Newly Diagnosed and I have questions

parkersnana

Hello this is my first time posting and I have questions. Of course I didn't think of these while we were in the doctors office today and won't be back until Oct. Anyways, my mom was just diagnosed with Alzheimer's today and was told to take 2 different medications. They are memantine and donepezil. My first question is has anyone been told to take these pills before and have you noticed any difference in taking them?

My cousin told me that low testosterone may be a factor in the start of the disease. Has anyone heard of this before?

Also has anyone heard that any kind of infections can make the progression of Alzheimer's go faster?

Thank you in advance for not only reading this but for taking the time to answer my questions. Have a good day.

JulietteBee

I am so sorry to hear of your mom's diagnosis. My mom was diagnosed with Dementia in December. I finally got an MRI authorized to help differentiate what specific type she has.

In December she was prescribed Aricept (Donepezil). It had some listed side effects that she was very concerned about, so she never took it.

Her doctor then put her on Memantine. She took it for about 2 5 weeks and stopped. She blamed her pre-existing dizziness on it. Since then, she is not on any meds as she now claims she is going to go "natural."

I've told her of a few natural items to try. She has not started on them either. I honestly do not believe she plans to address the issue, whether via pharmaceuticals or natural.

I am an RN but have never heard the theory of low testosterone or infections.

Btw, I thought I observed my mom having more lucid days while on the Memantine. She swears she saw no difference.

SDianeL

Sorry about your Mom’s diagnosis My husband was on Memantine but I saw no difference. Since he had no side effects, I left him on it. It’s very difficult to know if those medications help because of the way the disease progresses. If your Mom is not having side effects it won’t hurt to leave her on them. Never heard anything about testosterone. Infections can mimic or worsen Alzheimer’s. UTI’s are common. Most doctors rule out other things before they give you a definitive diagnosis of Alzheimer’s.

harshedbuzz

@parkersnana

I can't speak to those medications personally, as we didn't use either, but it seems to be a mixed bag. The oral medications do not slow the actual disease progression, but some people do seem to function better when they take them. Sometimes a caregiver will assume they're not doing much, stop the meds and have their LO progress in stage overnight. Some folks see not difference at all and a fair percentage cannot tolerate the side effects.

I don't know that infection can cause the rate of the organic process of brain death to increase, but infections can play havoc with a PWD's ability to function. This is often temporary and the PWD will return to their previous baseline after treatment. Hospitalizations and fractures can as well. FWIW, this phenomenon is not limited to those with dementia, healthy elderly can have an abrupt change of mental status from something like a UTI.

There is evidence that low T can be a risk factor for dementia in men— especially those over 80.

HB

H1235

Welcome! I know this is off topic, but it’s so important. Have you seen an elder law attorney. Even if there is already a will, she should also consider a living will and a durable power of attorney is really a must.

parkersnana

https://alzconnected.org/discussion/comment/247741#Comment_247741

Thank you for responding. My mom is scheduled for an MRI at the end of the month. Part of our situation is that she has had Multiple Sclerosis for over 35 years. I had thought that they were just checking that. I didn't know that it can tell you a specific type.

Thankfully she has been taking the Memantine for a little while now. The Donepezil is the new one. The Dr started her one a low dose so I'm hoping for no side effects.

What and where can you get trusted information about "natural items"? I may be able to get her to try them.

parkersnana

https://alzconnected.org/discussion/comment/247743#Comment_247743

Thank you for responding. Unfortunately, I do believe she was diagnosed correctly. She has Multiple and has always had a bad memory due to this. But for the last year her memory has gone to not only long term but very very short term loss. If she can remember something that was just said to her or her own thoughts longer then 30 seconds we are doing really good.

parkersnana

https://alzconnected.org/discussion/comment/247746#Comment_247746

Thank you for responding. Is there anything that you have used to help. Like anything organic or healthy types of foods. Thank you for your info regarding low T as well.

parkersnana

https://alzconnected.org/discussion/comment/247781#Comment_247781

Thank you for responding. I appreciate the off topic comment as this is something my husband and I have been talking to my mom about for a few months now. She has these papers but I feel that they need to be updated. Still a work in progress but thankfully she is seeing that this is something that needs to be addressed now. So she is setting us a meeting with my sisters and I to discuss everything.

harshedbuzz

https://alzconnected.org/discussion/comment/247828#Comment_247828

There really isn't much in the way of treatment to slow the disease process. The medication she's on is meant to help people function a bit better but it doesn't nothing to slow the disease process running in the background. There are new infusion medications that can slow progress for about a year in the very early stages, but they don't seem to work as well for the elderly, women or POC. They're also expensive and require office visits for the infusions and follow up imaging to look for brain bleeds which are a side effect.

In terms to things you can do at home, best practices include the MIND or Mediterranean Diet, regular exercise and social engagement. It can be hard to foster these things in some PWD as common symptoms of dementia are a craving of sweets and snack foods, inertia and apathy about activities. Some doctors will also suggest puzzles and crosswords but I've never seen data that shows it's an effective strategy.

HB

ARIL

So sorry this has arisen for your family. It is a hard road, but you can always come here for understanding.

My LO has taken Donepezil for a couple of years and does not have side effects. The disease progresses anyway, but I don’t think this is causing any harm and might be helping—not really possible to know for sure.

Infections, illnesses, hospitalizations—all of these things have brought on more difficult symptoms, which tend to go away when the crisis is over and some time passes. But this has been a story of overall, slow decline.

At the same time, there have been and still are plenty of moments of connection—of joy, laughter, love. I have learned to notice those when they happen, even when they are fleeting, because I can hang on to them, and they help me through hard days.

And yes, the legal documents are critical.

JulietteBee

https://alzconnected.org/discussion/comment/247826#Comment_247826

Yes, an MRI can help them differentiate the types. It is based on what area of the brain shows atrophy. My mom's MRI is on Thursday. I am eagerly looking forward to hearing what she has and then being able to get a more specialized treatment plan. Also, it will sadly help me to know what lies ahead of me.

As far as naturopathy, I heard about and wanted her to explore what Dr. Neil Nedley, M.D. proposes. He formulated and patented a pill that can improve memory and increase brain function.

I also heard about making Rosemary (the herb) tea. Mom has not done anything. I've even suggested mental stimulation from being involved in the activities offered at her IL facility.

I moved her last summer. She was eagerly participating and learning. Over the last 1-1.5 months, she has lost interest in going downstairs to do anything, all while her executive function is shot to bits.

H1235

juliettebee,

We want to do everything we can for our lo. To make sure they are getting the best of care. That absolutely everything that can be done is being done. Mom has vascular dementia, there is no medication only the suggestion of exercise and a healthy diet. It did not take long for me to realize that because she doesn’t understand the importance of doing these things she refuses. She is diabetic-but doesn’t follow the diet, has edema- refuses compression socks and doesn’t elevate legs, thinks the exercise class at Al is ridiculous, eczema that’s cracking and bleeding- refuses prescription cream. She is having trouble with her cpap machine now and I don’t expect she will use that much longer. She is only stage 4. I could go on and on. I have to remind myself that dementia is terminal. Pushing her to comply with things that may give her a better quality of life or even extend her life, when she doesn’t want to do them is almost impossible. I’m sorry, but don’t get your hopes up for any kind of real treatment.

JulietteBee

https://alzconnected.org/discussion/comment/247905#Comment_247905

I guess that is why her previous pcp was not willing to test her. Then when he did, he didn't seem to want to explore further; saying "No" to a neuro consult and "No" to an MRI.

She has not taken the Aricept. She stopped the Memantine. I knew there was no cure. I had hoped there may be pills available based on the various type of Dementia the MRI reveals she has. I would then be able to coax/convince her to take them, knowing they were specific to her cause and possibly slow further progression.😭

SusanB-dil

MIL uses both. Taking them does help to a certain extent. They help some, and the memantine was even increased just a bit maybe 6-7 months ago. They more helped with mood swings and agitation than they did for any progression. Each of our LO's is so different, and that includes getting the best combo of meds.

Colacho10

I'm so sorry to hear about your mom's diagnosis. I know how overwhelming and emotional that day can be.

To try and answer your questions:

Memantine and Donepezil:

From what I know, they are very commonly prescribed for Alzheimer's. Donepezil is often given in the earlier stages to help with memory and thinking, and memantine is often added as the disease progresses. It's a good idea to keep a little journal of your mom's symptoms and mood so you can track if you see any changes, good or bad.

Low Testosterone:

I've seen this mentioned in articles and research discussions. From what I understand, there's ongoing research into the hormonal connections to Alzheimer's, including testosterone in men and estrogen in women. It's one of many factors scientists are looking at, but I don't think it's considered a direct cause.

Infections:

Absolutely. This is a huge one for caregivers to watch out for. A UTI is a very common culprit, but also a cold, the flu, or even a dental infection can cause a sudden worsening of confusion and other Alzheimer's symptoms.

It's something to be very vigilant about. If you ever notice a sudden, sharp decline in your mom's abilities, an infection should be one of the first things you get checked out.

Hope that helps.