Design for Dementia Family Caregiver Burnout - Feedback wanted

[Sammy100333]

Hi everyone!
I'm an MA student studying Product Design at the Royal College of Art, London.
My grandmother has dementia and it has completely changed her daily life and my family's as well.
My mother is taking care of her and tries her best to help her live well.
However the role of a primary caregiver is quite exhausting, physically, mentally and emotionally.
I wanted to help my mother and possibly other family caregivers of people with dementia.

How design can help ease caregiver burnout?

1. Could I design something to help caregivers prepare a care plan, guidebook, app to help them track their own caregiving routine, duties and notes, so that they can pass it on to a professional caregiver/respite centre/another family member?
This might help the person taking over care deliver better, more personalised care, allowing the primary caregiver feel more confident about taking rest, for a day or two.
If I'm not wrong, the way care notes are passed on to care homes/respite centres is through a lot of paperwork.

2. Perhaps a colouring/activity book for the caregiver (with care-related and PwD related questions) could help collect personalised care information over time is a less clinical and tedious way. Would such an exercise book also serve as a form of therapy for the caregiver?

3. Would you prefer a design like this be in a physical or a digital format?

My mother also has hired help at home to help her look after my grandmother. However, the helper does not have specialised training to care for people with dementia. My mother still has to monitor all the care-related activities every few hours, so she can never really rest. Does anyone else have similar experiences?

It would be really helpful if family caregivers could let me know if they would find this useful. If there is a bigger issue at hand that you would like me to address, please point that out as well.

I'm really keen to hear your thoughts, so that I can work towards making something that would actually be helpful to family caregivers.

Thank you!

 

[nitram]

A spreadsheet of upcoming doctor and hospital appointments, phone calls, test results, ...... worked well for me.

 

[SAP]

Carers Uk have an app, maybe have a look at that.

Jointly app for carers | Carers UK

www.carersuk.org

 

[Kevinl]

I've read the original post too many times and just consider it so naive, caring in a care home plenty of time but primary care at home, just two people, there isn't just enough hours in a day, sport, and I hate to post so negatively, but colouring in, apart from anything else I'm colourblind so my wife with AZ used have me what colour meant we paint we had to buy.
Purple is just dark blue, don't even go there with red and green, nightmare when you have to read the testing kits.
Sorry to sound so negative, but it all sounds so very naive to me, well intentioned no doubt and thank you for posting but not for me. K

 

[PammieA]

Sammy, I think your idea is brilliant.
No 1. Especially, if you base it on the main caregiver as it should give every other person involved a holistic insight into the care given, what works and what doesn't.
Having previously worked as a nurse in hospitals and care homes 'continuity of care' is essential. Handing over to another person allows that person, whether family or professional to continue with the same care and routines.

I have only recently started on the journey with my mum having dementia, but I would definitely be for anything that helps with continuity of her car, for all involved.

Good luck with your studies.

 

[maggie6445]

These things are great if whoever is taking over the care bothered to read them!
When my OH went into hospital I completed the This Is Me form that the Alzheimer's society have. I put it in an envelope labelled with name and what was inside. It outlined what he can and can't do and things he would need help with

Four days into his admission I noticed it unopened on the desk in the nurses station.

Mmm... so much for that!!

 

[sdmhred]

I like the enthusiasm of these sorts of posts….unfortunately we all know the problems we encounter are systemic and need government and funding.

in terms of wellbeing …maybe some sort of dementia carer app?
a positive thought for the day? A couple of questions for reflection? Ie how have you looked after yourself today? what have you done well for your PWD? Which strategy has worked or not?

what can you be thankful for from today?

with easy access to phone line support for both dementia, carer and our own mental health …and quick read sections on how to get help with sundowning, continence care, what SALT team is etc 🤷‍♀️🤷‍♀️🤷‍♀️

linking into here….

 

[Chizz]

Hi @Sammy100333

Whatever you do you'll have to deal with dinosaurs, or maybe that is just me, and I'm past getting the help you are seeking to give or assist. I can only speak from my experience of one person to care for (other than me), for 7 years so far.

In the early stages of my OH's Alz's
a) the local authority adult social services handed me a paper booklet. This had lots of info, phone numbers, website addresses, names of charities and other societies that offered help if I wanted to contact the. So I looked up a few to find out physical activities that might be of interest for my OH - singing for the brain weekly group, the memory cafe had meetings weekly, but a waiting list, the church had a group for carers and PWD once a month, and of course we had our own interests - going to gardens, going to garden centres, walks in the woods round our village, going to the supermarket for weekly shop was a social outing for my OH, I invited friends round for tea and a biscuit and a chat, etc.
b) in between the above I was also looking after the house - cleaning, vacuuming; doing the washing and drying; doing the garden, preparing and cooking the meals, the washing and drying up, making the appointments with dr and outpatient's dept, etc
c) in between the above I had my own interests - reading, listening to music, my Rotary Club activities. And sometimes we watched TV.
d) my OH had her interests - reading, playing music, gardening, TV

I don't think we are/ were terribly abnormal, and that the above might cover many retired couples struck down by dementia. /caring / etc. I kept a diary, that I changed to our kitchen calendar and notice board and my phone schedule.

I didn't miss not having an app for this. Many of the above activities were ad hoc and spontaneous, or weather dependent, etc.- you now - it's dry and sunny, I'll wash the car. or I'll cut the grass, etc.

As my OH's Alz's progressed - in just a few years - as she became less able to do things in the house, or out of the house, things changed. Her attention span lessened, her dexterity lessened, this made her frustrated and less willing to try and do things. Thus activities I could offer her or suggested dwindled in both variety and time. She became less amenable and slept longer during the day. All the other things to be done in and around the house, garden, shopping, meals, etc remained the same. The medical appointments have greatly lessened.

My need to do things for me has grown rather than diminished (as I've now been lonelier for longer), but has to be fitted round everything else, if there's any time left.
I keep a list of medications up-to-date for both of us in case a copy is needed by the District Nurse, or an ambulance paramedic but nobody seems to need want or care about any personalised care info for either of us.

Maybe we're just past the help you are trying to devise. The carers we now have, have been trained. The sitter I have weekly has been trained. I don't think the care or the accompanying sitter would work otherwise.

Best wishes.

 

[Lawson58]

Hi everyone!
I'm an MA student studying Product Design at the Royal College of Art, London.
My grandmother has dementia and it has completely changed her daily life and my family's as well.
My mother is taking care of her and tries her best to help her live well.
However the role of a primary caregiver is quite exhausting, physically, mentally and emotionally.
I wanted to help my mother and possibly other family caregivers of people with dementia.

How design can help ease caregiver burnout?

1. Could I design something to help caregivers prepare a care plan, guidebook, app to help them track their own caregiving routine, duties and notes, so that they can pass it on to a professional caregiver/respite centre/another family member?
This might help the person taking over care deliver better, more personalised care, allowing the primary caregiver feel more confident about taking rest, for a day or two.
If I'm not wrong, the way care notes are passed on to care homes/respite centres is through a lot of paperwork.

2. Perhaps a colouring/activity book for the caregiver (with care-related and PwD related questions) could help collect personalised care information over time is a less clinical and tedious way. Would such an exercise book also serve as a form of therapy for the caregiver?

3. Would you prefer a design like this be in a physical or a digital format?

My mother also has hired help at home to help her look after my grandmother. However, the helper does not have specialised training to care for people with dementia. My mother still has to monitor all the care-related activities every few hours, so she can never really rest. Does anyone else have similar experiences?

It would be really helpful if family caregivers could let me know if they would find this useful. If there is a bigger issue at hand that you would like me to address, please point that out as well.

I'm really keen to hear your thoughts, so that I can work towards making something that would actually be helpful to family caregivers.

Thank you!

Hi Sammy,

I was interested to read your post, especially because it was so different to those that we usually get from students, eager to design something to help. I think your experiences have helped you realise that consultation from potential clients is the way to go.

I think that the different experiences we have as carers is going to make it difficult to design a tool that is going to have enough relevance for a sufficient number of carers to use it.

I have been caring for over ten years and as my husband is declining slowly, my life is very different to others. I have my tried and tested ways of managing and while I understand that I may need to adapt these in the future, the indications are that it will not require a rapid response.

But I would like to congratulate you on your attitude and the maturity of your approach and wish you well in the future.

 

[Grannie G]

My mother also has hired help at home to help her look after my grandmother. However, the helper does not have specialised training to care for people with dementia.

This is the big issue @Sammy100333

Carers need more specialised help to enable them to take a break from caring without having to worry about the quality of care.

I don`t know if you have any ideas to help improve this but if so you would have eternal gratitude from carers all over the world.

 

[Canna]

Is there any mileage in some sort of diary for the carer, with space to record not only what they do each day, but also issues that they've had with the person they care for. And perhaps also a space for recording how you feel?

On a practical "dealing with social services" level it's useful to record what you are doing as a carer on a daily basis (to demonstrate need). There could be a prompt to remind you to record details of any conversations you've had with professionals (you think you'll remember the details, but you don't). It's also useful to record the things that are causing issues "teeth lost, found hidden in the washing machine" - again useful for GP/social service, but also acts as a sanity check on how your parent's condition is deteriorating. And then maybe also a space to vent - the opposite of a mindfulness diary - things I'm feeling really raging about today.... You could also add in a space for useful contacts too - GP surgery, carer centre, community nurse, the person's national insurance number /CHI number...

I ended up with a pile of scrappy notebooks, and I wish I'd started recording details earlier, as it was incredibly useful on both a practical and an emotional level. Something more formal would have got me started.

 

[Lawson58]

Is there any mileage in some sort of diary for the carer, with space to record not only what they do each day, but also issues that they've had with the person they care for. And perhaps also a space for recording how you feel?

On a practical "dealing with social services" level it's useful to record what you are doing as a carer on a daily basis (to demonstrate need). There could be a prompt to remind you to record details of any conversations you've had with professionals (you think you'll remember the details, but you don't). It's also useful to record the things that are causing issues "teeth lost, found hidden in the washing machine" - again useful for GP/social service, but also acts as a sanity check on how your parent's condition is deteriorating. And then maybe also a space to vent - the opposite of a mindfulness diary - things I'm feeling really raging about today.... You could also add in a space for useful contacts too - GP surgery, carer centre, community nurse, the person's national insurance number /CHI number...

I ended up with a pile of scrappy notebooks, and I wish I'd started recording details earlier, as it was incredibly useful on both a practical and an emotional level. Something more formal would have got me started.

I have always recorded things on my iPad, partly because it’s easy, doesn’t get lost and OH can’t find what I have written.

 

[Ellie2018]

We have a Lions Emergency bix which is kept in the fridge and paramedics etc would look for it, it gives urgent info, medication etc. we also have a ‘Piece of Mind for Carers’ document that is kept in the hall cabinet and it gives all sorts of information should I be incapacitated. A copy is held by Social Services. It might be worth looking at these things to see what is captured and give you a starting point. This has reminded me to uodate them both!

 

[Sammy100333]

A spreadsheet of upcoming doctor and hospital appointments, phone calls, test results, ...... worked well for me.

Noted, thank you!

 

[Sammy100333]

Carers Uk have an app, maybe have a look at that.

This is really informative, thank you!
Do you by chance use this?

 

[Sammy100333]

I've read the original post too many times and just consider it so naive, caring in a care home plenty of time but primary care at home, just two people, there isn't just enough hours in a day, sport, and I hate to post so negatively, but colouring in, apart from anything else I'm colourblind so my wife with AZ used have me what colour meant we paint we had to buy.
Purple is just dark blue, don't even go there with red and green, nightmare when you have to read the testing kits.
Sorry to sound so negative, but it all sounds so very naive to me, well intentioned no doubt and thank you for posting but not for me. K

Thank you for letting me know! It really didn't cross my mind to include people who have colour-blindness.
It is difficult to manage. My mother also requires more people to support her as a caregiver, and it is quite difficult to make such provisions.
I do understand that there is a need for more accessible and affordable support services.

 

[Sammy100333]

Sammy, I think your idea is brilliant.
No 1. Especially, if you base it on the main caregiver as it should give every other person involved a holistic insight into the care given, what works and what doesn't.
Having previously worked as a nurse in hospitals and care homes 'continuity of care' is essential. Handing over to another person allows that person, whether family or professional to continue with the same care and routines.

I have only recently started on the journey with my mum having dementia, but I would definitely be for anything that helps with continuity of her car, for all involved.

Good luck with your studies.

Yes! "Continuity of care" is exactly what I want to aid.
I wondered how it works in hospitals, but I was unable to access those documents and systems.

Sending you strength & support in your caregiving journey.

 

[Sammy100333]

These things are great if whoever is taking over the care bothered to read them!
When my OH went into hospital I completed the This Is Me form that the Alzheimer's society have. I put it in an envelope labelled with name and what was inside. It outlined what he can and can't do and things he would need help with

Four days into his admission I noticed it unopened on the desk in the nurses station.

Mmm... so much for that!!

Very true. Unfortunately tools and resources are only useful if the carer is genuine and reliable.
I had a look through the "This is Me" document as well, and although it is very useful, its size and format can be tedious to fill out and refer back to.

 

[SAP]

This is really informative, thank you!
Do you by chance use this?

No I don’t because I don’t need to but I know others have found it useful for keeping family and paid carers in the loop. The care company who looked after my PWD used WhatsApp.

 

[Sammy100333]

I like the enthusiasm of these sorts of posts….unfortunately we all know the problems we encounter are systemic and need government and funding.

in terms of wellbeing …maybe some sort of dementia carer app?
a positive thought for the day? A couple of questions for reflection? Ie how have you looked after yourself today? what have you done well for your PWD? Which strategy has worked or not?

what can you be thankful for from today?

with easy access to phone line support for both dementia, carer and our own mental health …and quick read sections on how to get help with sundowning, continence care, what SALT team is etc 🤷‍♀️🤷‍♀️🤷‍♀️

linking into here….

Thank you so much for the questions prompts! I do understand the problems family carers face are more systemic.
A helpline sounds very useful!