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

[HarrietD]

Hi everyone,

Dr Karen Atkinson from the University of Sunderland will be undertaking approved research on Dementia Support Forum between April and October this year.

As a senior lecturer in social work, Karen wants students to be better informed about the carer experience and is very interested in learning about the challenges and rewards you may have of caring for a person with dementia. In addition, she is also interested in what your experiences of social services have been (good or bad!). As well as looking at posts in this area, Karen would also like to talk on a 1:1 basis with anyone who would like to contribute to this research.

She can be contacted either by emailing karen.atkinson@sunderland.ac.uk or by directly messaging her through this forum by clicking on her name and then 'Start conversation'.

A big thank you to those who are able to take part

 

[Karen Atkinson]

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

 

[nitram]

she is also interested in what your experiences of social services have been (good or bad!). As well as looking at posts in this area,

If you have an hour or two to spare you could start here

 

[Karen Atkinson]

If you have an hour or two to spare you could start here

Thanks nitram.

 

[Karen Atkinson]

Hi everyone,

Dr Karen Atkinson from the University of Sunderland will be undertaking approved research on Dementia Support Forum between April and October this year.

As a senior lecturer in social work, Karen wants students to be better informed about the carer experience and is very interested in learning about the challenges and rewards you may have of caring for a person with dementia. In addition, she is also interested in what your experiences of social services have been (good or bad!). As well as looking at posts in this area, Karen would also like to talk on a 1:1 basis with anyone who would like to contribute to this research.

She can be contacted either by emailing karen.atkinson@sunderland.ac.uk or by directly messaging her through this forum by clicking on her name and then 'Start conversation'.

A big thank you to those who are able to take part

Thanks HarrietD.

 

[JAcky1205]

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, I’d be very happy to discuss my experiences over the last 12 months, especially where social services, care homes and dom-care is concerned.

 

[TessB]

The only experience I have so far with Social Services is chasing them up. I was told 5 weeks ago that a urgent assessment would be requested but they couldn't say when. There is a waiting list. In the meantime I am trying to do everything and am very tired

 

[yoy]

I've thought about this thread for a while. My experiences of social workers and social services left me with an incredibly low opinion of them (that's putting it politely). Having thought about it I'm not sure that I want to re-live it all again or that I could keep it civil one to one.

 

[Grannie G]

My husband died in 2014

We had excellent support from social services and our personal social worker and it makes me sad and cross to hear how the service has gone steadily downhill since then.

 

[Dave63]

From the limited involvement of social services with our mums case we started with person (A) who was the gold standard and then person (B) who should never have been in the job.

The problem with social services as a whole is that it's chronically under-funded, under resourced, and twenty odd years behind the population growth.

Social services, like others in the social care sector, have to struggle with trying to squeeze 10Ib of stuff into a 2Ib bucket and thats always going to effect the level of service people receive irrespective of their diagnosis.

 

[Izzy]

My husband died in 2016 and my mum in 2011.

I’m in Scotland so not sure if you want experiences from here!

We had the same care manager for both my mum and my husband. He was excellent. I couldn’t complain about the attention and help we got. Sadly I think it often depends on the experience and the ability of the care manager here.

 

[Rayreadynow]

I found that Social Services ( social workers ) are willing to do their bit of the puzzle and nothing else. If for instance a PWD is on the Mental Health Teams caseload then Community Social Workers are nothing to do with them. They dont tell you this because, after all, to the layman a Social Worker is a Social Worker. And its all about case loads and priorities. As a relative your PWD is just one of a large case load, and there may well be internal targets and priorities that you are not aware of and that is way its important to keep regular contact with Social services for updates.

 

[Karen Atkinson]

Hi, I’d be very happy to discuss my experiences over the last 12 months, especially where social services, care homes and dom-care is concerned.

Hi, I’d be very happy to discuss my experiences over the last 12 months, especially where social services, care homes and dom-care is concerned.

Thanks JAcky1205 - much appreciated and I'm very interested in hearing your views.

 

[Karen Atkinson]

The only experience I have so far with Social Services is chasing them up. I was told 5 weeks ago that a urgent assessment would be requested but they couldn't say when. There is a waiting list. In the meantime I am trying to do everything and am very tired

Hi TessB, this is really important information to input into the research findings so thanks for taking the time to reply. If you want to volunteer to talk a little more about this and take part in the study, you can contact me by directly messaging me through this forum by clicking on my name and then 'Start conversation', or by emailing me at karen.atkinson@sunderland.ac.uk

 

[Karen Atkinson]

I've thought about this thread for a while. My experiences of social workers and social services left me with an incredibly low opinion of them (that's putting it politely). Having thought about it I'm not sure that I want to re-live it all again or that I could keep it civil one to one.

Hello yoy, thanks for replying. It's so important that carers voices are heard and I appreciate you taking the time to post. Participation in the research study is entirely voluntary and I can understand you not wanting to re-live the experience again. If you do change your mind, you would be very welcome to participate in the study. You can contact me by directly messaging me through this forum by clicking on my name and then 'Start conversation', or by emailing me at karen.atkinson@sunderland.ac.uk Thanks again.

 

[Karen Atkinson]

My husband died in 2016 and my mum in 2011.

I’m in Scotland so not sure if you want experiences from here!

We had the same care manager for both my mum and my husband. He was excellent. I couldn’t complain about the attention and help we got. Sadly I think it often depends on the experience and the ability of the care manager here.

Hello Izzy, thanks for replying. I'm more than happy to hear from those located in Scotland. I understand that policy and legislation is different but your experience as a carer receiving services is really valuable to hear about.

 

[Izzy]

Hello Izzy, thanks for replying. I'm more than happy to hear from those located in Scotland. I understand that policy and legislation is different but your experience as a carer receiving services is really valuable to hear about.

Great - thank you!

 

[Karen Atkinson]

From the limited involvement of social services with our mums case we started with person (A) who was the gold standard and then person (B) who should never have been in the job.

The problem with social services as a whole is that it's chronically under-funded, under resourced, and twenty odd years behind the population growth.

Social services, like others in the social care sector, have to struggle with trying to squeeze 10Ib of stuff into a 2Ib bucket and thats always going to effect the level of service people receive irrespective of their diagnosis.

Hi Dave63. Thanks for replying. It's interesting that you have had so very different experiences of service provision. If you want to volunteer to talk a little more about this and take part in the study, you can contact me by directly messaging me through this forum by clicking on my name and then 'Start conversation', or by emailing me at karen.atkinson@sunderland.ac.uk

 

[Karen Atkinson]

I found that Social Services ( social workers ) are willing to do their bit of the puzzle and nothing else. If for instance a PWD is on the Mental Health Teams caseload then Community Social Workers are nothing to do with them. They dont tell you this because, after all, to the layman a Social Worker is a Social Worker. And its all about case loads and priorities. As a relative your PWD is just one of a large case load, and there may well be internal targets and priorities that you are not aware of and that is way its important to keep regular contact with Social services for updates.

Hello Rayreadynow, thanks for replying. I can see how it must be really difficult to navigate a way through the systems and different teams in social services. If you want to volunteer to talk a little more about this and take part in the study, you can contact me by directly messaging me through this forum by clicking on my name and then 'Start conversation', or by emailing me at karen.atkinson@sunderland.ac.uk

 

[Karen Atkinson]

My husband died in 2014

We had excellent support from social services and our personal social worker and it makes me sad and cross to hear how the service has gone steadily downhill since then.

Thanks so much for replying. It's interesting that you see the service having gone downhill but I am pleased to hear you previously had excellent support when you needed it.

Great - thank you!

Hi Izzy, can you contact me by directly by messaging me through this forum (click on my name and then 'Start conversation'), or by emailing me at karen.atkinson@sunderland.ac.uk. At the moment (I think because I am new to the forum), I can't see an option to open Conversations myself (I think I have to post 10 times to do that)