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What is a "good" day for someone with dementia/alzheimers?

PDMSister
PDMSister Member Posts: 2
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I've been told that my brother was diagnosed with Alzheimer's. However, when visiting him, I am not seeing any indication at all.

Does having a good day mean the complete absence of symptoms?

I am very concerned that his wife is exaggerating. I don't live in the same state, so I don't seem him all the time. However, my husband and I have visited several times since she told us about the diagnosis. We spent time with him at all times of the day and evening. He manages day to day routines with no signs. He does the grocery shopping, cooks and manages the finances (pays bills, etc.)

Just looking for a little insight. Thanks!

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  • LBC83
    LBC83 Member Posts: 132
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    edited August 10

    Bottom Line Up Front: A regular day for somebody diagnosed with the Mild Cognitive Impairment version of AD can have zero signs of cognitive decline to the casual observer.

    More Detailed Reply:
    I was diagnosed with AD about a year ago, specifically Mild Cognitive Impairment (MCI). I'd wager that everybody I encounter, on a "good" day or even a "not so great" day, cannot distinguish that I have been diagnoised with MCI. By definition, my cognitive decline is mild. For me, the deficiency is mostly in short term memory. As a practical example, if an aquaintance were to launch into a detailed listing of everything they did on a recent vacation, then they quizzed me on the details, I wouldn't do so great. But in my life, rarely do people quiz me after they provide a data dump of all of their recent activities.

    Both of my parents had dementia, presumably of the Alzheimer's variant (but undiagnosed). Back then, dementia was self-evident as people with this diagnosis had noticable cognitive impairment.

    We are now in a new world of Alzheimer's diagnosis. There are literally hundreds of thousands of people like me in the U.S., diagnosed with MCI (or mild dementia), who are taking one of the anti-amyloid drugs (Leqembi or Kisunla), in an attempt to slow down the progression of the disease.

    Although my wife does our grocery shopping (a task she has always performed), I can cook, I manage finances in Quicken, I do our taxes, I drive the car, I sing in a church choir and play handbells, I participate in fitness classes at the local YMCA.

    Recently, my wife & I flew to Toronto to attend the Alzheimer's Association International Conference (AAIC, along with about 20,000 other people). I learned a lot about how the world of AD is changing. I even got up enough courage to ask a quesiton in a session with about 500 Doctors / PhDs in attendance. The session was about the subcutaneous version of Leqembi that is awaiting FDA approval in August of this year for maintenance dosing (after the initial 18 months of treatment). I'm looking forward to switching to the subcutaneous formulation (no more infusions), and the presentation didn't have details about specfically when the subcutaneous formulation might be available if the FDA approves the request later this month.

    Unfortunatelty, the answer I received was a bit vague. But my point of this story is to illustrate that the world of AD & Dementia is a-changing. People like me can have AD and be "symptom free", unless you pulled out your cell phone and asked me all of the questions in the Montreal Cognitive Assessment tool (MoCA for short, just to pick out one popular cognitive test as an illustration).

  • LBC83
    LBC83 Member Posts: 132
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    To provide some background on my diagnosis process, during my annual physical with my Nurse Practictioner in October 2023, I mentioned to her that I had some concerns about my short-term memory. She asked about 5 questions, such as "Who is the President?" and "Without looking at your watch, what is the approximate time?" (where you have to estimate the time you spent reading while in the waiting room and then the time you were left unattended in the patient exam room). I was able to easily answer these questions, and the NP declared I had normal cognition. I pressed the point, and she referred me to the Cleveland Clinic.

    In January 2024, another nurse practictioner at the Clinic administered the MoCA. I scored one point below what is considered cognitively normal. He ordered lab tests (to rule out other causes of cognitive issues), and MRI (needed to start anti-amyloid medication and also to check for weird things going on in my brain), and a detailed neuropsychological testing (which lasted 3-4 hours). My lab tests results were routine, ditto for the MRI. I scored high in some parts of the detailed neuropsychological testing, average in other parts, and low in the memory area. I then had the option of a lumbar puncture of an amyloid PET to confirm AD. I chose a lumbar puncture, and the results confirmed the AD diagnosis. Soon thereafter I met with a Neurologist who reviewed my record, and we agreed that I would started on Leqembi. My initial Leqembi infusion was in August 2024.

    At the AAIC in Toronto, the Alzheimer's Association presented a summary of new guidelines they have released for Doctors regarding the use of the new blood-based biomarker testing for diagnoising AD. Several speakers noted that this new testing option will have a profound impact on the AD diagnosis process. As noted above, I had the choice between an invasive lumbar puncture or being exposed to radiation via an amyloid PET to confirm my AD diagnosis. The guidelines released by the Alzheimer's Association include an option for blood-baed biomarker testing to be used to confirm an AD diagnosis (*if* the testing has high accuracy, as defined by the Association). The guidelines also discuss using blood-based biomarker testing as a triage test, perhaps to be used by patients who have concerns about cognition (which nobody else recognizes) or maybe a family history of AD but no other symptoms of AD.

    Welcome to the beginning of a new era in Alzheimer's Disease diagnosis & treatment. Although the name is the same, as a practical matter, this disease is light years different from what my parents / grandparents experienced.

  • H1235
    H1235 Member Posts: 1,137
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    The signs can be very subtle. It is about so much more than memory problems.If we go out to eat, mom just orders what I do. The reality is the menu is too confusing. In a conversation she might talk about all the projects she plans to work on (she is not able to do most of them). But gives the impression she is quite capable. Anosognosia is common with dementia and is the inability to recognize their symptoms or limitations. Even if he knows he has dementia he still might not be able to see his symptoms, leading him to believe he is in very very early stages. This can tends to give the person with dementia an air of confidence that makes it difficult to see the truth. Caregivers usually go along with whatever the person with dementia says (to some extent). Explaining to a person with dementia they can’t do something or did something wrong, usually doesn’t go well because of the anosognosia. It’s possible his wife is just giving him the illusion he is doing things and she is actually fixing, rearranging and managing things without him (or you) knowing. This is really tough stuff for the caregiver. I have people in my life that can’t see the issues mom faces with dementia. It has caused me so much grief. What do you think her motive would be to exaggerate symptoms? Is she handling things in a way you disagree. I have read here that even just a diagnosis of dementia is enough to cause some car insurance companies to refuse to payout if there is an accident. My point is if he was diagnosed then this is serious. I would encourage you to trust her. I have attached a copy of a staging tool that might be helpful.

  • JulietteBee
    JulietteBee Member Posts: 199
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    My mom has Vascular Dementia and more days than not, she makes ME second guess her diagnosis. It was not until I had to move her to an IL facility did I see how bad it was. She, like your brother, can often keep it together long enough to deceive a casual visitor. I guarantee that if you spent 3 consecutive days & nights at their house, you will see his diagnosis on full display.

    Your sil has zero reason to lie about his diagnosis UNLESS she was previously diagnosed with Munchaussen by Proxy.🫂

  • PDMSister
    PDMSister Member Posts: 2
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    Thanks for all the comments/insight so far! Very helpful.

    I didn't want to go into all the details, but there actually are reasons my SIL might exaggerate or even lie. She has some long-standing issues that have become more troublesome lately.

    I would not be surprised if my brothere has some very mild cognitive issues. At the very least - age related.

    When she first told me of his diagnosis (and telling me I couldn't tell him I knew), she was describing symptoms that would indicate to me someone quite far along. Examples would be frequently repeating the same questions; not knowing who the current president was, or other prominent people in the news, wandering about in the middle of the night.

    One of the reasons I'm concerned, is that she seems to be experiencing some serious issues of her own. In her last 3 phone calls she was ranting and raving about how he was stealing from her. When I asked her to explain, she got very angry, but finally said he had transferred her social security deposit from checking to savings (he regularly handles the finances). I asked her how this was stealing and she just got angrier. She related something similar in another phone call, saying he again transferred some money and I again asked her what he did with the money. She finally said he paid some household bills. When I asked how that was stealing, she just screamed "it's MY money!".

    She also was threatening to leave because she "couldn't handle" taking care of him anymore.

    There have also been some incidents of violent public outbursts - screaming, throwing chairs around and more.

    I know this sounds like some bizarre soap opera. I'm just trying to understand and I'm worried for my brother's well-being.

  • Pat Coughlin
    Pat Coughlin Member Posts: 28
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    In addition to MCI, my DW has OCD. We have lived in IL for three years, but she still gets very upset if she recall an item I had to discard that we had no room for. It is a no-win situation for me.

  • ARIL
    ARIL Member Posts: 187
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    Oh, I am so sorry, @PDMsister. The “bizarre soap opera” sounds crazily familiar. Yeesh. Too familiar. So please know you are not alone. You are right to be concerned for your brother, and he is lucky to have you checking up on him. Keep doing so. Are there any responsible adult children who can be talked to? Other siblings? Friends, clergy, etc. in his community? This couple needs help and support—together or separately. My heart goes out to you.

  • harshedbuzz
    harshedbuzz Member Posts: 5,598
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    @PDMSister Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

    I've been told that my brother was diagnosed with Alzheimer's. However, when visiting him, I am not seeing any indication at all.

    The earlier stages of MCI and Alzheimer's may not be apparent to others— changes in empathy, executive function, reasoning skills can be a lot more subtle than obvious memory glitches.

    Does having a good day mean the complete absence of symptoms?

    Many times, "a good day" is "showtiming". This is when a PWD can temporarily hold it together just long enough to make their primary caregiver look like a liar.

    When you combine the very subtle changes of early stages with showtiming with the outlook of a loving family member, it's easy to either be fooled or second-guess what you're seeing. I didn't have an easy relationship with my dad and when I saw early signs of mood and cognitive issues along with memory lapses, mom truly couldn't see it, or she explained it away. As a result, he wasn't diagnosed until a full decade after I had my first inkling dad had issues.

    I am very concerned that his wife is exaggerating. I don't live in the same state, so I don't seem him all the time. However, my husband and I have visited several times since she told us about the diagnosis. We spent time with him at all times of the day and evening. He manages day to day routines with no signs. He does the grocery shopping, cooks and manages the finances (pays bills, etc.)

    Is he reporting these activities or have you actually observed him doing them? FWIW, some PWD in early stages would be able to manage much of this. Dad reported all manner of things he was doing in Florida— golf, swimming daily, dinner with the social group— none of it was true. Mom's friends and their neighbors hadn't seen him for several years when I sold their house. He even fooled his doctors with his nattering about investments and handicap.

    It does sound like SIL has some issues herself, but that doesn't mean your brother doesn't as well. Two PWD in a couple is a not uncommon scenario sadly. You are so wise to keep an eye on the situation.

    I would not be surprised if my brothere has some very mild cognitive issues. At the very least - age related.

    There is no such thing. Cognitive loss in the elderly, while common, is not normal. Back when mom was fighting me on getting dad evaluated, any time I pointed out an egregious lapse of judgment or misremembered event, she blew it off as "a normal part of the aging process". It became her mantra and dad's neurologist called her on it.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more