Refusing dementia screening

HeparGirl24

My father has had several episodes over the last year where infections have caused his memory issues to temporarily worsen significantly until the antibiotic course kicks in and he has more clarity again. Following the most recent episode, he took the antibiotics but failed to take his any of his other tablets which caused his GP to have to intervene with urgent treatment to get him back on track. Consequently the GP has referred him for dementia screening and for an assessment by adult social care services.

My question is can he refuse the referrals? He adamantly does not want either. He feels the social care assessment is an invasion of privacy with all their questions (he saw what they asked my late mum at the time she had one) and he says even if he has dementia, he does not want to know.

Added to this, his brother is in a care home because of advanced dementia and to my father, it is like a prison and he hates the thought of being in one. He says he would rather take his chances on messing up his meds and die at home rather than end up being told what to eat, drink, when to go to bed etc. My uncle is in the secure section and the doors only open with staff passes so he is essentially locked up.

Other than the meds issue when he has infections, my fathrr manages well. The district nurses calls 3 times a week to change dressings and he has cleaner in a couple of times a week. He makes his own meals and his weight is stable (if anything increasing slightly) so he is obviously eating well.

In the meantime, the GP surgery have told me that if he fails to co-operate with the referrals or anythinge else they suggest, they will turn to me under their duty of care to force the issue as I have a health LPA. However as I understood it, I cannot use the Health LPA unless a Consultant says he no longer has capacity. The waiting list is currently 8+ months to see the dementia specialist where he is.

I do not live anywhere near him, work full time so it is difficult for me to know the complete picture but to me, he knows what he wants and more to the point what he doesn’t want so can he refuse the referrals and can I be made to force the issue?

sk2402005

i have seen this a couple of times with grand parents and parents.

your father will perservere as long as he possibly can, but ultimatly social services will force your father into a home, usually after a prolonged stay in hospital for whatever reason, they will just decide he cant go home, and will be stuck in hospital until they can find a place for him to go.

the difficulty comes if your father is stubborn and leaves it too late, then it becomes a massive burdon on everyone whos involved - nobody gets what they want.

If you father cooperated, it would be much easier for everyone, and he could actually choose where he wants to go.

I have been to a few nursing homes now, and have found them to be quiet nice, theres usually communal areas to meet up with other residents, as well as the occasional trip, and they get some options for food etc.

Clearly they are locked up for a good reason for the more advanced people, they are very prone to just walk off and get lost, we lost our father in law a few times.....

If your father isnt too bad at the moment, assisted living would be the best option for a while, rather than the full on nursing home.

Theres nothing obvioulsy nice about losing your independantce, demantia is an awfull life robbing disease, its just about making sure your looked after well, in a place where you want to be.

OutdoorQueen

I have seen quite a few people with memory loss  live at home with a care package, however it is not easy but can be done.  It often depends upon the type of memory loss and what other symptoms are presenting as to how easy it is to stay at home.   Some people decline quite quickly, whilst others reach a stable point and there is no decline for some time. 

Does your Dad receive attendance allowance?  If not it would be worth putting an application in, then that would provide some money for equipment or carers.  Depending upon where he lives, there might be an organisation that can provide help without a diagnosis, or for you as a carer.   

 Your dad will be petrified of what may be happening and will be seeing his life changing in a way he doesn’t want. From my own experience, I will talk about the options and let my parents make their own mind up on decisions.  Normally, they take the information on board and a few weeks later ask me to buy / set up / do whatever we were talking about. They then feel like they’ve made the decision and are in control.  They normally manage to make it sound like it was all their idea in the first place. 😀 I just have to be patient and smile quietly to myself.   Everyone is entitled to make unwise decisions, so sometimes I have to accept they will make different decisions to me.  They normally come round to my way of thinking eventually……

A Judge working in the Court of Protection once said it was pointless safeguarding / protecting someone if it made them unhappy.  

Getting the balance right between happiness and living safely can be difficult. 

https://www.moneysavingexpert.com/family/attendance-allowance/

badmemory

Is the doctor only seeing him when he has a bad infection?  If so it could be just the infection.  A  friend had a UTI & was in hospital for 2 weeks & then moved to rehab.  He had no recollection of being in hospital or the way he behaved.  No sign of dementia before or after, just while.

lr1277

My dad had a form of dementia with some Parkinsons. He had regular infections both chest and UTI. My analsis was after each infection both his mental and physical capacity would most likely be worse or the best case scenario, it would be the same as before the infection. I called it a step down disease. Never got better.

My dad's doctor didnt want him in a care home because that causes the patient to decline more quickly. If he can stay at home that can be a good thing, as long as he gets the support he needs.

In my dad's case he was confined to a bed for the last 9 months of his life. But the doctor wanted him either moving around or at least somewhat upright when sitting down as that allowed the fluid to drain in his chest thereby reducing the chance of any infection. To sort this, the carers would take dad for a 10 foot walk along the corridor when he could manage it. Also we had to hire a recliner/riser chair as these were not available from the local authority. If my dad was agreeable, they would try and put him in the chair twice a day for at least 2 hours each time. This didnt stop the infections, but hopefully made the situation better.

HTH

Edited to add: Dad only got to this stage 4 years after diagnosis, which in turn was 4 months after a head injury due to falling down. But dad was showing some signs of loss of capacity/memory before the head injury. I hope my post doesn't worry you too much. I wanted to let you know some of the things my family experienced.

2nd edit: Dad never acknowledged his condition even though he was having infections and hospital visits. I suppose the sad part for me was that a month before he died he asked me and one of his sisters (who is a doctor) whether his condition would get any better. We had to explain no it wouldn't.

bouicca21

TBH by the time OP’s dad needs to be in a nursing home he won’t know that he’s there.  We managed to keep my mum at home for several years by arranging for carers to visit, sorting out regular trips to lunch clubs, meals on wheels, etc.  It sounds like personal experience of a close relative with dementia has left him scared.   If I thought I was on the way to ending up like my mum, I’d be scared too.

T.T.D

I bet at the time your late mum was being assessed your father had great concern for her and encouraged and supported her through the invasive process although mum and him didn’t like it, it was something that needed doing?

He doesn’t get to set a different standard because he doesn’t like the steps to diagnosis.

I would explain this to him it’s hypocritical to make the process much more difficult on you, your family, friends and the GP and the test centres, because he’s experienced the process and doesn’t like it.

Could you tactfully broach that point with him that it’s ok for him to encourage and support mum through but hold you to a different standard and not allow you to encourage and support him. 

I know it’s a fearful upsetting diagnosis, but it’s unfair to allow yourself and your family go through this without full knowledge of what you’re working with and to put that extra mental load on you and your family refusing diagnostics process simply is not fair on anyone or him either.

 I understand it’s an open wound subject for him as it is you, I suppose it’s like putting stinging nettles on a cut every-time you touch it it stings for him, but it’s the same for you too except the stubbornness and hypocrisy is make that sting all the more sharper! 

Good luck 

HeparGirl24

Thanks for the replies.  I fully accept my father will end up in a care setting eventually and he will be self funding when that happens.  He already claims AA which helps to pay for his current home help and he has agreed to have the helpers come in 5 mornings a week to make sure he take his tablets correctly. This still leaves his evening meds and the weekends to manage with phone call reminders from me, but the health centre are still insisting on the assessments.  As he is very stubborn I think a better approach is for me to negotiate little steps to encourage him to take extra help using the people he trusts, but the health centre is set on this full steam ahead approach which will only make him dig his heels in further.

I say the health centre because he hasn't seen a GP in 5 years and I've spoken to 4 different members of the health team in the last week who pass me on to someone else or to tell me to speak to his GP (impossible!!! but even if I could his registered GP has never ever seen him), so I have have no idea who to try and negiotiate with.

His views on life or death haven't changed and he understands the consequences of not taking his meds correctly. He also understands that just because he doesn't want to know he has dementia, that doesn't mean he hasn't got it! As his attorney I believe he has the capacity to make the decision to refuse the assessments, however unwise, and I would not be comfortable using a health LPA to override that.

So back to my original question - can the health centre force him (or me via the LPA)  to have the assessments?

Spendless

Whilst I don't know exactly, I can tell you what I suspect from experiences with my own Grandmothers.

1 got sectioned under the MH Act due to being a 'risk to herself or others' Though she was later allowed home a few years later she ended up in hospital and from there to an assessment centre for a few weeks and it was deemed it wasn't safe for her to return home due to her dementia. She went straight into care  and died 8 years later at almost 99.

Nan  2 is 98 and has gone downhill since Christmas day. She has had 3 falls and refused all help or to see someone. Last week's fall landed her in hospital. When she came out a care package was put in place for her to have carers twice a day. Once home she went up the wall about it and said she would be refusing them (my parents were present to witness this). She was told that the carers would come but if she refused to allow them, she would have to sign something saying she didn't want them. 

I suspect if and when this does happen then the next 'incident' that sees her in hospital, she won't be allowed out and will go into care.

So, just my guess, I could be completely wrong,  but I think your Dad can possibly refuse this testing, how are they going to make him attend?  but that will be logged and as and when he needs to go into hospital, a decision made then about whether he is considered safe enough to return home. 

*Currently my Nan  has accepted the carers but yesterday was only day 1 of them calling. We shall see what the next few weeks brings.

Gavin83

HeparGirl24 said:

So back to my original question - can the health centre force him (or me via the LPA)  to have the assessments?

I don't see any possible way they could force him to have the assessments. Even if you could force him to attend and the professional was willing to carry it out you need to consider the nature of the assessments. My understanding is the bulk of it involves asking the individual a series of questions and he could easily just sit there and refuse to respond. Regardless of what the rules are you can't force someone to talk to you.

They might possibly with enough evidence be able to diagnose him with dementia even without his involvement but I know nowhere near enough about this to really comment on how realistic this is. I expect the burden of proof would be a lot higher than with their cooperation though.

Also you can't use the LPA to make decisions and override him if he's still considered as having capacity. He's considered as capable of making his own choices (no matter how poor) just in the same way you would be. Appreciate this is a bit of a catch-22 situation though.

prettyandfluffy

I have an 82 year old relative who was diagnosed with dementia just before Christmas.  This was a shock and was distressing for them but they are now on medication and the improvement - lack of confusion, no longer unsteady on their feet - is really incredible.  They have also started attending a support group which they are finding very positive.  It might be better for your father to find out more before making a decision.