University design competition - enhancing dementia care support

[ameliajcook]

Good morning, I hope everyone is having a lovely day!

I’m Amelia Cook, an Industrial Design student at Northumbria University.

As part of my university course I’m participating in the RSA Design Competition which encourages students to create innovative solutions for social challenges. This year’s challenge, sponsored by the Rayne Foundation, revolves around enhancing the lives of older adults and their carers. (please see the brief attached)

In response to the brief, inspired by my own experience with my grandma, I am designing a dementia toolkit for families coping with a dementia diagnosis, aiming to provide helpful resources to help educate families on how to interact with the patient as well as providing some dementia friendly activities to make visiting their family member less intimidating and improve the quality of care for the patient over time.

I am hoping to seek insights about individuals' experiences with the initial dementia diagnosis of a family member. If you have any insights to share, whether it's about activities, recommended products, or your personal experiences during the early stages of dementia diagnosis, I would greatly appreciate hearing from you. Feel free to share your thoughts below if you're comfortable doing so.

Thank you,

Amelia

 

[SeaSwallow]

This member has permission to post.

 

[Hermann]

What carers to dementia sufferers primarily need is what countless well-intentioned, but ineffectual, initiatives of this kind never supply: substantive practical help with an enormous and unremitting workload.

In my situation, as the carer of two bed-bound parents with severe dementia, the last thing I need is educating on how to interact with my patients, or dementia friendly activities that make visiting my parents less intimidating - I am here 24/7, after all, and have been for years.

If you want to enhance my and my parents’ life, devise an initiative that sends out heavily subsidised (we pay in full for all outside care), experienced and committed carers to give me hands-on practical help with the enormous workload I have to deal with on a daily basis.

 

[Canna]

Two of the biggest challenges I faced in the early stages with Mum's dementia were:

• getting a diagnosis. It seems like once you get to 90 you're expected to be a bit batty, and as there's nothing much that can be done about it you don't get given a diagnosis. This can leave family in limbo, because you can't access things like dementia nurses, and there's nothing in medical notes if the person has to go into hospital.
• finding out what help and support is available. I'm a librarian and trained to hunt for information, but I found it a really challenge. I would have loved a nice ring binder of information on who to talk to about what; helpful organisations both national and local; gadgets (not that they helped much); what to expect from the GP, carers, financial stuff.. .With a ring binder you can add the stuff you need, and bin the stuff that's not relevant.

Things that were helpful in the early stages:

• a long and unofficial conversation with our GP practice nurse who had trained in dementia, and more importantly had recently cared for her own mother with dementia.
• Discovering a network of acquaintances who'd also experienced dementia. So lovely to bump into them on forays to the Co-op and to be able to offload to someone who really understood the difficulties.

Would some way of buddying carers up work? I go to a local carers group, but maybe there could be something just for demenia carers? A bit like this forum, but with the option to speak in person, and share local knowledge.

An additional issue with dementia is that often the person with dementia doesn't acknowledge that they have it, and this can make talking about it very difficult. Lots of having coded conversations, or standing on the doorstep to talk to chat with social workers before they meet the person in question. It's not so much about good communication, as being able to have secret communication - I wonder if there's something here you could look at - not sure quite what though!

Good luck with your project!

 

[ameliajcook]

What carers to dementia sufferers primarily need is what countless well-intentioned, but ineffectual, initiatives of this kind never supply: substantive practical help with an enormous and unremitting workload.

In my situation, as the carer of two bed-bound parents with severe dementia, the last thing I need is educating on how to interact with my patients, or dementia friendly activities that make visiting my parents less intimidating - I am here 24/7, after all, and have been for years.

If you want to enhance my and my parents’ life, devise an initiative that sends out heavily subsidised (we pay in full for all outside care), experienced and committed carers to give me hands-on practical help with the enormous workload I have to deal with on a daily basis.

Hi, sorry to hear about your parents. Thank you so much for taking the time to share your insights, this is really valuable for my project.

 

[ameliajcook]

Two of the biggest challenges I faced in the early stages with Mum's dementia were:

• getting a diagnosis. It seems like once you get to 90 you're expected to be a bit batty, and as there's nothing much that can be done about it you don't get given a diagnosis. This can leave family in limbo, because you can't access things like dementia nurses, and there's nothing in medical notes if the person has to go into hospital.
• finding out what help and support is available. I'm a librarian and trained to hunt for information, but I found it a really challenge. I would have loved a nice ring binder of information on who to talk to about what; helpful organisations both national and local; gadgets (not that they helped much); what to expect from the GP, carers, financial stuff.. .With a ring binder you can add the stuff you need, and bin the stuff that's not relevant.

Things that were helpful in the early stages:

• a long and unofficial conversation with our GP practice nurse who had trained in dementia, and more importantly had recently cared for her own mother with dementia.
• Discovering a network of acquaintances who'd also experienced dementia. So lovely to bump into them on forays to the Co-op and to be able to offload to someone who really understood the difficulties.

Would some way of buddying carers up work? I go to a local carers group, but maybe there could be something just for demenia carers? A bit like this forum, but with the option to speak in person, and share local knowledge.

An additional issue with dementia is that often the person with dementia doesn't acknowledge that they have it, and this can make talking about it very difficult. Lots of having coded conversations, or standing on the doorstep to talk to chat with social workers before they meet the person in question. It's not so much about good communication, as being able to have secret communication - I wonder if there's something here you could look at - not sure quite what though!

Good luck with your project!

Hi, sorry to hear about your mum. I really appreciate you sharing your experiences with me. You mentioned that you used some gadgets that didn't prove helpful. If you have a moment, could you elaborate on this? For instance, what specific challenges did you face with these gadgets, and what alternatives did you find more effective? Thank you

 

[Canna]

@ameliajcook we had a dementia-friendly telephone (big buttons); a clock which displayed the date and whether it was day or night; and a dementia-friendly radio (big buttons, 3 pre-programmed stations).

The problem with all of these was that by the time we'd realised mum was at the stage of needing them, she was no longer really able to cope with learning to use new equipment (even if it was very simple to use). She was also resistant to the change. And we quickly reached the stage where she would hide the equipment in drawers because she was worried about it being stolen.

We'd hoped that by putting equipment and technology in, we'd help mum to live on her own for longer, but what she really needed was human support - somebody there for her 24 hours a day. It wasn't that she'd forgotten how to use complicated equipment and needed something simpler, it was a case of o longer being able to process the basics of why you'd need to use equipment. For example, she could look at the clock, see the time, and that it was 9.00 in the morning, and still wonder whether she should be getting up of going to bed.

 

[Hermann]

Hi, sorry to hear about your parents. Thank you so much for taking the time to share your insights, this is really valuable for my project.

Thank you for your gracious reply, Amelia.

In spite of my negativity, best of luck with your research, nonetheless!

 

[ameliajcook]

@ameliajcook we had a dementia-friendly telephone (big buttons); a clock which displayed the date and whether it was day or night; and a dementia-friendly radio (big buttons, 3 pre-programmed stations).

The problem with all of these was that by the time we'd realised mum was at the stage of needing them, she was no longer really able to cope with learning to use new equipment (even if it was very simple to use). She was also resistant to the change. And we quickly reached the stage where she would hide the equipment in drawers because she was worried about it being stolen.

We'd hoped that by putting equipment and technology in, we'd help mum to live on her own for longer, but what she really needed was human support - somebody there for her 24 hours a day. It wasn't that she'd forgotten how to use complicated equipment and needed something simpler, it was a case of o longer being able to process the basics of why you'd need to use equipment. For example, she could look at the clock, see the time, and that it was 9.00 in the morning, and still wonder whether she should be getting up of going to bed.

Thank you for your follow-up. Your continued insights are greatly appreciated and have really helped with my understanding of dementia care challenges.