Last Friday I visited the Montgomery Hospice in nearby Maryland to speak to a group of fifty staff and volunteers who work with patients with Alzheimer’s disease or some other dementia. For twenty minutes I described my history, my equanimity (so far) in the face of the disease, and my paradoxical joy in the call I’ve been given around Alzheimer’s.
I was surprised (again) by the energy and intensity of the questions. In a past career of public speaking, I’ve presented about poverty, or American politics and economics, or matters of faith. Usually the questions go on for about ten minutes and then peter out. But this past Friday, the questions were still coming, some with considerable intensity when after a full hour and a half together, time ran out. Something similar has happened in every such conversation so far.
A most common question is some version of “I may be having symptoms; should I get tested for cognitive impairment?” Most of the time the underlying question is probably, “Do I really want to know?” Alzheimer’s disease seems so frightening and there’s no treatment, anyway, so what’s the use of dealing with it before I have to?
I’m beginning to believe strongly that, if you’re having symptoms (other than a mild slowing in your thinking or some difficulty in remembering names and faces, which may be normal), it’s important to get tested and find out whether you have some cognitive impairment … whether you want to or not.
The most important reason is that not all cognitive impairments are Alzheimer’s or on their way to becoming Alzheimer’s. Many are due to some other disease that is treatable or even reversible. While not curable, vascular dementia (due to small strokes) can be stabilized by stopping cigarette smoking, lowering cholesterol, reducing high blood pressure and controlling diabetes. Normal pressure hydrocephalus can sometimes be treated. And some other dementias—such as Parkinson’s disease, Lewy Body disease, Frontotemporal dementia, Pick’s disease and other rarer forms—will have courses different from Alzheimer’s that might be helpful to know about.
And there are some causes of dementia that can actually be cured:
- thyroid disease,
- over-medication or side effects from even appropriate doses of certain medications,
- some vitamin deficiencies and
- abuse of alcohol.
The second reason for knowing is that it’s important to be able to plan for the future with spouse, children and close friends. These people will need to know how you want to be treated when you can no longer guide them. A related reason is that financial planning needs to be done early, especially planning for long-term care.
There are a number of other reasons to get tested that are more individual. In my own case, worrying is always worse than knowing. I’d much rather be dealing with a known enemy than wondering whether he might be lurking around the corner. I also want time to prepare friends and family to move through this journey with me, to alert them to what’s coming, so that we can avoid some of the stigma and embarrassment that too often accompanies this disease. If I’m noticing symptoms, friends and family are going to notice them sooner or later, too … whether I get tested or not. If I get tested and everybody knows, we can work consciously on our changing relationships rather than feel embarrassment and pretend that nothing is wrong.
The question becomes much more difficult when the patient himself is mentally incapable of recognizing his symptoms (anosognosia) or is in psychological denial. In the former case, he may be willing to trust his spouse or children to go for a neurological exam, anyway. The person in psychological denial may be the most difficult. In such cases the better part of valor may be retreat.
[In early August I mentioned I would have a neuropsychological evaluation at the end of the month. I had the evaluation two weeks ago but am still awaiting the results. I suspect that the tension I’m feeling as I await results may unfortunately be keeping my well of material from which I usually draw pretty dry; hence, no post in the past week. I expect I’ll have lots to say when I know more about what’s going on.]
It is interesting, if I understand "Contented Dementia", their approach to anosognosia is to avoid any mention of disability or memory loss which allows the patient to stay contented.ReplyDelete
I note that the testing you discuss in this post is for cognitive disabilities and not imaging to look for tangles and plaques. Although I can't cite the source I believe that 30% of autopsies that find tangles and plaques are in patients who tested cognitively normal.
John S, Sun City, AZ
Thanks for writing. I would encourage you to read Contented Dementia. My brief summaries of the book have been far too sketchy to do justice to its theories and practice. What the authors are trying to suggest is that we can't respond appropriately to the demented person until we really get inside their world and can better understand what kind of communication will help. Yes, in the case of a person who simply has no mental ability to recognize his disability (anosognosia), there would be no sense or usefulness in pushing the patient to recognize symptoms. In other cases, it might be quite appropriate.Delete
In this post, my suggestion to get tested refers only to the basic evaluation by a qualified, trained professional. Depending on the results of that evaluation, the doctor may order further testing including the scan for amyloid plaques and spinal tap for evidence of the tau protein. But these latter tests are still experimental and we don't know enough about their reliability of just what they mean for them to be worth the cost for routine use.
There are many issues around the diagnosis that I don't refer to in this post. I'm just suggesting that the first step be taken.
David, another great post. I agree with your reasons why testing is a good idea, and I shared many of the same reasons in the appendices of my book "Inside the Dementia Epidemic: A Daughter's Memoir." Will share your post widely.ReplyDelete
My mother has significant o loses as well as anger issues. I have appointment with the neurologist next week. Today she called and told me this is demoralizing and she is like every other 85 yr old. She said she would leave if I came to take her to the doctor. Of couse, she may forget by next week. Friends are begging me to get her help. Do you have any suggestions? Do I go forward?ReplyDelete
I'm afraid I have so little experience with actually working with folks like your mother that you should take any advice from me with a grain of salt. It's hard to know from your description whether she's in psychological denial or really doesn't have the mental capacity to see her disability. I would think that if you can pressure her to go to the neurologist (even if she doesn't want to go), it's going to be helpful to you to know what's going on and to rule out any other issues. If the neurologist believes she has cognitive impairment and she's unwilling to believe it, then YOU are going to be the one who needs support and assistance. Knowing her condition more precisely may help you get started seeking out finding a support group or telling your friends or getting help from children or whatever. So, for what it's worth, I would certainly go forward.Delete
David, I recently wrote a piece on early diagnosis and discussed how much my opinion has shifted over the past year or so. There was a time when I was certain I wouldn't want to know; but, as time has passed, I've done a complete '180.' To me, the burden of constantly worrying about what might be can be agonizing. If that day comes, I'd rather know what I'm facing early enough to make appropriate decisions, get involved in a clinical trial, and form a strong circle of support. Thanks for this thought-provoking post and all you're doing to raise awareness!ReplyDelete
David, you wrote that you haven't been posting because you are distracted -- wondering about the results the August tests will show. But that is exactly the sort of thing your readers want to hear -- your thoughts and worries. At least, this reader wants to hear what is concerning you. Of course, every person's dementia is unique; still, I am learning from this journey of yours.ReplyDelete
Don't neglect writing because you are not inspired. Not every post has to be an amazing gem (though you have spoiled me because so many of yours are real jewels). Write what you are feeling -- that's more than helpful.
You've convinced me. Thanks. Check out the next post.Delete
Hi David..I am so thankful I found your blog. My dad is 82 years old and I think he may be getting or has dementia. He is forgetting things, becomes angry over little things, and has been having bad dreams. You mentioned to be tested for Cognitive Impairment. He does see a neurologist so I could ask him about it. What exactly do for this test? I feel so helpless and want to help him in anyway I can. Thanks in advance for your time and help with this matter.ReplyDelete
The screening test for cognitive impairment is a simple 30-question test that the neurologist administers that takes perhaps 10 minutes.Delete