Which professional can help mediate / advise with care plan?

[BlueRaspberry7]

My DF (70 - Parkinsons with LBD, diagnosed 2017) is in decline with his dementia symptoms worsening. ie. forgetting to take medication, regularly stumbling, regular confusion, breaking things and unable to clear them up properly, and so on, very slow to get showered and dressed, daily tasks difficult, and so on.

He currently lives at home with his wife. She is managing ok for now, but is understandably concerned about the future.

He is in heavy denial about his condition and refuses to entertain the idea of either short stays in respite or at-home help, let alone longer term residential care. He believes he is fine at home on his own for periods of time.

Is there a mediating professional of some sort that could help facilitate this conversation with us as a family?

A medical social worker? Parkinson's nurse? GP?

Sorry if it's a basic or silly question, we're not sure where to turn next for help with this.

I'd either ask the GP surgery what they can do or look at the local council website for adult social services to see if they can do a care assessment.

But I think to progress with either you would need his permission and co-operation, which sounds like it might be difficult.

I wonder if the wife could perhaps get it under the radar a bit by seeing if she could arrange a visit saying that it is to see what assistance they could provide for her ?

So in my experience that it is really difficult if your DF is deemed to have Mental Capacity. GP practice and contacting the adult social care team expressing your concerns and take it from there.

Speak to the gp and see if he has capacity. If he does then he can make his own decisions, even if they are poor ones.

Mental capacity is decision specific, so I'd think about a specific topic. The obvious starter one here is medication, given its importance in PD. What's happening at the moment- is his wife reminding him to take it?

I think I would want to request a needs assessment by Adult Social Care via the local authority. I think his wife us right to be worried and the line between coping and not coping enough is pretty thin.

Thanks everyone.
@PermanentTemporary yes, his wife reminds him to take the medication. If she is not there (due to work, out at shops, walking dogs etc), then he's likely to forget, take the wrong thing, or drop it on the floor.

Would they look at a Memrabell clock or other reminder system? It might be good to get him used to something like that. The alarms can be very disturbing for some people with dementia though.

Our local council has just reinstated medication-only care calls for a pilot period having cancelled them last year, though I have to say I think they would be slow to respond for someone who's married... the brutal reality of being a spouse unfortunately.

As a GP, I have found our local Parkinson’s Disease nurses to be very good at having these conversations and other advanced care planning. They are real experts in this condition and this situation is not uncommon to them so I would potentially be signposting you to them if you were asking me. I can also try and have these conversations but have much less time so the PD nurses do a better job

@Soverytiredtoday thank you for this GP perspective.

I don't think DF under the care of a Parkinson's nurse at the moment, though he has been previously. I will gently suggest they look back into this via their surgery.

We've had a similar situation. The problem with having capacity is if two people living in the same house disagree. Person with dementia has capacity and wants to be at home, but this is only feasible if their partner cares for them (or carers come in). Person without dementia has the right to decide not to do the caring (or might not feel able to cope) , and might object to having carers in the house (it's their house too). In our case, person without dementia was OK with a couple of care visits a week, but not with live-in or more regular care, which was what was eventually needed. It's extremely hard. In the end, the person with dementia was persuaded (a little bit railroaded to be honest) to have stays in respite care and then eventually move into residential care. I think the GP did help to mediate the conversations a bit, but it was mainly within the family. It was very, very hard.

@tobyj sorry to hear you've been through similar.

Yes, the two people living in the same house disagree in our case too - and one of them is turning to me to help lay out what should happen.

It's extremely difficult. I can't help but feel frustrated and angry that they haven't done more advanced planning as a couple. It sounds like this is fairly standard, though, looking at most of the threads here.