Elderly, frail parent refusing home help - can we use LPA?

elsien

Fair enough - although I'm not intending to catasrophise more suggesting people do still have rights, including the right to know that they are being assessed and to choose whether to continue or not. The starting point for all the capacity assessments I have attended has been to explain to the person what is being assessed and why, including the worries that other people have had that have led up to that point. 

Danien

elsien said:

Fair enough - although I'm not intending to catasrophise more suggesting people do still have rights, including the right to know that they are being assessed and to choose whether to continue or not. The starting point for all the capacity assessments I have attended has been to explain to the person what is being assessed and why, including the worries that other people have had that have led up to that point. 

Yes, and I totally understand that, and everyone does have rights to make their own decisions - up until they lack capacity - at that point the person needs protecting. And establishing whether this person lacks capacity is where we are here. It's a difficult line to walk, I understand,  nobody wants to take away someone's rights unless they can't safely make decisions themselves.

But an LPA is for exactly this purpose. From what the OP described the relative may not attend the appointment if they know what it is for. In this situation I would always advise that the explanation comes once you have the person at the appointment with the doctor. Older people mostly (not in every case) are willing to go through the assessment once in the room with the doctor explaining how important it is to do the assessment (like an intervention) - the doctor is an authority figure to them and they will sometimes take far more notice of what they say than family. A few will refuse, I don't know enough about an LPA to know whether it can used to force an assessment?

It seems like a catch 22 - you can't get a confused family member assessed unless they agree, but you can't get an LPA without the assessment. So if they disagree you have to wait until something dangerous happens? Or can it not happen even then? Genuine question, I really don't know a lot about LPA's, and the answer may help the OP.

elsien

From the Age uk website. (more information is available from the OPG should anyone want more specific advice. )

How should my attorney make decisions?

Your attorney must understand and follow certain principles, which are set out in the Mental Capacity Act 2005 and its code of practice.

Your attorney should:

• Assume you have mental capacity unless shown otherwise. Your attorney must only make decisions on your behalf if it can be shown you don't have mental capacity.
• Help you make a decision. You must be given as much practical help as possible to make your own decision before anyone decides you’re unable to. For example, if you’re better able to understand things at a particular time of day, you should be helped to make a decision then. Or if you're better able to understand or communicate using pictures or sign language, then this should be supported.
• Avoid making assumptions based on 'unwise decisions'. You shouldn’t be treated as unable to make a decision just because you make a decision that others might consider unwise or eccentric.
• Make the least restrictive decision. Anyone making a decision for you should consider all the options and choose the one that's the least restrictive of your rights and freedoms.
• Act in your best interests. Your attorney must consider a range of factors and reach a balanced conclusion about what decision is the right one for you. For more information about what your 'best interests' are, see the FAQ section at the bottom of the page.

I'm not seeing lying to someone to get them to the GP then hoping  the GP's perceived authority will make them comply as particularly falling into that remit. And having a formal dementia diagnosis does not automatically mean that someone lacks capacity around all decisions. Forgetting you have made a GP appointment is different to not understanding what is happening and what your choices are when you get there. 

Yes it can get horribly messy at times and people can put themselves at risk. There are a lot of grey areas in there. But LPAs need to be careful to think about where that balance lies and not think "I've got LPA, I now make all the decisions." The OP is not doing that, just a general thought for others. 

Danien

elsien said:

From the Age uk website. (more information is available from the OPG should anyone want more specific advice. )

How should my attorney make decisions?

Your attorney must understand and follow certain principles, which are set out in the Mental Capacity Act 2005 and its code of practice.

Your attorney should:

• Assume you have mental capacity unless shown otherwise. Your attorney must only make decisions on your behalf if it can be shown you don't have mental capacity.
• Help you make a decision. You must be given as much practical help as possible to make your own decision before anyone decides you’re unable to. For example, if you’re better able to understand things at a particular time of day, you should be helped to make a decision then. Or if you're better able to understand or communicate using pictures or sign language, then this should be supported.
• Avoid making assumptions based on 'unwise decisions'. You shouldn’t be treated as unable to make a decision just because you make a decision that others might consider unwise or eccentric.
• Make the least restrictive decision. Anyone making a decision for you should consider all the options and choose the one that's the least restrictive of your rights and freedoms.
• Act in your best interests. Your attorney must consider a range of factors and reach a balanced conclusion about what decision is the right one for you. For more information about what your 'best interests' are, see the FAQ section at the bottom of the page.

I'm not seeing lying to someone to get them to the GP then hoping  the GP's perceived authority will make them comply as particularly falling into that remit. And having a formal dementia diagnosis does not automatically mean that someone lacks capacity around all decisions. Forgetting you have made a GP appointment is different to not understanding what is happening and what your choices are when you get there. 

Yes it can get horribly messy at times and people can put themselves at risk. There are a lot of grey areas in there. But LPAs need to be careful to think about where that balance lies and not think "I've got LPA, I now make all the decisions." The OP is not doing that, just a general thought for others. 

I understand this. But the question that seems to be relevant is how do you get someone assessed for mental competency, when you are genuinely worried over their safety, if they refuse to have an assessment? How do you ensure someone's safety in this situation? How do you know whether someone is impaired, or by how much, without an assessment to establish that? I am of the opinion that if lack of capacity of some sort is reasonably suspected by both family and GP (not family on their own)  that an LPA should be able to enable an assessment regardless of the person refusing. Is there no provision for this? As I said I have little knowledge of LPA's.

Once an assessment has been done, then at least you know what the situation is - whether the person is impaired, by how much, or whether they are just incredibly stubborn and you can leave them to it or just try to give advice, whether it's taken or not.

Having worked with dementia patients I have a lot of experience of working to ensure that they have as much decison making on their own lives, even in a nursing home environment, advocating for them when management had other ideas more in line with ease of running the nursing home than rights of clients. So please don't think I want to strip rights away from people. 

But in the end the assessment of capacity is the starting point. It enables advocacy as it gives everyone around the person parameters of their capacity (for instance issues of sundowning, or areas where there is more capacity and areas where the person cannot cope ensuring as much decision making can be retained by the person) and a thorough assessment identifies areas where the person does need that extra protection, and prevents decision making being removed from a person when it is not necessary.

RAS

It is incredibly difficult when you daren't go to the GP and say I think that they lack capacity or they are not coping. Because the GP is required to explain to the potential donor that you have expressed that concern, which wrecks your relationship with the donor, particularly if they are somewhat paranoid (diagnosed) or unwilling/ unable to see their decline. 

I've even seen an attempt by another family at a public gathering to raise the possibility of respite care torpedoed by the person concerned who demanded to be wheeled out to the car and refused to say goodbye to those left at the table. Didn't think they realised quite how feisty and furious their family member would be.

We found Age Concern as they were then very useful. The key words then were "possible self-neglect." 

The sad thing is that those who refuse help are more likely to end up in some sort of accident that forces the issue and makes it harder sort out the practicalities the way they'd prefer.

elsien

There is nothing to stop you from privately raising concerns with the GP so that when the person next visits they can try to touch on  that with them. What they can’t do is tell you what was discussed but at least it lets the GP know that there are worries and they can try to monitor more. 

RAS

elsien said:

There is nothing to stop you from privately raising concerns with the GP so that when the person next visits they can try to touch on  that with them. What they can’t do is tell you what was discussed but at least it lets the GP know that there are worries and they can try to monitor more. 

Ours insisted on warning us that anything we said would have to be repeated to our parent. And in at least one instance they did pass on information given by one of us to the parent.

We had similar issues with the then social worker, who told the parent that neither the professionals in charge of their care or family really believed what the parent said, but they personally understood. Said in front of me. 

Although on another occasion, the GP did tell us how to (not) respond to the parent, to allow them to intervene. They later gave the parent the choice of supervised medication or hospitalisation. And the newer social worker later advised us not to visit after the latest crisis, as the hospital would insist we took the parent home. It took a week or so for the hospital to begin to understand the underlying issues.

Danien

So I'm now very confused how you get the LPA implemented in cases of people who refuse to acknowledge lack of capacity or have a paranoia as part of their lack of capacity. I've only had to work with people like this in a nursing home once their need for care has already been established.

I understand that vulnerable people need protecting from family members with ill intentions,  but what about when you genuinely want to protect the person from themselves? It sounds impossible in the situations I mentioned, leaving the person without help they need until there is a serious incident which could be dangerous to life, health or finances (in the case of scams or not paying bills etc).

MIL has an LPA, and she is pretty fit and totally with it in her 80's, and I think she'll live longer than me. But it worries me that if she got a paranoid form of dementia, we wouldn't be able to care for her properly as we couldn't get her assessed and she was hurt as a result or had health deterioration as not getting the care she needed.

ChasingtheWelshdream

Apologies for the late reply, I haven’t ignored the responses. It has been a hard couple of weeks.

Things have escalated quickly,  she needs carers, not just home help.

We are here again and she has deteriorated sharply, both physically and mentally. Evidence of incontinence (the most distressing part, she is unaware of it. Unable to manage stairs, and therefore wash, confusion, forgetting we are here. She says she wants to die.

Hospital letters state she needs urgent investigation, whereas she insists she has been discharged.

GP has now registered her as housebound and district nursing team will attending twice a week to change dressings (which she keeps pulling off!).

We have never wanted to go against her wishes but we feel this is now a crisis and we need urgent intervention. No, her capacity has not been formally assessed but we will be escalating to the GP and social services ASAP. 

She will have one of us with her for the next few days but we can’t stay the whole week (kids/school), so we need to arrange something urgently. Sod the garden, her health is at risk.

Thank you for all your comments, I have read them all. 

elsien

That sounds awful for all concerned that she has changed so quickly.

Has anyone checked for a urine infection- I presume the district nurses would have that on their radar? There has to be something underlying going on for things to have escalated the way they have. 

I agree that you need to get help as quickly as possible - she/you do need to find out what is going on with her health. Will the GP do a home visit both to check on her health and to confirm her confusion? 

Social services also have a long wait in some areas so you really need to push for a social care assessment by stressing you can’t stay and the situation isn’t safe for her.  

What quite often happens is that people end up back in hospital either for health reasons or as a social admission and then go to a short term place to allow all the assessments to take place.
in some way, it’s easier when the person clearly is confused rather than on that fluctuating borderline she may have been sitting on before because you don’t need a formal diagnosis for capacity assessments, more that the lack of understanding comes from directly from the cognitive issues. Which is obviously being much more clearly evidenced now than before.

Was the LPA set up so that you could use it whether she has capacity or not? If so, does she have money to pay for carers to go in or do you need to wait for the local authority to do their bit? 

If she is as confused as you say, you may still have issues with her declining them access but with the key safe a good agency should be able to deal with that. 

I hope you do manage to get help for her that she needs without too much of a battle.