So my dad went through this…
in first instance absolutely push to get any signs of any infection ruled out. Delerium does cause hallucinations and delusions. Gp is not doing their job if this has been absolutely ruled out, and it’s not just UTIs, other infection can cause issue
Then rule out any impact of loss of sight, get eye test if not recent. There is a condition called Charles bonnet syndrome. That causes sudden onset hallucinations of people, especially child like people. Rule it out
then you mention he had psychotic illness diagnosis earlier in his life. Your Gp must send him to get assessed by mental health team and rule out that he is experience psychosis and with it hallucinations and delusions. Until that’s done and ruled out (particularly any stress, or lack of sleep or any number of other things can cause a crisis of psychosis even if it’s years since he was last affected) again don’t let go fob you off, it is hard to determine sometimes that someone is suffering from psychosis as they can mask it, though you’re clewrly aware of hallucinations . A GP cannot diagnose psychosis - it needs a psychiatrist . Treatment for psychosis illness is very different form any other potential issues, so needs a proper diagnosis to rule in or out.
if they’ve ruled out both delerium, and psychosis and any other factors like CBD, and have done at least a basic neurological scan to check for tumours or anything more sinister , then dementia is really what ends up being most likely by a matter of elimination. They can’t prove dementia. Specialist scans MAY pick up the deposits in the brain to give a positive diagnosis, but for many it won’t anyway, even if they have dementia. So a diagnosis it will be based on symptoms and balance of probability.
my dad was eventually diagnosed with Lewy Body Dementia. It took 9 months to do that and eliminate all the other things (becuase he also was going blind, and had various UTIs which is common with LBD as well due to progressive incontinence which he was not telling anyone about )
main characteristic in diagnosis of that , vs other dementia, was that there was a lack of memory loss , but he was confused over his current time and place, he had visual hallucinations, delusional (especially paranoia), and crucially he had massive REM sleep disturbance.
sadly this illness is best, imhe, described as grotesque. Outcome is bleak in terms of quality of life. He was on deprevation of liberty fairly quickly, then sectioned under 117, (which was actually was best thing that happened as got him proper diagnosis and proper nursing support vs just care support ). He got increasingly agressive and violent (he was never before), but sadly was well aware he wasn’t at home and wanted to go home, was depressed and miserable in being in a care/nursing home . He lived just 2 years. Frankly it was a blessing it wasn’t longer. 💔. In total he’d lived in his home with worsening, but benign symptoms for ,we think now, around 2 years, before it went downhill fast and he was admitted to hospital.
I would also add some caution about you trying to explain to him his hallucinations aren’t real. I have experienced dad’s visual hallucinations and delusions, but was also with my exh for 20 years with diagnosis of psychotic illness and he heard voices and had paranoid delusions. I find it enormously helpful to know that peopel experiencing hallucinations aren’t “imagining” it. Literally the brains neurons are firing incorrectly, and activating parts of brain responsible for external auditory or visual stimuli. They ARE literally seeing and hearing things - they are being processed in the brain in SAME way as your voice speaking to them, or them seeing you for real. No amount of you trying to convince them will change it. Just confuse and terrify them more.
people who are hallucinating or delusional are usually frightened, and stress makes matters worse. Best way to approach dealing with it is though gentle validation …ask them to explain what they’re seeing, ask them why they think what they are thinking, reassure them, try to find what’s really stressing and worrying them and reassure or help them to eliminate that concern. Getting them to validate what they’re seeing or hearing often helps them understand it isn’t real. I did used to say to dad that his brain was playing tricks on him very occasionally in situations when he was sort of aware it might be, but mostly he’d not have been reassured by that. The other approach is distraction…if it is LBD there’s not much wrong with memory so get them focusing on happier past memories, make them think about something else etc.
I found, in both looking after my exh and my dad, that it was helpful to think about delusions and hallucinations as “conscious dreaming”. When you are dreaming everything you see and hear is real to you in that moment, you don’t actively think you are dreaming. However bizarre it is. REM sleep paralysis is there for a reason to stop us acting out these bizarre and possibly dangerous dreams . If you think of what would happen if you were conscious and dreaming how chaotic and dangerous it would be, and someone telling you it wasn’t real is not exactly going to help that , then you probably getting closer to understand what’s going on in their heads.
my big advice is get LPOA in place urgently if it’s not too late. A matter of priority. And establish who is “nearest relative” officially under mental health act , if needed.And If at any point they feel need to section him, don’t fight it. In fact push for it if needed, It is the best thing to ensure the right services are put in place.
I’m sorry you’re dealing with this. My life has been deeply affected by looking after two men I loved dearly being impacted by delusions and hallucinations and it is the most extraordinary difficult thing to deal with. LBD is awful, as I said, but for us mercifully quick. Make sure you look after you whatever happens, in practice is very little you can do to help, sadly.