Not accepting diagnosis

MNGirl2 · December 2023

I'm hoping to get some advice on how to best care for my mother (76) who is not accepting her dementia diagnosis. She was given a preliminary dementia diagnosis in Sept 2021 while in the hospital with COVID. My sister and I had suspected for quite some time prior to this that she had dementia, but she is incredibly stubborn and refused to speak to her dr about it as she truly believes she's fine. She's always been an incredibly healthy person, and for some reason she views dementia like any other illness, so in her mind, she's not sick because she "doesn't get sick". My sister and I, along with our father, have made many attempts to persuade my mom to follow up on her diagnosis, but this usually ends with her screaming at one or all of us. She's become very mean and angry in the past couple of years, with my dad bearing the brunt of this, so he is gun-shy about saying anything further to her. Her grandchildren are spending less and less time with her because she's not a very nice person to be around anymore. And there's only so much explaining you can do to get them to understand that it's the disease that makes grandma the way that she is. I hate watching my mother turn into this person, straining her relationships with those closest to her. Is there anything we as her family can do to get her to accept her diagnosis and get help? I feel so helpless just sitting back and watching this disease take over.

M1 · December 2023

Short answer, no, and most people here would tell you to quit discussing it with her. I thought the same thing early in our journey and thought that hearing a diagnosis of dementia from her doctor would cause my partner to have an "aha" moment of understanding that would lead to her being compliant and deferring to me for decision making. Nope.

Read about anosognosia, it's a feature of the illness which renders her unable to perceive her deficits. It's not denial or stubbornness. You have to find work arounds for taking care of her and keeping her safe. Make sure to do your legal legwork, one of you needs to have power of attorney for finances and healthcare decisions, and you need to think ahead about how you would finance memory care should she need it. A certified elder law attorney can help with these issues. I'm sorry you are facing this,but this forum is a good place for support.

Emily 123 · December 2023

Hi MNGirl2,

This will be a great read for the entire family, minus your mom-it very helpful.

Understanding the Dementia Experience: https://www.smashwords.com/books/view/210580

She has anosognosia, which means the disease has made it so she doesn't have the capacity to be aware of the changes she's experiencing. https://www.youtube.com/watch?v=5nw3YUDQJuY

Her reality is going to be different than yours . Her memory loss will create gaps in her memory which she will try to fill in with what she can access. Those will be older memories from when she was functioning better, but she won't be able to sense that she's drawing on something older because of the disease. To her that older memory feels real and current, and when you tell her it isn't so she thinks you're lying. If you do it enough it will make her angry.

Since that's the case, let go of wanting her to understand her diagnosis, as she can't any longer. Ultimately, she doesn't need to understand that there's a problem. That's more your need than hers at this point in the disease. I very much understand wanting a parent to understand their diagnosis and have autonomy over their own care choices, but at some point you have to pivot to finding her path of least resistance so that you can care for her without the agitation and anxiety. Yes, you will feel like you're lying to your parent, but the goal is to keep her calm, and it's okay if her reality isn't yours. This part of the dementia learning curve is steep, but sometimes little adjustments can make a big difference. Good luck!

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

These were helpful to me:

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Tam Cummings-Stages: https://www.youtube.com/watch?v=tansVVDM0fE

Teepa-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg

Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI

Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE

Dementia/Driving: https://www.youtube.com/watch?v=B3x5nQ7oB98

Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg