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A peer-reviewed article of this preprint also exists.
This version is not peer-reviewed
Submitted:
18 January 2024
Posted:
19 January 2024
You are already at the latest version
I would like to influence the way nurses learn and practice dementia care [93011072, Educator].
I would like to help change the attitudes of some carers and give them a confidence boost and help them with their knowledge [81126963, Practitioner]
“Dementia is also a very important disorder that is on the rise, you know, like, more and more elderly patients are having this disorder and because of that I think, yeah, we should be really into understanding more about dementia, learning more about dementia and all that”. [P4-01-01].
“It is just a very small, small, minute part of the curriculum which, by the time the student becomes the staff, they would have forgotten, they wouldn’t even sometimes remember I feel”. [P4-01-01].
“We are used to like monotonous resource person going on and on and sometimes very few programs have some participation, but there is no variety in the program, you know, live program”. [P5-01-01].
“I don’t know how familiar you are with nursing curricula but they’re always very challenging to get everything into a relatively short period of time, three years is never long enough”. [P7-01-02].
“The system that we use for our staff …you log in by yourself, you watch twenty plus videos and after each video clip you have a multiple-choice question…its quite basic”. [P9-02-02].
“I’ve been a caregiver for last 20 years now to my in-laws and three years ago my mother-in-law suffered a stroke and then she had an onset of dementia…and also at [workplace] we focus a lot on senior citizens care, that is one of our main areas of work, so, I thought both professionally and personally this is going to give me a lot of insights”. [P8-02-01].
“As an educator, always keen to try to enrich any students learning and, so, ……it was really good to sort of develop my own learning and understand things that are really helpful in others, in helping others to learn as well, you know, around dementia”. [P7-01-02].
“I just found them really helpful and the fact that you can then revisit things because, you know, because my memories good at some points but others it isn’t… being able to revisit it and you could download some of the pages from that…which again was just helpful”. [P7-01-02].
“Seeing videos like that, you’re seeing it from the other person’s point of view…I understand now that they can’t help it, you know, it’s confusing for them”. P9-02-02.
“I don’t think you learn in the same way when something is strictly online…a topic like dementia is about people, and you almost want to test out, sort of, you know, your own learning with others”. [P7-01-02].
“Like it says like ‘none of us is smarter than all of us’, so, it’s like the years of wisdom comes in a room and all that, all those years of experience and learning, so that was very rich”. [P1-01-01].
“Lived experiences of people was more encouraging and practical and to learn from their life experiences, so that was very good and that was really touching our hearts”. [P5-01-01].
“I just thought she was amazing, so much passion, and you could tell that she loved making the lives better for the people that they had living with dementia, and it was just, yeah, it was heart-warming”. [P09-02-02].
“We had lots of opportunities to understand our perspectives as well as other perspectives, like it was a platform for us to introspect whether our understanding or our perspectives about dementia is right or what else I can look for when it comes to the care of patients”. [P6-01-01].
“I think that is just a fact of, you know, learning this way…obviously we encounter it all the time…there’s usually somebody who’s quite vocal, somebody else is trying to talk, but because you can’t see them you aren’t really aware of that, so that to me was probably a drawback”. [P7-01-02].
“We did have challenges using Webex because many times our people were not able to join, we are so accustomed to Zoom, that was the first time I think many of us were using Webex”. [P5-01-01].
“It was actually perfect blending or perfect package of all three components, like all three domains of teaching, affective, cognitive, and psychomotor…so, it’s a perfect blending of all three domains of teaching”. [P6-01-01].
“I was able to take away much from the class because I was able to read and then come to the class, otherwise I don’t think it would have been so much of beneficial to me”. [P8-02-01].
“We can go over and over whenever we have a doubt, we can go back and learn from them, so the freedom to access that has been given to us…that is a positive thing”. [P5-01-01].
“Because this sort of fell during the pandemic, you know, we were adapting to online, you know, very quickly anyway…we were getting so familiar with the way that we were teaching anyway”. [P7-01-02].
“I have learned on how to be…an empathetic caregiver… an informed caregiver”. [P8-02-01].
“Earlier, it was not in my thinking, or it was not in part of my internal function, to think of something like this… to wonder if a person could have dementia”. [P1-01-01].
“On the last shift I did, I actually was in a bay, you know, with six ladies and one of whom, you know, did have dementia, so, you know, constantly I was just going back, you know, reiterating what I’d said, holding her hand and everything else and it was only when I was going back to another lady and they went ‘oh we’re going to have a quiet day today’ and I said ‘oh, have things been, you know, disturbing you?’ and she said, ‘yes’ she said ‘that’s the most attention she’s had since we’ve been here’. [P7-01-02].
“There was something I learned, it was so profound, I put it on my social page…it was nice that some of the people within my friends circle who saw that, they replied back, and they told that, thank you so much it was a very good information and because they have somebody in their family who are living with dementia”. [P4-01-01].
“It was a particularly big blessing for me because I’ve written like some modules on elderly care, so I could apply this into that, and see, these modules and curriculum that we’ve designed is being used to train primary health level workers, nurses across India”. [P1-01-01].
“I think it should be rolled out everywhere, I think it should be like teamed up with the NHS, I think it should be done with all new staff starting, even old staff…. I think it would be a fantastic program to roll out”. [P9-02-02].
“I started to read articles on dementia related to India and South Asian countries, I found that there were very few nursing related articles, so, a colleague and I decided to conduct a small study and we’re in the process of doing that”. [P3-02-01].
“We want this to be given again and again with some other changes or a kind of recap, recapitulation, or kind of refresher course, we want this to be at least once a year or twice a year … I feel that it has to be refreshed” [P6-01-01].
“The context was good, but I think some of the tools which are available for people in probably UK settings are not available for people here, for example, like, xxxx shared about having a community of people with dementia and community helping each other so, we don’t have that kind of a network here”. [P8-02-01].
“For Northern India must have to think about the Hindi language and their perspectives, and South India might have to think a little different…like that, we might have to add a few videos or something… so that it feels that, yes, it is our own problems here and it is what our people are going through”. P5-01-01.
Asynchronous | Synchronous | |||
---|---|---|---|---|
Workbook | Session | Duration | Facilitator | |
Introduction to DEWE and Workbooks | 1 | 30 mins | 1 | |
1.Dementia Care Essentials | The Human Brain | 2 | 1 hour | 1 |
Dementia: What it is and what it is not | 3 | 1 hour | 1 | |
Memory Changes in Dementia | 4 | 30 mins | 1 | |
Sensory Changes in Dementia | 5 | 30 mins | 1 | |
2.Dementia Care Priorities | Living with Dementia: Person-centered approaches | 6 | 1 hour | 1 |
Stages of the Dementia Journey (Barbara’s Storya) | 7 | 3 hours | 2 | |
Carer’s Perspectives in Dementia | 8 | 1 hour | 3 | |
Stress & Distress in Dementia | 9 | 1 hour | 1, 4 | |
Dementia, Delirium and Depression | 10 | 2 hours | 2 | |
3.Dementia Care Enablers | Staff: Self-care and wellbeing during COVID-19b | 11 | - | - |
Dementia & COVID-19 in Care Homes | 12 | 1.5 hours | 5 | |
Implementing Change and Improvement | 13 | 1.5 hours | 5 | |
Dementia Inclusive and Enabling Environments | 14 | 2 hours | 1, 6 | |
End-of-life care in Dementia | 15 | 2 hours | 1 | |
Relationship-centered Approaches to Dementia Care using the Six Senses Framework | 16 | 2 hours | 1 | |
N | % | |
---|---|---|
Educators | 17 | 50.0 |
Associate Professor | 5 | 14.7 |
Nursing Tutor | 3 | 8.8 |
Lecturer | 3 | 8.8 |
Assistant Professor | 3 | 8.8 |
Professor | 3 | 8.8 |
Practitioners | 9 | 26.5 |
Senior Carer | 4 | 11.8 |
Carer | 3 | 8.8 |
Manager | 2 | 5.9 |
Other | 8 | 23.5 |
Total | 34 | 100.0 |
Enjoyed most | Enjoyed least |
---|---|
1. Group discussion and interactivity | 1. Technical issues/videoconferencing platform |
2. Course presentation/expert facilitation | 2. Difficulty coordinating attendance |
3. Reflective activities | 3. Duration of interactive sessions (too long) |
4. Workbooks | 4. Duration of interactive sessions (too short) |
5. Use of real-life stories and examples | 5. Lack of participant interaction in break out rooms |
6. Videos | 6. Reflective activities |
7. Structure and content (general) | 7. Overall course duration (too short) |
8. New knowledge | 8. Digital skill requirements |
9. Technology-enabled/blended approach | 9. Technology-enabled delivery mode |
10. Convenience |
Learning Outcome | Median (IQR) |
---|---|
The Human Brain | 5 (4,5) |
Dementia: What it is and what it is not? | 5 (4.5,5) |
Memory Changes in Dementia | 5 (5,5) |
Sensory Changes in Dementia | 5 (5,5) |
Insights on Living with Dementia: Person-centred approaches | 5 (5,5) |
Barbara's Story | 5 (4,5) |
Carer’s Perspectives in Dementia | 5 (5,5) |
Stress & Distress in Dementia | 5 (5,5) |
Dementia, Delirium & Depression | 5 (5,5) |
Dementia & COVID 19 in Care Homes | 5 (4,5) |
Implementing Change and Improvement | 5 (4,5) |
Dementia Inclusive and Enabling Environments | 5 (4,5) |
End of Life Care in Dementia | 5 (4.25,5) |
Relationship-centred Dementia Care using Six Senses Framework | 5 (4,5) |
Reflective Activities in Workbook 1: Dementia care essentials | 5 (4,5) |
Reflective Activities in Workbook 2: Dementia care priorities | 5 (4,5) |
Reflective Activities in Workbook 1: Dementia care enablers | 5 (4,5) |
Participant number | Area of practice/expertise | Location |
---|---|---|
1 | 01 | 01 |
2 | 01 | 01 |
3 | 02 | 01 |
4 | 01 | 01 |
5 | 01 | 01 |
6 | 01 | 01 |
7 | 01 | 02 |
8 | 02 | 01 |
9 | 02 | 02 |
Knowledge Aspect | Quote |
---|---|
Types of dementia | “We learned that there is like 200 different types of dementia…I had no idea, and I’ve got twenty plus years’ experience, like, in health and social care”. [P9-02-02]. |
Neurophysiology | “The role of hippocampus…so what is the difference between normal ageing and dementia, especially when we talk about memory changes…that is what is more important to know”. [P6-01-01]. |
Stress & Distress | “I really learned from this course…like analyzing a situation using the ABC chart…when something happens”. [P5-01-01]. |
Delirium | “Particularly in my clinical role, you know, in acute trauma, being able to identify things like delirium is so helpful, so those tools were really good”. [P7-01-02]. |
Person-centered care | “I have learned tools on how to handle different situations and how to understand why the person is behaving in a certain way and therefore how you kind of adapt your care to suit that person’s needs”. [P8-02-01]. |
Relationship-centered care | “I really liked the six senses approach, I thought that was really, really useful”. [P7-01-02]. |
Care for caregivers | “I understood that not only people living with dementia that needs attention, but we have to pay special attention even to the carers of people living with dementia”. [P4-01-01]. |
Dignity & Respect | “Taking your time with people, never getting cross, and the fact that you might have to answer the same thing…you’re answering the same questions but doing so every time with patience rather than frustration can make a huge difference”. [P7-01-02]. |
Care environment | “I remember some of the classes where they said how does the environment impact a person living with dementia, so, I think even the environment also is very, very important, the type of environment that we create around these people”. [P4-01-01]. |
Care empathy | “It can be very frustrating to have dementia and to place ourselves in their shoes, like some of those case studies we looked at, and listening to the various talks, that really helped me”. [P1-01-01]. |
Strengths | Areas for development | ||
---|---|---|---|
Satisfaction | |||
Asynchronous | High quality resources | Consider cultural adaptations | |
Easy to use | Provide more assessments | ||
Time for learning | Improve placement of videos | ||
Learning on demand | Improve quality of resources in print form | ||
Active learning | Update content regularly | ||
Real-life videos | Consider strategies for learner motivation | ||
Preparation for synchronous sessions | |||
Synchronous | Interactive | Include interactive icebreakers session | |
Active learning and reflection | Discuss/mitigate technical issues | ||
Diversity of participants | Discuss/mitigate poor online etiquette | ||
Includes dementia experts | Optimize session duration | ||
Includes people with lived experience | Optimize delivery platform | ||
Provides expert facilitation | Include more discussions on actual cases | ||
Consolidates asynchronous learning | Provide follow-up sessions | ||
Bichronous | Highly rated | - | |
Mutual learning between resources | |||
Ongoing access to resources | |||
Relevance post-COVID-19 | |||
Learning | New knowledge | - | |
New skills | |||
Positive attitudes | |||
Behaviors | Positive behavior change | - | |
Results | ↑ Dementia awareness | - | |
↑ Knowledge transfer | |||
↑ Development of educational resources | |||
↑ Engagement with dementia education | |||
↑ Engagement with dementia research | |||
Dissemination of DEWE (wider audience) | |||
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Leah Macaden
et al.
,
2024
Patricia Masterson-Algar
et al.
,
2023
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