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There really is no "treatment" for dementias other than ALZ (which has some recently FDA approved medication that can stall or delay progression, but not for very long).
For all other dementias there are therapies (like OT and medications for anxiety and agitation) and strategies (like controlling/simplifying their environment, changing how you interact with them, etc), alternative medicines (unproven to do much) and support/coping for the caregivers.
Only recently are there ANY drugs that MAY help. And the newest, approved by Medicare, is given only in early stages of some dementias. AND HAS SIDE EFFECTS of bleeding in the brain, so not to be taken by everyone, and to be taken understanding the side effects. And moreover, I would say, is not yet proven, nor are all side effects know.
So far, every miracle med to come down the line has not been. Time will tell.
Dementia are indeed different, and a good neuro-psychiatric specialist will guide you, if a type has been diagnosed. There are also foundations and groups everywhere for people dealing with different dementias. Any and everything from dot-org sites to FB groups that experiment and try to learn what works, what doesn't. There is excellent information online from good research groups that predict the trajectory of dementias (which differs markedly by type).
All in all it is hit and miss and each person is, with their type of illness, as individual as their own thumb print. I sure wish you luck. It's a big picture, and takes a lot of time to negotiate.
I have been researching this aggressively lately. My grandmother, on my mother's side, died, they say, of dementia. And now my mother has it and is in LTC. Will I get it? I don't like to rely on pharmaceutical companies for my health. I don't trust them. I also believe in natural and holistic health care whenever possible. I've seen some things work for me that doctors have said there is no cure for. Lately I've been reading up on Dr. Dale Bredesen, MD and reading his book The End of Alzheimer's. He has documented proof of a lifestyle change that can delay or even reverse dementia. He talks mostly about Alzheimer's but mentions all dementia types. I'm still reading it but it makes sense. I plan to be tested for the ApoE4 gene as well as other tests he recommends and although it seems like a lot to change/do, if it will allow me to keep my mind as long as I can keep my body, this is the end goal. I'm still reading this book. https://www.apollohealthco.com/solutions/
I've read Dr. Breslin's book and I am a sceptic ( more accurately, a non-believer). There are dementia like symptoms caused by reversible conditions. Meds interaction, vitamin deficiency, NPH, UTIs, to name a few, can all cause dementia symptoms that can be treated or reversed. The major diseases, however, that cause dementia are not reversable nor do they have any effective long term treatment. I'm sure if there was an effective treatment or lifestyle that would prevent or reverse AD, that information would be known worldwide.
You say your mother has VaD but you're concerned about getting AD and being tested for the APOE4 gene. The APOE4 gene is what's called a risk gene. Having one copy of this gene from a parent increases your RISK of developing AD. Having 2 copies of the gene, one passed from each parent, further increases your risk. Having one or two copies of this gene does not guarantee that you'll develop AD. Not having any APOE4 genes doesn't guarantee you won't develop AD. So I don't know what the benefit is of knowing if you have the gene. In fact, knowing you have the gene might be more detrimental than beneficial. Generally, clinicians don't recommend getting tested for the gene. Having what are called deterministic genes (not APOEs) will cause early onset AD but I think you're beyond the usual age for that.
Finally, saying someone died of dementia is like saying someone died of a headache, when, in fact, they died of an inoperable brain tumor, or aneurism! Diseases cause death, not symptoms. Using dementia as a reason for death distorts the actual reasons for death, i.e., AD, VaD, etc.
My mother (96) has a diagnosis from the (former) PCP of age-related dementia. From observation, I would agree that she has a classic case.
So, from experience (I never wanted) in caring for her, I have learned that less is more.
She only takes a Thyroid pill that she's been on for umpteen years which has no side effects.
If she were sick or in pain, then by all means she should be given whatever will alleviate any suffering and help her.
But I refuse to use anything pharmaceutical to treat her dementia. Her Hospice nurse is constantly pushing the sedatives, but is that fair? To sedate someone else so as to make my life easier? Sadly, that's become an acceptable solution.
I might try the essential oils that @Isthisrealyreal has mentioned. I also play instrumental hymns which has a calming effect on her.
I have been seeing articles from my alternative to western medicine resources for several years about the benefits of diffusing essential oils for memory care, last week my husband read a western medicine research paper that said, "200% increase in memory tests for participants that breathed in natural scent essential oils, from diffusing, for 2 hours daily, compared to no scent."
No specific dementia mentioned, meaning it crosses into all dementia. Well worth trying.
I recommend starting with a floral scent combined with a citrus. Refreshing and smells lovely. You can experiment with scent to find ones you enjoy. My fave is orange with chamomile.
I know you didn't ask about this but, I feel like anything we can implement that is helpful to our loved ones and ourselves, is worth sharing.
Yes. Dementia affects different areas of the brain. You need to discuss w primary care provider. Research through Teepa Snow's website. Gena / Touch Matters
Cherylkos: Perhaps you can garner the most knowledge from your neurologist. Aricept was taken by my sister in law with Alzheimer's without much success.
IMHO, I feel it is critical for everyone, everyone, to research a normal brain vs an Alzheimer's brain and a Dementia brain. Look at the pictures. It is both shocking and horrifying. Parts of the affected brain are gone, or so horribly distorted there is no fixing it. The memory centers have vanished!
Some say it's plaques, some say it's too much alcohol consumption, too much sugar, too little physical exercise, too little brain exercises. None of those explain the diminishing or outright disappearance of parts of the brain! Who knows.... maybe it goes back to a childhood injury, or a genetic issue. Maybe it's environmental. One thing is certain... there is nothing that can be taken or injected, smoked or swallowed, to restore the brain.
There ARE medications that help to calm these patients as they are often agitated. They work pretty well.... very temporarily. All they're doing is calming, not curing. As the diseases progress, these meds are no longer effective.
I don't know how science can fix this. As our population ages, however, this will be seen more and more. People are living longer and the incidence of all kinds of diseases rises. Modern pharma keeps people alive.
I wish there was a treatment for Dementia/Alzheimer's. That would be a miracle. It comes down to the simple fact that nothing can restore a person's brain matter. It's all so tragic.
Even though ALZ is under the Dementia Umbrella, it effects the brain much differently. It actually really can't be diagnosed until after death and an autopsy done. There are actually "tangles" in the brain. I had it discribed to me like this.
Dementia...u know its a stove but forget how to use it. ALZ....you forget its a stove.
Take your index and middle fingers on both hands and make a Tic Tac board with them. This is your brain receptors (I think thats the word, been a while since this was shown to me). Now lift one of your fingers up. This is what happens in an ALZ brain. The receptors break away. When this happens the pathway has been broken so the memory is lost. Its more complicated but thats how it was explained to me.
There are meds that help with cognitively but they eventually no longer work. There are some meds that can be used with some Dementia's and not others. Thats why you initially should find out what type you have.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
There really is no "treatment" for dementias other than ALZ (which has some recently FDA approved medication that can stall or delay progression, but not for very long).
For all other dementias there are therapies (like OT and medications for anxiety and agitation) and strategies (like controlling/simplifying their environment, changing how you interact with them, etc), alternative medicines (unproven to do much) and support/coping for the caregivers.
So far, every miracle med to come down the line has not been. Time will tell.
Dementia are indeed different, and a good neuro-psychiatric specialist will guide you, if a type has been diagnosed. There are also foundations and groups everywhere for people dealing with different dementias. Any and everything from dot-org sites to FB groups that experiment and try to learn what works, what doesn't. There is excellent information online from good research groups that predict the trajectory of dementias (which differs markedly by type).
All in all it is hit and miss and each person is, with their type of illness, as individual as their own thumb print. I sure wish you luck. It's a big picture, and takes a lot of time to negotiate.
https://www.apollohealthco.com/solutions/
You say your mother has VaD but you're concerned about getting AD and being tested for the APOE4 gene. The APOE4 gene is what's called a risk gene. Having one copy of this gene from a parent increases your RISK of developing AD. Having 2 copies of the gene, one passed from each parent, further increases your risk. Having one or two copies of this gene does not guarantee that you'll develop AD. Not having any APOE4 genes doesn't guarantee you won't develop AD. So I don't know what the benefit is of knowing if you have the gene. In fact, knowing you have the gene might be more detrimental than beneficial. Generally, clinicians don't recommend getting tested for the gene. Having what are called deterministic genes (not APOEs) will cause early onset AD but I think you're beyond the usual age for that.
Finally, saying someone died of dementia is like saying someone died of a headache, when, in fact, they died of an inoperable brain tumor, or aneurism! Diseases cause death, not symptoms. Using dementia as a reason for death distorts the actual reasons for death, i.e., AD, VaD, etc.
So, from experience (I never wanted) in caring for her, I have learned that less is more.
She only takes a Thyroid pill that she's been on for umpteen years which has no side effects.
If she were sick or in pain, then by all means she should be given whatever will alleviate any suffering and help her.
But I refuse to use anything pharmaceutical to treat her dementia. Her Hospice nurse is constantly pushing the sedatives, but is that fair? To sedate someone else so as to make my life easier? Sadly, that's become an acceptable solution.
I might try the essential oils that @Isthisrealyreal has mentioned. I also play instrumental hymns which has a calming effect on her.
Peace
No specific dementia mentioned, meaning it crosses into all dementia. Well worth trying.
I recommend starting with a floral scent combined with a citrus. Refreshing and smells lovely. You can experiment with scent to find ones you enjoy. My fave is orange with chamomile.
I know you didn't ask about this but, I feel like anything we can implement that is helpful to our loved ones and ourselves, is worth sharing.
There are some being tested but as before they may not work.
You need to discuss w primary care provider.
Research through Teepa Snow's website.
Gena / Touch Matters
Some say it's plaques, some say it's too much alcohol consumption, too much sugar, too little physical exercise, too little brain exercises. None of those explain the diminishing or outright disappearance of parts of the brain! Who knows.... maybe it goes back to a childhood injury, or a genetic issue. Maybe it's environmental. One thing is certain... there is nothing that can be taken or injected, smoked or swallowed, to restore the brain.
There ARE medications that help to calm these patients as they are often agitated. They work pretty well.... very temporarily. All they're doing is calming, not curing. As the diseases progress, these meds are no longer effective.
I don't know how science can fix this. As our population ages, however, this will be seen more and more. People are living longer and the incidence of all kinds of diseases rises. Modern pharma keeps people alive.
I wish there was a treatment for Dementia/Alzheimer's. That would be a miracle. It comes down to the simple fact that nothing can restore a person's brain matter. It's all so tragic.
I had it discribed to me like this.
Dementia...u know its a stove but forget how to use it.
ALZ....you forget its a stove.
Take your index and middle fingers on both hands and make a Tic Tac board with them. This is your brain receptors (I think thats the word, been a while since this was shown to me). Now lift one of your fingers up. This is what happens in an ALZ brain. The receptors break away. When this happens the pathway has been broken so the memory is lost. Its more complicated but thats how it was explained to me.
There are meds that help with cognitively but they eventually no longer work. There are some meds that can be used with some Dementia's and not others. Thats why you initially should find out what type you have.
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