What is your best advice for handling day of diagnosis?

You ask for my experience of it.
My brother told me AFTER diagnosis that he has suspected "something was wrong".
It took a severe accident with his truck to get an "incidental diagnosis of probable early Lewy's Dementia by symptoms".
He was told when I remained in northern California and told honestly and straight out. I flew to be with him in Hospital and rehab for a month and in that time we had visit from his attorney to do all paperwork such as updating advance directive, readying home for sale, making me POA and Trustee of Trust.

He had a lot of feelings to work through.He told me he wished he had died in the accident. We researched Lewy's and talked of his symptoms. We chose an ALF. We walked this walk as for a lifetime we had walked every other walk in the dark woods of life, like Hansel and Gretal hand in hand, me doing all I could for him. Him sharing all his feelings.

That was what it was for my brother, and for me.
Each case is completely different.
Even when honesty isn't fully understood I still recommend it.
Don't rob person of hope and whatever autonomy you can provide to them.
Reassure that you will BE THERE and will ALWAYS SUPPORT.

Do not negate their feelings. If they come out with "I would rather die" it is one you to say "I can understand how you feel; I hear you". NOT "Oh, you don't meannnnnnn that, Mom" because she does, and she will have enough/good and plenty of people denying her feelings from now on.

And that's about enough for first day.
And I will wish you luck. Do not forget to take care of YOURSELF. You aren't god. You didn't cause this and can't change it. And this is in many ways horrific for the loved ones who stand witness.

My Dad really enjoyed going to the Doctors - His Doctor was super Nice and we did cognitive tests and checked his walking and would order physical therapy . I never came out and said " Dad You Have vascular dementia . " He admitted to me several years ago " he Knew there was something wrong with him and there was no Cure . " I would buy Medical magazines from Harvard , News Bulletins from Tufts that mentioned dementia and Alzheimers . Also made sure he had Puzzles and Plenty of magazines to read . After the Doctors appointments we always went to Lincolns our favorite restaurant for Lunch and had a Good time . The Neurologist was also very Nice and we did the cognitive tests at the Stroke center and really he Did Great . We would encourage him and say " great Job George . " Same with Physical therapy he was cooperative . If we went to the bank we took a LYFT and slowly walked back home - sitting on benches , people watching , getting a coffee or getting Lunch , stopping By the farmers market for strawberries . I would always say " your doing a great job Dad . " Positive reinforcement and Patience goes Hand in Hand . They go through many stages and you have to have a Lot of patience and empathy for the person .

***Update***

Thank you to everyone that responded to my question. Sharing your experiences and offering your support were helpful leading up to and after my mom's diagnosis of vascular dementia.

Surprisingly, the morning of the appointment, she didn't fight me about going to the doctor.

I'm torn on how the doctor handled it. He lowered his voice when he said the fateful words and quickly mentioned that his dad has the same form of the dementia and were in goods hands with him. He made the situation sound hopeful; which was not the right tone to me.

I was not as prepared as I thought I was for the appointment and missed asking a bunch of questions so I'm working on getting her an appointment with a neurologist (as was recommended by a care manager I hired to help me navigate things) in hopes of getting more details and better information.

My mom was in a good mood leaving the appointment and said that she gets extremely anxious about doctor's appointments (her previous reactions now made more sense to me). I told her that I understood, that I don't think most people enjoy going to the doctor but that it is important, and that I'm here to support her no matter the news we receive. By the time we sat down to eat breakfast at a restaurant about a 5 minute drive from the doctor's office, she had already forgotten about the diagnosis.

My FIL has dementia and anosognosia.
He only agreed to a mini cog test because he wanted to keep and give his own meds in his room at AL.
Well he asked and was told his score and what it meant and he “blew up”. He told us he threw “that guy” out of his room . He insists his “ mind is as good as ever”.
He refused any further follow up with a doctor . We no longer bring it up . It just causes him to dig his heels in more claiming he’s “ independent “ .

Driving... My aunt started having dementia. One day she called me and could not find her car. She was driving to an appointment, got turned around after the appointment, and could not find it. The police drove her home. The next day, we drove to her appointment, with the directions she gave, and there it was... parked.

She missed the court order for appearance, and that was that. They took her license.

Do not mention dementia, do not argue with her, if you do, she may stop talking.. this happened too,

In home care, make sure you have appropriate home insurance. I knew a couple who lost everything to a caretaker. Because of that, they were put in a 6 pack.

good info on this website. Take care.

find a doctor that specializes in geriatrics instead of a family doctor so you can get good diagnosis for her The geriatric doctor will also make her visit to the office much more comfortable

Both my aunt and mother had anosognosia, and I have a friend in early stages of dementia who has it. Avoid the "D" word, because it will only stress out your mother. Talk to your mother now about how she would want to live if the time came when she was unable to care for herself. She may have difficulty imagining that situation. Essentially there are 2 choices, have in-home cargivers, or live in assisted living/memory care. Much depends on her finances and how much help she'll get from family members. Try to understand her wishes. Would she rather stay in her apartment or home with caregivers and others helping with her shopping, cooking, cleaning, etc. or would she rather live in a senior residence where there are skilled staff and other people her own age in the same building, and they take care of everything for her? I looked for a continuing care facility where my mother started in Independent Living and moved to memory care and skilled nursing as needed. While your mother is still able to sign legal papers, make sure all of her paperwork is in order. If she hasn't already done so, she needs to set up Powers of Attorney for medical (health care proxy) and financial matters. She needs to have a living will with her advance medical directives, and she needs to have a will, if she has assets. My mother made things easier for me by making me joint owner of her accounts. Her POAs need to be on file with Social Security/Medicare to be able to speak on her behalf, and some insurance policies also require this, as well as banks and other financial institutions. Her POA for financial matters should ask her for a credit card on your mother's account with their name on it so that they can purchase things for her. My mother also made things easier for me by agreeing that I should take over her financial matters (paying bills, etc.) At that point I set up everything on line and paperless. If she has caregivers coming into her home, be sure to lock up her valuables and financial and other personal papers. It's not easy telling people with anosognosia when they have reached a stage where they need more help. They think everything is OK. When my aunt got to that stage, the Social Worker at her HUD Senior Independent Living Facility gave her an ultimatum - she had to get 24/7 cargiver(s) or she had to move to an assisted living facility. She chose having a caregiver. There is a lot of paperwork and legal things to learn if you are hiring caregivers independently (not through an agency). All the best to you and your mother!

When my mom was diagnosed with dementia, she promptly forgot. LOL. She knew she had memory issues and some confusion but that was about all she knew. Didn't believe, like many, that she had dementia. That's OK. I mentioned it once or twice but she was resistant and it just does not matter if they agree or remember that they have it. I felt the diagnosis was for me - so that I knew what I was dealing with as her caregiver and could better deal with her deficits. We just refer to it as "memory issues".

Do some reading so you know what to expect, if you haven't already. Does she still drive? If so, that is a tough one but it will have to be dealt with. I remember how mad my mom was when the doctor said she couldn't drive anymore!

Best of luck.

MarieR6595: Unfortunately the anosognosia will prevent her from hearing anything you have to say about the potential diagnosis.

Since your mother suffers from anosognosia, she's not going to believe or acknowledge ANY medical diagnosis she's given anyway, so why stress out? Furthermore, it's a rare MRI that will diagnose a dementia anyhow.

My mother lived in Memory Care Assisted Living after transferring there from the regular AL building where she lived for 4 years. For the nearly 3 years she lived in Memory Care, she'd ask me what SHE was doing there bc nothing at all was wrong with her. The one time I told her she was diagnosed with dementia in 2016, she called me and her doctor a liar. So we were The Bad Guys and she was The Poor Soul for living somewhere she didn't belong. Until her dying day, she believed that.

That's what anosognosia looks like, in reality.

Good luck to you

I think my mom was aware in the beginning - sometimes - that something was going on in her mind. Then she forgot of course which is a blessing imo

The day of her neuro-test I brought a big fancy cupcake for us to sit and share afterwards over tea. Sharing fancy cupcakes with her became my go-to when I was upset with her ( not without reason usually! ) So we had a decent and yummy activity for after the appointment, I think that helped both of us, really.

Also, assuming dementia diagnosis, make sure they write it down in her chart!! I had to follow through because they did not. I also found out that people don’t READ the chart so I’ve had to remind the medical folks repeatedly about her dementia. Despite being obvious to us, other people don’t know what they’re seeing. Especially if our dementia person showtimes for others. Having the diagnosis in her chart has been the most helpful aspect of that appointment, for me, despite having to remind folks…

My Moms Neurologist sat down in front of her and looked her in the eye and told her she could no longer drive. That she may see things others don't, etc. Never said the word Dementia. I did when she asked "what is wrong with me". That was the first and last time. The next day she was looking at her paper and said "look there is an article on that thing u said I had" and there was. My Mom seemed to just except that she was having problems. She had her paranoia but not much, she had her night terrors, she would get stubborn at times. But on the whole she was easy. Well loved by the staff at both the AL and LTC.

My parents lived into their 90s. Dad had cancer first, then dementia. He was never told he had dementia. He died of cancer, age 92. Mom developed dementia around the time that Dad died. She was never told she had dementia, either. Her cause of death was dementia, age 95. I had conversations with their medical teams about all their health issues, and we freely discussed dementia. I believe my parents were never told because in Dad's case, he was going to die of cancer soon, and with Mom, her care team and all her documents were in order shortly after Dad died. There was no need to discuss dementia with her because she was well cared for and had no decisions to make.

My LO was aware for some time that his cognitive skills were failing. When his PCP diagnosed dementia, it was handled well. The doctor said, "These dementia symptoms you're having can be traced to silent strokes that you had in the past. You've taken good care of your health and are physically fit for your age. You're getting treatment for the things that are wrong with the rest of your body (joint stiffness, thyroid issues), but we can't heal your brain. Isn't that sad?" LO agreed that it was sad, and the conversation moved on to medicines he could take to help symptoms. It was handled in a matter-of-fact way, and LO no longer remembers the conversation. He is very aware, though, of his continuing decline.

Try not to dread the day. The doctor will know how to handle it. I doubt that your mom will remember much about diagnosis talk, which can be kept to a minimum on that visit. You can follow up privately with doctor later. The nitty gritty of what will happen next is not necessary at that time. Also, I doubt that to know a diagnosis will make her brain issues get worse. The progress of the actual disease happens for other reasons, such as amyloid plaques. Depression, however, is another thing, and there's medicine for that.

Day of diagnosis? Different as your own thumb print. Individual as one's own thumb print. The day any elder is diagnosed would be irrelevant to your own life, other than to tell you "our own story". You cannot know how much your Mom will retain, nor how she will react now, nor how she will react in the future.
Since you ask I will tell you my own story.
Reassure her that you will not abandon her, that you will help best you can to keep her safe. Much as with our children, that is what they want to hear. That you will be beside them whether they are in care or whether at home, whether near or far. That you will face it together.

My brother was diagnosed after a serious accident with his truck in which no one but him was hurt. He was delivering his refuse to the large refuse container in his complex and he ended up driving his pickup back and forward between massive container and a huge palm, each time smashing his own head on some window. I lived in No. Ca while he lived in Socal, and I got notified by a hospital that "incidental findings" indicated that my brother had probable early Lewy's dementia, diagnosed by his symptoms. When I visited he told me he "knew something was wrong" and I learned firsthand about symptoms he had been choosing to ignore.

Once diagnosed my brother said he sure didn't like this, but he WAS glad he knew why he saw the world so differently, as it had been worrying him. And knew he had to get his world in order for what was to come. Asked me to be his POA and Trustee of Trust, and we went to the attorney together to get this done. Went to DMV and turned in license and got ID card. Sold his last little home. Chose an ALF after he decided he wished to remain a Socal boy. We did this together over a year and sat often and discussed his symptoms and what he was going through. He had always been an ordered and orderly man who lived somewhat like a monk. He said being in the ALF was a huge adjustment for someone socially a bit anxious, but said "It's like when I was young and in the army; I don't necessarily like it but I make the best of it". He adjusted to walks on the grounds, and picking roses for the breakfast tables. People would bring him vases to use.

Before his dementia could progress markedly (in fact his hallucinations were fewer once in care, once all bills handled by me, once no worries of any kind) my brother died of sepsis. It would have been what he wanted. He and I are/were both bit control freaks and greatly fear/ed loss of control. He often said he wished the accident had taken him so he didn't have to suffer the loss of himself.

Sp that's my story. I think that I haven't ever seen anyone take such a diagnosis so well. People vary greatly in dire diagnoses such as terminal condition and dementias. I wish you the very best, and your Mom as well.

I agree with BarbBrooklyn that the doc is probably not going to dramatically pronounce a dementia diagnosis like on a soap opera. It's not their first rodeo, especially if you explain in a pre-written note (that you discretely hand to the doc beforehand) that she has anosognosia and you're very worried about her reaction to what she is told. I'm not sure you can video record this portion of the exam outcome, but it would be handy to have when she becomes insistent/resistant to future solutions or helps -- then you play it for her. Make the doc the "bad guy".

Dementia is a sneaky, gradual disease so your Mom probably is at the beginning of the sliding scale of this illness. Your homework will now be to not fret about what hasn't happened yet (so you don't overwhelm and exhaust yourself) but to educate yourself about her diagnosis so you can have more peaceful and productive interactions with her. It's going to be all about problem-solving now, and this forum is an excellent resource for that.

I wish you clarity, wisdom and peace in your heart on this journey!

Marie, welcome!

((((Hugs)))) and deep breaths, first off.

You are at the beginning of a tough journey. We are here with you.

I can only share my experience with my mom. Her PCP saw NOTHING wrong with her; we finally got her into a nice Independent Living Facility. The wonderful geriatrics doc there saw her and sent her immediately to see a geriatric psychiatrist.
Who called me and insisted that mom needed a neuropsych eval. (We all kept saying mom was "sharp as a tack".

The neuropsych and the accompanying MRI showed that mom had had a stroke and now had Mild Cognitive Impairment. And, the way it was explained to us, she couldn.t reason her way out of a paper bag. (It made the anxiety understandable).

The thing is, the doc, in explaining this to mom said "you shouldn't live alone any longer. You need to have people around you all the time so you have help if you need it. You need a better diet than you've been eating at home. Cooking for one sucks, right? You need more activities, more stimulation, more access to transportation on your own."

Mom agreed with all of this. The parts about what mom's deficits were, she didn't seem to hear.

Can you talk to the doc ahead of time and find out what her/his approach is in this kind of situation? I think we were very fortunate that we had a team that did a lot of these "Informings".