Possible incomplete diagnosis

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brucebowe
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Possible incomplete diagnosis

Postby brucebowe » Mon Apr 05, 2021 3:41 pm

My name is Bruce, my spouse is Louise. Louise was diagnosed with AD about a year ago.Also mentioned in the diagnosis was Capgras Syndrome, although that part of the diagnosis was barely mentioned. She is in treatment by a Bredesen approved doctor. I would call her dementia stable and relative mild.
All through this, she has been subject to a delusion that there is another Bruce(me). But, not quite me. She often sees him around the house or in town. She swears he is not the exact same as me. Usually described as a little shorter, not as smart, and not particular honest. She often worries that he will try to claim part ownership of our house. She used to say she was once married to him, but not so much anymore. She has a low opinion of him. She and I have been very happily married and the love is still there for sure for both of us.
My question or topic is this: Do other spouse-caregivers see this in their loved one? I would love to hear an opinion as to whether it even matters. It used to just drive me crazy, but Louise sees this and tries to control it. I have a sense that the delusion probably hasn't changed very much, but Louise is naturally a kind, loving, and considerate person and keeps it tamped down so as not to worry me.
I've asked her that if we moved away to another state would he still be around and she is sure he would not. That sounds sincere, but admittedly may just be to tell me what I want to hear.
All in all, if we can keep her condition just as it is Right Now, i'd be looking forward to a fairly good rest of our days. BTW, she is almost 73 and I just turned 82 a few days ago. I'll admit to worrying about this a lot.
If anyone has any thoughts on this I would REALLY appreciate hearing them. Thanks in advance to anyone who posts back.
Bruce -- in northern California.

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Re: Possible incomplete diagnosis

Postby NF52 » Mon Apr 05, 2021 6:31 pm

brucebowe wrote:My name is Bruce, my spouse is Louise. Louise was diagnosed with AD about a year ago.Also mentioned in the diagnosis was Capgras Syndrome, although that part of the diagnosis was barely mentioned. She is in treatment by a Bredesen approved doctor. I would call her dementia stable and relative mild.
All through this, she has been subject to a delusion that there is another Bruce(me). But, not quite me. She often sees him around the house or in town. She swears he is not the exact same as me. Usually described as a little shorter, not as smart, and not particular honest. She often worries that he will try to claim part ownership of our house. She used to say she was once married to him, but not so much anymore. She has a low opinion of him. She and I have been very happily married and the love is still there for sure for both of us....
All in all, if we can keep her condition just as it is Right Now, i'd be looking forward to a fairly good rest of our days. BTW, she is almost 73 and I just turned 82 a few days ago. I'll admit to worrying about this a lot.
If anyone has any thoughts on this I would REALLY appreciate hearing them. Thanks in advance to anyone who posts back.
Bruce -- in northern California.
Welcome, Bruce, and a belated Happy Birthday! I am so glad you found this site and asked about Louise's Capgras Syndrome diagnosis and her delusion that there is another Bruce. Her love and happy marriage to you come through in her belief that you are the taller, smarter and honest Bruce! As someone I met last year said "Just because my mother lost some memories doesn't mean she lost her feelings or her personality and those are what we are going to respect and support."

I suspect you've Googled Capgras Syndrome and found that it was originally used to describe a psychiatric disorder in which a person believes that someone, usually a close relative, has been replaced by an imposter. In Louise's case, this is NOT a psychiatric disorder but rather a sign that her brain is having difficulty making sense of visual inputs and using cues to recognize people because of the specific areas of her brain that are affected.

Although Capgras Syndrome is sometimes is seen with Alzheimer's disease, it seems to be more common in Lewy body Dementia (LBD) named for the small mis-folded proteins seen in affected cells. Instead of the amyloid beta protein plaques seen in dementia people with LBD have a different protein (a-synuclein) which is damaging cells. People can have both Alzheimer's disease and Lewy body disease.

Here's an excerpt from. 2017 peer-reviewed article about the possible areas of the brain responsible for the mis-perceptions that people with Capgras and/ore LBD experience (in the article they refer to Dementia with Lewy bodies as DLB; the other common term is LBD (Lewy Body Dementia):
Hallucinations and misperceptions are common in DLB, often associated with Lewy body pathology in the amygdala, parahippocampus and inferior temporal lobe, and may involve disrupted cortical connections between the occipital and temporal lobes (Harding et al., 2002). Prosopagnosia, the inability to recognize faces, is another perceptual disorder common in neurodegenerative disease also associated with occipitotemporal pathology (Barton, 2011)
Capgras syndrome in Dementia with Lewy Bodies

Here's another article that mentions "an unusual case" of a woman who had a delusion that her female caregiver had a duplicate. Like Louise, this woman who was 75, seemed to know that the "duplicate" was not the same as the caregiver. It appears that the cause in her case was possibly a lack of blood flow ("perfusion") to the visual processing areas in the back (posterior) of the brain, along with decreased blood flow to other brain areas important to combining visual information with memory and language to make sense of the world.
Delusions are common features in DLB and, among them, Capgras syndrome represents the most frequent disturbance, characterized by the recurrent and transient belief that a familiar person, often a close family member or caregiver, has been replaced by an identical-looking imposter...We reported on a female patient affected by DLB who presented with an unusual delusion of duplication. Referring to the female professional caregiver engaged by her relatives for her care, the patient constantly described the presence of two different female persons, with a disorder framed in the context of a delusion of duplication...[Tests} suggest a possible dysfunction in an abnormal connectivity between anterior and posterior areas.
An unusual delusion of duplication in a patient affected by Dementia with Lewy bodies

I am not a medical professional, so I say this with a gentle hope that you might benefit from learning more about what is happening with Louise and how to respond to it. It may be that Louise is not worried about the other "Bruce", or it could be that she is somewhat anxious but is trying hard not to worry you and confused about why you can't see Bruce#2. Dr. Jason Karlawish, a neurologist and ethicist who directs the Memory Clinic and Alzheimer's Research at the University of Pennsylvania, calls what spouses often need to use to support their loved ones a "loving deception". That might mean agreeing with Louise that she sees another person who looks shorter, less honest and less smart than you. Assure her that he is not "her Bruce" and remind her that she can always tell which one "looks honest". See if she thinks it makes sense to give him a different name, so you both know that "Wilbur" is NOT Bruce and is not able to bother her in any way. She can point out when she sees "Wilbur" and you can reinforce something like "And he's not going to bother you while your Bruce and the rest of your family and friends are here." You may also want to keep some notes about the times of day or other circumstances when she sees "Wilbur" (after a restless sleep, before bedtime, when she has been watching TV).

I'm assuming that it wasn't your family doctor who gave the diagnosis of Alzheimer's with Capgras a year ago but maybe a neurologist. Most Memory Care Centers would want to see Louise and you back after 6 or 12 months to ask one important question: "How can we help both of you?" If you aren't connected with such a center, there are several in Northern California which are funded by the National Institutes of Aging (part of the NIH) and recognized for their research and care of patients and support to families. Here's a link to the ones in California: Alzheimer's Disease Research Centers: California

The cost of evaluations at such centers is covered by Medicare and going to them doesn't mean you have to stop anything you are doing with your Bredesen-trained doctor. It may give you more "tools" to support Louise and have more good days that you both deserve.

Hugs to a great husband from a 69 year old in Virginia who also has a great husband!
4/4 and still an optimist!

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Re: Possible incomplete diagnosis

Postby NoNotMe » Mon Apr 05, 2021 7:38 pm

Welcome brucebowe,

We are happy you have found our community and thank you for sharing your story. It sounds like a beautiful love story and you are a curious and thoughtful caregiver to your Louise. It's wonderful that you are working with a Bredesen approved doctor!

If you'd like to share your story you might have some responses from similar cases of this type of AZ. Share Our Stories.

I encourage you to have a look around our site. There is so much knowledge, compassion and optimism here! To begin here is a link to PRIMER. This was written by a member of our community who is a doctor. She carries a genetic predisposition for AZ and is very healthy and proactive. It is a useful companion along with our WIKI which details many relevant topics.
This is our How To Guide
which will help you navigate the site and get the most information.

As a attentive caregiver we understand how worrisome this can be and do hope that you are taking care of yourself as well. We are here to assist you and Louise in any way that we can.

In Health,
Erin
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Re: Possible incomplete diagnosis

Postby Julie G » Tue Apr 06, 2021 2:03 pm

Bruce, I'm sure that's both hurtful and confusing. Your post reminded me of behavior that my grandmother displayed several years before she passed away at almost 101 years old. She never had an official diagnosis, other than "Alzheimer's," but before we put her in a memory care facility, she would occasionally tell me that there was a woman caring for her who wasn't very nice and she didn't trust her. At that time, my grandmother's only caregiver was my mother to whom my grandmother remained devoted to until the day she died. Retrospectively, I suspect that this may be similar to what your wife is experiencing. If this is a part of a Lewy Body presentation, it might be helpful to understand that Dr. Bredesen is finding that toxins are a typical contributor. Has your wife's physician looked into toxins, heavy metals, Lyme, Lyme co-infections or mold as a contributor?


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