Design for Dementia Family Caregiver Burnout - Feedback wanted

maggie6445

Registered User
Dec 29, 2023
1,012
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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.
Actually my OH was in the Acute Assessment Unit in our local hospital last week. I told them he had dementia ,but the blue butterfly was marked" no " on his notes. I wasn't allowed to stay with him although our hospital is supposedly signed up to John's Campaign allowing carers to stay.

When I asked why the blue butterfly wasn't on his notes I was told they are now using the Alzheimer's "This is me " ! I gave them a copy as I leave a copy in his overnight emergency bag!

Still couldn't answer why he was wearing an incontinence nappy instead of a pull up as it's easier for him to use the toilet with a pull up. I had told the health care worker and nurse who admitted him to the ward that he would need toileting assistance and pull up was in case he didn't get to the toilet in time. . Obviously couldn't be bothered to toilet him but left him to use the nappy! Pretty disgusting as dementia patients need continuity in care. It's a good job he was only there a night.
 

Chizz

Registered User
Jan 10, 2023
4,036
0
Kent
Hi @ maggie6445
You said, amongst other things "I wasn't allowed to stay with him although our hospital is supposedly signed up to John's Campaign allowing carers to stay."
I know it's a pain, and time and trouble, but did complain to PALS about this? How will they change unless they get complaints?

You also said " I had told the health care worker and nurse who admitted him to the ward that he would need toileting assistance and pull up was in case he didn't get to the toilet in time. . Obviously couldn't be bothered to toilet him but left him to use the nappy! Pretty disgusting..."
Again, did you complain to PALS to try and get system changed?
 

maggie6445

Registered User
Dec 29, 2023
1,012
0
Hi @ maggie6445
You said, amongst other things "I wasn't allowed to stay with him although our hospital is supposedly signed up to John's Campaign allowing carers to stay."
I know it's a pain, and time and trouble, but did complain to PALS about this? How will they change unless they get complaints?

You also said " I had told the health care worker and nurse who admitted him to the ward that he would need toileting assistance and pull up was in case he didn't get to the toilet in time. . Obviously couldn't be bothered to toilet him but left him to use the nappy! Pretty disgusting..."
Again, did you complain to PALS to try and get system changed?
Yes, @Chizz I have complained to PALS
 

Aqua Marina

Registered User
Dec 26, 2023
25
0
I've hardly time to do my housework, walk my dog enough, I definitely do not even have time for a carer's assessment as I'm always out looking after my parents, we do not have any spare time, I just slept watching tv, caring is exhausting. The idea may help others who are better supported when caring
 

Sammy100333

Registered User
Apr 5, 2024
11
0
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.
Hi Chizz.

Thank you for sharing your experience. I understand that things can become quite difficult as dementia progresses, especially for the carer. It is good that you have trained carers now. It is quite a tumultuous journey, having to balance your OH's needs as well as your own. There are many systemic problems in the healthcare system and ideally both the family and healthcare professionals meet halfway, but that doesn't seem to be the case.
I know my ideas are quite simple, stand-alone. It is certainly difficult to address issues related to dementia and care. I hope to keep speaking to people in this space so that I can make something that might just help even a handful of carers.
 

Sammy100333

Registered User
Apr 5, 2024
11
0
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.
Hi Lawson58,
Thank you for your kind words.
It has been difficult connecting with carers to have proper conversations, but I am still trying. Finding a common denominator solution that works for all might just be impossible.
It is very true that "tried and tested ways" are what work for each carer. It would be ideal if there were ways to help carers find these methods sooner, so as to set up healthy, sustainable systems.
If there is anything you'd like to share about what systems work for you, I would be grateful to hear about them.
Take care,
Sammy
 

Sammy100333

Registered User
Apr 5, 2024
11
0
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.
Hi Grannie G,
At my current level, I wouldn't be able to have any significant impact on a systems level.
But I do hope with all the research and investment in dementia care currently being carried out in the UK, systems change for the better.
Caregivers require a lot more credit and support than they currently receive.
I hope to contribute to this is some way.
Regards
 

Sammy100333

Registered User
Apr 5, 2024
11
0
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.
Yes, absolutely!
I have had some discussions along these lines with my mother. Carers go through so many changes in such a short span of time. Venting is quite necessary, even if it is about the person in care.
I was wondering about how private this diary needs to be. Since it may contain thoughts and feelings that are too personal, but necessary to write about. Should it be a physical diary? Or should it be a record on the phone/computer that cannot be accessed by anyone else?
A diary is a one-way interaction, but would it suffice? Else would it be more helpful if there way a way to anonymously share these deep personal thoughts with others in a safe space?
There a lot of questions I'm trying to answer, but if you have thoughts on any of them, please share.
Regards
 

Lawson58

Registered User
Aug 1, 2014
4,429
0
Victoria, Australia
Hi Lawson58,
Thank you for your kind words.
It has been difficult connecting with carers to have proper conversations, but I am still trying. Finding a common denominator solution that works for all might just be impossible.
It is very true that "tried and tested ways" are what work for each carer. It would be ideal if there were ways to help carers find these methods sooner, so as to set up healthy, sustainable systems.
If there is anything you'd like to share about what systems work for you, I would be grateful to hear about them.
Take care,
Sammy
My husband still takes care of his own hygiene, is continent and is capable of using the microwave to heat up meals (he is vegetarian). He still plays bridge at the club twice a week and online.

Though he can still do these things, I have used a diary and whiteboard so that he understands what is coming up, however he still gets muddled as to what day it is.

I don’t have carers coming in as we don’t need them yet. My biggest problem over the years has been behavioural ones as he was quite manipulative and bullying. Fortunately, I had many years of experience as a teacher and used those strategies to manage him. Though there is a leaflet about compassionate communication, it didn’t address the issues that I was dealing with so I resorted to doing what I knew.

I am not a bend over backwards person to get along with the person with the dementia. I don’t treat him like a child but have adapted my skills to be able to manage him. There are probably many who don’t agree with me but it worked for me.

I don’t think I am going to be of much help to you but please feel free to ask if there is anything else you would like to know.


Best wishes.
 

Alisongs

Registered User
May 17, 2024
177
0
East of England
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!
The biggest elephant in the room is that you're never explicitly told that family or friends are not legally obliged to care. That is the duty of Social Services. Get Social services assessments done for needs and ongoing care-should be the header on every page. Dementia is highly individual for carers and cared for. I don't think one format can do it all. I use an a4 page a day diary to record everything!