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Dementia/lewy body dementia (new member) - Carers UK Forum

Dementia/lewy body dementia (new member)

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Hi everybody I have just joined today. My grandad has suddenly become very 'unwell' over the weekend. He has been forgetting words for the past few years and his past has muddled up in his head (he's forgotten he was married to my Nan since they were 18, she died 5 years ago).
But on Saturday he suddenly started hallucinating and was telling me there are old men living in his sofa, he had also moved his excercise bike into the middle of the room and said that was also a person. He thought I was a policewoman also and his daughter (I'm 24, a teacher and his granddaughter) and was talking to the pictures.
I'm very frightened for him as I never thought this would happen, I just thought he was naturally forgetfull at 83 years old.
I have been researching what it could be, and with his hallucinations of people and brightly coloured birds and mice, the one that fits most is Lewy body dementia.
Is anyone currently caring for anyone with lewy body dementia, and if so could you please advise me on what to do?

He hasn't left the house in 5 years and refuses to see a doctor. The doctor was on the phone yesterday and said they can't come unless he gives consent, is this right??
Sorry for the long post I just don't really know what to do!

Thank you
Make an appointment to go and see the doctor yourself. They might say that they can't tell you anything due to "patient confidentiality" but they should still see you and listen to your concerns. Some doctors will visit, saying they visit their "most senior" patients to check they are OK. (If anyone has Health and Welfare Power of Attorney the doctor can say more).
Also contact Social Services and explain your concerns. They have a duty towards "Vulnerable Adults".
You might find it helpful to contact the Alzheimer's Society, which deals with all sorts of dementia.
Who is doing the shopping for granddad, if he doesn't go out?
Hello Amy and welcome to the forum.

From what you say Lewy Bodies dementia is a possibility - but the confusion, hallucinations etc could be caused by something else like a urine infection that only a Doctor can diagnose. You really do need a professional diagnosis before you can do much else, so whether Grandad refuses to go to the Doctor or not - somehow you have to get him there or get the Doctor to visit.
The doctor was on the phone yesterday and said they can't come unless he gives consent, is this right??
short answer ? yes. Unfortunately in the absence of a diagnosis or a Power of Attorney for Health & Welfare the Doctor must assume that the patient has the mental capacity to refuse treatment.
Thank you for your replies! Me and some of my family do the shopping for him. He hasn't left the house in 5 years and hasn't seen a doctor in a long long time. We managed to get a sample off him and tested and it was negative for infection! Going to the doctor ourselves is a good idea, I didn't realise we could do that. He's so stubborn and is adamant that he's fine! Hopefully we can convince him to see a doctor. Thank you for the advice.
Hi Amy, I was interested to read your post as I am struggling with my dad in the same way. He hates doctors etc... as he is a very proud and private man but also very bigotted and has pushed everyone away. I am his only contact and I am trying to do everything for him following complicated operation in december. I am a single mum to a 6 yr old and at 48 myself she wears me out but he has no one else. he is 76 tomorrow and mum died 3 yrs ago. I managed to get the gp to do a home visit with my concerns but the problem is that he sees no one else and so i have no one else to compare his behaviour to. gp prescribed mirtazapine to help to stimulate appetite and help with sleep but he is very argumentative and making really odd decisions. contacted social services to day to ask for help but everything seems to be an uphill battle with the nhs and getting information is nearmost impossible. I work myself but am so stressed by this all that my own health is now suffering.i am happy for you to contact me if you think we could benefit by sharing any info or help..jan
Hi Amy
How would dad react to a nurse turning up to take some blood? I suggest that he could do with some blood tests because strange behaviour can also be caused by a lack of some mineral or vitamin. My mum had a good diet, plenty of fresh fruit, veg, fibre and so on and I thought I was being helpful by keeping her salt intake down but after a blood test I was told she was too low on sodium and something else which I can't remember now. She took folic acid tablets from then on too.