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lewy body advice

catdans

New member
Jul 31, 2021
2
0
husband in denial of Lewy Body diagnosis. Is it fair to give him medication which may make him more aware but also more upset and frightened?
 

canary

Registered User
Feb 25, 2014
16,126
0
South coast
Hi @catdans and welcome to Talking Point

It is typical of dementia that the person loses insight into their condition and is unable to comprehend that they have dementia. What medication are we talking about here?
 

B72

Registered User
Jul 21, 2018
178
0
I’m sorry catdans, if your husband denies his diagnosis. My husband has also just been diagnosed with LBD. But he’s acknowledged it, and has anyway been on medication for dementia for a year.

I’ve no idea if the medication you’ve been given will make him more aware and upset. My husband was reluctant to start his medication, but it definitely helped the dementia symptoms. When he finally received his diagnosis for LBD, we both felt different. Everything is the same, but everything is different. The diagnosis has had quite a big impact on us both. He now uses a stick all the time, and has admitted it makes him feel safer walking. But it also means he can’t walk the dog. That may seem a little thing, but he loved pottering about with the dog. He couldn’t juggle both dog and stick.

He definitely admits to more symptoms since the diagnosis, some of which are upsetting to me. But I stress, it’s nothing to do with the medication which has improved his cognitive ability, it’s the diagnosis.

I doubt this is of any use to you, except to express sympathy and understanding with your predicament.
 
Last edited:

blackmortimer

Registered User
Jan 2, 2021
289
0
When my wife first started to show symptoms some 5 or 6 years ago I adopted a strategy of not referring to dementia in LBD but referring to it as Lewy Body disease and pointing out to her (as is true) that it is similar to Parkinsons. That enabled us to have conversations about it even when the hallucinations kicked in and I was able eventually to get her to see the doctor and start on the rather protracted path of getting a diagnosis and medication, although in her case unfortunately the medication was not very effective. I think it's always best to get the person with dementia to engage about it although I suppose everyone and every case is different. Like @B72 I doubt if this is of much use but you have my deepest sympathy and willingness to help in any way I can. LBD is a particularly vicious type of dementia and every carer needs all the help they can get. God bless.
 

B72

Registered User
Jul 21, 2018
178
0
We‘ve waited 14 years for a diagnosis! But fortunately we’ve been able to discuss things from quite early on.

But I think referring to it as a disease is very important. All types of dementia are a disease, and I think if we can remind people of that it would, perhaps, make it easier for both the ill person and their Carer.
 

DesperateofDevon

Registered User
Jul 7, 2019
3,279
0
Hi @catdans and welcome to Talking Point

It is typical of dementia that the person loses insight into their condition and is unable to comprehend that they have dementia. What medication are we talking about here?
husband in denial of Lewy Body diagnosis. Is it fair to give him medication which may make him more aware but also more upset and frightened?
Please give your husband the medication. Having seen my Mum decline through denial has been tearing our family apart, the hallucinations , shakes etc
The meds can only help stabilise & if you want to keep your OH at home you need all the help you can get with LBD.
 

Banjomansmate

Registered User
Jan 13, 2019
3,170
0
Dorset
I used the phrase Lewy Body Disease with The Banjoman because I knew he appreciated his intelligence and “dementia” would be hard to accept.
Rivastigmine patches were easy for the carers to do every day. I have no idea how effective they were but was told if he missed them for more than three days he would deteriorate to the level he would be if he hadn’t used them.