Dementia With Lewi Bodies

[MarmaladeSandwich7]

DM has this, related to her Parkinson’s, and has declined quite a lot in the last few weeks. I wondered if anyone has experience of this particular type of dementia & any tips as to how I can support DM whilst she is still living at home? DF partly cares for her but isn’t well himself.

I did have a friend with this condition, but I think you need professional advice. Have you contacted any charities or agencies? Every patient is different, although Lewy Bodies can present with hallucinations, amongst other symptoms.
If you are not already in contact with Social Services, get on to them ASAP - both to access help available now, and also in preparation for future residential care.

My mum had this form, it was very difficult, I can’t lie. The hallucinations worried her , and me too. She did decline quite rapidly in terms of if her physical abilities, she became unsteady on her feet and we soon made adjustments in terms of grab rails, shower seats etc . She stayed at home for several years with my dad and myself caring for her, she was never aggressive or argumentative, but was often terrified of what was happening to her and was very emotional all the time. eventually it became too much and she went into a home , where she lived for several more years. By this time she had lost the ability to walk, talk, eat and needed help moving around, she spent most of the time in bed
it was a dreadful way to go.

@Cairneyes I’m so sorry, that sounds so tough and the fact it went on for years more so.

@MarmaladeSandwich7 our Dad has been diagnosed with Parkinson’s with Lewy Bodies and the decline does seem to be steeper each year so @Miranda65 is right about thinking ahead and getting known to social services now.

If she’s declined a lot in the last few weeks, has the GP seen her avd has an infection been ruled out @MarmaladeSandwich7? Sometimes an infection can make older people bery unwell

So sorry you’re going through this my DF had Parkinson’s and then Lewy Bodies. I’m really sorry to say this is a horrible disease.
My DF did decline rapidly - his cognition fell off a cliff in a couple of weeks - but this was during Covid and there were a lot of other factors.

there came a point when we and the social workers agreed he couldn’t be at home any more as we just couldn’t look after him as he couldn’t be left alone on a room . And this was when he and DM were living with us and there were three adults.

OP do you have access to a. Parkinson’s nurse- they ca be really helpful, as can the dementia charity helplines- I really recommend calling them. There’s so much to consider.

very best of luck

Totally agree. Mum got lots of urinary infections and you could always tell as her dementia symptoms were much worse. She became doubly incontinent quite quickly. You will also need to look into foods, she quickly lost the ability to chew, we used to have Wiltshire foods meals delivered as they do different levels of “ softness” but she also needed fortified drinks as her appetite also went.
You will be amazed how quickly things are forgotten, Mum couldn’t read or tell the time fairly soon into the process, she did love music though!

My dad had this. It's quite different from Alzheimer's type dementia that many people are more familiar with.

He had virtually no loss of episodic memory of events - either short or long term. But as it progressed he did develop more difficulties with procedural memory - how to do things. And that interacts with the physical difficulties of the Parkinsons. He also had frequent delusions, often with urgent panic. So I'd get phone calls I could barely hear because he was holding the phone handset upside down, insisting I call the police because all the care home staff had been replaced with imposters. And his sense of time and distance went wonky - a 20 mile taxi ride to the hospital became 200 miles.

You'll probably find if she's had a rapid decline that things continue to move at speed, both mentally and physically, and she may well not be able to cope at home much longer. I'd start looking at care homes now so you're prepared and don't have to choose one in a rush.

And one thing nobody tells you with Parkinson's - and I had to specifically warn medical staff about - is that many common anaesthetics and sedatives can have a disastrous effect on dopamine, and therefore on disease symptoms and progression. If she needs any medical procedures with sedation or anaesthetic, make sure you speak to the anaesthetist about it. Give them a list of what can and can't be used (mine will be out of date, so you're probably lying best googling for a current one).

@MarmaladeSandwich7 , yes my mum had this. I’m truly sorry it is the most cruel disease I’ve ever had experience of. I wish I had some small crumbs of hope to offer but I don’t. God bless you and your family.

Thank you for mentioning about the sedatives and anaesthetics. We have a family member with Parkinson’s and that is something they I wasn't aware of.

Home | Lewy Body Posting this in the hope that it might be useful.

What were the first signs you noticed ? I am living with Parkinsons in the family . So far drugs are controlling tremors . But I think cognitive ability is failing . Forgetting, no sense of time , not understanding instructions. Then other times it all seems OK .

I have no advice I’m afraid but watching the thread and want to provide solidarity my DF is only 70 but has had Parkinson’s for 5-6 years and was diagnosed with LBD at the end of last year when he went into hospital for a couple of months. He had a lot of hallucinations (mainly about imposters and people with guns trying to harm him). He’s now back home with my stepmum with a lot of help in terms of mobility aids etc and carers coming in 6 times a day. He’s in Scotland though 200 miles from me so I don’t see him very often but keep in touch my FaceTime but it’s heartbreaking and only a matter of time before he will need to go into a home. Frighteningly his mum (my DGM) also had the same thing and lasted years in a home just existing and it was awful. If I had the money I’d have genetic testing to see if I’m likely to go the same way. Best of luck to everyone on here, it’s a horrible thing to witness.

My dad has this and his brothers had it too. He can’t remember the way round the house (still at home with carers 4x a day) or how to brush his teeth. He’s now on a purée diet as he can’t swallow. He has terrible anxiety and repeats questions as he can’t remember you’ve just answered it. He can’t walk unaided or climb stairs. But, he does remember people and events, mostly, so very different from Alzheimer’s. He does have some hallucinations but they dont seem to distress him too much.

I would say it varies a lot from person to person. As well as anaesthetics, be very careful with meds for depression/ anxiety as they can trigger worse hallucinations and other psychiatric symptoms. Try and get a Parkinson’s nurse and start to prepare for progression.

also, dad has CHC funding as his needs are so complex and unpredictable, so as things progress that may become available.

As others have said so sorry you are dealing with this, it’s an awful disease.

Thank you for all the kind words. We have help & my Mum has a provisional place in a care home - the Manager is going to do a needs assessment. I was more wanting to know how to support my Mum whilst she’s still living at home. I find some of the professionals treat her like a child, which is upsetting. I try to talk to her as normally as possible. Dad gets impatient with her, which I’m sure is pretty normal - it doesn’t help that his hearing is really bad & Mum’s voice is weak from the Parkinson’s. Am I right that you go along with things eg Mum thought I was my Aunty the other day & I didn’t correct her?

Absolutely you’re right to go along with how she is perceiving the world currently.

My DMIL would often talk to my DH, her son, about the nice man who took her out for the day. No recognition that he was the one that had taken her out or that he was her Son. We used to just smile and say things like “how lovely, it sounds as if you had a great time”.

I’ve not read the book Contented Dementia but I’ve often seen it recommended on here so that might be worth looking at.

If the Carers are talking to her like she is a child, how does your DM respond? It might be upsetting for you, but if she is ok with how they treat her and responds well, it might just be one more thing to get used to on this journey unfortunately.

Is your DF getting any time for himself away from your DM?

And low hearing is a real risk factor in developing Dementia, has he had his hearing checked recently and does he have hearing aids?

Sadly, DF isn’t well either & currently going through chemo. He was playing golf 3 times a week well into his 80s (he’s now nearly 88) so it’s hard to see him inactive. He’s been an incredibly devoted DH but is doing too much now 😢

You have such a lot going on. It does sound as though they would both benefit from your DM moving to a Care Home. Your poor DF will need rest to help him deal with the Chemo. Have you got a date for the assessment yet?