Change in behaviour and upcoming neurology

[FiniteSagacity]

Any advice about what to focus on with neurologist about recent changes in behaviour?

DF will be in the room as we will take him to the appointment from the nursing home. We have both LPoAs and last time I stayed in the room after DF left but had limited time so want to focus on the most important points.

I think they are:

Recent issues with aggression with carers in NH mean the medication the neurologist recommended has been unhelpful and was stopped.

DF literally forgets we have arrived during the journey and thinks he has got back in the car to leave (this has happened a few times). We cannot leave him unsupervised/attended outside of NH.

DF is struggling with sequencing in daily tasks like dressing.

I do plan to speak to the community mental health team but I find information isn’t always passed on which should be considered and the neurologist will prescribe another change in medication.

Is a follow up nuero appointment or first diagnostic appt?
And is it general neuro or specialist dem?
Often they will follow a template so they should ask you questions about what you are worried about. Although not always
What you have written above sounds good. I would have some notes so you can really simple say this is what we are most concerned about, and this is what we are hoping you can help with or advise us ...
Questions like.. can they refer you directly to community teams or other local support or OT or other therapies helpful too.
The forgetting and wanting to go straight back to the car sounds difficult.

Thank you for posting @Sailawaygirl - it’s a follow up, we only got the LBD diagnosis at the last appt, which was with the same specialist neurologist (although there have been lots of inconclusive assessments over the last 2 years).

My main worry is that quality of life needs to be the priority and rehabilitation is very unlikely. DF needs 24 hour care and supervision because he has a lack of insight into his needs, and nursing care on hand for his physical health.

Withdrawing anti-psychotics was trialled with a view to introducing dopamine medication but this didn’t go well. Anti-psychotics might be slowing him down but are probably necessary to manage aggression and I think DF appeared less far along than he is - reading about stages in LBD makes me think we’re well into stage 5 and approaching stage 6.

Great you have a diagnosis although sorry DF and you are in this situation. I agree LBD is hard because of the mix of physical and mental health.
It's OK to say you want to talk frankly about quality of life with neurology, you might be able to get referrals to hospice or other support for health planning and avoiding hospital admission or DNAR is not discussed already.
Not all health care professionals use a stage system ( and they are all different) so don't be confused if neuro or neuro nurse doesn't comment on that
Good luck with appointment

In case it's helpful I work along side this charity and many people have said they are very helpful community
https://www.raredementiasupport.org/lewy-body-dementia/

Thank you @Sailawaygirl - lots of things to help here, very much appreciated.