MCI with anxiety incl shouting, stamping and aggression?

[StretchedOver8]

Long post, sorry. Complicated situation below!

Anyone out there with any experience of Mild Cognitive Impairment (diagnosis for my FIL aged 85 after two years of anxiety and depression) plus increasing “acting out” with frequent shouting, stamping and violence/aggression??

He was taken into psychiatric hospital earlier this year as he was spiralling - we had all three emergency services involved at various points, including a police arrest (they were great but it was a farce as they had no way to take care of someone of his age or with his behaviours). As a direct result of these same behaviours, we have already had to remove his wife (84) from their home for her safety, as increasing levels of domestic violence were locking into his behaviours. She is now very happily settled very near us. He is still in hospital 3 hours away near their long-term home.

He has just had an MRI that showed some frontal lobe deterioration but he did ok in cognitive tests so for now has a MCI diagnosis but no formal dementia. This feels really inconclusive and today his care nurse said “it’s really nothing” yet clearly his situation and symptoms are definitely not nothing!!

We see lots of signs of worsening over time - poor short term memory, repetition of old stories to divert onto safe turf, unable to self-start (so crucially no ability to calm down without help when he gets anxious and worked up). It is very hard. He has no real friends or support network near his current home, nor any other family nearby to him. The bad habits of shouting and stamping etc have not improved at all while in hospital. His medical team sees a risk that they will worsen when he is discharged. I feel that we’re trapped in a non-conclusive Groundhog Day loop.

We now need to find and decide upon a suitable care option to help him once he is out of hospital. This is fairly urgent. We want to move him much closer to us so we can help him properly and so he ends up nearer to his wife. He will be self-funding and is now getting very anxious about spending any money (he has lived a very frugal and largely uneventful retirement). He would like nothing more than being allowed to “go home” and get back to “normal” (by this, he means that he’d like to be 60 again…) but everyone involved with his medical care agrees that this would be a terrible idea, likely to land him back in hospital again as he’d be so far from family and would not have the right support.

It seems that options for part-time care, live-in care and assisted living homes are all really quite similar in (eye-watering) cost overall. We work full time and have three teenagers so while I already do all my in-laws’ financial and legal admin - we have POA in place - we cannot have either of them live with us and nor can we constantly drop everything to sort out their many, repeated issues of the day.

I am struggling to find any advice on this particular combination of symptoms or good advice on details of care options that could best help him. Has anyone taken steps on a similar journey? Any learning? Advice? Ideas?

Thanks in advance.

Are the hospital not advising you on what suitable accommodation would be after discharge?

If he has been in hospital has he been sectioned as he would then be eligible for care funding?

From what you describe it sounds unlikely a single live in carer would cope with his behaviour. Assisted living varies a lot in how much support they offer so you would need to be very careful.

If he hasn't changed much is it appropriate to consider him living with her elderly frightened wife again?

The type of need you are describing sounds more like someone with a DOLS on a dementia unit. I am guessing if not sectioned he has a DOLS now as the hospital would actively stop him if he tried to leave.

Does he have mental capacity to make his own decisions? Everything rests on that really. He should have a formal assessment to determine if he understands the risks associated with going home.
If he has capacity then unfortunately he can choose where to live and even how much care he will pay for.
If he doesn't then you can use your LPA to act in his best interests, this includes using his money to pay for his care. Be aware that you really do have to act in his best interest, if the social work team feel that you aren't then they can step in and overrule LPA. I've seen this happen many times as the relatives choose the cheapest options.
Because of his behavioural issues there may be a chance of CHC funding. Ask if he can have an assessment for that.

Thank you @AnnaMagnani. Technically he is not sectioned but he agreed to go into hospital voluntarily when the community mental health team found him a bed. The hospital is a specialist facility and the wards are locked, though, so he cannot come and go. I am pushing for a detailed care needs assessment and your message is so helpful in reminding me to keep going with this.

His wife (MIL) has said very clearly that she cannot cope with looking after him as she has her own health needs and she doesn't trust him or his behaviours. We do think that they might benefit from living closer together so they can see each other, with us.

Thanks again.

Thank you @StScholastica really appreciate you taking the time to help. Technically, the current situation is that he DOES have capacity in a medical sense so we are trying to help him to make a sensible decision. He is clearly very scared about making change, equally it is the lack of change, frustration and anxiety that has built over the last 20 years of retirement that has led him to this point in terms of his behaviours.

Your mention of CHC is brilliant. No-one has mentioned this at all despite many meetings with the hospital team. Without a formal dementia diagnosis, the bad behaviours are limiting his care options massively. I will do some more digging online and try to get more advice on this. Thank you so much 🙂

If his current ward is locked then they should have completed a DOLS as clearly they are stopping him leaving by using a locked door.

I think you should get them to be clear what kind of safeguard he needs off the ward as the locked door strongly implies they think he lacks capacity to keep himself safe without supervision.

Just to add OP, have the hospital been clear with you how they came to the conclusion that this is MCI?

MCI is usually a stepping stone to a diagnosis of Alzheimers. However the signs and symptoms your FIL is showing are more to do with behaviour, apathy and with frontal signs on his MRI.

This suggests that fronto-temporal dementia should at least be considered as a diagnosis. It also has a very different memory loss profile to Alzheimers which may account for his results on cognitive tests.

Agree 100% with asking if they've ruled out frontotemporal dementia and how they have done that.

Also ask to be at a best interests decision about discharge/plans if one is being made. It might prod them to do a formal capacity assessment if they haven't recorded one (I should think they have, especially if he is under DOLS).

Thanks all. Your replies are making me think that we should push the hospital team much harder. They are good and I am sure that they have my FIL's best interests at heart but we do get the impression that because we are keen to move him out of their area (nearer to us), they also know that he won't be their responsibility for much longer. There was talk about FTD but I think he did ok in the cognitive tests so didn't 'fail' on enough criteria. I think I will dig further and ask for more detail. 🙌all once again - would welcome any further thoughts as this thread is already a new lifeline as we try to navigate next steps!

Who is pushing for discharge?

I am in a similar medical position but about 4 months ahead of where you are in the process.

First, I can't see how they have ruled out frontal-lobe dementia. Or Atypical Alzheimers. Both impact different parts of brain and those more associated with behaviour than cognition. This would account for the differences in behaviour while seemingly still retaining executive functions and cognition.

To get these diagnoses scans would need to be assessed by a consultant psychiatrist. Has this happened yet? It can take a while. Has he been seen by a Geriatrician? There may be something entirely different going on, such as delirium. I am surprised that they have him in an inpatient setting and are not considering these options more

Given his behaviour, the fact there is a DoLs in place and the fact you have no diagnosis you are currently not in a position to be able to discharge him safely - even with PoA. And until he has a diagnosis and a treatment plan you should not be agreeing to discharge even if you want it or if you are being pushed into it.

The sad fact is, he may have to stay where he is for now until the medical team have finished testing and worked out the best combination of meds for him. After that, and only at that point, should they begin to discuss discharge seriously. At which point there will be a social worker assigned to do a full care act assessment to look at potential long term care options, regardless of self funding status. The assessment will determine what type of setting will suit him best. Not his ability to pay for it (that is a separate assessment). It is around about this point in time the discussion about whether this might mean his care needs are sufficiently high enough that it is classed as a healthcare issue and meets the CHC threshold. By this point you may find you have multiple mental capacity assessments and at least two versions of a care assessment (one social care assessment one CHC full assessment).

It is only at this point, where you will be able to make a decision on the type of care setting and location that is most appropriate. This should be done in collaboration with the social worker and the MH team at this stage. Both in order to safeguard the adult, but also because these are big messy decisions when dealing with behaviour changes and it is important you get support. Alsp, kindly, most care homes or assisted living settings can't cope with aggressive residents or residents where the aggression can only be managed via medication so your options may be extremely limited. In the area I live in there is only one high dependency nursing home and the next one is 80 miles away. Live in care is also not usually an option as most live in carers won't deal with aggressive behaviour either.

I hope this helps. Feel free to ask other questions. If you Google discharge pathways in your area you may be lucky that your health commissioner has published theirs so it worth a look.

Finally a couple of things to watch out for mental capacity is decision dependent so someone may be capable of managing their own finances, but unable to assess physical risk/safety. Or understand the implications of different care settings. Don't let them fob you off on a 'one size fits all' capacity assessment. Keep asking and chasing. And if it is dementia, bear in mind moving him could create further deterioration. I would not be in a rush to move him until you mire answers. It sounds like he is at least safe and cared for right now.

Thanks so much, @Lastknownaddress - again, so helpful to feel less alone. I spoke with my sister last night (a GP) and she has reassured me that my feeling of unease about this whole process is not misplaced.

The desire to discharge my FIL is coming from the hospital - and a little from him as he doesn't enjoy being there. We are not in a rush to move him unless/until we have found the right care setting.

BUT this is where I hit the major block. I am now starting to structure a series of points in my head, based on @all of your super-helpful suggestions and experience above, to query:

1. When will we see the detailed care needs assessment from the social services team? (....this has been promised but not yet done / shared). I now realise that we are trying to pre-empt what it will say when we are starting to look into care options - and having spoken to a few places now, this is a problem.
2. If the medical teams are in agreement (which they are) that his behaviours remain "unresolved" despite monitored medication and they feel that he "would likely spiral down again if not in the right care setting" then surely the working diagnosis of MCI is in doubt? The "C" cognition is not the primary issue that requires resolution.
3. On diagnosis, how exactly have they ruled out behavioural FTD? I have done some more research and according to the characteristics I've now read about from credible sources, he appears to be a good fit on observed symptoms over the last 18m. Deterioration in behaviours OR cognition? Yes (definitely on behaviours over the past 18m - clear slide downhill documented by the community care team and us, including some CCTV clips). MRI showing atophy of frontal lobe - again yes. Disinhibited behaviours, impulsive actions, loss of empathy, perseverative behaviours (this is the shouting and stamping - can go on for hours and he has no ability to self-manage), deficits in exec function - all a yes.
4. I think the doorway to CHC assessment requests then follows soon afterwards as a next step, depending on where we land.

As before, any thoughts or suggestions very welcome. Thanks in advance.

@StretchedOver8 are you based in England? If so, are they proposing a discharge 2 assess pathway? Or returning him straight home? You should push for the former. This will give you up to 6 weeks (may be a bit longer) for an assessment in an NHS funded setting. If they are, then they will want to give him a couple of weeks to settle before doing the care act assessment in case some of this is down to hospital delirium. This is a good thing and you should push for it. It was in this setting the CHC assessment took place for my relative and there was more support from the community MH team at that point.

I would be very reluctant to allow him to come home straight away from what you have described. Given there have been emergency services involved and you have had to move his wife away, then it is not unreasonable to ask for him to be in a more structured setting. And if they say no, say you will need to raise a safeguarding alert because you don't believe he will be well cared for at home (neglect is a safeguarding issue).

I suspect Wales and Scotland have similar pathways but may call them something different.