Cognitive testing for progression tracking

[Donkeyshere]

Yeah I did read a bit before, going to spend more time going through as many threads as possible I think.



Ooh interesting, so when you say monitoring for indoors and outdoors, is it location data you're interested in for both, or does indoor monitoring need to be camera based for it to be useful (rather than some other method of indoor presence localisation)? Or is the issue less about the type of monitoring, and more like you said, about the fact that both indoor and outdoor could be in the same app/device/service? Obviously if they're the same type of data it makes it easier to put into one interface/product

Hi not just location data but a combined monitor could also be to check on the PWD for example to check they have not fallen with the potential for two way intercom, but yes effectively putting this as an all in one product to incorporate the devices and use the same app etc as you say. The data may be different for example the amount of falls caused by dementia vs those data for those wonder but just something to consider and weigh up the benefits of an all in one device. But yes in essence you have the main strands of the idea, not sure its possible to combine the two, but at the moment there are so many different devices and set ups, it can be confusing, time consuming and expensive considering which one would be the most beneficial for each specific use.

I have recently heard of a company that has its staff using a monitor that they wear and if they have been assaulted and fallen and stay at a certain angle for example flat on the floor for a set amount of time (the nature of the job don't ask!) then an alarm is sent to a company this also incorporates a two way intercom and assistance can be organised. Obviously you have to get the person to wear it not always possible with dementia and then incorporate the location monitor. I just realised I have missed my calling......! Anyway just an idea will leave you to consider the benefits of collecting the required data specifics etc good luck.

 

[lsfydp]

Hi not just location data but a combined monitor could also be to check on the PWD for example to check they have not fallen with the potential for two way intercom, but yes effectively putting this as an all in one product to incorporate the devices and use the same app etc as you say. The data may be different for example the amount of falls caused by dementia vs those data for those wonder but just something to consider and weigh up the benefits of an all in one device. But yes in essence you have the main strands of the idea, not sure its possible to combine the two, but at the moment there are so many different devices and set ups, it can be confusing, time consuming and expensive considering which one would be the most beneficial for each specific use.

I have recently heard of a company that has its staff using a monitor that they wear and if they have been assaulted and fallen and stay at a certain angle for example flat on the floor for a set amount of time (the nature of the job don't ask!) then an alarm is sent to a company this also incorporates a two way intercom and assistance can be organised. Obviously you have to get the person to wear it not always possible with dementia and then incorporate the location monitor. I just realised I have missed my calling......! Anyway just an idea will leave you to consider the benefits of collecting the required data specifics etc good luck.

Thanks a lot for the detailed response! That's super helpful, and yes I'll figure out details and whatnot, but the pain point that you mentioned of confusion and expense with multiple devices and services sounds like it might be quite interesting to tackle from a tech and user experience standpoint.

 

[Jaded'n'faded]

This is a much better use of tech. If you were able to produce an integrated device/app for monitoring and tracking, and could make it for a really good price, maybe local councils would be interested.

 

[Donkeyshere]

Thanks a lot for the detailed response! That's super helpful, and yes I'll figure out details and whatnot, but the pain point that you mentioned of confusion and expense with multiple devices and services sounds like it might be quite interesting to tackle from a tech and user experience standpoint.

I would say another pain point is more the personal fear factor for the PWD ie not knowing if they have fallen or wandered and how to keep tabs on it - like I say come at it from both angles the personal and the tecchy side and think about the variances that come with dementia.

 

[Donkeyshere]

This is a much better use of tech. If you were able to produce an integrated device/app for monitoring and tracking, and could make it for a really good price, maybe local councils would be interested.

Bother I should have patented the idea!

 

[lsfydp]

This is all really useful information, thank you all!

 

[kindred]

Hi, I'm a design student from the UK currently looking into the problems that patients, families, and carers face due to Alzheimer's in order to try and design a solution. The area of focus I have right now is tracking progression of the disease. I've heard a few people mention that current methods generally take the form of routine cognitive testing, which can be time consuming and stressful for the patient, especially if they think they've "failed" or can see that they're getting worse. I'd love to hear some experiences with this, especially if it's an area that would have a significant impact if solved.

Thanks!

I volunteer in a nursing home. My husband died in the home after being there getting on for two years and I was there every day. The residents all have moderate or severe dementia. I cared for my husband as sole carer at home for four years before that. I have a lot of experience of direct caring, people with dementia and now I also do family support. Please understand I am not being negative - I also work at a top University in a different capacity and so respect research.
Families who are caring for a person with dementia often detest this kind of thing, it makes them afraid and anxious and it is difficult to see how it can be reassuring. What use could it be to them to track the progression of the disease? Believe me the progression is gut wrenchingly obvious at the time. We need practical help, support, ideas that work, far fewer researchers doing apps and things like that.
Come along, volunteer, you will soon get a feel for what I mean. Warmest, kindred.

 

[Donkeyshere]

I volunteer in a nursing home. My husband died in the home after being there getting on for two years and I was there every day. The residents all have moderate or severe dementia. I cared for my husband as sole carer at home for four years before that. I have a lot of experience of direct caring, people with dementia and now I also do family support. Please understand I am not being negative - I also work at a top University in a different capacity and so respect research.
Families who are caring for a person with dementia often detest this kind of thing, it makes them afraid and anxious and it is difficult to see how it can be reassuring. What use could it be to them to track the progression of the disease? Believe me the progression is gut wrenchingly obvious at the time. We need practical help, support, ideas that work, far fewer researchers doing apps and things like that.
Come along, volunteer, you will soon get a feel for what I mean. Warmest, kindred.

Hi Kindred @lsfydp has already come to the same decision and has changed their research project completely to look at falls and tracking to see if they can design an all in one monitor.

 

[WJG]

It seems to me that existing cognitive testing methods are primitive, and skewed towards classic 'memory loss' models. Any objective measure would be welcome. But it's verification would be difficult.
Clearly it would be difficult to directly measure changes within the brain regularly using scans, but if there were some other marker that could be assessed that would be interesting.
As someone going through the diagnosis process I am struck by how subjective this seems to be - despite me having had both CT and SPECT scans. I imagined that these would be readable in such a way that a diagnosis could be made from them.
Now I am told that it would only really be through having an annual scan that progression could be measured.
I just want an app on my phone.

 

[Jaded'n'faded]

It seems to me that existing cognitive testing methods are primitive, and skewed towards classic 'memory loss' models. Any objective measure would be welcome. But it's verification would be difficult.
Clearly it would be difficult to directly measure changes within the brain regularly using scans, but if there were some other marker that could be assessed that would be interesting.
As someone going through the diagnosis process I am struck by how subjective this seems to be - despite me having had both CT and SPECT scans. I imagined that these would be readable in such a way that a diagnosis could be made from them.
Now I am told that it would only really be through having an annual scan that progression could be measured.
I just want an app on my phone.

Yes, I bet you do. I would want one in your situation. However, however....

The experience of most people with dementia is that self-awareness goes early on, in fact the problems family members often have are because the person with dementia is in complete denial that anything is wrong. And if you believe nothing is wrong, why would you need to monitor yourself?

@WJG I'm really pleased the doctors are listening to you and that you continue to have so many scans and investigations. But I do find this very surprising. Most people, should they be fortunate enough to get a timely diagnosis, are then 'dumped' by the memory clinic, back into the care of their GP, who, sad to say, frequently doesn't care very much at all. It then becomes all about the management of dementia. Often there are no follow-up scans or even reviews of progress. You are basically left to 'get on with it'.

I'm sorry to sound so cynical - it's a sad state of affairs. But my experience with all medical professionals has been along the lines of, 'Yes, your mother has dementia.' If you're lucky they add, 'I'm sorry', but the unspoken bit is, 'Dementia is a cruel, progressive, terminal disease and there's b****r all we can do about it.'

 

[WJG]

I think the system in Scotland is rather better. Not perfect, but better.
But I guess this discussion highlights the very problems of trying to design for dementia. There are those of us who retain- for the moment - self awareness. There are those who don't. Which is where a one size fits all approach is doomed to fail.