Korsakoff Dementia

Delinda60

Is anyone in here caring for a spouse that has Korsakoff dementia? I have so many questions

fmb

@harshedbuzz I believe you have had experience with this.

harshedbuzz

@Delinda60

My dad had Korsakoff's. I know one of my cousins did and suspect my sister might have as well.

Ask away.

HB

harshedbuzz

@Delinda60

My dad had Korsakoff's. I know one of my cousins did and suspect my sister might have as well.

Ask away.

HB

harshedbuzz

@Delinda60

My dad had Korsakoff's. I know one of my cousins did and suspect my sister might have as well.

Ask away.

HB

Delinda60

Thank you Harshedbuzz…here I go…lol

1. Is there any treatment other than thiamine replacement?
2. Can it get better once they stop drinking? (he has been sober for 9 days)
3. Does it affect their appetite? I struggle getting him to eat.
4. Do you know of any resources for patients/caregivers online.

Our PCP doesn’t seem to eager to try to treat it. He has been taking Aricept for 3 months but can’t tell that it’s helping at all. This is more a statement than a question I guess…my husband seems to have gotten a lot worse in the last several months. He asks the same thing over and over, he texted a cousin to send him the cousins mom's phone number so he could call her, she died 4 years ago. I tried to explain it to him but he got very agitated. He seems ok f we are home but once he gets out away from home it gets worse.
Thanks so much for taking the time to answer these questions.

DW

harshedbuzz

@Delinda60 said:

Our PCP doesn’t seem to eager to try to treat it. He has been taking Aricept for 3 months but can’t tell that it’s helping at all. This is more a statement than a question I guess…my husband seems to have gotten a lot worse in the last several months. 

Has your DH been seen by a neurologist/memory center? This might be useful. Dad was seen at a big gun memory center. There was some thought dad might have Alzheimer's. Dad had a PET scan to confirm the diagnosis. He also had some cognitive testing. His testing and symptoms were suggestive of mixed dementia and that was the diagnosis given. One caveat, IME, patients with Korsakoff's and their families don't seem to be treated with the same respect and compassion that are associated with other forms of dementia. Moreover, they seem woefully ignorant of and frustrated by the dynamics of addiction.

IME, many physicians don't seem to have Korsakoff's on their minds or know a lot about it. None of dad's doctors, over 15 years in 3 different states, ever screened for dementia or discussed the risk of ARDs. Dad was open about his drinking and one PCP in MD instructed him to stop drinking whiskey but since his liver panels were good nobody bothered him. Dad replaced the whiskey with a similar ABV of beer and Chardonnay. Dad was diagnosed in a psychotic episode by a 2nd year neurology resident at a university medical center ER; a week before the ER specialist at their local hospital screened him for a stroke and sent him home missing it entirely.

Dad was hospitalized and treated with IV Thiamine for 5 days. He got his first infusion in the ER as soon as they did his blood draw. After discharge, dad went to a SNF rehab to build strength. He continued oral Thiamine and was told to maintain abstinence. Neither of his neurologists (attending in the hospital or at the MC) felt any of the Alzheimer-specific medications were appropriate for him and I wondered if they were concerned about some FTD in the mix.

Is there any treatment other than thiamine replacement?

Along with abstinence, we were told no. The hospital seemed very invested in the IV vs oral Thiamine to start but he did go home on regular OTC pills. I did look into a substance use program specifically for seniors and found one. The director was willing to enroll him in a 28-day program but didn't think it would be successful given the memory issues that would prevent him from learning strategies and the poor executive function that prevented him from recognizing when he need to do something differently. We felt the experience would worsen his already white-hot anger and decided against it.


Can it get better once they stop drinking? (he has been sober for 9 days)

I was told they can, but that it might not be to a pre- Wernicke psychosis level. In dad's case, he was completely delusional in the hospital. There was a summit of world leaders being shown on TV and he conflated it into his attending neurologist being the secret leader of the world and that his residents and nursing staff held rallies and sang in the halls at night. Also, the man in the bed near the window was hiding kittens.

By the time he got to the SNF, he was clearer and continued to improve over the next month and leveled off. He still had significant memory, empathy and executive function losses. This is hard to untangle for a couple reasons, one is that dad brought a lot of cognitive reserve to his dementia— he continued to do significantly better on the quick screening tests that his real-life ability to function would predict. And also, he was 82 with Alzheimer's progressing. He was diagnosed in 2016. I noticed very early symptoms of Alzheimer's as early as 2005; what I recognize now as symptoms of WKS weren't really in play until about 2009 so I never really saw "pure" WKS.

Once he began drinking again, his dementia progressed fairly quickly, but he also had moderate to late-stage Alzheimer's. I was told by my cousin who had it, did quite well for over a decade living in an in-law suite at his son's house. He was functional enough that he could manage his ADLs (but not IADLs) enjoy his grandkids, walk to his AA meetings, make simple meals. He died in his late-50s. It's not clear if he relapsed or died from other causes.

Does it affect their appetite? I struggle getting him to eat.

It didn't here, per se, but dad's tastes changed dramatically. He developed a serious sweet tooth and preferred things that were easy to eat. He would sometimes refuse to eat to spite my mother in the months right after his diagnosis when they were still adjusting to the new diagnosis and changes in their lives that came with it. Mom's anger around this in the early days sometimes triggered defiance in the form of uncooperative around eating, drinking, exercise, medication, hygiene and most especially abstinence.

Do you know of any resources for patients/caregivers online

You're certainly welcome here. Mom and I attended a local IRL support group that was very helpful. TBH, once you have the diagnosis, dealing with symptoms and medications is pretty much like any others form of dementia. There's a lot of overlap in symptoms and behaviors.

One thing that was helpful for my mom was getting a psychiatrist and talk therapist on board to help her with her anger issues and then the uncomfortable transition to being the adult-in-charge. It was really helpful to have a medical professional who was looking out for her rather than putting what was best for dad front and center. The other thing was getting dad in with a geriatric psychiatrist who was a wizard with psychoactive meds to manage his anxiety which looked like agitation and aggression.

There's not much information out there about WKS. DH found this paper for me.

https://academic.oup.com/alcalc/article/44/2/148/185585

HB

Delinda60

Thank you so much for the answers! I guess I should have started my post from the very beginning…My DH lost his job 2 years ago because of the beginning symptoms of what we thought at the time was going to be diagnosed as alzheimers/dementia. He has had 2 brain MRI's with the first showing front temporal lobe and hippocampus volume loss, with the 2nd showing further loss in both areas. He has been seen by 2 different neurologists (one at a major university hospital in Dallas, TX) but they did not diagnose him with any memory issues. After loss of his job and no diagnoses his moderate drinking became a problem and his memory begin to get worse and worse. He ended up in the hospital after a bad episode where he had drank all night and was violently ill the next day. When I got home from work he had been vomiting for probably 4 hours and passed out and had what I think was a seizure. Called ambulance and spent 3 nights in hospital detoxing. Then, in November last year after a bender and after I had left for work that morning he got in the car and drove to the next city over and on the way back got stopped and arrested for a dwi. I forced him into rehab but he ended up walking out after 6 days. Fast forward to 2 weeks ago and I gave him the ultimatum me or the alcohol. Also, he is on probation for the next 12 months which he is not allowed to drink. He detoxed at home (was very hard) and so far no drinking. I am hoping that if he is able to stay sober his mind might improve at least a little. I have him taking thiamine, B6, Magnesium, and Vitamin A every day along with his prescription meds. He will be 63 this August and man this isn't how I pictured our "golden" years would be. The suggestion of counseling for me is a great idea. I too am dealing with a lot of anger and resentment, because I feel like he has brought this on us both. So with all that being said, thank you again for your answers and insight.

DW

harshedbuzz

@Delinda60

I'm so sorry for the situation in which you find yourself. Your feelings mirror how my mom felt as well. In fact, when I took her to see the CELA to set up POAs for them both, we did explore divorce as an option. Ultimately, she decided against it. She was livid about the financial hit she would have taken in a divorce (he'd already lost $360K of their nest egg day-trading earlier in the disease) and he would have gotten half of an inheritance coming her way plus she did not want to cede control of dad's care (and assets) to me. She claims she didn't want to "burden me" but she knows he and I never really got along and knew I would have placed him as soon as I was his guardian. In the end, she gambled that given his age she'd likely come out ahead financially and she was right. Her attitude to him did soften with time as he became less combative, and she's pleased now that she stuck it out. That said, it took a good 4 years or so before she could look back fondly on the happier phases in their life together.

Good luck as you work through all of this.

HB