Research study: caring for a person with dementia and your experiences of social services

Karen Atkinson

Registered User
Apr 5, 2024
32
0
I would echo all these points, and add the following :

Having to speak to around 6 different social workers in around as many months.

SW's not even meeting the client or carer (after even the local hospital dropped the requirement for masks to be worn after covid, would SW's come out? No.) Only one ever met mum and me and discussed things at length to come up with something we all agreed on. Everyone else made decisions over the phone only.

Being told I would be listened to. Was I? No.

One SW didn't even know how to do the job. This came out because I put an official complaint in and their manager got involved and put it right. This was after 3 months of me making nearly daily phone calls or emails to discuss the issue with said social worker, as well as requesting to be transferred to another SW and being told no.

One SW wanted to put a care plan in place for dad (I had both mum & dad with different problems at the same time), which I knew would put both him and mum at risk of harm. After trying to explain at length why - I was dismissed with "well we have to try this first" - end of story. Yes, you'll be listened to alright. All from a SW who had not even met any of us. Obviously a complete stranger knows more about what mum & dad need than I do.

SW's obviously do not understand dementia and the way it affects pwd's behaviour or the impact it can have on the sufferer and the carer. Maybe they should spend at least 6 months of their training working in a dementia care home, because now we're all living longer dementia is becoming an epidemic and it needs to be properly understood.

I think that's enough, my blood pressure will be going through the roof again.
@yoy - thanks so much for this - this is all really valuable information and I very much appreciate you taking the time to respond. There's no pressure at all but if you did want to add anything else, please do feel free to start a conversation on this forum or via email (karen.atkinson@sunderland.ac.uk). The more information gained, the more can be fed back to trainee social work students so they are, at the least, aware of the challenges carers face.
 

TessB

Registered User
Nov 14, 2023
120
0
Thanks TessB. I got your email and emailed back. Did you get my reply to you? Thanks, Karen
Hi Karen. Yes, I did get your email. I can't complete the consent form on my phone/tablet though. And I've now managed to lock myself out of my emails. Can we do the consent form by typed agreement over the forum?
 

scout57

New member
Apr 10, 2024
4
0
i have been my wife's for coming on for a year and a half since she was diagnosed with dementia and i manage her daily needs on my own, I have contacted Social Services (requested help in Nov 22) since then one phone call and nothing from them since. i do not get a lot of time for myself.. i am dealing with the swift changes and the changes i have to deal with are hard. my own health is fairly good, but i find my mental health is affected by the constant demands placed by daily caring.
 

Francisco

Registered User
Jul 26, 2020
80
0
Hello everyone,

It's lovely to be part of this group and I am really interested in learning more about your experiences of looking after a person with dementia. Just to add to Harriet's post, all responses will remain anonymous. Please get in touch via the contact details in Harriet's post if you have further questions about the research or want to take part in a 1-1 chat (this can be done via email, message, Skype, Zoom or Teams). Thanks. Karen
Hi Karen, I'd be happy to talk about my experiences of caring for my partner. Email might be the easiest for me. Thanks and Regards,
 

Jo P

New member
Feb 16, 2024
4
0
I am happy to talk to you about living with my mum who has dementia. my husband and I have been caring for her the past 3 years. We have a private carer who helps and have just started her at day care centre. She’s been unsettled tonight which is why Im still awake! Lol
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
I am happy to talk to you about living with my mum who has dementia. my husband and I have been caring for her the past 3 years. We have a private carer who helps and have just started her at day care centre. She’s been unsettled tonight which is why Im still awake! Lol
Hi Jo P, thanks so much for getting in touch and offering to participate. It's much appreciated. I'll be in touch through Conversations on this forum soon.
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
i have been my wife's for coming on for a year and a half since she was diagnosed with dementia and i manage her daily needs on my own, I have contacted Social Services (requested help in Nov 22) since then one phone call and nothing from them since. i do not get a lot of time for myself.. i am dealing with the swift changes and the changes i have to deal with are hard. my own health is fairly good, but i find my mental health is affected by the constant demands placed by daily caring.
Hello scout57,
Thanks so much for taking the time to reply. I can see how the fast pace of changes and the caring demands that carers face might be really challenging and I would be interested in learning more about these. If you would be willing to talk further, please could you email me at karen.atkinson@sunderland.ac.uk or open a Conversation on this forum so I could tell you a little more about the study. There's no pressure, though, and any participation is entirely voluntary and can be at your pace. Thanks again, Karen
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
I would echo all these points, and add the following :

Having to speak to around 6 different social workers in around as many months.

SW's not even meeting the client or carer (after even the local hospital dropped the requirement for masks to be worn after covid, would SW's come out? No.) Only one ever met mum and me and discussed things at length to come up with something we all agreed on. Everyone else made decisions over the phone only.

Being told I would be listened to. Was I? No.

One SW didn't even know how to do the job. This came out because I put an official complaint in and their manager got involved and put it right. This was after 3 months of me making nearly daily phone calls or emails to discuss the issue with said social worker, as well as requesting to be transferred to another SW and being told no.

One SW wanted to put a care plan in place for dad (I had both mum & dad with different problems at the same time), which I knew would put both him and mum at risk of harm. After trying to explain at length why - I was dismissed with "well we have to try this first" - end of story. Yes, you'll be listened to alright. All from a SW who had not even met any of us. Obviously a complete stranger knows more about what mum & dad need than I do.

SW's obviously do not understand dementia and the way it affects pwd's behaviour or the impact it can have on the sufferer and the carer. Maybe they should spend at least 6 months of their training working in a dementia care home, because now we're all living longer dementia is becoming an epidemic and it needs to be properly understood.

I think that's enough, my blood pressure will be going through the roof again.
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
Thank-you again for sharing these experiences and I'm sorry to hear of your experiences. It must have been hugely frustrating to feel not listened to.
 

DeeCee7

Registered User
Oct 13, 2023
321
0
Further to my own, limited, experience and years of participating in this forum, I'd make the following points.

1. It's a 2-tier system - self funders are treated differently to people who would/will be council funded. This seems wrong.

2. There's a general lack of continuity and poor communication. Emails go unanswered, the promised telephone callbacks never happen.

3. When it comes to moving someone to a care home, the system becomes very adversarial. Family wish their loved one to move to a care home for their own safety or due to carer exhaustion. Social Services often refuse and would rather wait till their maximum of '4 care visits per day' at home has been tried and failed. In other words, family have to wait for a crisis, often resulting in harm to the person with dementia. (Not to mention their exhausted family.) Is it any wonder it comes across as putting budgets before the wellbeing of the person with dementia?

4. The same often applies to a DoLS assessment. My own experience of this was extremely bad. To be told I couldn't be my mother's RPR because I wanted her to stay in the care home I'd found for her (she clearly needed 24/7 care for the rest of her life) but mum - apparently - wanted to go 'home' was simply ridiculous. Perhaps someone can tell me why a DoLS SW will believe every word a person with dementia says ('I do everything for myself, I don't need any help,' etc.) and completely disregard everything they are told by a person (e.g. me) who knows that person better than anyone?

5. Perhaps you can also explain to me why a social worker has the ultimate say over mental capacity and can go against the expressed opinions of medical consultants? The opinions of medically-untrained social workers are not considered to trump medics with any other disease. (And rightly so!)

6. Social Services need to stop fighting with the NHS over who pays for care.
Spot on!
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
Hello scout57,
Thanks so much for taking the time to reply. I can see how the fast pace of changes and the caring demands that carers face might be really challenging and I would be interested in learning more about these. If you would be willing to talk further, please could you email me at karen.atkinson@sunderland.ac.uk or open a Conversation on this forum so I could tell you a little more about the study. There's no pressure, though, and any participation is entirely voluntary and can be at your pace. Thanks again, Karen
Sorry, @scout57 - I keep forgetting to tag people in my reply! Thanks for your comment. Please see my reply above. Karen.
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
Hi @SeaSwallow did you manage to access the documents I posted above? Just wondering if you were still interested in participating in the research. Thanks, Karen
 

Rishile

Registered User
Dec 28, 2022
382
0
Can I ask if this is a question/answer request or do you want a 'story'? I have a long story to tell but it could take a long time for me to complete as my carer duties take up a lot of my time.
 

Staff online

Forum statistics

Threads
139,902
Messages
2,011,586
Members
91,625
Latest member
Finbar54