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Online research survey for improving the development of a wearable technology for dementia patients

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
Hi everyone,

I am Shahrooz Shahin a Research Associate in the Robotics Laboratory (School of Design) at the Royal College of Art. As part of my studies, I am conducting a research project entitled “Reminisys: A wearable technology created to help dementia patients to remember the forgotten names/objects, and locations," and the project is externally sponsored by MedTech Supper Connector (MTSC), led by Imperial College London.

In order to assess the product's viability and improve the design, we require the knowledge and experience of a dementia caregiver. Participation is entirely voluntary. If you agree to participate, you will be asked to share your experience and knowledge by answering some generic questions and making potential suggestions via a questionnaire. The aim of this survey is to assist our team in obtaining meaningful insights, understanding patient difficulties, and identifying potential areas for improvement.

Your survey response will be collected anonymously for the sole purpose of improving product development. If you are interested and choose to be contacted further, we can schedule additional feedback interview sessions as well as invite you or the patient to try the prototype when it is complete.
This survey will take approximately 5 minutes of your time.
Please refer to this link for direct access to the survey, as well as participant information and a consent form:

We encourage those who are interested to complete this survey and also forward it to others who may have suggestions.
We would love to hear your ideas and feedback on how to improve Reminisys!

Thank you in advance for taking the time to consider our research!​

Shahrooz
 
Last edited by a moderator:

kindred

Registered User
Apr 8, 2018
2,843
0
This member has permission to post regarding their research.
First of all thank you for your interest in dementia. please may I urge that whatever plans you have be considered in the light of the fact that dementia is not solely a memory problem. It is a behavioural problem and can be severe. Please do spend time in nursing homes for severe dementia and observe a number of patients.
Warmest, Geraldine
 

canary

Registered User
Feb 25, 2014
18,897
0
South coast
I am conducting a research project entitled “Reminisys: A wearable technology created to help dementia patients to remember the forgotten names/objects, and locations," and the project is externally sponsored by MedTech Supper Connector (MTSC), led by Imperial College London
This is a very laudable aim, but I agree with @kindred - dementia is far, far more than memory loss. All of the brains normal functions become skewed. Logic and understanding get lost as does the ability to "join up the dots".

As an example - Mum broke her wrist and had to wear a cast. Most people, even if they did not remember breaking their wrist would look at the cast, "join up the dots" and realise that they must have broken their wrist. Mum didnt. She forgot that she had broken her wrist, didnt recognise the cast and didnt understand why she was wearing it (she thought it was a punishment for using her left hand), so constantly tried to remove it. Every time she was told that it was a cast because she had broken her wrist, she was surprised, but there was no real understanding.

She also used to go out and get lost. I tried putting a tracker on her key ring, but she denied getting lost (even after people brought her home), did not understand what the tracker was, or why it was there and kept taking it off.

I just thought I would post these two stories so that you could see the limitations of people with dementia using technology. Quite often the technology will benefit the carers instead.
 

try again

Registered User
Jun 21, 2018
513
0
Wearable technology is always problematic. Could never convince my mum to wear a falls pendant
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
I have completed the survey but I have my doubts about this project. The fundamental issue is that to use any sort of assistive technology one has to remember to use it and remember how to use it. If there are buttons to be pressed, many people with dementia could not use it.

I bought a key finder device for my dad. It is useful to me, when I go there I can use it to help him find tagged items. However he doesn't remember to use it himself and the starting point is often a hunt for the transmitter.

Assistive technology can be valuable so long as it is passive in use, ie the PWD does not have to do anything, remember anything, or follow any instructions.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,342
0
Kent
Wearable technology is always problematic. Could never convince my mum to wear a falls pendant

My husband kept playing with his falls belt and pressing the button.

Sorry to be negative. Technology may be good for carers but few people with dementia would manage it.
 

Lawson58

Registered User
Aug 1, 2014
2,901
0
Victoria, Australia
The issue regarding memory is an important one. There is little point in ‘reminding’ someone of the name of something if they cannot relate it to its function. For example, it would seem pointless to tell a person that a particular item was a set of keys if they cannot understand what they are for or how to use them.

The same would apply to location. Getting lost is common for many dementia patients but telling them where they are doesn’t in any way relate to why they are lost in the first place or solve their immediate problem.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,437
0
High Peak
Admirable intentions and I wish you well.

But people with dementia need people around them, to do their thinking for them, not technology. Unless your technology understands dementia.
 

Sarasa

Volunteer Host
Apr 13, 2018
5,048
0
Nottinghamshire
I've done the survey. My mother wouldn't have used it as by the time it was needed she wasn't able to understand technology she wasn't familiar with as I'd tried to get her to use various things to help with her poor eyesight with no luck. She also thought there was nothing wrong with her and wouldn't have seen the need anyway.
 

jennifer1967

Registered User
Mar 15, 2020
12,775
0
Southampton
Hi everyone,

I am Shahrooz Shahin a Research Associate in the Robotics Laboratory (School of Design) at the Royal College of Art. As part of my studies, I am conducting a research project entitled “Reminisys: A wearable technology created to help dementia patients to remember the forgotten names/objects, and locations," and the project is externally sponsored by MedTech Supper Connector (MTSC), led by Imperial College London.

In order to assess the product's viability and improve the design, we require the knowledge and experience of a dementia caregiver. Participation is entirely voluntary. If you agree to participate, you will be asked to share your experience and knowledge by answering some generic questions and making potential suggestions via a questionnaire. The aim of this survey is to assist our team in obtaining meaningful insights, understanding patient difficulties, and identifying potential areas for improvement.

Your survey response will be collected anonymously for the sole purpose of improving product development. If you are interested and choose to be contacted further, we can schedule additional feedback interview sessions as well as invite you or the patient to try the prototype when it is complete.
This survey will take approximately 5 minutes of your time.
Please refer to this link for direct access to the survey, as well as participant information and a consent form:

We encourage those who are interested to complete this survey and also forward it to others who may have suggestions.
We would love to hear your ideas and feedback on how to improve Reminisys!

Thank you in advance for taking the time to consider our research!​

Shahrooz
it wont let me change my email address so the tech is not working and i havent got dementia
 

nitram

Registered User
Apr 6, 2011
25,514
0
North Manchester
it wont let me change my email address so the tech is not working and i havent got dementia
It's a google doc, so only understands gmail addresses, it should let you create a different one.
Although I have two gmail addresses I'm not getting tangled up in google doc and google drive.

EDIT
If not signed into google and you ignore requests to sign into google so you can save response it will let you proceed with an email address.
 
Last edited:

jennifer1967

Registered User
Mar 15, 2020
12,775
0
Southampton
It's a google doc, so only understands gmail addresses, it should let you create one.
Although I have two gmail addresses I'm not getting tangled up in google doc and google drive.
thank you nitram, that explains it. i think the survey has answered its own questions. no im not getting involved in google either
 

Rosettastone57

Registered User
Oct 27, 2016
1,748
0
All very admirable, but as others have said, technology will have it's limitations. My mother in law would not have remembered to use anything, if it involved pressing buttons, she couldn't remember to press her carelink if she fell, let alone anything introduced as a new appliance.
 

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
First of all thank you for your interest in dementia. please may I urge that whatever plans you have be considered in the light of the fact that dementia is not solely a memory problem. It is a behavioural problem and can be severe. Please do spend time in nursing homes for severe dementia and observe a number of patients.
Warmest, Geraldine
Hello, Geraldine @kindred

Thank you very much for your response and excellent point. Indeed, the primary goal of this research thus far has been to assist caregivers based on the needs of patients in earlier stages, and I understand that these functions may be useful in the early or middle stages of the diseases, but are unlikely to be useful in the severe phases. However, in the meantime, we are also very interested in investigating how we can use the technology in other ways to assist caregivers feel less stressed and less burdened during the severe stages as well as the early and middle stages.

In line with your excellent advice, I am also trying to form appropriate contacts in order to spend some time in nursing/care homes and learn more through direct interaction with them.

Thank you again for your comment, and any more advice or suggestions on what carers really need to minimise their workload would be appreciated.

Kind regards,
Shahrooz
 

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
This is a very laudable aim, but I agree with @kindred - dementia is far, far more than memory loss. All of the brains normal functions become skewed. Logic and understanding get lost as does the ability to "join up the dots".

As an example - Mum broke her wrist and had to wear a cast. Most people, even if they did not remember breaking their wrist would look at the cast, "join up the dots" and realise that they must have broken their wrist. Mum didnt. She forgot that she had broken her wrist, didnt recognise the cast and didnt understand why she was wearing it (she thought it was a punishment for using her left hand), so constantly tried to remove it. Every time she was told that it was a cast because she had broken her wrist, she was surprised, but there was no real understanding.

She also used to go out and get lost. I tried putting a tracker on her key ring, but she denied getting lost (even after people brought her home), did not understand what the tracker was, or why it was there and kept taking it off.

I just thought I would post these two stories so that you could see the limitations of people with dementia using technology. Quite often the technology will benefit the carers instead.
Hello @canary,
Thank you for your post and sharing so much of your experience.
We will surely benefit from all of this valuable comments. In agreement with your observation, and as I indicated in my response to Kindred, technology is more advantageous for caregivers and aims to reduce their workload, particularly for patients in the later stages of dementia.

We are also considering having the attached sensors/trackers be set up in some way so that they cannot be turned off or removed , and that they do not need to be activated by pressing any button.

Please let me know if you think of any other topics that would be helpful to you as a caregiver.

All of your knowledge and significant experience are highly valued, and we appreciate you sharing your advice and insights with our team.

Kind regards,
Shahrooz
 

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
Wearable technology is always problematic. Could never convince my mum to wear a falls pendant
Hi @try again,

Thank you very much for your feedback.
I see your point, as well as the potential issues of wearable devices for dementia patients and all older people. However, we are working to identify how we may make it more acceptable or tolerable for them.

Perhaps by making the device or sensor as small and light as possible, or by discovering the finest attachment solutions, they won't even notice that something is attached to them, which is bothering them in some way (mentally or physically).

However, I was wondering if you could tell me more about your mother's major complaint about wearing the falls pendant or any other wearable.

Kind regards,
Shahrooz
 

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
I have completed the survey but I have my doubts about this project. The fundamental issue is that to use any sort of assistive technology one has to remember to use it and remember how to use it. If there are buttons to be pressed, many people with dementia could not use it.

I bought a key finder device for my dad. It is useful to me, when I go there I can use it to help him find tagged items. However he doesn't remember to use it himself and the starting point is often a hunt for the transmitter.

Assistive technology can be valuable so long as it is passive in use, ie the PWD does not have to do anything, remember anything, or follow any instructions.
Hi @MartinWL
Thank you very much for your comment here as well as for taking part in the survey.

In light of what you've said, we're thinking about designing the device so that you don't have to press any buttons. It would be a combination of data gathered from the environment and people around the patient, combined with artificial intelligence algorithms, so the person with disabilities would not have to do anything.
On the other hand, this technology is likely to be more appropriate for dementia patients in the early stages of the condition, with the primary purpose of assisting carers and family members in reducing their strain and work loads (so far). However, we will take into account all of the valuable feedback from caregivers of patients in the severe stages and study how we may support that group in other ways.

Please let me know if you have any suggestions or insights for other issues that would be advantageous to you as a caregiver.

Kind regards,
Shahrooz
 

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
My husband kept playing with his falls belt and pressing the button.

Sorry to be negative. Technology may be good for carers but few people with dementia would manage it.
Hi @Grannie G

Thank you for your reply and posting here.
While considering and agreeing with this concern, we have already taken it into account by not including activation buttons or any potential for the device malfunctioning or being toyed with.

I agree that such technologies are mostly beneficial to caregivers and may only be functional for patients in the early stages. However, we use all of the caregivers' opinions and valuable suggestions to gain a better understanding and address other problems that we may have missed or overlooked.

I would appreciate hearing from you if you have any ideas or thoughts on any issues that would be beneficial to you as a caregiver.

Kind regards,
Shahrooz
 

shahrooz.shahin

Registered User
Jan 12, 2022
13
0
The issue regarding memory is an important one. There is little point in ‘reminding’ someone of the name of something if they cannot relate it to its function. For example, it would seem pointless to tell a person that a particular item was a set of keys if they cannot understand what they are for or how to use them.

The same would apply to location. Getting lost is common for many dementia patients but telling them where they are doesn’t in any way relate to why they are lost in the first place or solve their immediate problem.
Hi @Lawson58

Thank you for your reply and the informative explanation.

In agreement with what you've said, we've been thinking about designing the technology to solve some difficulties for patients in the early stages of dementia, and primarily, this technology is more advantageous for their caretakers in terms of reducing their effort and stress.
We will, however, consider all of the useful comments from carers of patients in the advanced phases and investigate how we may serve that group in different ways.

Please let me know if you have any feelings or opinions on any topics that would be important to you as a caregiver.

Kind regards,
Shahrooz
 

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