Last week my husband had his first neuropsych test and the psychiatrist told us he was at the beginning stages of Alzheimer’s. But the next day his neurologist said no, it was amnesiac mild cognitive impairment. Don’t know who to believe. Any thoughts?
My husband was first diagnosed with dementia after his neuropsych testing. We were in NV when I found out the test results from February so went to the VA neurologist in Vegas. After the MRI he named it aMCI. Then we came back to the Portland VA where the neurologist changed it to 'dementia of the Alzheimer's type'. It is not uncommon for them to diagnose aMCI until their is further progression, enough to label it Alzheimer's Disease since there is still no definite test for AD until death.
Mild Cognitive Impairment is when they are impaired but remembers. Amnesic MCI is when they forget. Last time I heard stats, about 50% of aMCI will progress to AD.
Did the doctor put him on any drugs like Aricept (donepezil) or galantimine? If so, be aware that contrary to what doctors like to tell people and the commercials say, none of the drugs have been proven to slow the disease down. My feelings are: how can they say it slows it down when there is no timeline to follow with this disease, each person is different? If they help they allow the person to stay cognitively functioning longer while the disease rages on. Eventually the disease wins over any benefit. People have to make a decision whether to use them or not - more are choosing not to once they know there is no proof it slows it down. The only way to know if it helps is to take them off it and see if they go downhill quickly. I knew little when my husband was diagnosed so the doctor put him on galantamine. After 6 years I took him off and there was no change, so it was not helping any longer if at all. I have learned more from this site since joining in 1/2009 than I ever wanted to know.
My husband is 72, was diagnosed at age 60 in 3/2008. I am 67. I placed him in February. Due to weight loss and irregular heart beat he is on hospice but he is still up and around causing trouble!!
He refuses to take the meds, not surprising sine he refused chemotherapy and radiation for cancer. I’m so scared. I know our lives are about to change forever.
Welcome, Ecarr, to the club nobody wants to join. I don't really have any input about the two diagnoses--but at least you have documentation that something is wrong, and you can continue to get follow up and maybe some treatment. (Although I agree with what Charlotte said about the meds.) And time will probably make the diagnosis more definitive--it's important to know what kind of dementia he has, because it effects the treatment and also gives you some idea of what to expect and how to plan. I'm sure others will be along to greet you and offer some wise counsel. This website isn't as active as it used to be, but there is still a wealth of information in the old postings. And some here have gone on to other Alzheimer spouse groups that are perhaps more active. A good first step, other than the neurologist workup, is to get your estate planning set up properly--make sure you have a durable power of attorney so you can handle the family finances, house and car selling/buying, medical decisions, etc., as his condition progresses over the years. It's probably best to find an estate planning attorney near you who understands these issues as they relate to your local and state laws and regulations. If your husband is still pretty capable it would be good to set these things up while he can still participate and make his wishes known. My husband gave me a durable power of attorney very early on--long before it was ever needed--and outlined very clearly his wishes for end-of-life care. (i.e. no heroics). It was a godsend later when he could not make decisions or take care of himself. As hard as it was, at least I knew I was doing things the way he would have wanted. Anyway, just know that you are not alone and that most "civilians" don't "get it"...but the people here do "get it" and have been helping each other for years. I've received far more help and practical advice here than from formal caregivers out in the community who supposedly were experts on Alzheimers.
Welcome, Ecarr. Like Elizabeth said, to the club no one wants to join. I ditto what Elizabeth said. First, if you don’t have the legal issues taken care of, do it ASAP, while he can still sign his name. Do it for both of you, then it is a matter of course and you might get less resistance from him. If you don’t know where to start, download forms for your state for durable power of attorney, health care power of attorney or whatever it’s called in your state, and a will. You might want to consider a trust. Also, go to, or call your Office on Aging. They should have a list of local attorneys who are certified to work with Medicaid planning. If your husband is a veteran, find an attorney certified to work with VA. Is he’s a vet, have you looked into VA healthcare?
From what you said on the new member thread, it sounds like Alzheimer’s rather than just MCI or just dementia, because of the kinds of tasks he has forgotten how to do. I’m not a doctor though. Just have been around several kinds of dementia. My Uncle has some memory issues, but it has a completely different feeling for me than my husband’s Alzheimer’s.
Elizabeth is also right that there’s lots and lots of info here. Use the search function on these message boards often. I lurked here for years before I said anything cause the active ones were so much farther along than I was. But I don’t have words to express how grateful I am for the ones, like Elizabeth, who keep checking in here and will chime in if you ask a question. I still remember the day I asked something and Elizabeth said, Okay, I’m going to get graphic here.... She went through it step by step in graphic detail. I had her voice in my head every time I did that task and she made it easier every time.
There are no stupid questions here. You won’t find judgement here either.
Also, it’s the holidays. Check out our Christmas Lodge. You might want to start at the beginning. It’s a really wonderful place.
BTW, on the list of discussions, if you tap on “last comment by” you’ll get to the bottom of the discussion. This is crucial on threads like Christmas Lodge.