Young onset dementia with Lewy Bodies

[Allnightlong2016]

Hi I’m wondering if anyone here is in a similar situation to me. My dp has been diagnosed with Young onset dementia with Lewy bodies aged 49. To say we are devastated is an understatement. We have dd aged 10. We’ve started process of LPOA and had some difficult conversations about end of life wishes and wills. I’m not really sure what I’m asking but maybe just looking for advice from anyone who’s been through similar. I’d be really grateful as this is difficult to comprehend and navigate.

I am sorry, OP - it is a horrible illness. Consult a solicitor and a financial advisor, so that you have everything in place as you want it. Make sure that everyone agrees about future care needs - as you have a young child, you might need to opt for residential care sooner than you would otherwise choose.
Consult the relevant charities for any advice they can give.
Make sure that you have good friends primed to step in and assist, as and when needed - don't be afraid to ask for help.
And make sure that the school know the situation.
You can't avoid the emotional stress, but if the practicalities are sorted it will make a world of difference.

Thank you for taking the time to reply. We are working our way through the practical stuff but everything seems to take so long to get through and having conversations about the same things multiple times is hard when it’s emotional stuff. I will contact some charities, and see what they can offer. It’s all starting to feel very real now there’s a proper diagnosis. I was hiding in denial earlier but now I have to start facing up to the reality of it.

I had a parent rather than a partner who had a similar age onset. I would say the Alzheimers Society were a huge support, they help patients and carers with all dementia not just Alzheimers.
It's horrible but start looking at possible care facilities now. It is really hard to find good ones taking on young dementia patients that will eventually need nursing care.
I'm so sorry xx

I honestly don't know whether this is a positive or not but my father has survived well beyond the 5 years we were predicted. I think we're closing in on 15. He deteriorated very rapidly at first but then seemed to stabilise. His behaviour wasn't safe for him or us and he wasn't able to stay at home after diagnosis.

Just wanted to say I'm so sorry for the situation you and your DP are in, OP. We lost my DF to Lewy Body Dementia last year - not young onset though. It's very hard. Seconding the suggestions to access support and make plans early, watching my DM trying to decide on his behalf things they'd avoided discussing before was part of the distress

One of my friends has a sibling with early onset dementia - one of the things I observed in their situation was them having to reaptedly answer the same, often daft, questions.

It made me think that if ever I was in that position I'd get all my nearest and dearest together in one room and lay it all out for them: this is what we know, this is what we don't know, these are our plans for the next however long, this is what we need from you, this is what we don't need from you..

But I appreciate some people are more private, and in reality people might not have the emotional or practical bandwidth for that when there is so much else going on.

My dad had lbdementia and he never forgot who I was! He always showed me love. I encouraged him to always say what was on his mind/what he was seeing and gave him a safe space to talk. He was always agreeable and fine. He managed the move from home to care home (I worked full time) I still took him on holiday sometimes abroad and he was fine xxxx

My dad has Lewy Body Dementia. He’s on Revastigne (not sure about the spelling?) medication which has helped reduce the hallucinations and confusion. Has you DH been offered medication?

My dad is 80 and was diagnosed 4 years ago. He lives independently in sheltered accommodation with carers coming in to give him his medication twice a day. His LBD, and in particular the hallucinations and confusion, are managed well with the meds, he is very active, walks every day (has his postcode stuck to the back of his phone in case he gets lost which has only happened once), plays bowls and does his own food shopping. His memory isn’t what it used to be, but he’s currently doing really well.

Just in case no-one has told you, although I’m sure doctors have, but just in case, there can be a link between Lewy Body Dementia and Parkinson’s, and your DH may benefit from being screened for Parkinson’s if he hasn’t already. Again there is medication that can help reduce symptoms of this.

Also, your local authority adult social care dept can help. They can come to your home and do a needs assessment for your DH and give you advice as his carer. This will mean both of you are in the system for when the LBD advances and will speed up processes in the future. The LA can also refer you to Dementia support. Although this may be different in different counties.

It might be an idea for both of you to write wills now, if you haven’t already got them. Or amend them, now things have changed. Definitely get LPOA, and ensure you know his wishes for his future care.

I’m so sorry this is happening to your family.

I'm very sorry about this, OP.

Have you read "Losing Clive To Younger Onset Dementia" by Helen Beaumont?

Hi op. So sorry to hear that you're in this awful situation. We had a family member diagnosed at a similar age and it was a very lonely, difficult experience.

I don't have much of anything useful to say, but am sending unmumsnetty hugs.

My mother had this - she had a drug that really helped her. I cannot remember what it is called. There are several now so it is worth asking about this. It is a truly dreadful disease and my heart is with you. The practical things are in a way the easiest part - emotionally it is so hard I know.

My OH had Parkinsons with paranoia - and PD is a related illness with LBD, so I have two experiences of these difficulties.

Alzheimer's Society help with all dementia illnesses including LBD, and they have so much advice to offer.

What I would say to you is that you do need to look after yourself too. I organised a carer throughout so that I could continue to attend choir rehearsals. It was a lifeline for me and preserved my sanity.

Sending a hand hold.

My husband has Lewys B with Parkinsons. We have a Care and Repair dept of local council who have been very positive and helped us almost immediately with any problems we have and they have been far more helpful than Social Services etc. They have had outside lighting fitted for us, stair rails etc, even helped with applying for a blue badge and Attendance Allowance form filling. Locally there is not much help although there is a weekly dementia meeting we attend and they also keep us informed with things we need to know about.

Thank you so much everyone for the hugs, handholds, advice and tips and reading suggestions. I do appreciate it. DP is taking rivastigmine and I hope it has a good effect like it has for some of the people mentioned here.

I'm so sorry that you and your DH are going through this.

You may have some local groups that may help with advice and support but this is also a great forum for advice or just a vent. It has sections on many related topics and helped me out so many times when caring for family members who had dementia.

forum.alzheimers.org.uk

One of my best friends is going through this with her DH. Please ask for help from people you love and trust. You need it. Sending you lots of love.