Lewy body dementia but no hallucinations?

[cauldroncakes]

After some tests and scans, DFil has been told that he has possible/probable LBD, but there's some doubt because he hasn't had any delusions/hallucinations, which seem to be a classic symptom. His other symptoms all seem to fit though - mild cognitive problems (more with planning/understanding than with memory), REM sleep disorder going back years, sleepiness at times during the day, much quieter and more withdrawn generally (with a tendency to zone in and out of conversations), anxious and a bit depressed, a few motor problems (reduced balance, alteration in gait) but not classic Parkinsons symptoms. Just wondered if anyone else had experienced LBD without any delusional episodes, or whether this diagnosis doesn't fit? Trying to get a grasp of what to expect for the future.

I don't have any experience of LBD but hopefully this will bump for you

Some rare neurological disorders present in this way e.g. www.nm.org/conditions-and-care-areas/neurosciences/other-dementia-disorders/corticobasal-degeneration-and-progressive-supranuclear-palsy

Has he had a ct scan?
If you go on Parkinson's UK website they have info on Lewy Body Dementia as well
They are both caused by a similar protein if memory serves me right - so they can have similar signs/symptoms

Thanks all. He's had various scans, including a DAT scan, which did show reduced levels of the dopamine transporter protein linked to both LBD and Parkinsons, so it's looking very likely that his condition is something from that 'family' of diseases. Interesting to see the other conditions on that link @rodentgirl, I hadn't heard of those before. Seems like there's so much overlap between a lot of these neurological conditions.

If you haven't already, I would really recommend looking into health and welfare and financial Power of Attorney while he has capacity to state his wishes. Age UK can signpost you to solicitors and other advice

Thanks @rodentgirl that is definitely a conversation we need to have soon. FIL always worked in finance, so I think it's going to be really hard for him to experience difficulties in grasping financial stuff in particular.

Yeah my Mum too. I think it helped to frame it as making sure the right people can help make decisions if it becomes hard for him in future - as if it isn't explicitly stated, it defaults to 'best interests' as assessed by healthcare professionals or council types. The POA only kicks in when people no longer have capacity so that's reassuring as well - but does mean you can help straight away regards bank accounts etc, which will be important to enable care planning for his future needs. This is a good resource page www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/mental-capacity-act/