Does anyone have experience with being diagnosed with Alzheimer's?

There are different treatments for vascular dementia vs alzheimer's dementia. There are also different treatments for stroke activity vs dementia. If this is her only issue and she is not dealing with additional health problems like cancer etc. and if this was my loved one I would go forward with the tests so that the treatment could be adjusted correctly.

If you were simply testing between two illnesses with the same treatments, I would say that would be silly because the testing wouldn't change the treatment.

Angel

Well, your mom has dementia. So now the question is, what type? And are further tests worth it to find out?

First, no dementia is curable at this point.

There are "treatments" to manage the symptoms. Knowing what type of dementia it is can help the doctors put together the most effective treatment plan. But really, it is a matter of managing the symptoms no matter what type of dementia it is.

You mention the parkinson-like symptoms. That makes me think of Lewy Body Dementia. If it happens to be that, there are some drugs that definitely should NOT be given. If it is LBD it would be good to know. Or you can simply avoid those drugs to be on the safe side.

Sigh. It is hard to know what is worthwhile. Talk to the AL doctor who wants additional tests. Find out what the cost $$ would be, what the tests are like, if there are ways to keep your loved one calm during the tests, and what, exactly, the doctor thinks the advantage would be of knowing the type of dementia.

From personal experience, I am very very glad I knew what type of dementia my husband had. I joined a support group of other caregivers who were dealing with similar things. It really helped a lot in knowing what to expect and in sorting out what was probably dementia and what might be of investigating further.

You have some very valid questions. Get input from the doctor. I don't think you can make a wrong decision.

How old is she and how many years do you think she has remaining to her?

If she is having vascular problems it could lead to a full blown stroke, or she may have other undiagnosed vascular problems (heart, kidneys, peripheral arteries). If she still has a pretty good quality of life and her dementia is not advanced I think it would be worth it to find the answers to those questions as there are treatments available to control the vascular disease. VaDementia is said to progress in a step like fashion because each larger cerebral event can cause a sudden decline, then a plateau until the next event. What they never tell you is that the damage from all the tiny, perhaps unnoticed TIAs is cumulative.
My mom also has parkinson's or parkinsonism (unverified), I believe as a side effect of the damage caused by the TIAs or stroke.

Very good information above.

My cousin was only in her early 60's when she got full blown dementia, but her GP immediately thought it was vascular. That was confirmed after I got her a consult with a Neurologist and had the MRI done. Of course, the meds brought her blood sugar, cholesterol and blood pressure under control, but she is still declining and has from the start. There appears to be no way to prevent the progression, despite the good health care that she now is getting. I'm not sure that knowing what exactly is causing it is that important, but I am able to look at the life expectancy. If you know what is causing it, you might explore more details or statistics about that particular illness. Some have longer life expectantcies than others.

Thank you all for these answers...very helpful! She is 75 yrs old, but the last 6 months have been a landslide, between losing about 70pounds, forgetting things, depression, and moving into an assisted living facility. She's only been there a month and now they are talking about moving her into the "lockdown" memory ward so she can get extra attention. It's been a whole lot of change for her, and she has really lost the will to live/fight. She is confused what is happening to her, no matter how I explain it, and hates the fact she had to move away from her home and friends into a facility, even though she knows she can no longer take care of herself. I know she is in a very good place, has a very good doctor, but if she's not happy and hates her life, should we look at ways at extending it. Forget about costs, just that she is so unhappy that she can't do the things she loved doing. Does that make sense? If finding out that is was vascular and her quality of life could improve and she could do things independently again, or it would keep her out of the memory care unit for a couple more years then it would be worth it, but the doctor (and you all) both confirm that their state of mind won't really improve, they just might find ways to keep it from sliding faster.

Why would she need to be in the memory ward? Does she wander? (That is the purpose of the lock-down.) Does her behavior disturb other residents? Could you pay for some extra services right where she is? For example, does she need someone to accompany her to meals? To encourage her to participate in activities? I don't know who "they" are, but have them explain their reasoning about moving her at this time.

My husband's journey with LBD lasted ten years. We didn't want anything to extend his life. He even insisted on having his defibrillator removed! His neurologist was all about quality of life. Helping him sleep through the night, reducing his agitation, keeping him away during the day, reducing his fall risks, dealing with depression -- all these were treatment options for maximizing quality of life. None of them were to extend his life.

Keeping your mom where she is or moving her to memory care is a QoL issue.

My husbands first six months to a year were the worst QoL. His dementia was sudden onset and he really dived in at the deep end. Then he plateaued with early-stage symptoms and had a reasonable quality of life for about 8 years. His final year was worse physically but not as bad as his first year.

I hear you about not trying to extend mom's life. Absolutely. And I agree. But a treatment plan should be about quality of life. Maybe (and maybe not) knowing as much as you can about the nature of her brain damage will allow a better care plan to be drawn up.

That's quite sad AbbyCody. It sounds very similar to my cousin. She also had rapid decline, weight loss, no short term memory and fading long term. She also first went into a regular Assisted Living, but soon began to decline (wander, became incontinent, unable to do anything for herself except eat) and needed to transfer to a Secure Memory Care facility. She immediately seemed to feel more comfortable there with other people who were more on her level. She seems content there, but continues to decline in her condition. Memory Care is not necessarily a bad thing. The care is more focused and you can worry less.

Are you her Health Care Power of Attorney? I'd determine what he wishes were and research Palliative Care to see if that is something she might be interested in. It focuses on keeping the patient comfortable for the remainder of their days. It may include medications to treat things like blood sugar, but it's primarily for keeping the patient comfortable.

Talking to the doctor who is familiar with dementia would likely help. Some doctors aren't that up on it though. Make sure the one you consult is. You can also read a lot about dementia. From what I've learned, the dementia patient is not going to recover or return to normal. I've never heard of anyone returning to their normal life once dementia is at a certain stage.

There are some meds for some kinds of illnesses like Alzheimers, but they have their limitations. I've never been impressed with anything that I have heard. Others may have had a different experience, but they are not a cure. I'd do my research and read what many others may say about it here and elsewhere.

LOL ... that is keeping him awake during the day ...