I require feedback for a mobile application I am developing for Alzheimer patients.

deucalion0

Registered User
Dec 26, 2012
15
Hello all, I hope you all had a great Christmas! I am a student studying computing science in Scotland, for my Honours project I am to develop a mobile application which will allow a Dementia patient to walk outdoors to locations independently without carers escorting them. I have a lot of work ahead of me and I was hoping I could maybe get some advice before beginning the actual software development.

Basically my idea in a nutshell is that the patient can enter and store locations and notes per location into the phone. When they want to walk to the location, they select it and press a button, which sets a timer to go off every say 20 minutes or so, the user can choose a duration themselves. Once the time runs out the user is alerted on screen with information on where they are going and why, with further options. These options could be: to continue being outside which resets the timer to 0 and counts towards 20 minutes again, or press to get a map showing the route home from their current location or call a designated carer.

The problem is due to the nature of Dementia it cannot be trusted that they will remember they have the device, so the only way I can think of is timed alerts, which I guess could be very annoying, but if suffering this nuisance can provide some freedom then it should be worth it right?

I have never dealt with patients before, I have no idea how this type of application would work, but after 2 months of thinking non stop, I cannot see any other way a patient could utilize a mobile application designed to help them.

I did think about tracking the users location at all times but this is too risky as the patient being very dependent on the technology may not have the best area which supports cellular data which maps need in order to track phones outdoors, also using maps a lot can use a lot of cellular data and could become expensive, which is why I moved on to my current idea.

If anyone could provide me with any information or advice that would be greatly appreciated, the more information I have the better results I can hope to achieve from this project. I really would love for this to actually help these poor people.

Many kind regards,

Raymond
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I'm afraid I'm going to be very dismissive of this idea. If a person is not safe to walk alone outside they are never, ever going to be able to make use of such a device. When a person forgets how to make a cup of tea, do you really think that they will be able to follow such a complex set of steps? And this also completely misses the point that many people are unsafe outside known areas because they have lost all sense road safety.

I'm sorry to be blunt but I think you need to rethink this if it is to have any practical application at all. If it's just an intellectual exercise that's fine, I suppose, but you really really need to get to know some people with dementia to understand the limitations they may have. Bear in mind, though that dementia is variable - every person is different and what might work for one person on one day probably won't work for another (or even the same person on a different day).

The reality is: the reason you have spent a couple of months thinking about this and not finding another possibility is that really, these sorts of things aren't suitable for people with dementia, at least not when they have reached the stage where they need that sort of guidance.

Just my opinion of course.
 

Aquaria

Registered User
Dec 10, 2012
12
Gosh! Where to start...You need to spend some time with a person who has no real memory! My mum looks after herself but can no longer comprehend how to use a remote. If the channel is changed accidentally she has no idea how to revert back to BBC1. A mobile phone is a "miracle" to her. To teach her to view and understand what is on a screen is beyond her. To get her to remember to take anything new with her would be a challenge. When she leaves the house she knows she must take her handbag; purse and keys; and umbrella if it's raining - these things have not changed for 60+ years.
As I live 100 miles away from my very independent mother I would like to know that she is safe, and that I can contact her easily. I would like to contact her through a screen just like on Thunderbirds but have control; and every time someone knocked on her front door I would like to see who it is on my phone or laptop. Perhaps someone who is in the early stages can learn how to use technology but as time progresses my experience is that things become unlearned. Good luck.
 

NeverGiveUp

Registered User
May 17, 2011
1,035
From what I know of mum, the best thing for her would be to implant a GPS chip under the skin so she could be tracked if she got out, the chip should be somewhere she could not see or reach, she might have dementia but she isn't stupid, she would have a go at finding/removing a foreign body.

As for Apps, you have to have the right phone as well as the knowledge & ability to use it. For myself I have a very old, very basic Pay as you go which was given to me, I have no need for anything else, particularly expensive things. Things can get damaged around dementia people, they are all different. My mum is best compared to a child with very bad attention deficite disorder except she has 90 odd years of experience, she would look to escape from anything which constrains particularly if she sees it as Big Brother.
 

deucalion0

Registered User
Dec 26, 2012
15
Hey guys, many thanks to you all for your input! It is really important to me! Can I just say that this project was part of an European initiative which aims to seek ideas for utilising technology to help those with memory disorders. The thinking is for the next generation who may suffer these illnesses, those who are accustomed to smartphone technology and could use it in general with no real problems.

I have done so much studying and the facts are always against what I can do with an application to help those with memory disorders walk destinations alone. But what about those who are in the early stages of Alzheimers, and still have good functionality, couldn't this be used by these patients? I definitely do think there would only be a very specific set of patients who would benefit from using such a device and application, and at least those could be helped right? But I am unsure if there are categories which patients come under which could be used to analyse whether a patient is a suitable candidate?

I have many reasons for wanting success, allowing the patient to get exercise, daylight and independence, can all help with depression and in some cases perhaps slow down memory deterioration, anything that can I help I want to promote by using this application.

I completely understand the concerns raised when allowing someone you care about to leave the house unattended fully dependant on technology which they themselves are in control of, my head is doing overtime trying to crack this. In the end if it cannot be done, then that is also successful outcome to my project, an unfortunate end of course, but I need the proof and reason why it cannot be done, without feedback I have no base to stand on as this is kind of a new territory.

Many thanks for all of your input once again!


Raymond
 

Sue J

Registered User
Dec 9, 2009
8,035
I very much want to respond but am unable to at his tiem - please don't give it up as a bad idea, I am sure there are some possibilities - will try and respond in time.
best
Sue
 

deucalion0

Registered User
Dec 26, 2012
15
I very much want to respond but am unable to at his tiem - please don't give it up as a bad idea, I am sure there are some possibilities - will try and respond in time.
best
Sue
Thanks Sue, I appreciate this! I still have a few months yet, so there is plenty of time! :)

Thank you!!
 

jenniferpa

Registered User
Jun 27, 2006
39,448
The thing is, if you're in the early stages you probably wouldn't need an application such as this. Many people with dementia will still be driving, for example, in the early stages.
 

Shash7677

Registered User
Sep 15, 2012
1,672
Nuneaton, warwickshire
Hi,

My mum is 67 and has bad AD. She had been suffering symptoms for some time before her diagnosis in October 2011.

When mum started to go downhill with her memory she would forget her words and stop mid sentence. She couldn't explain to you where she had been, for example her and dad went to look at a bungalow. The conversation about it went something like this.

Dad and I went to look at a bungalow

That's nice mum, where abouts?

You know, down that road.

Which road mum?

That road, then you turn, turn the other way and its there on that side!

This was about 18months before mums diagnosis when she was ati able to make a warm cup of tea and only enough cups for the amount of people in the house.

What I'm trying to say I suppose is that for mum she hadn't a clue where she was going in the early stages of her AD so a device like this for her would not have been helpful unless it understood 'down that road, turn that way' instructions.

I think you have a good concept but whether a person is used to smartphone technology or not, once your memory is failing its failing, having a gadget put in your hand won't jog your memory.

Mum was always very good on the phone, could text and all sorts but as soon as she started to get poorly she wouldn't even switch her phone on. She had no idea what buttons to press. She also had no idea which numbers were what, she didnt know an 8 was an 8 nor could she recall letters. She wrote gibberish most of the time.

I think a person would have to be exceptionally early in the stages of either AD or dementia to be able to use such a device but I also have to agree with Jennifer, encouraging someone with AD to go on a wander isn't a great idea. What if they lost the device? How would they get home? Can someone else track the device so they would know where the person was? AD and dementia sufferers can do enough wandering of their own accord without being encouraged to do so. As someone whose mum had to be brought home by the police more than once, had to search for my mum more than once and had to drag my children out of the house to look for their nan I'd say you would need to be very careful with something like this. Could you not maybe develop the tracking idea as opposed to the allowing people freedom to wander idea.

I would spend some time with AD and dementia sufferers and their carers, I think you may find a fair few would be quite horrified at the thought of their loved ones actively being encouraged to go walk about.

Sharon
 

deucalion0

Registered User
Dec 26, 2012
15
Hi,

My mum is 67 and has bad AD. She had been suffering symptoms for some time before her diagnosis in October 2011.

When mum started to go downhill with her memory she would forget her words and stop mid sentence. She couldn't explain to you where she had been, for example her and dad went to look at a bungalow. The conversation about it went something like this.

Dad and I went to look at a bungalow

That's nice mum, where abouts?

You know, down that road.

Which road mum?

That road, then you turn, turn the other way and its there on that side!

This was about 18months before mums diagnosis when she was ati able to make a warm cup of tea and only enough cups for the amount of people in the house.

What I'm trying to say I suppose is that for mum she hadn't a clue where she was going in the early stages of her AD so a device like this for her would not have been helpful unless it understood 'down that road, turn that way' instructions.

I think you have a good concept but whether a person is used to smartphone technology or not, once your memory is failing its failing, having a gadget put in your hand won't jog your memory.

Mum was always very good on the phone, could text and all sorts but as soon as she started to get poorly she wouldn't even switch her phone on. She had no idea what buttons to press. She also had no idea which numbers were what, she didnt know an 8 was an 8 nor could she recall letters. She wrote gibberish most of the time.

I think a person would have to be exceptionally early in the stages of either AD or dementia to be able to use such a device but I also have to agree with Jennifer, encouraging someone with AD to go on a wander isn't a great idea. What if they lost the device? How would they get home? Can someone else track the device so they would know where the person was? AD and dementia sufferers can do enough wandering of their own accord without being encouraged to do so. As someone whose mum had to be brought home by the police more than once, had to search for my mum more than once and had to drag my children out of the house to look for their nan I'd say you would need to be very careful with something like this. Could you not maybe develop the tracking idea as opposed to the allowing people freedom to wander idea.

I would spend some time with AD and dementia sufferers and their carers, I think you may find a fair few would be quite horrified at the thought of their loved ones actively being encouraged to go walk about.

Sharon


Hi Sharon thanks so much for your input, I really appreciate it. It is information like this which will determine the route and content of my research. I have argued that this would be a tricky project and doing my fair share of research I can see how bad wandering is without patients being outdoors in the first place. I have got in touch with local Alzheimer groups so as I could get more in depth information but have still had no reply, I doubt I will, that is why I joined this forum.

It is important that I get real information on real peoples lives so as to look into other solutions, or find information that backs up exactly why any solution would not work, the aim in taking some of the dependence patients have on carers and substituting that with technology just may not work when it comes to patients taking to the outdoors.

Thank you again for telling me about your mum, I appreciate it fully!

Raymond
 

NeverGiveUp

Registered User
May 17, 2011
1,035
Raymond

Could I just chuck an unformed idea at you.

Wandering is touching on many carers deepest fear, have a look at the threads on this forum, at the moment 'Vulnerable 88 year old missing for 6 days ' is the one to look at. Technolgy is being seriously used, go through that thread, Facebook etc is being used.

The idea which has gone through my mind isn't so much to tell the wanderer. I am thinking of something which is more like Dart tag at the Dartford Crossing or the London Congestion charge monitors. Supposing there was a device which did not infringe on a person's human rights which could activate an alarm. For example, entrance to a railway station, a signal is captured and an alert sent, rather like trackers on cars, activate the tracker at certain pre arranged spots and it keeps on tracking. If the person wanders around a certain area which is safe then it doesn't activate.

The fear with all of this is reliability. We have a carer alert system on our doors to set off an alarm if mum leaves the property, it was installed with an unreliable charger which was known to have a problem yet no product recall - apparently. We found out in another way that it wasn't working, if mum had left the house we would not have known, I find that very worrying. A door sensor then went off of its own accord in the middle of the night, I called the police as it indicated an intruder to us, it was a false alarm, then another door sensor dropped off the door. I have very little faith in this system, it is linked to smoke alarms and carbon monoxide alarm, I have other devices as well because I don't trust the reliability of the carer assist.

Sorry if this rambles, but wanted to throw thoughts at you. I feel that I would want a tracker on mum's person most of all.
 

deucalion0

Registered User
Dec 26, 2012
15
Raymond

Could I just chuck an unformed idea at you.

Wandering is touching on many carers deepest fear, have a look at the threads on this forum, at the moment 'Vulnerable 88 year old missing for 6 days ' is the one to look at. Technolgy is being seriously used, go through that thread, Facebook etc is being used.

The idea which has gone through my mind isn't so much to tell the wanderer. I am thinking of something which is more like Dart tag at the Dartford Crossing or the London Congestion charge monitors. Supposing there was a device which did not infringe on a person's human rights which could activate an alarm. For example, entrance to a railway station, a signal is captured and an alert sent, rather like trackers on cars, activate the tracker at certain pre arranged spots and it keeps on tracking. If the person wanders around a certain area which is safe then it doesn't activate.

The fear with all of this is reliability. We have a carer alert system on our doors to set off an alarm if mum leaves the property, it was installed with an unreliable charger which was known to have a problem yet no product recall - apparently. We found out in another way that it wasn't working, if mum had left the house we would not have known, I find that very worrying. A door sensor then went off of its own accord in the middle of the night, I called the police as it indicated an intruder to us, it was a false alarm, then another door sensor dropped off the door. I have very little faith in this system, it is linked to smoke alarms and carbon monoxide alarm, I have other devices as well because I don't trust the reliability of the carer assist.

Sorry if this rambles, but wanted to throw thoughts at you. I feel that I would want a tracker on mum's person most of all.

Hey Never give up,

trust me, I have researched in great depth technology solutions which are currently being used to help those with Dementia. From tracking to wandering detection.
There are a lot of BAD solutions out there, often cheap and impractical, or worse expensive and impractical. The things that can be done with smartphones is amazing, unfortunately, these solutions are only fit for certain people. I have had a lot of ideas on how to improve these solutions. You see being a computing student and needing to work mobile phones my hands are tied with this type of solution, they are amazing for tracking, but it means the device is carried by the patient, or is fixed to the patients clothes. Kind of like the GPS shoes and watches that are available for tracking people who wander down, the idea is that this is by far a much cheaper solution.

Another solution I have thought of is where a user has the phone on them and using GPS and creating a virtual ring around say the house and garden, if the phone crosses the virtual barrier it immediately calls a designated number, a carer perhaps. I suppose this could also trigger other sort of alarms, perhaps wireless speakers inside the house.

I have come across a lot of different studies, people are trying hard to make better technological solutions, but it is not easy. But I agree, you should definitiely not have to pay for a system which fails, and does not provide a sense of relief at all. That is why I worry about my idea, one of my main aims is to relief the burden placed on carers as well as benefit patients.

I am commited to the point I don't stop thinking about what can be done, so fingers crossed!!
:)

And please, always tell me what ideas you have, or problems you face, in these situations it is just building my case.

Thank you,

Raymond
 

Shash7677

Registered User
Sep 15, 2012
1,672
Nuneaton, warwickshire
Raymond,

Have you contacted your local alzheimers society or age concern? May now be called age UK? They should be able to help. Also contacting the social workers, community paychiatric nurses and even the community psychiatrist in your area who work with the Community Mental Health team for Older People may be an idea??? Apologies if you already have.

Where we love in Warwickshire there is something called The Phoenix Group (sounds very Peter Kay and yes it was in a working men's club just to out a cherry on too! Lol). It is a group led by the CMHT for dementia sufferers and their carers to attend where they just have a relax, a cuppa and generally just spend time with other people in their position. If there are such groups in your area maybe you could request popping along and sharing your idea. You could ask for the care givers to provide feedback, informally of course and then see how your idea is received when pitched at people who could potentially use/benefit from it (or not depending on what they say).

Just a thought. I'm happy to share information about mum so ask any questions you like, I will be as honest as I can if it helps you out. I take my hat off to anyone who tries to develop any means of making this disease easier on carers who still have loved ones at home.

Sharon
 

Sunbell

Registered User
Jul 29, 2010
712
Yorkshire, England
It does not matter whether a person is accustomed to smartphones or any other new fangled technology in life, when Alzheimers Disease is involved everyone becomes the same in that their memory fails and no matter what devise there may be to help them when out without carers it will always be the 'At Risk', 'Vulnerable' & 'Danger' factors that a device will not assist with.

Example such as having no sense of money value or going in a shop and not knowing you must pay for goods i.e.shoplifting. Also risk of traffic when crossing roads and being very vulnerable to being 'befriended' by a not very nice person. These are only a few of the examples why our loved ones are at risk if out on their own, so how is some device they may carry help to stop any of this. The safety of the sufferer is paramount and can only be helped by having someone with them when they need a walk or need to go out anywhere.

Alzheimers Disease unfortunately, how can I put it, 'kills of the brain cells' for want of a better explanation. Sufferers do not realise that a lot of the things they do are wrong and can be dangerous to themselves and others and therefore they need care by another human being and not an electronic device.

Please do not think I am against any studies you may do for your education regarding this subject but until you have lived with and cared for a loved one with this terrible disease I do not think anyone understands how devastating this is for the sufferer and the family involved.

These are only my views of course but hope it helps you whatever you decide to do in your studies. Good luck to you. Sunbell:)
 

velo70

Registered User
Sep 20, 2012
177
Devon
Never give up

Keep plugging away. Easy for us to say its a waste of your time, but we got to the moon-didnt we? Most carers have good human skills. They need to respond to the wayward path of someone with dementia who doesnt follow any logical path or thought. Who makes a purchase in a shop, but has no idea of what they purchased or how much they paid. Like has been said, makes a cup of tea for 4 persons, when only 2 live here. Or answers the phone to a son, but cant recall to whom she is speaking. And that is the 'early onset' stage. So your development must have almost a human power of thought to understand and correct the erratic behaviour of a disfunctional brain. Phew!!
 

NeverGiveUp

Registered User
May 17, 2011
1,035
I would say that prior to starting to care for mum & her dementia that my technical + computer skills were far higher than average, since dementia walked into our lives this has all changed. Dementia is best dealt with when things are simplified to the Nth degree, that includes things in my life. It is a bit like dealing with a sinking boat, you throw out everything that you can to keep it afloat.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Well, first of all I applaud your ideas and wish to make a practical application to help people who have dementia.

Dementia comes in many forms, and people are affected in many different ways, and at different stages of their progression.

So, I'd not say it is impractical - though I admit that was my first thought. What is impractical for one person may be a help for another.

We're used to apps being thought of in mass market terms and to be fair, anything you or others may come up with at present will never be mass market.

However, things have to start somewhere. Who would have thought that a small project at Xerox Labs 35 years ago would have resulted in the Macintosh and Windows systems we see today, and by extrapolation, the tablets and phones.

If you came up with something that helped just one person who has dementia for just a short time along the development of their condition, then it would be worth all the effort. I'd have done anything to have something of the sort that might have helped my late wife. Sadly, though, it was computer technology that gave us the first concerns that something was wrong with her. She was computer literate, but it was the arrival of Windows 3 and the need for hand/eye coordination with a mouse that totally stumped her. Learning anything the slightest bit new was already beyond her, and this was really early on.

If you develop something - anything - for this market, the it is possible that will launch someone else to take it in a different direction, and then someone else might take that, etc. The law of unintended consequences can sometimes work to the good.

Some additional thoughts:

Children often have mobile phones and iPods in the street these days and are at risk of being mugged as the devices have value. What chance would someone with dementia have?

Adults that I know [including young ones who are perfectly well] have a history of dropping their phones down the toilet and on to concrete - or just leaving it places [I confess that I often call my own number from a spare phone to find where I have put it...:eek:]. That's a danger for anyone, but especially so for someone who has dementia.

I was in the computer industry from 1965, so have used computers up to and including the iMac and iPad Mini I use today. Some folks simply can't work out how to use any of that technology, sometimes through fingers that are too big or shaky, or the fact they just can't handle the technology - and that last point includes a significant percentage of people under 40 these days. Any use of technology that is new to a person who has dementia may cause them problems in the same way.

So many people can't master the ability just to point and shoot with a digital camera, and that involves just one press to switch on, and another to take the picture. How much more difficult if interpretation of a display is required.

All that having been said, any journey starts with a single step, so apply your mind to this, take into account the things that people are saying here - and then prove us all wrong! We would be the first to applaud you if you came up with something that helped even one person. And that might spawn development of something very much more mass market.
 

deucalion0

Registered User
Dec 26, 2012
15
Hello all! Sorry I have been very busy and not had a chance to reply to you all yet, I am still busy but I want to write properly when I have the time. Bruce thanks so much for all of your information, it definitely helps! Since I posted in this forum my mind has done over time, I have in one day gained a perspective 2 months of reading books and papers couldn't provide. I need to seriously consider my options, but its all part of the process!

I will get back on here ASAP, in the meantime, many many thanks to all of you for sharing personal and valuable information!

I appreciate it!

Raymond