Re-post: member looking for advice on Korsakoff Symdrome

MN Chickadee

A member named Lemonwood asked a question over in the Young Onset board and hasn't gotten any responses. Perhaps there are members here who have had a LO with Korsakoff and may be interested in responding. See the comment here : alzconnected.org/discussion.aspx?g=posts&t=2147558235

harshedbuzz

Chickadee-

I addressed WKS in a post here a while back-

Alzheimers (alzconnected.org)

HB

PS I don't think there's anyone around besides me currently who is familiar with it.

Lemonwood

Thank you Chickadee for raising this and HB I did see your post.  That was me asking for suggestions. My sister has Korsakoff and it is sometimes referred to as alcohol dementia.  She has severe short term memory loss, physical weakness and an awareness that her memory is poor but her lack of reasoning keeps her from understanding that she can’t go back to what she calls her real life.  If she refrains from drinking, and if she eats healthfully, and if she doesn’t have other forms of dementia, and if she hasn’t already done severe damage to her liver, she could live in this state of confusion and not get worse.  (Lots of ifs!!). There is some evidence that certain types of cognitive rehab can assist in some new learning.  Our goal is to help her feel less anxious and somewhat less dependent.  We have no misconceptions that she will recover and know she will always need assistance.  If any one has knowledge of Korsakoff or any resources for this specific type of dementia, please send them my way. 

Thank you!

harshedbuzz

Lemonwood wrote:

My sister has Korsakoff and it is sometimes referred to as alcohol dementia.  

WKS is one of the ARDs (alcohol-related dementias).

She has severe short term memory loss, physical weakness and an awareness that her memory is poor but her lack of reasoning keeps her from understanding that she can’t go back to what she calls her real life.

This is difficult. As I mentioned, dad had early stage ALZ when he had the Wernicke's episode that led to his diagnosis so the characteristic anosognosia which was painful. He knew there was a loss but kept expecting his brain would reboot in his sleep. Is there a place where she could volunteer- maybe an animal shelter or senior center?

  If she refrains from drinking, and if she eats healthfully, and if she doesn’t have other forms of dementia, and if she hasn’t already done severe damage to her liver, she could live in this state of confusion and not get worse.  (Lots of ifs!!).

That's a big if. The way it was explained to me was that an individual with Korsakoff's could make all of the life style changes and have the symptoms progress anyway. I suspect this happened with my cousin who was diagnosed in his mid-50s. 

 There is some evidence that certain types of cognitive rehab can assist in some new learning.

The strategy is centered on errorless-learning. The research I read on this explained it almost like a kind of training program as it focuses on teaching specific tasks- like fixing something to eat- rather than on regaining the loss executive function and reasoning skills- like It's noon I should fix lunch. These programs can be hard to come by; I'm in a medically well-served area and there were only a few places using this kind of cognitive rehab and they tended to be acute rehabs affiliated with teaching hospitals. 

Errorless (re)learning of everyday activities in patients with Korsakoff's syndrome: A feasibility study - PubMed (nih.gov)

Errorless skill learning in long-term Korsakoff care | International Psychogeriatrics | Cambridge Core

  Our goal is to help her feel less anxious and somewhat less dependent.

A geriatric psychiatrist might be able to craft a cocktail of psychoactive medications to take the edge off her anxiety without sedating her or further impact to her cognition. The feelings of dependence are harder. If she could live in a place that was walkable or that had good public transportation/community van service she might feel less dependent assuming she is safe out in the community alone. 

 We have no misconceptions that she will recover and know she will always need assistance.  If any one has knowledge of Korsakoff or any resources for this specific type of dementia, please send them my way. 

Long-Term Mortality of Patients with an Alcohol-Related Wernicke–Korsakoff Syndrome | Alcohol and Alcoholism | Oxford Academic (oup.com)

There's not a lot out there around this condition. I found the most information in scholarly sources coming out of the UK and Australia where this condition is seen more and in increasingly younger people. (There seems to be a genetic piece to this; in addition to dad and my cousin, my late sister likely developed Korsakoff's in the end stages of AIDS) I also got the distinct impression that the "self-inflicted" nature of this form of dementia doesn't elicit a lot of empathy from many in the medical community and that that attitude seems to extend to family caregivers as if this task isn't emotionally difficult enough. Dad's geripsych was the lone exception. 

Thank you!