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Digital technology to help support caregivers

MattB

New member
Feb 8, 2022
6
0
Hello everyone!

I'm Matt - a neuroscientist working in academia and together with two of my colleagues, we want to understand how digital technologies can be used to improve the lives of people with dementia and their caregivers.

Can technology help relieve some of the challenges you face? We would love to get your thoughts!

We would really appreciate if you could spare a few minutes of your time to share some of your experiences with us.

The key questions for us are how many hours a week do you spend providing care, do you feel sufficiently supported to carry out your caring responsibilities, what resources have you found helpful/not helpful and do you feel your physical/mental health has deteriorated since becoming a carer?

This is informal research, aiming to help us generate new ideas for helping carers. Based on the feedback we receive we hope to try to bring a digital solution to the problems you face to life. If you have any questions or further comments, please post them below and I would be happy to answer.

Many thanks for your time!

Matt
 

DreamsAreReal

Registered User
Oct 17, 2015
431
0
I’m not a full time carer, but I’m the main caregiver for my mum with dementia. If that’s any use.

How many hours a week: Between 12 - 20 hrs, depending on her needs. Sometimes more.

Feel sufficiently supported: Not really, but mum very resistant to outsiders help. Social services provide carer to give daily meds.

Helpful resources: this forum’s been a godsend. Memory clinic somewhat helpful. GP tries his best and is willing to help.

Unhelpful: I find the majority of so called professionals know less about how to communicate with a person with dementia than I do. I’ve been shocked at how little they understand.

Physical/Mental health deteriorated: Mental health certainly in the early days but CBT helped enormously with anxiety and constant worrying. Physical health, migraines occasionally from stress but meds help.

I don’t really know what you mean by digital solution, but I find new tech difficult to understand and mum can’t even open a can of soup or work her TV, so bear in mind that many people with dementia are elderly and confused and so are some of their carers!
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,494
0
Yorkshire
I am hoping that you have spent quite some hours reading lots of threads in all of the forums ... doing that will give you a vivid picture of the lives, experiences and struggles of the members here ... and will probanly answer your questions and some you would never have thought to ask
 

MattB

New member
Feb 8, 2022
6
0
I’m not a full time carer, but I’m the main caregiver for my mum with dementia. If that’s any use.

How many hours a week: Between 12 - 20 hrs, depending on her needs. Sometimes more.

Feel sufficiently supported: Not really, but mum very resistant to outsiders help. Social services provide carer to give daily meds.

Helpful resources: this forum’s been a godsend. Memory clinic somewhat helpful. GP tries his best and is willing to help.

Unhelpful: I find the majority of so called professionals know less about how to communicate with a person with dementia than I do. I’ve been shocked at how little they understand.

Physical/Mental health deteriorated: Mental health certainly in the early days but CBT helped enormously with anxiety and constant worrying. Physical health, migraines occasionally from stress but meds help.

I don’t really know what you mean by digital solution, but I find new tech difficult to understand and mum can’t even open a can of soup or work her TV, so bear in mind that many people with dementia are elderly and confused and so are some of their carers!
Thank you very much for your feedback, it's really appreciated.
In terms of a solution, I was referring to whether technology could assist with some of the obstacles that you face in your day-to-day life as caregiver for example by helping you share some of your responsibilities i.e. with other family members or through professional support.
 

MattB

New member
Feb 8, 2022
6
0
I am hoping that you have spent quite some hours reading lots of threads in all of the forums ... doing that will give you a vivid picture of the lives, experiences and struggles of the members here ... and will probanly answer your questions and some you would never have thought to ask
 

try again

Registered User
Jun 21, 2018
513
0
Same as dreams are real

Luckily now have carers going in to mum who lives on her own to give her meds, help with hygiene, food etc. Though having said that no one fed her yesterday and I had to complain to the care office

Help is disjointed, and often when it comes seems to be duplicated causing the family carer more work

My stress, anxiety and depression levels are through the roof having reached crisis point in autumn . It takes a long time to come down and the smallest thing can send it soaring and keep it high

Technology, the most useful thing we had was an echo show where we dropped in to supervise tablet taking. Worked for about a year to her confusion got too much and hearing too poor, even at full volume, though of course it could be her comprehension as much as hearing.
The clocks displaying date, time, and time of day also had there use for a couple of years but we are beyond that now.

Two things I would suggest would be useful. A system to manage the overall care and progress of PWD linking doctors, nurses, memory clinic, social services, carer companies and family carer. The amount of duplication that occurs is incredible, I have had in essence , the same meeting three times in one week.
Her carers neglected to give her an meal yesterday evening, I'd like to see care plans on line and tracked. No excuse for not preparing a meal.

I've also yet to find a remote monitoring system that is totally fit for purpose.
 

MattB

New member
Feb 8, 2022
6
0
Yes indeed, this forum has been incredibly insightful. My grandmother and uncle had dementia so I have also seen the profound impact caring for a loved one with dementia can have on family members.
 

MattB

New member
Feb 8, 2022
6
0
Same as dreams are real

Luckily now have carers going in to mum who lives on her own to give her meds, help with hygiene, food etc. Though having said that no one fed her yesterday and I had to complain to the care office

Help is disjointed, and often when it comes seems to be duplicated causing the family carer more work

My stress, anxiety and depression levels are through the roof having reached crisis point in autumn . It takes a long time to come down and the smallest thing can send it soaring and keep it high

Technology, the most useful thing we had was an echo show where we dropped in to supervise tablet taking. Worked for about a year to her confusion got too much and hearing too poor, even at full volume, though of course it could be her comprehension as much as hearing.
The clocks displaying date, time, and time of day also had there use for a couple of years but we are beyond that now.

Two things I would suggest would be useful. A system to manage the overall care and progress of PWD linking doctors, nurses, memory clinic, social services, carer companies and family carer. The amount of duplication that occurs is incredible, I have had in essence , the same meeting three times in one week.
Her carers neglected to give her an meal yesterday evening, I'd like to see care plans on line and tracked. No excuse for not preparing a meal.

I've also yet to find a remote monitoring system that is totally fit for purpose.
Yes, we also identified being able to manage appointments with your support network as one potential area where digital tools could help. I can imagine it is very frustrating having repeat meetings when you already have limited time.
Do you typically have different carers come to the house each time? I wondered if this might be related to how open your mum is to help.
I don't want to ask too many questions but could you elaborate on how the remote monitoring systems aren't fit for purpose? Do you mean with respect to GPS tracking devices?
 

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