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
[email protected] 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.
*If I am consenting on behalf of someone else, I have the proper authorization to do so. By clicking Get My Results, you agree to our
Privacy Policy. You also consent to receive calls and texts, which may be autodialed, from us and our customer communities. Your consent is not a condition to using our service. Please visit our
Terms of Use. for information about our privacy practices.
You're acting on behalf of your sister, in her best interests, with power of attorney or health proxy, yes?
Then it is up to you to take the decision which, to the best of your belief, is the decision she would have taken for herself if offered this option when she was able to understand it. Did you and she ever discuss medicine, drugs, treatment, the ethics of the thing, your opinions (both of you, I mean) on the subject? What do you think her feelings were about this kind of research? Was she risk averse by nature, or ready to take a chance?
If you believe she would have gone with the trial for whatever reasons - from a desire to contribute to the advancement of medicine to a Hail Mary pass - *then* your next step is to insist that the clinician explain the risks and benefits, in the usual way, before you agree to enter your sister (your protegée, after all) in this trial. You will also want to compare and contrast the risks and benefits with those associated with Aricept.
The easiest way might be to do one of those features charts, like when you're comparing washing machines. I know this sounds utilitarian but at least it lets you see the information you're trying to weigh up.
When you're entering a trial like this, you have to look at the risks on the assumption that you *will* receive the active drug. The placebo definitely can't do you any active harm, even if that's scant comfort; so if you assume you'll get the real one at least you can't have underestimated the risks.
P.S. She decided not to go with the clinical trial after all.
As you know, Aricept won't cure dementia. The way I understand it, Aricept just masks symptoms. Personally, if she wants to do the study I would say do the study.
I was diagnosed with early onset ALZ four years ago at the age of 57. I've been a lifelong serious reader. When I was diagnosed, I hadn't been able to read more than 2-3 pages a day let alone remember anything I read. My Neuro Dr. put me on Aricept and told me it could take as long as 6 mos before it might make a difference. Almost six mos from when I started it, I began to be able to read and focus on things in a way that I hadn't been able to for longer than I could remember. About two years ago Donepezil was added to the list of drugs I take. I am also Type II Diabetic, and I have High Blood Pressure, and Neuropathy.
.
I have had some friends from my Forgetful Friends Group, who have participated in trials, and they've done nothing to help them. Keep in mind, I am writing from only the patients point of view and what I know from others. I'd go the route of Aricept. Good luck.
How is she being cared for? If at home, does she have enough caregivers to provide 24/7 support or would the study provide that service as part of the agreement.
Part of the criteria was that he was to have been on Aricept for at least 3 months and continue it while in the study.
I honestly think he was given the drug in the study (that was never confirmed as the people administering the drug did not know) I think it probably helped him as he was able to do many things far longer than I expected. But I also think he had Vascular Dementia and the little strokes would lead to a more drastic slide than you would expect with AD.
Personally I think a clinical trial is worth a shot.
Would it be any different if she were not diagnosed until next March? Would 6 months make a difference? Maybe in 6 months the clinical trial would slow the progress.
the big question also is..does Aricept work on everyone? When I took my Husband off it I did not notice a difference at all. (but that my have been because he was in a later stage at that point anyway)
Actually a better question is...How much does your sister understand? have you explained both options to her and does she have any input in this decision?
now 3 years later he’s on memantine patch and found it helpful too for about 8 months. There’s no way to know for sure cause it’s progressive disease and can’t reverse it ...and works differently in everyone ...but the earlier they start the
better and longer they work.
clinical trials just that ...and you’re not sure if they’re on the placebo???
good luck whatever you choose.
Good luck to you and your sister.
https://blogs.sciencemag.org/pipeline/archives/2018/10/25/more-on-ban2401-unfortunately
https://www.biopharmadive.com/news/aducanumab-biogen-alzheimers-drug-ctad-presentation/568583/
If you start looking up things you will find a lot of conflicting information. Bottom line it is a risk taking any kind of experimental drug, and you are dealing with immune system issues.
You also have to remember everybody's Alzheimer's disease (AD) affects them differently, including rate of spread. So even the ones injected with this new "miracle drug" has questionable results.
Some people with AD will have it for over a decade before dying, while others it can kill them within 2 years. My mom had AD for 15 years. She died age 90. She was never on any kind of psychotropics or drugs other than her insulin and lopressor. I walked her in the park everyday for 5 years. She was bedridden for only 3 months due to not being able to focus on the task of getting up and walking. Ironically Alzheimer's did not kill her, but other natural causes. Still she died a very peaceful death, and hospice never had to give her any kind of narcotics to the end.
Let your sister decide what to do. Age 61 is very young which means the course of the disease will tend to be aggressive. Make certain she gets a second opinion of her diagnosis. Other things can cause symptoms of AD such as DEPRESSION and even psychotropic drugs. Doctors DO make mistakes. So that's why a second opinion is important especially embarking on some experimental drug.
Make certain your sister has a second opinion.
Also, there are NO means of diagnosing AD -- only with symptoms. There is no blood test and only brain tissue sample will show anything. MRI will not show anything other than "age related changes" unless they are really in very advanced stages.
Sorry this response is so long but felt it might help Since we have been there. Prayers for you and whatever decision you make.
I was in a study for breast cancer that I requested to be in. It was a pretty good deal because all I had to do was take the study med for a couple of months before I went over to the protocol drugs for the type of BC I had. I had no reservations in trying it. This one that you're talking about is probably still in the early stages. Even if you opt out of this study, tell the doctor you are interested in future studies that would ensure a newer drug is tested in the patients instead of the placebo for 1/2 the group.
Also, ask what the worse that could happen doing the trial.
My sister had Cancer and the regular chemo and radiation wasn't working and they gave her just a few months to live and she accepted a Trial and she's still alive and the cancer is in remission and that's been 2 yrs now. Prayers
Frankly, I wouldn't agree to anything of this nature. If I did participate in a drug trial, I'd insist on reserving my right to terminate at will. (I probably wouldn't be qualified then, but I would never allow someone to supercede my rights to making my own decisions.)
There are a lot of articles on BAN2401:
https://www.google.com/search?source=hp&ei=zFdlX5e_Lqqw5wKrvLaoBQ&q=ban2401&oq=BAN2401&gs_lcp=CgZwc3ktYWIQARgAMgIIADICCAAyAggAMgIIADICCAAyAggAMgIIADICCAAyAggAMgIIAFCkBVikBWCfHGgAcAB4AIABSIgBSJIBATGYAQCgAQKgAQGqAQdnd3Mtd2l6&sclient=psy-ab#spf=1600477136510
I would read at least some of them to learn more about this drug.
I did find one article with a slightly different focus. I think it's worth reading:
https://www.fiercebiotech.com/biotech/one-day-after-aducanumab-disaster-eisai-kick-starts-backup-alzheimer-s-drug-trial
My mom was considered for a medical trial, she wanted to participate but was unable to because she had the APO€ 14 gene. There are qualifiers for any trial. Have you had her screened?
But in any case, what you’re asking is so important that if I were you, I’d seek a second medical opinion.
I myself would not do it. But others may feel differently. Does your Mom have any input? Is she aware of her diagnosis? Would she have an opinion. Remember, she is getting a drug in a stage of development that leads them to believe it is safe to study in large numbers, but until it is approved it is still experimental.
Good luck with the decision.