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Long term reversal of symptoms?
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?
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.
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.
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.
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.).
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.
Update: The cruise went off without a hitch. One of his sons stayed in the cabin with him and kept a close eye on him, but they were out & about, enjoying meals and activities. No incidents with other passengers and the family enjoyed the cruise. Now back, there have been no problems redirecting him about driving. Its been over a year since he "reversed course."
Lane, no use of supplements or natural products. Macy Rose, that was very good advice, but insurance was obtained when they bought tickets (just for him and the son).
I don't think his docs or family expect his marked improvement to continue indefinitely, yet are grateful for the gift of having pop-pop back "on loan" for however long it lasts. There are so many sad stories here, its good to see a happy one once in a while.
I hav dememtua and hav found thruu my experience s that skeeo plays a big roll in symtoms. I require 9 hrs. to function well! Naps are also beneficial especially if i havnt gotten my 8-9 hrs.of sleep! Another thing that my neurologist suggested was Ginseng a supplement that can b purchased at mos places that sell vitamins. As with ANY vitamin or supplement check with ur doctor first to make sure they dont interfere with ur other medications!
I tried the Ginseng and could tell a difference in my brain fog the very next day after takimg just 1 tablet. May b worth a shot to try after talking to ur doctor...