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Long term reversal of symptoms?
feudman
Posted: Wednesday, January 9, 2019 7:15 AM
Joined: 6/5/2014
Posts: 1211


Just curious if any of you have ever experienced a prolonged period where your LO got markedly better? I'm not talking about "moments of clarity" or even a few days of modest improvement. 

A daughter in my support group claims her father has been much better since this past spring, shedding some symptoms entirely & many others are showing improvement. This is despite being dx'ed with dementia by three different neurologists appx. 4 years ago, and progressing normally to about stage 5. He is now testing better on MMSE and other basic cognition tests. The only med he's currently on is Donepezil (Aricept), but he's been on it for years. 

The whole family is excitedly planning a vacation cruise next month, and may let him start driving again. We didn't want to "rain on her parade," but the facilitator & I are uneasy about these plans...we just don't see how this is possible, unless he was misdiagnosed. What do you think?


ruthmendez
Posted: Wednesday, January 9, 2019 8:27 AM
Joined: 9/8/2017
Posts: 1720


the family got hyped with some falsehood. They're not being real and their let down is gonna hurt big time.
Iamnumberfour
Posted: Wednesday, January 9, 2019 9:01 AM
Joined: 2/29/2016
Posts: 1188


Perhaps he was misdiagnosed, perhaps there was a confounding diagnosis (depression, medical condition like hypothyroidism, vitamin deficiency, etc.) that has resolved, making him appear better. Perhaps he has gotten better care, services, nutrition, and planned social interaction since actually getting a diagnosis, which has caused some improvement. I actually thought my mom was (temporarily) better after we stopped the Aricept; the GI effects were brutal and really limited her social interaction when she was on it. Perhaps the family is in deep denial.

For what it is worth, my guess is that this is a temporary blip unless he was truly misdiagnosed. The cruise? Maybe, although they should plan for worst case scenario. Resuming driving sounds like a terrible idea.


Deanna_M
Posted: Wednesday, January 9, 2019 10:18 AM
Joined: 12/24/2016
Posts: 154


My mother showed improvement in her mini-mental scores after she was placed in memory care. She also was more relaxed and happier than she had been in years. The doctor attributed this bump to the memory care environment: less stress, more socialization and intellectual stimulation, and more support.

Now her decline is striking: considerable decline in short-term memory, stressed out, not happy, and confused. So, the improvement was temporary...probably about 4-5 months.

If the father's initial diagnosis is correct, then it is likely temporary. Perhaps you could gently suggest to the daughter to take her father to the doctor before making a lot of plans and lifestyle changes.


pidgeon92
Posted: Wednesday, January 9, 2019 1:11 PM
Joined: 10/25/2018
Posts: 75


They're going to take someone with mid-stage dementia on a cruise? There's a recipe for disaster.
Eric L
Posted: Friday, January 11, 2019 5:33 PM
Joined: 12/5/2014
Posts: 754


I'm kind of with Pidgeon on this one. I read this post last night, right after we got back from a short little 4 day cruise (which was a fantastic break from the dementia monster lurking around every corner at home). I'm not a veteran of cruises by any means (twice now), but I couldn't imagine brining my MIL on one of those at around this time last year (she was probably in stage 5ish at the time). The dining areas are loud and at full capacity at meal times, there is loud music all over the place, and the only place to escape tends to be a cramped stateroom. Don't get me wrong, I've really enjoyed both of the cruises that I have been on and I look forward to our next one, but I really just can't see someone in the mid to late stages of dementia enjoying a cruise. And if he or she doesn't enjoy the cruise, that also means that someone is going to be on "Dad" duty and that won't be enjoyable, either.

I'd say that the driving thing is a no-go. I would guess that even though the MMSE scores are improved, they probably show someone that is still impaired to the point that he shouldn't be driving.
Mike&BrendaTX
Posted: Saturday, January 12, 2019 1:35 PM
Joined: 7/10/2017
Posts: 385


feudman,

First, I haven't heard of any long-term reversal of symptoms; certainly in our case there have been none.

As for cruises, my wife and I have been on three since she was diagnosed. The first two were early to mid stage 4, and she did all right, but expect a lot of shadowing and a considerable number of "I really don't feel like doing that" responses to activities.  The last cruise we went on was a short one when she was nearing stage 5.  That didn't work as well, since she mainly wanted to stay in the room and we even had to cancel some planned excursions.  I wouldn't recommend stage 5 or later, especially if flights are involved (getting to/from embarking point).

As far as driving, NO driving after a dx of dementia.  The legal consequences (lawsuits) should they be in an accident (fairly likely) are severe.  Most states invalidate their driver's license after such a diagnosis.

If he was not misdiagnosed, hope your friend in the group comes to her senses.

Mike


harshedbuzz
Posted: Saturday, January 12, 2019 5:29 PM
Joined: 3/6/2017
Posts: 1132


My dad did. 

He had mixed dementia- early stage Alzheimer's and Korsakoff's (a B1 deficiency caused, in his case, by alcohol abuse) when he was diagnosed in 2016. He was treated with IV thiamine and regained a lot of cognition for about 6 months until he started drinking heavily again. I am told that, had he remained abstinent and had he not also had another form of dementia, he would likely have stayed at or near that new baseline- not quite where he was before he became an alcoholic but not any worse either.
Lane Simonian
Posted: Sunday, January 13, 2019 10:34 AM
Joined: 12/12/2011
Posts: 4407



These are the areas of improvement that I noticed with my mother using aromatherapy: ability to remember her name, to recognize her home, to count numbers and recite the  alphabet, and to recognize objects.  She had fewer delusions and became more comfortable showering.

I don't know if you would be comfortable inquiring further, but I wonder if the father is taking any supplements or other natural products.  I have never seen or heard of anyone spontaneously improving with Alzheimer's disease over long periods of time, but I have seen videos of people with probable Alzheimer's disease improve over the long term with various treatments (aromatherapy, CBD oil, synthetic THC, for instance.).

https://www.youtube.com/watch?v=sKN3DGxl06o

 

https://www.youtube.com/watch?v=sb6g5-A1ljA

 

https://www.youtube.com/watch?v=zM8f7Pj90LI

 

https://www.youtube.com/watch?v=ZWL0aFuUl6U


feudman
Posted: Thursday, January 17, 2019 11:15 AM
Joined: 6/5/2014
Posts: 1211


Thanks to all for your responses.

One point I may not have clarified is that this man had progressed into stage 5, but is now presenting as being in early stage. His daughter claims when out in public lately, nobody suspects he has dementia. As for the dx being incorrect three times, that would certainly be unusual, but possible. I believe he had a PET scan.

FWIW, I did try my best to talk her out of letting him drive, but I couldn't bring myself to discourage the already scheduled cruise. There are grandchildren, and their sibling parents want so much for them to have a good memory of their grandpa, before it's too late. Your cautions are well noted, but the daughter (his primary caregiver) is going into this with eyes wide open, and has explained the risks to family.

Lane, I would like to find out more, as this case is so seemingly incredible. I will report back post-cruise.


MacyRose
Posted: Thursday, January 17, 2019 5:08 PM
Joined: 12/15/2011
Posts: 3729


There have been all kinds of cases where someone with dementia got in trouble on a cruise.  I suppose as long as his daughter knows someone must stay with him 24x7 it will be alright, but there have been cases where an elderly person was found wandering the ship lost by ship's personnel and he and his wife were confined to their cabin for a few days and then put off the ship in a foreign port with no help to make it back home.  I know of some other distressing cases where elderly dementia patients wound up in foreign hospitals.  At least advise your friend to buy cruise insurance - from insuremytrip.com not from the cruise line for both medical and evacuation, JIC.  Cruise lines have been notorious for having insurance that won't pay out if someone comes aboard with a medical condition - that is why I am recommending any of the outside companies sold on insuremytrip.com.  If she is not sure what insurance to buy, have her call them and ask what insurance fits the situation best. At least should he need an air ambulance home, the insurance will pay for that.
 
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