capacity or not?

MLM

Registered User
Jun 17, 2014
130
Manchester
If the OT assessment is taking a long time I suggest you follow it up and pester the SW to chase it up. I've found the problem is that there are very few OTs assigned to an area so they get hugely back logged with assessments.

In my view a good social worker will be happy to send a message to check the time you are likely to wait. On the system we use at work it takes only minutes to send a message through and they should respond within 24-48 hours! I've never had to wait longer and if I did have to wait I would be on the phone. I hate keeping people waiting because I know how stressful it is to be left waiting when you think someone's house is unsafe.
 

MLM

Registered User
Jun 17, 2014
130
Manchester
I don't like the idea of waiting for the train to crash either. It is very difficult to get the balance right between leaving someone to it and knowing when to intervene. Some people abuse the system though and try to claim their relative lacks capacity for their own benefit too which doesn't help matters!

Funnily enough the most difficult thing to intervene with I've found though is when a carer puts themselves at risk of burnout through their sense of duty towards their lover one. It is very difficult to persuade some people to accept help before "the train crashes" because of their sense of responsibility in that respect.
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
Maybe it's because my mum isn't in hospital and therefore not costing SS money that there is no sign of the promised OT assessment visit after god knows how many weeks waiting. Call me a cynic, but if she fell and broke her hip I suspect she'd get a lot more attention! I don't want to wait till something dreadful happens.
Have to say I agree with you Pickles (love that name). When Pete was at home I asked SW to ask OT to come out as I hadn't been able to shower/bath him for 7 weeks-considering as he was doubly incontinent I'm sure you can understand it was fairly urgent:eek:He also had psoriasis in an, um well, delicate place around his bottom:eek: Up til then I had been rolling up my trousers to get him out of the bath but I'm vertically challenged and had a great deal of difficulty manually pulling him upright. Another 7 weeks went by before the head of OT visited (complaints by me)

Looked at the books on our shelves and Mrs OT said 'well Mr T, what are you reading now'. Er Hello Pete by then couldn't read and hadn't been able to for years. The books were there purely for him to trash:( Anyway I digress. Mrs OT tried to get Pete in/out of the bath and failed. No surprise there then. A swing over bath seat arrived after a couple of weeks. Man who delivered said seat was told not to install it by OT:confused:

It never did get installed as Pete then was placed in a CH. So much for OT helping.

Keep pushing for the OT assessment Pickles but make sure everything is in place for your Mum. Don't let SS/OT promise to get everything in place once she is at home

Take care

Lyn T
 

MLM

Registered User
Jun 17, 2014
130
Manchester
I do think part of the problem is how many different scenarios the mental capacity act has to apply to. It isn't solely for situations like this and a common result of any legislation that is expected to cover a wide range of problems is that there are flaws to the system, then add an ever decreasing budget with an ever increasing group of people in need of support and you get riskier situations as a result! I certainly don't think dementia care is perfect, in fact I think most people are failed to some degree by the system. Look at my family's situation: father in law just been diagnosed age 55, social worker hasn't told them about support networks available to them, some services aren't even accessible under 65, day centres and residential homes are in no way suitable should he need them in even 10 years time as they are typically for much older adults. To say there is a lot of focus on dementia and "dementia friendly cities" and so on at the moment there is a shocking lack of money going into schemes to support people.

Believe me, I'm not under the illusion that dementia care and the legislation I work with is fitting to meet the needs of our circumstances! But at least the idea is that liberty is protected and supported where possible is at the heart of it. That's a good thing even if there are certainly flaws to it in some scenarios.
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
I do think part of the problem is how many different scenarios the mental capacity act has to apply to. It isn't solely for situations like this and a common result of any legislation that is expected to cover a wide range of problems is that there are flaws to the system, then add an ever decreasing budget with an ever increasing group of people in need of support and you get riskier situations as a result! I certainly don't think dementia care is perfect, in fact I think most people are failed to some degree by the system. Look at my family's situation: father in law just been diagnosed age 55, social worker hasn't told them about support networks available to them, some services aren't even accessible under 65, day centres and residential homes are in no way suitable should he need them in even 10 years time as they are typically for much older adults. To say there is a lot of focus on dementia and "dementia friendly cities" and so on at the moment there is a shocking lack of money going into schemes to support people.

Believe me, I'm not under the illusion that dementia care and the legislation I work with is fitting to meet the needs of our circumstances! But at least the idea is that liberty is protected and supported where possible is at the heart of it. That's a good thing even if there are certainly flaws to it in some scenarios.
My Husband was at Daycare at the age of 65. In a CH at 66, he is now 67. Out of the 15 residents, apart from my husband, there are 2 others who are both aged 65.That's 20 per cent of the residents who are considered 'young'. All three are extremely severely affected and are going through the various 'stages' at a rare rate of knots.My Husband became ill aged 59 however, if only the Neurologist had bothered to look at his scan properly, he would have received help earlier. By the time he was diagnosed officially he was already at moderate/severe stage.

This brings me to your point about not judging capacity from something that you had read or been told. If only the 'experts' had listened to me Pete would have been diagnosed earlier.By the time he was diagnosed he had a MMSE of 7/30. Maybe they thought that I was one of those people who you say want their loved ones assessed as having no capacity for their own benefit.(can't say I've had any benefit in Pete being assessed as having no capacity.)

Throughout all of this nightmare the Carers at Pete's CH have believed me (because they are thumped/pinched/throttled as often as I've been.) Pete's out patient Consultant believed me as did his in Hospital Consultant. It was the people who were my first point of contact who didn't.i e SW and his first CPN. Thank goodness the second CPN has some compassion.
 

MLM

Registered User
Jun 17, 2014
130
Manchester
Assessing capacity and diagnosing dementia are not the same thing. Medical professionals time and time again treat these things interchangeably but they are NOT the same thing. Wanting a diagnosis is understandable. You can have a diagnosis of dementia and not have your capacity affected at all though, which is the case for my father in law as they pushed for an answer by paying for a privet consultancy who then was able to refer them for testing sooner. Although the tests you have talked about are useful for determining whether they need to investigate further, they actually shouldn't be used alone to determine capacity as capacity should be tested in relation to a subject matter in particular, for example if you needed/wanted to sell your house in your joint names to fund private care, you would need to determine if your partner understood the house would be sold aka no longer yours and no longer where you would both be living, the money would be used to fund the care etc. and not understanding an element of that, even if understanding some of it, or understanding it but only for an hour and then forgetting, would make you start questioning capacity. That doesn't mean that person doesn't have capacity in other respects of their life so you have to constantly be assessing capacity, even if someone has already been said to lack capacity in one respect.

An example would be not having capacity to physically managing your money and bank accounts but still knowing what to spend your money on and what you don't want your money being spent on. Therefore you couldn't make a statement like "he doesn't have capacity to manage his finances" because that isn't completely true and treating someone like that would be overstepping the mark. That wouldn't be fair.

It is all case by case. You have to judge each case in its own right. Your post has made me understand why there is frustration about determining capacity now though by thinking of it as being part of diagnosis.
 

MLM

Registered User
Jun 17, 2014
130
Manchester
Capacity can be affected by dementia but it is not a requirement for a diagnosis. Delay in diagnosis should not result from a person being seen to still have capacity in any respect. Concerns over a person having cognitive difficulties should be investigated regardless of capacity because there are a number of things that can cause similar symptoms to dementia.

I hope you don't think you shouldn't have your concerns ignored in terms of investigating your loved ones problems because that certainly isn't the case at all.
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
I hope you don't think you shouldn't have your concerns ignored in terms of investigating your loved ones problems because that certainly isn't the case at all.
No! I think my concerns should have been listened to.They weren't-that was definitely the case.
 

ddurbridge74

Registered User
May 25, 2014
23
As her carers my siblings and I had decided that my mother lacked capacity. She was recently assessed at her local hospital & they informed us that they were unable to give my mother any diagnosis and that they would not support us in any attempt to gain lasting power of attorney over her.

She refuses steadfastly to consider a home or to have any help at home.

Based on the above information given by the hospital can we assume we were wrong to assume she lacked capacity?

Any other thoughts?
ask your gp to do a mental capacity check. not nice to do, means you can act in your mums best interests. not easy to get poa when they know. also nhs don't want to pay. they have to whenre assessed . hope this helps
 

MLM

Registered User
Jun 17, 2014
130
Manchester
Sorry I typed that wrong! I meant exactly what you meant!

Assessing capacity needs to be done with direct contact with the person and in relation to specific questions. You can have capacity and be diagnosed with dementia. Capacity doesn't have to even be questioned in any respect to be diagnosed.

I'm sorry that you don't understand what I mean! It is hard to explain over the internet. Capacity shouldn't delay a diagnosis though. It just isn't decided in a blanket "he has/has not got capacity" way like some people here seem to think and writing it in text seems to be making me sound like I don't care when I very much DO care. Viewing capacity the way I do balancing risks with benefits just like any decision we ever make in our lives is decided. It is the least restrictive/invasive way of helping someone decide their care that you can take! I would never assume someone couldn't make a decision for themselves without even speaking to them!
 

MLM

Registered User
Jun 17, 2014
130
Manchester
I'm going to leave this now. I was trying to help explain capacity to be helpful but clearly I'm not helping and I have a young baby and a new diagnosis in my own family to contend with without arguing about capacity on here!
 

dilne

Registered User
Mar 1, 2014
181
Newcastle
MLM
May I suggest you take a little time to read some of the long running threads on here. You as myself are early on this journey and we have much to learn. Iinitially I felt nosey and intrusive then tearful and incredibly angry for the way people were being treated by the caring services. Walk a mile in someone elses shoes. Open your ears and listen. Open your eyes and see. By all means be professional but don't lose your common sense or your compassion.
 

Norfolkgirl

Account Closed
Jul 18, 2012
514
MLM
May I suggest you take a little time to read some of the long running threads on here. You as myself are early on this journey and we have much to learn. Iinitially I felt nosey and intrusive then tearful and incredibly angry for the way people were being treated by the caring services. Walk a mile in someone elses shoes. Open your ears and listen. Open your eyes and see. By all means be professional but don't lose your common sense or your compassion.
I haven't bothered to properly read all the posts since my last one on this matter but I
got the gist of it. When someone has dementia this can skew their common sense and perception of the world as it really is, including not realising the REAL consequences in turn affecting capacity.

You are exactly right "dilne" and why then do Social Services rely and consult the families if the patients (in hospital after a fall etc.) have capacity? Why do Social Services rely on the families of patients at all if the patient decides what they want and do not want and that's final? SS seem to want it both ways and are a false economy and waste of space and taxpayers money.
 
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MLM

Registered User
Jun 17, 2014
130
Manchester
I'm angry about how my father in laws social worker has left them and we are only at the beginning of the journey! No signposting to support networks particularly grates on me. Basically being left to it. That doesn't mean every social worker is like that though and I work on a team of very dedicated workers so I do take it personally that people seem to think social workers generally don't care or don't have anything to offer. I have had some wonderful feedback from some of my clients about the support I was able to offer just by listening for the most part and being happy to pop in and see them to discuss face to face any problems or just to offload, not just with dementia but with other health issues and end of life care. Unfortunately some things don't have easy solutions, or even solutions at all. The expectations people have of social workers is unrealistic sometimes but we try our best. It is very stressful having multiple cases with complex needs and it isn't the sort of job you can easily leave at work when you go home. Now I can't do that at all anyway because my work is part of my home life and my home life is part of my work.
 
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LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
I'm angry about how my father in laws social worker has left them and we are only at the beginning of the journey! No signposting to support networks particularly grates on me. Basically being left to it. That doesn't mean every social worker is like that though and I work on a team of very dedicated workers so I do take it personally that people seem to think social workers generally don't care or don't have anything to offer. I have had some wonderful feedback from some of my clients about the support I was able to offer just by listening for the most part and being happy to pop in and see them to discuss face to face any problems or just to offload, not just with dementia but with other health issues and end of life care. Unfortunately some things don't have easy solutions, or even solutions at all. The expectations people have of social workers is unrealistic sometimes but we try our best. It is very stressful having multiple cases with complex needs and it isn't the sort of job you can easily leave at work when you go home. Now I can't do that at all anyway because my work is part of my home life and my home life is part of my work.
I'm glad that you have had positive feedback from your clients-that must be very fulfilling for you. Perhaps I had unrealistic expectations of Pete's SW; but he promised so much and we received nothing. For instance I was missing seeing my Grandson who lives 1 3/4 hours drive away. Grandson couldn't come down to visit as Pete was just so scarey and I felt that I was losing contact with the little chap. SW said he would arrange 30 hours of sitting for Pete (per month). Unfortunately the SW didn't tell the agencies who came round to assess Pete how violent/agitated he could be so it never happened. He gave me hope and it was all a waste of time. I could give numerous examples of how I was left to get on with it on my own.

Sorry that your professional life is now mixed with your family life-that must be hard

Lyn T
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
If the OT assessment is taking a long time I suggest you follow it up and pester the SW to chase it up. I've found the problem is that there are very few OTs assigned to an area so they get hugely back logged with assessments.

In my view a good social worker will be happy to send a message to check the time you are likely to wait. On the system we use at work it takes only minutes to send a message through and they should respond within 24-48 hours! I've never had to wait longer and if I did have to wait I would be on the phone. I hate keeping people waiting because I know how stressful it is to be left waiting when you think someone's house is unsafe.
We don't have a social worker as such, in mum's area the OT referrals are handled via the Community MH team, so mum has a designated MH nurse. I have been chasing them regularly but to no avail so far. I do know that it's very probable that there are people in much more desperate situations and that resources are stretched but I can see mum deteriorating week by week. All her consultant says is that 'there is a bit of a waiting list'. Too right!

I agree that you need to see how each person is in their own home, the problem with trial and error is that some of the telecare solutions are expensive and complicated to install. Then if they don't turn out to be suitable you have the cost and effort of getting rid of them. Mum hates waste and has always been very careful with money so I want to use her funds as efficiently as possible. I know the falls detector system is not perfect, but since she's paid to have installed and it's the only way she could attract attention if she wasn't near the phone I'm sticking with it for now.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
I don't like the idea of waiting for the train to crash either. It is very difficult to get the balance right between leaving someone to it and knowing when to intervene. Some people abuse the system though and try to claim their relative lacks capacity for their own benefit too which doesn't help matters!

Funnily enough the most difficult thing to intervene with I've found though is when a carer puts themselves at risk of burnout through their sense of duty towards their lover one. It is very difficult to persuade some people to accept help before "the train crashes" because of their sense of responsibility in that respect.
Absolutely appreciate that relatives may have ulterior motives and this must be guarded against. I personally hope that mum does continue to be assessed as having capacity long as possible.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
I'm angry about how my father in laws social worker has left them and we are only at the beginning of the journey! No signposting to support networks particularly grates on me. Basically being left to it. That doesn't mean every social worker is like that though and I work on a team of very dedicated workers so I do take it personally that people seem to think social workers generally don't care or don't have anything to offer. I have had some wonderful feedback from some of my clients about the support I was able to offer just by listening for the most part and being happy to pop in and see them to discuss face to face any problems or just to offload, not just with dementia but with other health issues and end of life care. Unfortunately some things don't have easy solutions, or even solutions at all. The expectations people have of social workers is unrealistic sometimes but we try our best. It is very stressful having multiple cases with complex needs and it isn't the sort of job you can easily leave at work when you go home. Now I can't do that at all anyway because my work is part of my home life and my home life is part of my work.
As in every profession, there are some real stars out there and others who aren't so good. There are many posts on this forum testifying to the amazing help they've had from SW and other professionals. I have some close friends in the SW profession, unfortunately they are all involved in children's services or I could pick their brains more, I know how hard they work and how stressful all these decisions are. I'm very grateful for the time you have taken to contribute to this discussion which has certainly helped me to understand the issue better.

Tale care.
Pickles
 

vernumamy

Registered User
Jan 25, 2014
71
:)
Assessing capacity and diagnosing dementia are not the same thing. Medical professionals time and time again treat these things interchangeably but they are NOT the same thing. Wanting a diagnosis is understandable. You can have a diagnosis of dementia and not have your capacity affected at all though, which is the case for my father in law as they pushed for an answer by paying for a privet consultancy who then was able to refer them for testing sooner. Although the tests you have talked about are useful for determining whether they need to investigate further, they actually shouldn't be used alone to determine capacity as capacity should be tested in relation to a subject matter in particular, for example if you needed/wanted to sell your house in your joint names to fund private care, you would need to determine if your partner understood the house would be sold aka no longer yours and no longer where you would both be living, the money would be used to fund the care etc. and not understanding an element of that, even if understanding some of it, or understanding it but only for an hour and then forgetting, would make you start questioning capacity. That doesn't mean that person doesn't have capacity in other respects of their life so you have to constantly be assessing capacity, even if someone has already been said to lack capacity in one respect.

An example would be not having capacity to physically managing your money and bank accounts but still knowing what to spend your money on and what you don't want your money being spent on. Therefore you couldn't make a statement like "he doesn't have capacity to manage his finances" because that isn't completely true and treating someone like that would be overstepping the mark. That wouldn't be fair.

It is all case by case. You have to judge each case in its own right. Your post has made me understand why there is frustration about determining capacity now though by thinking of it as being part of diagnosis.





In one of your previous post's you said,


Quote;

" For those of you saying that she only needs to understand for a minute or a very short period of time, that is not true and very flaky foundations for any claim that a person had capacity at the time of signing such a document. A person with capacity should be able to make their own decisions about the matter in question, even if that decision seems unwise ".

I presume that was in response to my previous post.


You then go on to say in your above post that it is


" all case by case ",


and that


" You can have a diagnosis of dementia and not have your capacity affected at all though ",


which is perfectly true.


It also means for the purpose of POA that the person with dementia " may " be perfectly capable of making a power of attorney decision because they have capacity, but 5 minutes, 1 hour, 1 week later they don't remember doing the POA because they have forgotten, and as you say it is all a case by case thing, and if the witness is happy to confirm that the person with dementia understood " at that time " what they were doing, then for the most I do not see any problems occurring.



Quote;

" A person with capacity should be able to make their own decisions about the matter in question, even if that decision seems unwise ".


My mother was diagnosed with Alzheimer's about 12 year's ago. Every week for the next 10 years I asked her to sell her house, I told her that I would sell my house, and that we would either buy two houses next door to each other, or one bigger property with a granny flat or annex, in order for my wife and myself to look after her, and my father in their future year's.

My father would have done it the next day, but for 10 years my mother said, " but I like it here, I like the neighbours, I like the view.

It didn't happen because I respected her " mental capacity ", and as the years rolled by I continued to respect her " mental capacity " even though she couldn't remember what she had for breakfast.

Just because she had Alzheimers dementia, it did not mean she didn't know what she liked and what she didn't like, she still knew what she wanted and what she didn't want.

There is not a time limit after making a POA for people remembering, it is if they know what they are doing at that time.

That is a decision the witnesses should make themselves happy with, and I think conforms to your " case by case ".:)
 
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