerph21081023