Please or to access all these features

Dementia and Alzheimer's

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Dementia with Lewy Body

13 replies

Bornafreak · 19/09/2025 11:23

Hi, does anyone have any experience in caring for someone with this type of dementia please. My mum has just been diagnosed with this and we are not sure what is ahead as it is still early days. But we are trying to be prepared as much as we can and get support in place but advice would be much appreciated. If it helps I am in Scotland.

OP posts:
Bornafreak · 19/09/2025 17:14

@ShrubRose Thank you very much. I hadn’t heard of admiral nurses before. But I will get in touch with them for advice.

OP posts:
NoBinturongsHereMate · 19/09/2025 22:22

Despite the name, the Alzheimer's Society covers all types of dementia so it's worth contacting them too.

My dad had Parkinson's dementia, which is under the same diagnostic umbrella. There's a lot of common ground in symptoms, but there were also of course the specific Parkinson's symptoms so not a complete overlap with the other Lewy body type.

He had virtually no memory loss of the type people think of as a feature of dementia. He always knew where and when he was, who people were, their names etc. He lost some procedural and executive memory - things like making a phone call became increasingly difficult.

His most obvious symptom was delirium (particularly the idea that all the hospital or care home staff had been replaced by imposters). This could happen at any time, but was particularly common during sundowning. It generally didn't last more than a few hours and sometimes much less. Afterwards he could remember the experience but also mostly recognise it wasn't real. On the whole the more outlandish the delusion, the more likely he was to recognise it as a cognitive glitch; more plausible ones he tended to hang onto as having been real.

And to some extent he lost a sense of time and practicality - if he wanted something he wanted it right that moment, and had difficulty comprehending that I couldn't instantly achieve it when I was 3-hour journey away and at the mercy of airline schedules. This was mainly linked to delirium-related wants, but not exclusively - and may have been a feature of the Parkinson's rather than the dementia side, because that's known to mess with people's sense of time.

girlwhowearsglasses · 19/09/2025 22:34

Very sorry to hear this.

its very different to other dementias in that they can identify you until quite far on, but hallucinations and false memories can be really intrusive- so whereas with most dementia you can try to go along with what they say, with Lewy Bodies you might need to reassure them that what they think happened didn’t. Because the really disturbing thing is that they may experience things related to bad episodes in their lives. My DF was brought up in a children’s home and when he had to go to a nursing home he then drew associations with early life and relived some things.

I'm really sorry OP- I very much hope your relative doesn’t have this experience.

earlier on some visual hallucinations might be pleasant, and the patient will be aware they aren’t real- so they may not be scary, my DF was a big wildlife fan and happy to see tigers…

so sorry

loobylou10 · 19/09/2025 22:40

Hi OP. My mum had this. Started with memory loss then hallucinations especially at night - sun downing they call it. She became quite unsteady on her feet (it’s linked with Parkinson’s I think) and had episodes of psychosis. It was quite a rapid decline, I’m so sorry you’re having to deal with this, it’s an awful disease. Feel free to PM me if you want to x

EwwSprouts · 19/09/2025 22:48

Sorry that your mum is facing this. Friend's mum was diagnosed in her late fifties and the decline was fast. She had the delusions but unlike PP the advice was go along with them or try to distract, not to correct. She also became a risk to herself because she struggled to see risks. Friend's dad was an amazing carer but became quite isolated. He managed to keep her at home but there was lack of sleep etc. Night sitters would be something worth investigating when the time comes. Make the most of the time you have.

girlfromthesouthcountry · 19/09/2025 22:54

I'm so sorry. My FIL had this and it was a rapid decline. As others have said, it's not so much memory loss as a loss of executive function, leasing to increasing confusion. It often comes with sleep problems (REM sleep disturbance), so the nights can be hard. It's very up and down - not just day to day but hour to hour - so someone can be lucid one minute and overtaken by delusion the next. He became quite emotional, which was hard to see. He would often 'zone out' for minutes at a time, and later on he slept frequently during the day. By the end, he was constantly anxious and completely confused. It often progresses more quickly than Alzheimers - with FIL it was three years from diagnosis to death.

Be kind to yourself, and to anyone else caring for your mum - it's a very tough illness to handle.

AmberBeaker · 19/09/2025 22:57

Rare Dementia Support have webinars, support groups, resources online for LBD.

Soontobe60 · 19/09/2025 23:15

My stepfather had LBD. He also had Parkinson’s which was diagnosed when he was around 70, became obviously disabled around 5 years later at 75 then received the LBD diagnosis at around 78. He lived at home with some support but became increasingly challenging with aggression, seeing things, no short term memory and limited mobility to the point that he ended up in care at 80. Medication was able to reduce his aggression. He actually improved for a while in the care home as he was getting his meds and meals regularly - my DM struggled to support him. He eventually died peacefully at 82. He had no idea who anyone was for the last 2 years of his life.

Bornafreak · 19/09/2025 23:15

@NoBinturongsHereMate Sorry about your dad. I just found out that DLB has Parkinson’s symptoms as there seems to be an overlap. I also assume there would be significant memory loss eventually but read that may not happen as I know my mum fears forgetting us.
@loobylou10 Having to deal with hallucinations must be awful and I know my mum has had them occasionally but that’s only been when she’s missed her medication I think as she is on amitriptyline so we put it down to that but I wonder if in hindsight?
@EwwSprouts Thank you and I’m sorry for everyone who’s had to witness this awful diseases and thank you all for the kind words of support.

OP posts:
lacksomjam · 20/09/2025 13:32

My dad has this plus Parkinson’s and it runs in his family so brothers also had / have it. As others have said memory loss usually doesn’t happen until later stages. He lost spatial awareness quite early so could be lost in a house, he doesn’t know where he is in his own house now. Hallucinations happen, often people, but they don’t seem to bother him too much, he usually knows they are hallucinations. He’s struggled with anxiety for a while and that may be linked.

Dad is probably late stage now, still at home, carers 4x day, has CHC funding due to very complex needs. Will likely move to residential care soon. His brother who died from Lewy body (rather than with it) was mostly asleep and non responsive in his last months but did occasionally come out of it even then.

its a horrible disease, I’m so sorry to hear you mum has it.

Cyclebabble · 22/09/2025 15:40

Hi I care for my DH with LB dementia. The Alzheimer Society do have quite a lot of support material you can reference with a google. Also via your GP see if you can get access to an Admiral nurse who can also be a great help. In terms of symptoms on my understanding these will vary, but common ones include/ Hallucinations- seeing people who are not there. DH often thinks there are more people around than there are and will converse with them. For us these are benign, but I am aware for others they can be disturbing. Loss of memory as per alzheimers, but also significant and quite quick loss of cognitive ability. LBD stops your brains ability to recognise and react to things. So when going to the toilet now, DH recognises there is something there but needs to be told its a toilet. Once this is the case he can then cope with the rest. Paranoia kicks in on occasion, notably early on. DH accused me of hiding money, having affairs and moving things around to make him look stupid. I had done none of these and that phase was tough. Not recognising surroundings. Many times a day now DH will want to go home. He is however home and cannot recognise it. All windows and doors must be kept locked and he has shown on occasion great abilities as an escape artist. Once climbing out of a first floor floor window, on to an extension and then jumping down. I will not lie, it is hard. Get the support you need. Tips. The UKCIL website is good for carers. You will need at least some support. You are entitled to a 25% reduction in council tax, which you can get from your LA. Claim attendance allowance, which provides extra benefit and when you need to carers allowance.

peony89 · 07/10/2025 22:22

Hi OP, I hope you’re doing okay. The diagnosis must have come as a huge shock.
My mum has LBD, she’s 65 and was diagnosed about 18 months ago but first symptoms were about 5 years ago. It’s a tough road and I’m so sorry.

New posts on this thread. Refresh page