Why are they not diagnosing dementia

It gets called Parkinsons dementia rather than Lewy Body if you already have a diagnosis of Parkinsons.

Her medical team may be trying to exclude this being caused by her Parkinsons medication before diagnosing dementia- you say things have improved with meds changes.

Or MIL and FIL are minimising how bad things are when they are seen.

Or just the medical team aren't getting it.

I'd keep pushing for repeat reviews as there are treatments available for this.

The hallucinations sound like Lewy Body Dementia a very specific form of dementia that is very different to Alzheimer’s. It is often a co-morbid condition with Parkinson’s, but not always.

My dad has LBD but not Parkinson’s, he also believed his hallucinations were real therefore medical staff called them delusions rather than hallucinations. Some of them were absolutely terrifying for him.
My dad Is now on medication which has reduced the hallucinations/delusions immensely. He’s on Revistagne (Not sure if that’s spelled correctly).

Your mum will need to be seen by a dementia specialist nurse for assessment (if this hasn’t already been done) who can then refer to a psychiatrist who can diagnose LBD and prescribe medication. Your mum’s GP can refer her to the dementia service.

Speed is of the essence, the quicker she gets diagnosed and medicated the better it is for her because living with these hallucinations/delusions is absolutely terrifying for them.

I don't think the holiday is a good idea, would mil be travelling, if so it wouldn't be safe for her and could put the flight at risk so would not be allowed to fly. Has the dr ruled out acute delirium dehydration, constipation and infection. She will believe the hallucinations but its not her fault, is she safe at home or is she needing residential care now.

Yes the holiday sounds like something that should be postponed, or you should go without them. Someone who is hallucinating every day is not likely to do well on long journeys to an unfamiliar place. Would it be easier to talk about the symptoms like hallucinations rather than dementia? The symptoms definitely make the travel a poor idea imo.

I think you are sensible to be worried about going on holiday with MIL. If she is like this in her everyday environment it's going to be very difficult when you are away.

Can her GP say she's not well enough and the travel insurance can be claimed on?
I hope she has travel insurance.

Oh dear. I agree with tobyj, the holiday could be a very bad idea - especially abroad where abandoning it part way will be tricky. Delerium can easily be triggered by unfamiliar surroundings or lack of familiar routines. Is cancelling possible?

My relative has LBD and the hallucinations sound similar (people in the house, animals in the room etc). Luckily not the screaming and shouting, but he did go through a phase of paranoia, and now often seems to exist mentally in an almost parallel reality. He also has some Parkinsons symptoms, but the dementia is definitely the key feature.

Real sympathy over the holiday - tbh I'd be quite concerned about how your MIL will cope, particularly in an unfamiliar environment. A change of environment has always made things worse for my FIL. Two weeks is a bloody long time. Is there any possibility of cancelling? Does your MIL understand that she's going and want to go? Does she have a Parkinsons nurse, and have they given any view on your MIL's ability to cope with a holiday?

apparently its not dementia as told to us by both MIL and FIL

I think it may help to explore this a bit more with them. A lot of people use dementia interchangeably with Alzheimers. But 'dementia' isn't really a disease - and certainly not a single disease - it's more of a cluster of symptoms that can have many different causes.

So it's very possible that she has dementia-type symptoms but doesn't have Alzheimers. Or that she doesn't have a specific dementia separate from the Parkinsons. Parkinsonian dementia can lead to just the symptoms you describe without there being a separate illness going on. But it's also possible for Parkinsons drugs to cause similar delusions and personality changes, so it would be worth asking for a specialist drug review to rule that out.

But whatever that cause (unless it's a drugs clash) the specific diagnosis is likely to be less useful than finding out if they can give you any help with management strategies.

I can't offer much help but just wanted to say that I understand how difficult this is for you. My Mum didn't have Parkinson's but did have acute hallucinations much like your mother, which became near constant as her dementia progressed. It was so so difficult to cope with, so I really do feel for you. It was made more difficult in the early days because when social workers assessed my mum, they always wanted to see her without me there, and because my Mum still sounded very lucid and plausible, they believed what she said. They had no idea that the sister she said she had been shopping with the previous week had been dead for 10 years, or that her brother hadn't really been knocked down and killed by a hit and run driver, which she had witnessed a few weeks ago, and had actually died from cancer 20 years earlier - or that all of her family apart from me, my husband and daughter lived at the other end of the country. The social workers didn't seem to understand that there might have been a slight issue when my mum, who was 93 at the time, talked to them about her mum coming round to see her the previous day! It wasn't until she started talking to imaginary children when social workers and doctors were present thst they started to believe how difficult things were getting.

I really do hope you get the help you need and recognition of your mum's condition. It's so soul destroying watching someone you love go through such a huge traumatic change in their lives.

Parkinson's with lewey body is a subtype that leads to hallucinations and dementia. It is not the same as Alzheimer's but there is treatment and the doctors should be able to name it and find ways to help you deal with it.

Hallucinating is a part of Parkinson's. My dad had them though luckily they were surreal rather than these sad and alarming ones. My condolences.