Anyone happy to share their experience of useful tools they already use?

[Manis_ha]

Hello everybody!

Doing a research project here which is partly about understanding what PWD and their carers already use/do to help manage the symptoms - and to live as independently as possible for as long as possible.

I am clearly no expert and I am really hoping to learn more from this forum - but I understand from the various dementia community groups I've visited so far, and the people who've taken their time to speak to me that peoples' experience can be very unique. And what might be suitable for someone at one stage can be completely unsuitable later on.

I would really appreciate anybody sharing something that has helped or is helping at one stage with a particularly challenging dementia related problem??
It could be a piece of technology, a product, a game you play together - even a way of communicating that helps to negotiate challenges of day-to-day life.
For example I spoke to somebody last week whose daughter had installed a sensor into her mum with dementia's front door, which, when opened triggered a speaker with the daughter's voice saying 'Mum remember your keys and your handbag, and remember to lock the front door!'

Just to add, I am doing this as part of my job as a Design Researcher. On a personal note it's also given me a lot of opportunity to think about things which may help my gran who has Parkinsons, also degenerative

Thank you for your suggestions
Kind regards,

Manisha

 

[Amy in the US]

We have certainly had a run on these threads lately.

Welcome to TP, and I'm sorry to hear about your grandmother. Parkinson's is tough.

My PWD was diagnosed and moved into care long last the stage where technology would have helped, so I have little personal experience and advice to offer.

I can say that an item that would be useful would be an easier remote control for the television, although the cable provider and their channel guide are also a problem. The tv and remote have caused a lot of problems.

I see a lot of posts on TP, that indicate some carers could use help with trackers, others with surveillance systems, pressure mats, alarm systems, door chimes, ways to prevent the PWD from tampering with the thermostat, ways to prevent flooding from taps left on, ways to prevent the PWD from leaving the gas on or turning it on in the first place. Those are some technology and hardware issues that I've seen posted repeatedly, in the time I've been here.

The things have been most useful to me as a carer are education about dementia and support, so, support groups, workshops, TP, my local Alzheimer's Society and my local version of Age UK.

But if you can provide a solution so my mother can turn the television on and off, I'd be grateful.

 

[jenniferpa]

Huh. I had one exactly like the sensor you mentioned. It caused massive confusion and distress for my mother who could hear my voice but couldn't find me. Worse than useless.

 

[Amethyst59]

We are using Echos. I am sorry, I don’t know the generic term for them. It means my husband can ask the time, date, what the weather forecast is, what is in the diary....all the things he used to ask me. The robot is much more patient than I am, she answers with the same pleasant voice the first and the thirty first time she is asked the question. I love the link to the calendar. He can ask, what am I doing today...or when am I going out with Bob?
And....one of the best features, he can listen to music again! The music centre got too confusing, radio, cd...but now he can ask for a specific radio station, song or album...or for a composer or artist. Brilliant. (Except for the time he wanted to listen to the song, ‘The Flight of the Pelican’ and was told...’I can’t find The Flight of the Publican’!!)

 

[mab]

Hi Manis-ha,
Great that you're thinking of aiding dementia sufferers.
How much do you know about this condition?
Are you aware that this means 'brain cell death'? Never, ever to be recovered! Gone forever!
Whereas I love the idea of your wanting to help I do feel you need to understand more about what dementia means. It is brain cell death. It is NOT learning difficulties. Every sufferer is different, as is every carer. There is NOTHING you can offer to a dementia sufferer but understanding, empathy, love and support. Zilch! The time for change has long gone. No new innovations stand a chance..... the sufferer is confused enough by today's technologies, let alone tomorrow's.
I've just had the week from hell, so please excuse my rant, BUT, please start by understanding dementia for it's reality, not for some academic thesis. I'm now dealing with my 3rd generation of dementia sufferers...... you??
Dementia is a practical work experienced across the nation by an army of totally exhausted carers.
Maybe research into the carer aspect?

 

[nita]

Huh. I had one exactly like the sensor you mentioned. It caused massive confusion and distress for my mother who could hear my voice but couldn't find me. Worse than useless.

Slight digression but on the subject of disembodied voices - my example below is about a tool for the carer.

I had a similar problem with a baby monitor. It was useful from the point of view of my hearing my mother call out, but she, too, possibly couldn't understand where my voice was coming from if I spoke to her, so it was useless as a way to calm her down from upstairs and I had to be there physically.

 

[jenniferpa]

I've always wondered if it might have worked better if it had been someone else's voice.

 

[Manis_ha]

Thanks everyone for sharing your insights. I appreciate the honest feedback!

 

[Spamar]

Manisha, please don’t use the phrase ‘very unique’. A thing is either unique or it isn’t! Marked down if I was marking your dissertation! I think every person with dementia is unique. At leat, I haven’t come across anyone like OH.
My own OH couldn’t even switch on the tv or radio from before diagnosis, so nothing there to help. What he would have made of the latest Alexa and similar gadgets, I have no idea!
The best I could do was take over, without fuss, the jobs he couldn’t do.

 

[Manis_ha]

Just to clarify to those who've shared, this isn't for a dissertation so let's not worry ourselves silly about grammar. I work for a small service-design company. The points about Echos, TV remotes and technology are well taken. Thanks.

The best I could do was take over, without fuss, the jobs he couldn’t do.

If you're happy to share, what kind of jobs were the ones he couldn't do Spamar? And what jobs did he still do himself?

 

[canary]

My OH used to do cooking, growing veggies on an allotment, did all the DIY - he was a very practical man.
Gradually I have had to take over the cooking tasks (he can still make a cup of (instant) coffee and a sandwich and can heat something in a microwave if I remind him to do it and check that he isnt going to put something metal in and how long he has set it for. He can still wash up, but doesnt know where things go once they are dry.

Gardening is now totally beyond him. He had to give up the allotment and I have taken over the gardening (not very well). DIY is also beyond him - he cant even work out how to nail up a picture hook! I have to get someone in to do all the DIY now and the saddest thing for me was that the first time I did this, he didnt even argue.

He is OK with the TV remote, so long as it is just changing chanels as he knows which buttons to press, but cant do anything else (he once switched the volume right up and didnt know how to turn it down again) and I have to use the remotes if I put a DVD on.

I dont think that there are any gadgets that can help with the majority of that - in fact, I find that I am reducing the number of gadgets that we own as OH is losing the ability to understand how they work.

 

[Bunpoots]

Your OH sounds a lot like my dad canary. He was very intelligent, very practical, even built the family home. Can still manage tv remote (on a good day). No longer safe with the microwave - managed to set fire to a tea cake trying to toast it in there. Exploded a scotch egg. So now I try to get to him before he gets hungry!!

He can still boil an egg.

Latest thing is his mobile phone is broken. It isn't, he keeps turning it off when he tries to hang up. It's a Doro.

The only thing that helps him now is a person going to check on him, clean up and feed him. He'd be in a dreadful state without that visit every day.

 

[Spamar]

As the disease progresses, things like washing, dressing, making coffee, ability to work with tools, all disappear. Not necessarily in the same order, I may add!
As he had mixed ( alzheimers and vascular) dementia, he was prevented from driving early on, not long after diagnosis, in fact. Both of us were very upset about that! Though I may add we didn’t go to the docs immediately we noticed a problem, as we were going to move house, and weren’t sure where we would end up! Better for us to get settled, then sort out! Before that he would drive into town, with a list for himself, to which I had added a few items. My things didn’t appear! Don’t think he actually remembered he had a list. He would also take a very long time to do jobs. Pre diagnosis, he couldn’t switch on the tv, radio, anything electronic.
Just made sure I did my own shopping.
He then found difficulty in finding he way home from the golf club. He knew he had to go past W, but a critical Signpost didn’t mention it, only K. He didn’t realise that K was on the way to W! However, driving ban sorted that and I gave him a lift instead.
Day centre asked him to make some things to sell at the Christmas Fair. He couldn’t do it, didn’t know where to start! Luckily, his crossroads carer sorted out three reindeer! But I did ask that he not be asked again.
He was cutting wood one day and managed to cut three fingers, resulting in A&E, 8 stiches and lots of steristrips. Thereafter, I made sure there was plenty of kindling. I did this while he was a daycare, don’t think he realised this, wood magically appeared!
I had always done the finances, so no problem there. He wasn’t interested! However, I found he couldn’t identify coinage, so I had to take over paying for coffee etc.
I started sorting his clothes when he stopped changing them. Just putting the dirty stuff in the bin, sorting out clean, and saying there’s your clothes. I think, in the beginning, that I left him to help himself, but after a couple of weird and wonderful outfits, I chose the clothes. I did think I was depriving him of choice, but he never complained. He would happily shower, and I would leave his clothes for him. Again, we had the superman look and the jumper up the legs look, so I would wait for the shower to go off, then go in and make sure he was dry and hand him his clothes ready to put on. I was having to do this in the morning and evening as well. He could put things on, just not in the right order or the right place!
Though he eventually forgot how to turn the shower on or off.
He tried to make instant coffee, using the coffee for percolaters, and putting it in the kettle. He said It didn’t taste very nice, so was all too happy to let me do it!

It was all a gradual takeover, I didn’t ask, just did. And he was happy with that. He admitted he had a poor memory. After the first year, he didn’t like the term dementia, but poor memory was fine. Not long after diagnosis, he did a bit at a local conference on coping with dementia, and we did an interesting bit for local radio to highlight the world as he saw it, and as I saw it. One of the best bits was when he corrected the interviewer, who had asked if he worked in his shed. ‘It’s not a shed, it’s a workshop’ came the smart reply! It’s been a family catchphrase ever since!
Of course, it was a workshop, and used as such!

One of our great strengths was that we thought the same and got on extremely well. Hallucinations and delusions excepted! He was always used to people coming in and out, that was the way we were. I was so grateful!

I do realise that my/our way go living isn’t everybody’s, so this wouldn’t work for everybody. He rarely complained, and always accepted what help I could give to make life easier for him.

 

[molly29]

Hi Manis-ha,
Great that you're thinking of aiding dementia sufferers.
How much do you know about this condition?
Are you aware that this means 'brain cell death'? Never, ever to be recovered! Gone forever!
Whereas I love the idea of your wanting to help I do feel you need to understand more about what dementia means. It is brain cell death. It is NOT learning difficulties. Every sufferer is different, as is every carer. There is NOTHING you can offer to a dementia sufferer but understanding, empathy, love and support. Zilch! The time for change has long gone. No new innovations stand a chance..... the sufferer is confused enough by today's technologies, let alone tomorrow's.
I've just had the week from hell, so please excuse my rant, BUT, please start by understanding dementia for it's reality, not for some academic thesis. I'm now dealing with my 3rd generation of dementia sufferers...... you??
Dementia is a practical work experienced across the nation by an army of totally exhausted carers.
Maybe research into the carer aspect?

Hi Manisha,

I think it's brilliant that you're wanting to learn more about PWD and I think it's very clear that your focus is at the heart of improving the situation as a whole, which thus means helping both the PWD and the carer. I think it's widely known that the issues and complications that we all wish to address differ from case to case, which is why it's so important to learn and understand as much as you can from a variety of resources. I wholeheartedly disagree that no new innovations stand a chance. A successful innovation should and can seamlessly fit and work with ALL users and the environment it's intended for. It just needs to be heavily founded upon research and talking to the PWD's and carers themselves and having as much involvement and perspectives from EVERYONE. I 100% disagree with that statement- (my apologies!)

As a fellow designer, my belief is that great design is grounded upon on researching and learning and understanding exactly that- 'dementia for it's reality'.

My Nan has mixed dementia and has changed dramatically over the past 2 years, from living independently in her own home- to now having to be reminded that the 'milk is kept in the fridge Nan!!' (I have to quietly put the washing up liquid back from the cupboard underneath the sink ).

Manishia i'd be more than happy to help and offer ideas!

 

[Manis_ha]

My OH used to do cooking, growing veggies on an allotment, did all the DIY - he was a very practical man.
Gradually I have had to take over the cooking tasks (he can still make a cup of (instant) coffee and a sandwich and can heat something in a microwave if I remind him to do it and check that he isnt going to put something metal in and how long he has set it for. He can still wash up, but doesnt know where things go once they are dry.

Gardening is now totally beyond him. He had to give up the allotment and I have taken over the gardening (not very well). DIY is also beyond him - he cant even work out how to nail up a picture hook! I have to get someone in to do all the DIY now and the saddest thing for me was that the first time I did this, he didnt even argue.

He is OK with the TV remote, so long as it is just changing chanels as he knows which buttons to press, but cant do anything else (he once switched the volume right up and didnt know how to turn it down again) and I have to use the remotes if I put a DVD on.

I dont think that there are any gadgets that can help with the majority of that - in fact, I find that I am reducing the number of gadgets that we own as OH is losing the ability to understand how they work.

Thank you for sharing all of that...It's really telling what you say at the end about reducing the number of gadgets you own. If you don't mind me asking , was it that once your OH wasn't able to do the gardening, he couldn't engage with it full stop, or was it gradual?
And what does he say about gardening now if you ask him?

 

[Manis_ha]

As the disease progresses, things like washing, dressing, making coffee, ability to work with tools, all disappear. Not necessarily in the same order, I may add!
As he had mixed ( alzheimers and vascular) dementia, he was prevented from driving early on, not long after diagnosis, in fact. Both of us were very upset about that! Though I may add we didn’t go to the docs immediately we noticed a problem, as we were going to move house, and weren’t sure where we would end up! Better for us to get settled, then sort out! Before that he would drive into town, with a list for himself, to which I had added a few items. My things didn’t appear! Don’t think he actually remembered he had a list. He would also take a very long time to do jobs. Pre diagnosis, he couldn’t switch on the tv, radio, anything electronic.
Just made sure I did my own shopping.
He then found difficulty in finding he way home from the golf club. He knew he had to go past W, but a critical Signpost didn’t mention it, only K. He didn’t realise that K was on the way to W! However, driving ban sorted that and I gave him a lift instead.
Day centre asked him to make some things to sell at the Christmas Fair. He couldn’t do it, didn’t know where to start! Luckily, his crossroads carer sorted out three reindeer! But I did ask that he not be asked again.
He was cutting wood one day and managed to cut three fingers, resulting in A&E, 8 stiches and lots of steristrips. Thereafter, I made sure there was plenty of kindling. I did this while he was a daycare, don’t think he realised this, wood magically appeared!
I had always done the finances, so no problem there. He wasn’t interested! However, I found he couldn’t identify coinage, so I had to take over paying for coffee etc.
I started sorting his clothes when he stopped changing them. Just putting the dirty stuff in the bin, sorting out clean, and saying there’s your clothes. I think, in the beginning, that I left him to help himself, but after a couple of weird and wonderful outfits, I chose the clothes. I did think I was depriving him of choice, but he never complained. He would happily shower, and I would leave his clothes for him. Again, we had the superman look and the jumper up the legs look, so I would wait for the shower to go off, then go in and make sure he was dry and hand him his clothes ready to put on. I was having to do this in the morning and evening as well. He could put things on, just not in the right order or the right place!
Though he eventually forgot how to turn the shower on or off.
He tried to make instant coffee, using the coffee for percolaters, and putting it in the kettle. He said It didn’t taste very nice, so was all too happy to let me do it!

It was all a gradual takeover, I didn’t ask, just did. And he was happy with that. He admitted he had a poor memory. After the first year, he didn’t like the term dementia, but poor memory was fine. Not long after diagnosis, he did a bit at a local conference on coping with dementia, and we did an interesting bit for local radio to highlight the world as he saw it, and as I saw it. One of the best bits was when he corrected the interviewer, who had asked if he worked in his shed. ‘It’s not a shed, it’s a workshop’ came the smart reply! It’s been a family catchphrase ever since!
Of course, it was a workshop, and used as such!

One of our great strengths was that we thought the same and got on extremely well. Hallucinations and delusions excepted! He was always used to people coming in and out, that was the way we were. I was so grateful!

I do realise that my/our way go living isn’t everybody’s, so this wouldn’t work for everybody. He rarely complained, and always accepted what help I could give to make life easier for him.

This is quite an account - thanks very much for sharing. It sounds like you had a very supportive partnership. I found your bit about the shower and clothes and how that developed very telling. I wondered if I could ask, if you can remember, how your OH described his experience of the world as he saw it on the local radio?

 

[Manis_ha]

Hi Manisha,

I think it's brilliant that you're wanting to learn more about PWD and I think it's very clear that your focus is at the heart of improving the situation as a whole, which thus means helping both the PWD and the carer. I think it's widely known that the issues and complications that we all wish to address differ from case to case, which is why it's so important to learn and understand as much as you can from a variety of resources. I wholeheartedly disagree that no new innovations stand a chance. A successful innovation should and can seamlessly fit and work with ALL users and the environment it's intended for. It just needs to be heavily founded upon research and talking to the PWD's and carers themselves and having as much involvement and perspectives from EVERYONE. I 100% disagree with that statement- (my apologies!)

As a fellow designer, my belief is that great design is grounded upon on researching and learning and understanding exactly that- 'dementia for it's reality'.

My Nan has mixed dementia and has changed dramatically over the past 2 years, from living independently in her own home- to now having to be reminded that the 'milk is kept in the fridge Nan!!' (I have to quietly put the washing up liquid back from the cupboard underneath the sink ).

Manishia i'd be more than happy to help and offer ideas!

Thank you Molly...It is always difficult to convey that you really do want to understand 'dementia for it's reality' but I agree that the best insights for design come from this kind of open research approach. I would love to hear more about your Nan's experience, and any ideas. Is there a way to send you a message?

 

[canary]

It was a gradual decline @Manis-ha He used to run an allotment and grew all the veggies for the family, but then he started having trouble working out what he had to do and when. Some people at the allotment helped him a bit, but he had to give the allotment up. I encouraged him to grow some vegetables at home in out back garden and he made a couple of beds 2 ft x 4ft and grew things like carrots, dwarf beans and tomatoes for a couple of years, but gradually even that became too much and he neglected the garden. His mum bullied him into mowing the grass, but it took him longer and longer to do it. Sometimes he would go out with the pruning secateurs and just look at a shrub for ages; then he would snip off a couple of twigs and come back in. Eventually he did nothing. Now I do the gardening (well, as much as I can) and although the back garden is an overgown mess he says nothing about it. I think that even thinking about it is beyond him.

 

[Spamar]

I would have to listen to the tape again, it’s several years ago now. That might take more than a dash of courage. If I can, I’ll let you know.

 

[Mudgee Joy]

How do I get 10 posts ?