NAD + supplements, NR or NMN (and caretaker's guilt)
Has anyone had any experience with these supplements? I did what research I could find but there is very little and the results were mixed.
My kids are pressuring me to add them to DH's meds, which i might, but they are convinced that this is going to stop the ALZ or even reverse it.
Second question: how to deal with these well-intended suggestions without telling them that every time they come up with a new "cure" or "stop the disease" article i am left with the guilt of not doing enough.
Comments
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my mom gets frustrated with me when i suggest supplements or other holistic options. maybe she feels guilty for the same reasons you might. As the daughter I feel she is of another generation and only respects Western medicine, and it's hard to bridge that divide. Her generation almost worshiped/ still worships doctors. I would say that you can't do it all as a caregiver for someone with dementia, and your children are trying to help. Instead of feeling guilt, you might work together on being more of a team. You cannot be expected to do it all. I imagine your children really want to help. It's important to find a way to let them help -and to work together. If that is hard for you , if you are used to doing everything yourself (maybe because others haven't offered enough help) - if you get a chance to talk about these dynamics with your kids and also with a trained professional ( the dementia hotline - part of this organization - is great ), maybe the guilt can lift and you all can work together more as a team.1
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I think (being of that older generation) that if something were going to make a meaningful difference someone would have noticed, not just the website hawking it. My dad is always asking me about some supplement ($50/bottle) that basically is a vitamin blend made from healthy foods he already eats.
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@Maru It can annoying to have others offer little in the way of "help" beyond forwarding articles or suggesting expensive unproven supplements. Better they should devote the time spent researching to providing you some respite.
One helpful strategy a friend used was to encourage the adult child to attend appointments and ask the neurologist about them. That backed them down.
HB5 -
I agree with sandwichone123. There is no cure! They are just trying to sell you something. You have to do what you think is best. My uncle told me he read that cbd gummies would cure mom’s dementia. I told him I would look into it and he never mentioned it again. When my dad had cancer mom insisted we never question the doctor. I didn’t have a medical degree and it was arrogant of me to question anything (even to advocate for him). On the other end of the the spectrum you have people who believe the doctor knows nothing and a little essential oils and a supplement is going to fix everything. In my opinion the answer is somewhere in the middle. You should not feel guilty. Thank them and tell them you will look into it and hope it never gets brought up again. I like harshedbuzz idea to have them come with you to talk to the doctor about it.
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Invite them to the appointments! Such a good idea. Cheers to that.
Lots of people are into magical thinking, not reality based. People want so much to believe that everything is fixable, but this is a terminal illness. It is a sad truth.
My mother had a couple of incurable illnesses (physical, not cognitive); she died in her early fifties after two decades of difficult, often painful symptoms. An older relative once gave her a copper bracelet, convinced that if she would just wear it, she would get well. A group of people she barely knew wanted to come and anoint her with “healing oil.” She said no on both counts. Over time I have learned to feel more compassion for people who imagine they are trying to help. But as a teenager and young adult I was just angry: Why couldn’t they leave my mom alone? Did they think she was willfully stupid to go through endless surgeries and treatments, getting second and third opinions and quizzing doctors and making hard choices—when just a bracelet or a drop of oil would solve her problems? I was insulted, more than she was, I think.
On the generational question: I think that trust in doctors is more individual than generational. I remember people in my family in the generation born around 1900 who were very skeptical of doctors. Those things vary a lot.
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my husbands Neurologist said don’t waste your money. It’s a progressive disease with no cure. No evidence any supplements help. I would tell them that you trust the doctors and you are not adding anything without consulting the Neurologist.
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Thank you, Caretakers. Good advice. Since we will see the neurologist later this month, I will ask one of the local ;eto go with us and we can discuss this.
Personal note: I am a guilt -laden person by nature, and I have to look to others to give me a more rationial viiewpoint. Thank you.
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Your children may be motivated by this article:
The good news is that NAD + may help restore cellular energy and combat oxidative stress in mice models of Alzheimer's disease. The bad news is that it may not be enough in humans (although that is still be determined).
Genetically engineered mice have only one or two sources of oxidative stress (amyloid and tau) whereas humans often have many (environmental toxins; a diet high in sugar and other carbohydrates, saturated fats, and high fructose corn syrup, psychological stress, traumatic brain injuries, etc.). The oxidative damage in humans with Alzheimer's disease is almost always higher than in genetically engineered mice so things that work in mice often have much less impact on humans. So something may cure Alzheimer's disease is mice but only slow it down in humans.
I have spent a decade trying to find the best direct antioxidants for the treatment of Alzheimer's disease. The best that I have found so far are panax ginseng and aromatherapy with certain essential oils (such as rosemary and bay laurel). Alzheimer's disease may not be curable but there probably are ways to significantly slow down its progression.
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There are so many potential remedies being studied. One thing I am learning though, is that these "remedies" are not a long-term solution. There is currently no known cure for Alzheimer's and often many of these treatments are a waste of money, and worse yet… some of them can be dangerous.
There are studies that show suvorexant (a sleep aid) reduces Alzheimer's proteins, potentially slowing cognitive decline. But, suvorexant can also cause behavioral changes, worsen depression, and induce suicidal thoughts, so it should not be done without medical supervision. There are studies that show that creatine supplementation can improve working memory and executive function, but there are many creatine products on the market and some have been shown to include toxic substances in their ingredients. So, again, it is recommended that supplementation should be under the supervision of a medical professional. There are studies showing that lithium could improve cognition in Alzheimer's, but taking lithium is not something a person should do without the oversight of a doctor.
While the studies show that NAD+ can reduce inflammation and improve cognition, supplementation comes with the risk of cancer and liver issues, and NAD+ may interact poorly with other medications. So, it is not something people should do without the guidance of a medical professional.
Like you, Maru, I carry a lot of guilt on my shoulders, whether I deserve it or not. What I have done is found options that DH and I enjoy and that are known to be safe, and I leave the more controversial "remedies" for DH's neurologist to sort through.
For example, there is a ton of research that herbal teas or decaf green teas can reduce inflammation, improve cognition, and help with sleep. While I see no change in cognition or sleep, we get pleasure out of drinking the tea so it was never a waste of our time or money. Another example is that I recently began using aromatherapy (as Lane Simonian suggested above). While I don't see any change in DH's cognition, I personally find the aromatherapy helps to relax me. So again, it was not a waste of time or money.
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Yes, I had read the above report, as well as the study done in China as reported by the NIH. As I interpreted both of them, they offer hope, "looks promising", but as you said, done on mice with genetic engineering mutation. Nowhere does is say how much is safe and how much may lead to cancer.
Thank you for your comments, esp. as regards the panax ginseng and teh essential oils. I will look them up.
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@Maru
Another option is, if you deem something safe enough that it does'nt matter one way or the other, is to put said local child in charge of whatever alternative or complementary treatment and make it happen. While they're doing so, you could veg at a coffee shop with a book or get in some retail therapy.
HB4 -
Harshedbuzz….Now, that is a plan I can go with. :)😄
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Commonly Used Abbreviations
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DW= Dear Wife, Darling Wife
LO = Loved One
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AL = Assisted Living
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