Dementia - any info?

Really sorry to hear this, it must be such a scary time.

I don't have any direct advice to give but know that teh Alzheimer's Scoiety may be a good place to start. Maybe give them a call and have a talk to them as they will be able to offer some advice.

The website may also be of use: https://www.alzheimers.org.uk/

HTH xx

My dad spoke to a group when struggling with nan's dementia. I think it may have been the Dementia Care Trust, might be worth giving them a call.

? I'm so sorry to hear your news.

I think it might well be a 'piece of string' question as there are different types of Dementia. My Mum has a type called Lewy Body Dementia (LBD) which is a pretty aggressive form. She was diagnosed with Parkinsons at the age of 67, and about a year later with LBD. She started with confusion and forgetfulness - mixing people up, not remembering if someone had been etc. She progressively declined and within the space of 2 years has lost everything apart from a few flashes of long term memory. She does not recognise family members, can't read or write and can barely speak and has periods of great angst and distress daily - sometimes she can cry for up to 4-5hours. Occassionally she can also be aggressive and display mild violence. She is now in a nursing home for dementia patients and they all are different in their characteristics, so I think its one of those things that you just can't tell how it will pan out. In a nutshell she went from being 'ok' to nothing in the space of 2 years, although I don't know how much of this is down to the particular type of dementia she has.

One thing I do know for sure is that it is heartbreaking to watch happen to someone you love so much and I hate it. If you need to chat any time give me a shout.

Thanks everyone. I will try the Alzheimers Society and the Dementia care trust. Bird, thanks for your honesty and I'm sorry to hear about your mum, it sounds heart breaking. Not sure how I can go through that but I suppose you just do if it happens. I am terrified, for him and for me, and for my mum and sisters.

Red

Sorry, just realised how self centred that sounds - I really mean that I'm not sure how I can watch him go through that, I realise it is not actually about me, but about helping him if I can.

Just to add to that, my gran had the onset of dementia when MrSun and I were first together in 95' it got steadily worse over a longer time, it wasn't as quick as Bird. described. She eventually went into a home in about 2000 after my parents tried and failed to look after her at their house.

I'm sorry your dad has been diagnosed with this Red but take each day as it comes, he still sounds pretty amazing to do that journey and to be doing that crossword so it sounds like its possibly still in its early stages.

Gran's dementia started with forgetfulness, just small things but then it progressed to not knowing when it was day and when it was night and as a consequence calling us at all hours.

Hi Red,

I'm going theough the same thing with my Dad, he's 81 this month and is showing all the classic signs of dementia. My SIL's sister specialises in dementia and alzheimers and she has been very helpful to us in trying to get a full diagnosis. There are various tests that Dr's can run to make a distinction between alzheimers and dementia I think, and there are various forms of medication which can delay the onset if caught early (i'm not entirely sure if these are available on the NHS though).

The most important thing I have learnt is to gather information; both the websites already mentioned are excellent - I also went with my Mum to her GP and he was simply brilliant in answering our questions so that my Mum felt more able to cope with some of his issues. My Dad partly trained as a Dr years ago, and is very much 'old school' in his thinking and flatly refuses to believe there is anything AT ALL wrong with him even though he has had a few turns which he knows have upset Mum.

It is absolutely terrifying and I'm not ashamed to say that some days I find it incredibly difficult to cope with. He has days/weeks when you would think he's the healthiest man alive, and will then get lost walking down town where he has lived for 50 plus years.

I really feel for you, I know how hard I find it, but please don't be afraid to ask for help. I've not worded this very well, so sorry if doesn't come across right - I still find it difficult to verbalise all my feelings about it.

Please look up those websites. And have a hug x

My Godmother, who lived with us when I was growing up, had pretty much what Red and Sunset describe. It went from her being just normally forgetful to total lack of awareness of anything over a period of about 8 or 10 years. She became faecally incontinent too, and at that point my parents couldn't cope with her at home any more. She died about four years later.

I do feel for you, it's a dreadful condition. I hope it's as easy as possible for your dad.

Best of luck in navigating all this info

Are you aware of the national dementia strategy which launched today ?http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Olderpeople/NationalDementiaStrategy/index.htm

Hi, as many others have said my first port of call would definitely be the Alzheimner's Society website and it's also worth contacting your local branch to see what assistance and advice they can give you. My Dad was diagnosed with Alzheimer's about 6.5 years ago at the age of 72, sadly we lost him 18 months ago. However, I do know other people who have been diagnosed for years and are still going. My friend's Mum has been in the late stages for about 6 years now!

There's a two part programme starting tomorrow night about/by Terry Pratchett all about Alzheimer's, it should be worth watching.

If you do need to talk about anything at all feel free to email me any time, I know what you're going through and it really helped me to have people to talk to who had been through the same thing. I also got fantastic support from other Hitchers for which I will always be so grateful.

Take care

Kate x

I'm wondering from your description whether it might be multi-infact dementia rather than alzheimers. it's better sort really as statins/aspirin/good bp control/not smoking etc can slow it right down.

? and hope you can find some more info.

Sorry to hear about your dad ?

My dad has dementia and my father in law had it as well, so sadly I've had a lot of recent experience of it. Here are their stories to add to the piece of string information collection.

My dad has always been forgetful - he's now 91 and for years and years when I was a teenager and in my 20s he got muddled, forgot words, had balance issues (apparently a sign of dementia) and he lived at home in this state for maybe 10 years until it got too difficult for my mum to care for him as he'd go walkabout and get lost. He's now in care and has been for nine years. Eight years in a general care home dementia wing and the past year in a nursing home as he now is immobile - probably more due to aging rather than dementia. He just keeps on going in spite of everything, even though he now is wheelchair bound and eats mashed up food.

My FIL who just died was 71 and had dementia for only about 10 years or so - no more than 12/13 at a guess - I've only know him for eight years. His decline was gradual, then a trip overseas sparked off a number of issues (travel, changes of environment and routine can cause dementia sufferers to decline or at least get extra muddles and out of sorts) and he went walkabout a lot, became aggressive, started weeing on carpets and not sleeping - he got day and night muddled, and basically was difficult to cope with - we were living with both MIL and FIL at the time so experienced all this which was a difficult time. He tended to have funny seisures and about 6 months after the overseas trip had a big seisure and from there moved into a care home as he was just too far deteriorated to be washed, toileted and so on at home. He passed away in December, about a year after going into care.

Dementia affects different people in different ways. Some are still able to do complex activities. FIL could still play the piano beautifully before he went into care, but was almost unable to talk or talked gibberish, which was tragic as words were his thing - we was a writer and poet. Others can't hold a conversation in ddepth about anything or keep repeating questions, but are able to do social niceties such as hello how are you, I haven't seen you in ages etc which keeps acquaintances and people like shop staff etc unaware of their condition as on the surface they seem to converse normally.

On the plus side I believe that they do stay the same person and always will be no matter what. They may not communicate or recognise you but there's always some little spark in the eye, mannerism or smile that I find helps me remember them the way they used to be, and makes me feel like visits are worthwhile.

I hope the alzheimers society and also the local medical people are of help with your dad and also the rest of your family as carers for him. We found the alzheimers society invaluable. My MIl used to take FIL to regular 'alzheimers cafe' meetings for carers and sufferers. She found a great deal of support and made a number of friends that way who she now keeps in regular contact with even though FIL in no longer around.Likewise my mum joined a group and goes along to meetings and finds it really helpful that others are also in the same situation.

Sorry to hear you are going through this RedB

I work in elderly rehab an have lots of patients with dementia and every one of them is different

I thought the same as Zoay about it being multi infarct but Im not a doctor,

I agree whith what others have said about the Alzheimers Society and even without a definate diagnosis of Alzheimers they will still be able to give general advice and put you in contact with local services

This link may also be usefull

https://www.mentalhealth.org.uk/information/mental-health-a-z/dementia/

HTH

Thank you all so much for your responses. When I have digested all the info I may well take some of you up on your kind offers of more info/time to chat. I will see if we get a more specific diagnosis - I believe he will be having further tests soon so that may help. Thanks honestly to you all, and particularly Sugarmouse for giving me a bit of hope that he might still keep that spark that makes him my dad. I know that may not be everyone's experience, but I'm clinging on to that hope!

Red

I don't have any personal experience but a work colleague's father has been put on Aricept at a relatively early stage and I know that she says it's made a huge difference - before he kept asking his wife when their daughter was coming home as he thought she was 18 and living at home, not 45 as she actually is but now is much more his "old self".

I know that it's a huge postcode lottery - we're in Southampton and the hospital featured in the Fiona Phillips documentary on dementia so I think patients can get it earlier here but it may be something worth investigating a bit later on.

Thanks clairol - my parents are in the New Forest so Southampton may well be his local hospital (possibly Bournemouth, but I know he goes into So'ton for other tests) So if the drugs are appropriate, hopefully that means he may get them

Red

I see you're in Bristol. I work in training for a care home in Bristol which has specialist dementia care units and we do lots of training in dementia for our own care staff and other care staff.

The Alzheimer's Society are great and will have loads of information for you. I've a feeling the Dementia Care Trust recently merged with another support agency, but I can't remember for the life of me what they are now called.

Hi RedB. I can't be of any help on the info side of things, but am going through a similar thing. My dad is 65 and has been having memory problems for the last couple of years. My parents live overseas and to be honest we can't fault the medical care that he's received. No one's mentioned Alzheimers as such, I think the diagnosis came back as something along the lines of 'mild cognitive dysfuntion'. He's currently using a patch called Exelon (not sure if it's available on the NHS over here) which is upposed to slow down the progression of the disease and in a few cases they see some improvement/ reversal of symptoms.

Having just come back from spending 2 weeks with them I have to be honest and say I'm not sure how effective the treatment is. I'd say there's been no major deterioration but I think there has been some. In some respects it's easy to make excuses..........he's defintiely worse when he's under stress or had a drink and he has good days and bad. For me it's hard to pinpoint exactly when things started to happen. He's always been one to harp back to 'the old days' to a degee and at the moment it's certainly his short term memoy that's affected....................he can never remember what he had for lunch etc. My mum's not keen on him driving very far now as he ended up getting lost one day. That said he is very much capable of functioning on a daily basis, as you said, he just comes across as being a little forgetful.

Like you I'm finding it pretty tough to deal with. There's a certain part of me that almost feels he's 'out of sight, out of mind' and I don't mean for that to sound flippant. With them being abroad it's easy to pretend it's not really happening or that it's not as bad as I think it is. I can barely bring myself to think 'What if.........?' and I know a pretty big part of me is in denial about it all.

Big hug to you ?