Research study: caring for a person with dementia and your experiences of social services
- Thread starter HarrietD
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Hi @Rishile, yes I'm very much interested in carers' stories. It doesn't matter how long it takes and you can choose what format you want to tell this - email, via Conversation option on this forum, or by Zoom or Teams face-to-face. I am happy with whatever you feel most comfortable with. If you would like to go forward, can you email me at karen.atkinson@sunderland.ac.uk and I will send you some more information about the study along with a Consent form to sign to agree participation. Looking forward to hearing from you. Karen
Thanks @sdmhred. I'm very much interested in real carers' stories and I agree, I feel it's important that these get heard by social work trainees. @Rishile, do contact me via email and we can take it from there (karen.atkinson@sunderland.ac.uk)
I agree service freewheeling downhill. What will you u guys so in ten fifteen years?? whenb someone with dementia who cant feed or drink themselves and who is incontinent or commicate doesn't qualify for funding or has to jump through hoops. And yet the ppl who run residential homes are allowed to run them for profit. When I say profit I mean millions m
I won’t be contacting you for pretty much the same reasons. That and if I had a spare hour or two I’d want it for myself. Thanks for asking and best of British
I am perhaps in a different situation as I worked with social services as a carers advisor as well as being a care myself. I have had good and bad experiences both personally and professionally of working with social workers, the upside of my role and experience meant that I could cut through the ******** ( no other word for it) and tell services what I expected, what their role was and how I would deal with anything less that the correct input. And believe me I have complained for my self and my mum but mostly for other cares being sidelined by shoddy services and complete lack of professionalism by social workers. You might not want my input but it’s there is you do. I no longer have a hands on care role and I took early retirement to manage the situation with my mum so I do have some time.
I was a previous member of this forum from 2015, my mother had started to show some early signs of dementia some years before and died a last year. My opinion of social services couldn't be lower, you could be forgiven sometimes for believing that their purpose is to make things difficult. I found them to be a very difficult organisation to deal with who completely lacked empathy and didn't listen.
Now you will have to excuse me for being vague here as you never know who is reading this as it is a public forum, so I'm not going into much detail. The actions of my sibling (who has a long track record for trouble and a chaotic life) and her partner resulted in me being unable to have contact with my mother for the last few years of her life unless I agreed to their ridiculous terms and conditions. According to social services, it was a family disagreement and they could not get involved. It absolutely beggars belief, there were so many red flags that something was wrong, in fact it makes me wonder just how obvious it has to be before action is taken.
What I would say to social workers is this: When I approached SS for help, I was desperate, burnt out and already been struggling for years and I'm sure that this is the case for many people. Please please listen to people and while you have your procedures to follow, just remember that you are dealing with people's lives, we are not just a procedure, a set of tick boxes and menus on a computer screen. I really didn't feel like they were interested.
There also seems to be a problem with the way that capacity is assessed. I don't know enough about the mental health act to know if this is an issue with the act itself or they way it is interpreted and applied, but assessing someone as having capacity to make decisions that they don't understand is not protecting them or in their best interests.
Hindsight is a wonderful thing and I would do many things differently and wouldn't put up with what I did at the time, but at the time I was exhausted after years if caring.
Now you will have to excuse me for being vague here as you never know who is reading this as it is a public forum, so I'm not going into much detail. The actions of my sibling (who has a long track record for trouble and a chaotic life) and her partner resulted in me being unable to have contact with my mother for the last few years of her life unless I agreed to their ridiculous terms and conditions. According to social services, it was a family disagreement and they could not get involved. It absolutely beggars belief, there were so many red flags that something was wrong, in fact it makes me wonder just how obvious it has to be before action is taken.
What I would say to social workers is this: When I approached SS for help, I was desperate, burnt out and already been struggling for years and I'm sure that this is the case for many people. Please please listen to people and while you have your procedures to follow, just remember that you are dealing with people's lives, we are not just a procedure, a set of tick boxes and menus on a computer screen. I really didn't feel like they were interested.
There also seems to be a problem with the way that capacity is assessed. I don't know enough about the mental health act to know if this is an issue with the act itself or they way it is interpreted and applied, but assessing someone as having capacity to make decisions that they don't understand is not protecting them or in their best interests.
Hindsight is a wonderful thing and I would do many things differently and wouldn't put up with what I did at the time, but at the time I was exhausted after years if caring.
Currently dealing with SS and its not going well! Thats putting it politely.
She is showing great disregard to how my mum is affected, or not, by Dementia. Completely ignoring her wishes.
She is claiming mum is incapacitated and incapable, but this couldnt be further from the truth. Its really insulting to hear her speak in such detrimental terms and I have called her out repeatedly on this.
I actually stated in a complaint that she needs to undergo training in Dementia and how it affects different people and in so many different ways, not that everyone is on a fast decline from diagnosis to dead in a year!
Not to mention being rude and ignorant in her behaviour to myself as I am now challenging her. And seemingly seem to know a lot more than she does about A) Dementia B) Residential Care rights
She is showing great disregard to how my mum is affected, or not, by Dementia. Completely ignoring her wishes.
She is claiming mum is incapacitated and incapable, but this couldnt be further from the truth. Its really insulting to hear her speak in such detrimental terms and I have called her out repeatedly on this.
I actually stated in a complaint that she needs to undergo training in Dementia and how it affects different people and in so many different ways, not that everyone is on a fast decline from diagnosis to dead in a year!
Not to mention being rude and ignorant in her behaviour to myself as I am now challenging her. And seemingly seem to know a lot more than she does about A) Dementia B) Residential Care rights
Hi, if your research is still ongoing I’d be happy to contribute. My experience of battling with social services for my mum is probably very typical- mum deteriorated gradually over lockdown, we started with carers coming to the house and gradually increased visits. As soon as it became apparent she could not be cared for at home and would be eligible for funding, that was when the system became nightmarish and every interaction becomes a minefield. We have a long-ish story to share so would be happy to discuss 1:1. But safe to say it has been traumatic and enormously time consuming- I should calculate the hours i spent simply trying to navigate the system, but it must be in the 1000s.
The other thing I would offer is that it is apparent to me that much of the bureaucracy and process in the system is designed for a service that simply doesn’t exist in our local area (didn’t ever?- I don’t know). For example- the DOLs assessment. Mums was completed by a social worker who has never met her before and told me that she might recover from her Alzheimer’s’ ?!! and a doctor who asked her (i kid you not) 2 questions before concluding she was confused and wouldn’t look after herself. I agree with the principle of the DoLs assessment- but what’s the point when conducted as above? Similarly for placement reviews, best interest meetings, hospital discharge meetings, CHC assessments, care plans…..it’s all absurd bureaucracy when treated as a form filling exercise by people with little to no knowledge of the person, whose opinion carries more weight than the family and carers of the person. My Mum has a care plan which made me laugh out loud- it doesn’t even sound like her, there is no prospect that most of it is feasible, let alone that there is resource to do it. I think the good practitioners in the system (in mums case, the carers and nurses in her home) know this and circumvent these absurdities whilst having to fill in the 10000s of pointless forms.
I’m not advocating for removing the ambition of person-centred care with good oversight- but the system as designed and the reality of how it actually works are so very at odds that it’s absurd to continue with processes that are resource consuming and traumatic to the people concerned. And unfortunately, the propagation of the ‘get diagnosed and get help’ myth is a bit toxic also. People (including me in the past) expect the state to support those with dementia and their families with practical help, but in reality, you are faced with at best a wall of bureaucracy and indifference, from all concerned including the NHS. Sorry if that’s a bit downbeat!
The other thing I would offer is that it is apparent to me that much of the bureaucracy and process in the system is designed for a service that simply doesn’t exist in our local area (didn’t ever?- I don’t know). For example- the DOLs assessment. Mums was completed by a social worker who has never met her before and told me that she might recover from her Alzheimer’s’ ?!! and a doctor who asked her (i kid you not) 2 questions before concluding she was confused and wouldn’t look after herself. I agree with the principle of the DoLs assessment- but what’s the point when conducted as above? Similarly for placement reviews, best interest meetings, hospital discharge meetings, CHC assessments, care plans…..it’s all absurd bureaucracy when treated as a form filling exercise by people with little to no knowledge of the person, whose opinion carries more weight than the family and carers of the person. My Mum has a care plan which made me laugh out loud- it doesn’t even sound like her, there is no prospect that most of it is feasible, let alone that there is resource to do it. I think the good practitioners in the system (in mums case, the carers and nurses in her home) know this and circumvent these absurdities whilst having to fill in the 10000s of pointless forms.
I’m not advocating for removing the ambition of person-centred care with good oversight- but the system as designed and the reality of how it actually works are so very at odds that it’s absurd to continue with processes that are resource consuming and traumatic to the people concerned. And unfortunately, the propagation of the ‘get diagnosed and get help’ myth is a bit toxic also. People (including me in the past) expect the state to support those with dementia and their families with practical help, but in reality, you are faced with at best a wall of bureaucracy and indifference, from all concerned including the NHS. Sorry if that’s a bit downbeat!
I would be interested in supporting this, I too am a SW student in my 3rd year. I am also an informal carer for my mum with Alzheimer's.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, Michelle
I have been on my council's waiting list for a carer's assessment & help for over a year now!!!
That's terrible. I was fortunate that I didn't have to wait too long for a carer's assessment and they did it over the phone. It was an assessment of mum that took a long time. I did phone several times as mum got worse, to let them know about her changing needs, hoping it would speed things up. Sadly mum died soon after.
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