Alcohol related dementia

PamBH

Does anyone have experience with alcohol related dementia? My son was just diagnosed and still in hospital awaiting placement (3 weeks). It seems very different from the AZ and VAD my husband had.

JeriLynn66

@harshedbuzz may chime in

Iris L.

How old is he?

harshedbuzz

@PamBH

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

My dad had mixed dementia-- Alzheimer's and a form of ARD called Wernicke-Korsakoff's. The latter is really 2 different syndromes where one precedes the other. WKS is caused by a deficiency of B1/Thiamine. The deficiency is not just from a poor diet, it seems like certain people are genetically predisposed to not absorbing Thiamine because of the alcohol use. It takes a significant amount of alcohol over a long period of time for this to become a problem. WKS can also be the result of HIV, certain cancers, bariatric surgery, eating disorders and extreme morning sickness. To a degree this may be treatable with IV supplementation and an abstinent lifestyle- sometimes the person will actually improve to a more functional baseline at which they can remain for a time, but not always. My dad's nephew had WKS and lived for about 10 years in a plateau able to take public transit, make simple meals and handle his ADLs before progressing dramatically and died at 58. His son doesn't think he was drinking but it's hard to know unless they're in a secure facility or you're with them 24/7.

My dad was treated in the hospital when he was admitted through the ED and then went to a SNF for 7 weeks where he had no access to alcohol. He was completely confused and psychotic when he got to the hospital and improved considerably with treatment and lifestyle changes-- not to his former level of function where he could manage IADLs like driving, handling investments or acting as a POA for my mom but he was continent, very verbal and able to manage hygiene and dressing and be left alone for short periods of time.

Unfortunately, he was not able to recall or understand his need to not drink and his Chardonnay became a way of trying to assert his autonomy. He could be abusive when we tried to keep him from drinking, and I wasn't interested in mom being unsafe in the role of alcohol police. In the context of also having early-mid stage Alzheimer's and being in his mid-80s, it wasn't worth risking her safety.

WKS has an amnesia feeling to it. Short-term memory and the ability to learn/retain new things is damaged early on. There's overlap with other forms of dementia in terms of symptoms and behaviors. Dad's original neurologist felt everything we were seeing was Alzheimer's with some VD as well. The neurologist from the memory center felt some of his behavior and test results could be consistent with FTD and/or VD.

Dad remained quite verbal until he died. Symptoms we saw related to WKS included a marked intolerance to cold (like setting the thermostat to 85F in July in MD), confabulations (incomplete memories backfilled with incorrect details-- this felt like rewriting family history to me), poor spatial reasoning, paranoia, reeling gait.

There is also alcohol-induced neurocognitive disorder which, if I recall correctly, doesn't respond to treatment.

HTH-

HB

PamBH

Thank you for filling in the gaps of what we've been told. It pretty much mirrors what I'm seeing. He's still in the hospital waiting for placement in a SNF for rehab to ADL status but no luck in anyone accepting him because apparently sometime in the past he gave an ambivalent answer to the have you ever considered suicide question and it's in his records and won't come out even though all doctors who've seen him have said suicide was not contemplated. Good lesson in being careful answering medical questions. The hospital is still looking and unfortunately may expand search to other states. We've already gone through the obligatory effort from the hospital to see if we can bring him home. He's content and hasn't questioned what's wrong with him but heavy in confabulation. He's regained strength and his thiamine and potassium levels are where they should be. The doctors say he's plateaued so he's cognitively where he's going to remain. I just pray they can find a facility that's close and provides good care. Definitely a heartbreaker. I was my husband's caregiver for four years until he passed a year ago. Those years were also heartbreaking but nothing like this. I would love to care for him here but the doctors are advising against it

harshedbuzz

@PamBH

(((hugs)))

Dealing with the WKS was a challenge for us as a family. I don't envy the spot in which you find yourself having been there myself. I cannot imagine what it would be like to be advocating for a child in this situation.

A couple things are in play here-- or at least were for mom and me when we were where you find yourself now.

Firstly, mom and I found ourselves judged for being unable to manage the alcohol problem which made us victims twice over. Victims of alcohol as it impacted us in managing dad and also of medical professionals who pulled on their judgy-pants and acted as if Alcohol Use Disorder is less of a diagnosis than Dementia. I am kind of over medical professionals from cultures who don't have alcohol as a public health concern for religious and cultural reasons channeling Nancy Reagan's Just Say No cluelessness. Talk about a lack of empathy. Gimme a doc who relates to Angela's Ashes instead.

Also, you didn't respond to @Iris L.'s question about your DS age. Regardless of specific dementia type, many MCFs are reluctant to offer residency to "younger" men. They have an obligation to protect residents and staff from new residents who could potentially be young enough to act out in sexual ways or who are strong enough to harm others. It's easier to just take a pass.

Also, those with ARDs have a reputation for difficult behaviors than many MCFs aren't interested in managing. Dad was turned down by mom's first choice of MCF for him based on the reputation of his diagnosis for behaviors. My first choice for dad was the state veteran's home; the staff there were nonplussed by his diagnosis and confident they could manage any difficult behaviors that cropped up. They had a waiting list, so we went with my #2 choice which worked out well.

Here is a random link my DH sent me when dad was initially diagnosed. I'm not sure if things have changed int he time since he sent these.

Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment | Alcohol and Alcoholism | Oxford Academic (oup.com)

HB

PamBH

Thank you for the history and information. My son is 55. We learned today he is being placed tomorrow in a long term facility about 2-1/2 hours away with a bridge-tunnel toll of $25 per trip. I'll know more when we actually see the facility and can assess it. There's no availability in our area at all but we're not giving up that there may be in the future. So far he hasn't been aggressive or had difficult behaviors. He is roaming into other hospital rooms so I foresee that as a problem. As with other dementias it's hard to say what behaviors may develop. The confabulation is his biggest thing now and that's not a problem for anyone but family because we know what's true and what isn't. Thanks for the link. I'm printing it out now and from having scanned over it, it's very interesting.

harshedbuzz

@PamBH

Thanks for the update.

You and your family have been much on my mind. That's quite a distance; I'm sorry it's so far. I imagine given your son's age, you're at an age where it's less easy to be breezy about that kind of travel. Perhaps something closer will open up soon.

HB

PamBH

Thanks. I hope so.