Support group for Korsakoff's psychosis?

[nh_user_40018]

Is anyone aware of a support group which focuses on patients who suffer from Korsakoff's psychosis?

The support for Korsakoff's on the patient.info suggests support generally only from alcohol groups - which deals with the alcohol dependency aspect. But the other, and totally separate, aspect of the illness is the physical brain damage which presents as memory loss, cognitive impairment and confabulation.

A support group for that latter aspect would assist by perhaps discussion of a CRT pathway to help develop implicit and explicit strategies to help the patient develop an improved level of independence (and, co-incidentally, self-esteem)

[nh_user_292332]

Trevor,

what is it and it does sound similar to the effects alcohol has on the brain?

[nh_user_40018]

Korsakoff's psychosis is caused by the lack of Thiamine (vitamin B1) going into the brain, which causes damage to the hippocampus (the part of the brain that saves short term memory) as well as to the cognitive parts of the brain, and can develop into Korsakoff's dementia, as it has done in my partner's case. She has severe memory loss.

Alcoholism and a poor diet can starve the brain of Thiamine, and Korsakoff is typically associated with alcohol - but any condition that robs the body of Thiamine can cause Korsakoff's (eg. beriberi). 

Over years of drinking, alcohol causes the brain to shrink, with concurrent diminishment in functions across a broad spectrum of symptoms that present themselves not so unlike Alzheimer's

Therefore, although Korsakoff's and  "alcohol-related dementia" are often confused, as many of the symptoms are similar, they are in fact very different.

Patients with Korsakoff often sound completely normal, and function with a good level of intelligence - but cannot form new memories and are caught in the repetitive hell that is severe short-term memory loss, and have cognitive and planning issues (functions which rely on remembering ‘where you are’ in the process)

When Jenny was in hospital with Korsakoff’s,  the diagnosis of the NHS was to 'write her off' (ie. the culture of 'dealing with an alcoholic' – in fact, one consultant in the hospital told me, at the bedside in front of some students, that ”she has Korsakoff’s and is all her own fault”!) – the NHS proposed that Jenny should be placed in an Elderly Nursing Home, although she was only 56 years old!!!!!

I did a lot of investigation, mainly via the internet, and learnt more about Korsakoff’s. Using resources from outside the NHS, I ensured that Jenny had some Cognitive Rehabilitation Training and, using the "Crosson's modified model of Awareness (Malia 1997)", I have helped Jenny to develop strategies and processes which enable her to lead a happy & satisfying lifestyle, notwithstanding her severe dementia.

The purpose of the original post was to find out whether there is a support group for persons who have Korsakoff’s – as a forum for sharing ideas and learning about what has worked.

I hope that the above gives you an idea of what Korsakoff’s is.

[nh_user_40018]

I should have added that Jenny, who suffers from Korsakoff's, lives at home with me and never went into a Elderly Nursing Hme, as was being proposed by the NHS.

A Korsakoff's forum would help all who are affected by the illness, either as a suffer or family/friends who support the sufferer

[nh_user_292332]

Thanks so much for taking the time to do that. I looked it up too. I am very sorry that u have to suffer watching her suffer. Many blessings sent UR way.

cheers

hope 

[nh_user_292332]

 That amazing that u have given so much.. Truly I am humbled by UR experience.

PEACE, LUV & LAUGHTER 

 

[nh_user_40018]

It is not only the suffering, but also the joy and satisfaction by helping Jenny develop strategies to help her cope with the profound dementia that are rewarding for me.

There ae also positives - for example I can take Jenny with me to buy a Xmas present for her and she can choose something that she really likes and even try it on to make sure that it fits - it is still a real surprise when she opens the present! In fact, she gets a double surprise - she gets a surprise when I open my present and she sees what she has bought and wrapped for me!

A positive attitude to the joys that life can bring certainly does help 

[nh_user_1107031]

Hi trevorF - this is an old thread, so I hope you don't mind me resurrecting it! My dad has the same condition as your wife, and the NHS is in the process of trying to get him into a nursing home. I would love for him to not have to go into one, and perhaps just live with a carer at home (sadly my mum had a stroke many years ago and therefore cannot look after him as you are doing for your wife - frankly she would also benefit from a carer at home). However, the major concern I have is that he seems to show no indication that he will slow down or stop his drinking. Did this happen in your wife's case?

And if you did manage to find a Korsakoff's support group, I would love to hear more about it. It sounds wonderful, what you were able to do for your wife - I hope you have the support network you need around you too in all of this.

Thanks!

[nh_user_1132779]

Good Morning Trevor, I wondered if you did find out if there was a support group out there ?  I suffer from Korsakoffs, diagnosed this summer and am struggling.  I appreciate how horrible it is for those around me and was so glad to read your post that you do get it and don't apportion blame.  It is horrible and you are right that the attitude seems to be "you have done this to yourself", which results in days of tearful guilt and frustration.  It's not my intention to make this about me or be selfish, but if you did find a place I could go online, I'd be so grateful if you could share it.

Thank you.

[nh_user_1151134]

Hello Natalie - I’ve just picked up this thread.  My husband is in a care home with ‘permanent Korsakoff’.   If there is a support group out there, I’d be pleased to hear about it.  If not, maybe we should start one.   Sue

[anon87974465]

I was diagnosed with korsakoff's syndrome 7 years ago and it just feels like once your diagnosed and discharged from hospital your on your own. I do have my family but they don't understand my illness and it would be nice to be able to communicate with other sufferers just for keeping sane sake really. I am only 48 and living with this illness is a very lonely life also !!