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Korsakoff Syndrome
Nancy E
Posted: Tuesday, June 11, 2019 8:57 PM
Joined: 6/11/2019
Posts: 2

Our 59 yr. old sister was just diagnosed with Korsakoff Syndrome. She is high functioning and we are at a loss on finding an appropriate assisted living facility.  We are in St.Louis and trying to look outside the box to find a place for her to live and provide the 24 hour caee needed.  We love to to connect with anyone in St. Louis who has a relative or friend with Korsakoff.
Michael Ellenbogen
Posted: Wednesday, June 12, 2019 6:35 AM
Joined: 11/30/2011
Posts: 3048

Do you know what caused it?
Nancy E
Posted: Friday, June 21, 2019 9:07 AM
Joined: 6/11/2019
Posts: 2

Combination of alcohol and being underweight, which caused depletion of Thiamine.  Since it somewhat a rare syndrome their is not a lot of information to be found.  The only therapy is B1 and Thiamine, nutrition and no alcohol.  We really don't know how much or if she can regain any of her short term memory.  Since she only 59 years old and high functioning, we have found she is not a good fit for any assisted living or memory care facility.  We are hoping to find someone roughly the same age, who needs minimal assistance who might want to share the cost of an apartment and cost of a caregiver or as we call our caregiver her "minder".  Physically, she has no other issues just no capacity to retain any new information.  She was a very active person who loves to travel, be outdoors and play some tennis.
Iris L.
Posted: Friday, June 21, 2019 4:20 PM
Joined: 12/15/2011
Posts: 16403

Is she still drinking?  Korsakoff is not rare, but just unknown by most professionals, but not unknown here.  If you visit the caregiver boards, there are other members whose LOs  (loved ones) have Korsakoff Dementia or are otherwise dealing with alcohol as an issue. 

Iris L.

Posted: Thursday, August 15, 2019 6:59 PM
Joined: 8/15/2019
Posts: 1

Hello,  My 67 year old sister was diagnosed in January, 2019.  Her was from years of alcohol abuse.  She mad some crazy decisions in the past and now we see where it all began.  Before the dementia diagnosis, she moved to an assisted living facility because of rhumatoid arthritis.  She has been divorced for many years and never had any children, so I am the keeper of her affairs.  Once she was diagnosed, we moved her to assisted living.  Her cognitive abilities are decreasing rapidly.  It is a scary thing to watch.   I need someone with similar experiences to chat with.  


Callie in Boston
Posted: Thursday, August 15, 2019 8:55 PM
Joined: 12/15/2011
Posts: 404

Have you looked for a board and care type place?  These are homes that usually care for patients that do not wander, and don't need nursing care.  They are called by different names in different areas.  My mom was in one until her death - more homey and half the cost of AL.  This was in the SF Bay area.

There was a high functioning woman there - she was a stroke victim.

Posted: Tuesday, August 20, 2019 9:52 PM
Joined: 5/30/2014
Posts: 555

Nancy - I'm in St. Louis but quite frankly had never heard of Korsakoff Syndrome until now.  I'd suggest you contact the MO Department of Mental Health & see if they can help assist with housing.  I originally joined the Caregiver Forum because I had a Down Syndrome sister with Alzheimer's.  She had a case worker from the State of MO Department of Mental Health who assisted me with placement for her in an RCF.  It's worth a phone call anyway to see if they can help you.