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My family and I sought neuropsychologic testing for Mom to get a more definitive profile of her disease and emotional issues and to make sure she was placed appropriately in memory care. Mom took the 4 hours of testing, which she said was tiresome and irritating. In a couple weeks Mom and I will meet with the neuropsychologist for what he terms a "feedback session." My question for others here is what was your experience? For what it's worth, Mom signed a HIPPA release for me to receive information about her diagnosis and recommendations. Was it awkward when the doc told your loved one about their diagnosis? Mom refuses to believe she has anything wrong with her, despite diagnoses of vascular dementia and Alzheimer's from her neurologist.

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Good question! My father was diagnosed while in hospital with alcoholic Dementia. The family was told the day before and we were unsure of how my dad would react to this news. The Geriatric doctor suggested a family meeting which I thought was a good idea. They were very through in explaining their testing and results. Here’s the downside: At least 5 of them were in the room along with myself, my brother, and my granddaughter (who my dad has a good connection with). While they were very nice and thorough, to my dad I am sure it felt like he was on trial. He denied everything and 3 months later he is still upset that we did not defend him and that we sided with the doctors. He said, “you sat there and said nothing”. So advice: keep numbers small, ask the type of questions that will leave your mom with a feeling of family support, and more importantly, try not to explain after the meeting where the doctor’s “are coming from”, or your mom will view you as on their side. It’s important to let the doctors take the fall, as you have to be the caregiver so you need to maintain some level of good relationship. It will not be easy. In testing my dad it revealed that my dad has very little “insight” - so whatever is explained by anyone will not be fully understood...the person with Dementia will come to their own conclusions...in our case denial, and a feeling of being alone to fight back. We took him to a new Geriatric Doctor for ongoing care, and explained to him that he could get a second opinion and retesting. That happened...they supported the findings; and now my dad feels “they are all in it together”. Good luck!
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I like that your mother found the assessment tiresome and irritating - my mother felt the same, and complained about the "trivial" questions!

I don't know about awkward, exactly... I think how the feedback goes down will depend on how interested your mother is in the issues as a whole, which is one of the advantages of combining the physiological and mental aspects in one assessment. For example, with the neurology, seeing actual images of her actual brain is going to be tough for her to argue against, isn't it?

I think one thing which might help is to separate the session into two phases. One, here are the findings, and they are X Y and Z, and that's a fact. This should be comparatively straightforward, and I hope it will be interesting to her, too - this is her head they've been examining, after all!

So that's that bit. And then two, what does your mother want to do with this information? Are there any recommendations, and do they need to be actioned now, soon or whenever?

Try not to get ahead of yourselves during the session - neither you or your mother should come under any pressure to commit to any one course of action immediately, not until you've had time to chew over what gets said.

Given that your mother doesn't think there's anything wrong with her... If you can, go over with her beforehand about any questions she might like answers to (and make a list of your own, too). And if she should choose to argue about the findings and say they're nonsense, I'm sure she won't be the first, and you won't need to insist that she agree. The facts will be the facts whatever she thinks of them.

So, encourage her to take an interest, but don't try to force her to accept anything she'd rather deny.
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Tried to post answere earlier, but guess it didn't take. My late husband went through 6 hrs (time off for lunch) of tests, and a week later we went back to hear results. He had thought he "did badly" but was relieved to hear that his results were "not consistent with Alzheimer's." He didn't really understand that the provisional diagnosis of vascular dementia wasn't good, either, or that he was at risk of a major stroke within the next 5 years. His memory wasn't all that bad, but his "executive function" used for paying bills, etc. was bad, and his visual problems with "depth of field" made driving impossible and sometimes walking a problem, and his once amazing sense of direction was gone. We were told that he was at risk of major stroke in next 5 years, so we sold our house and moved back to the city where our children lived, into a retirement community. He died 15 months later. I am really grateful to the neuropsychologist for being honest with me, and also that my husband didn't put up too much resistance.
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I have a different story. I first began to notice problems with my memory in early 2011.The doctors, kept wanting to look for other issues. I continued to notice problems, finally the doctors took a different path in 2016 when I was fired from my job after a 38 year career, for failure to make my goals. The MRI and neuropsych exam were done DW was only one working so I went through the testing and Evaluation on my own. Finally I was diagnosed in my mid fifties with Dementia, Severe Cognitive issues, possibly early onset Alz. My response JOY. I knew things weren't right all along. That was in mid 2016.
I was somewhat dismayed because I had provided info from a neuropsych exam I had in the very early 1960's with a diagnoses of Cognitive impairment and was told, I'd never hold job, be able to manage a bank account, drive etc. Fortunately, my parents didn't accept the diagnosis and got me in to a program for children with learning problems at a major university and had tutoring through Jr. High when it was determined, I'd tapped out in cognitive learning but did quite well with languages, history and reading. I completed a vocational school that allowed me to have a career which allowed me to realize several childhood dreams. I tell you this as a basis of comparison to the report from the early 60's. My mom was an RN, my dad a copy. I thank God for them every day, as oas family friends that were teachers and the Sister of St Joseph Carondelet who would tutor me before an after school for 7 years. The doctor that did the neuropsych exam said, there was no evidence of a learning disability. My Neurologist said, did you give the Psch Dr a copy of the same report you gave me? These reports dovetail. What you once overcame, came back and has set you back but not defeated you and I disagree with much of what the current report says. Yes there is evidence of Dementia, no there is no cure. No, you'll never be able to work again outside of your home. I was provided with a Script for Donepezil, and after 6 mos, I was reading for pleasure again, and taking care of our daughter, before and after school, fixing lunches and managing our finances, which I still do.
There are many things I can't do that sometimes confuse me if under pressure or I am in an unfamiliar setting. I used to do volunteer cooking for a Service Club's events and our parish. I can no longer manage what it takes to do purchasing quantities of food, or manage the prep of food for large events. I do continue to help out and do things simple like make salads, prepare veggies, wash dishes, which I do with little difficulty. As I always did in my childhood, I admit when I can't do something. Sometimes people that don't know about my problems will goad me and say I'm shirking off something I don't want to do but who cares.
My DW and I had begun some retirement planning shortly before my diagnosis. When the diagnosis was received, we moved quickly to put all of our property in to a trust in name of my DW. The five year clock started ticking a little more than one year ago. We along with our adult children and one who is still in elementary school renovated the house and things are mostly where we want it.
I have been noticing other health issues that don't seem right and have brought them to my family's attention and we have begun addressing them. I have also taken the time to clue in very close friends. Some laugh at me and say, no this can't be true, you just have to pay more attention to things, quit being a pessimist. You will get over this. Hello!!! I have a better sense as to who my friends truly are. I continue to do chores around the house and yard, and manage our finances. My DW is always very attentive to situations I pose her with and is always reassuring and loving. She and the kids will always help me overcome any problem. I am very lucky to have the family we have and I have verbally expressed my wishes on what I want for treatment of future health problems and all other end of life issues, verbally and in writing.
I think my family knows when I start denying things, they will carry out my wishes as Ii have expressed to them, even if I say, Oh, I don't need continued care, or that there are other problems. They will then know, I am no longer capable of taking care of myself, and feel good that we planned for my future as well as theirs. Hopefully this will help Caregivers on the first stage of the journey accept the diagnosis, advocate of their LO's and know, it is possible to make the journey easier for all. Most importantly, advocate for your LO's earlier rather than later, that way they can more fully participate in the journey, and it will lighten the burden of the journey. We have not forgotten the power of God and our Faith, and they have also played a large part in carrying us through the journey.
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I went through this with my Mom. I wasn't in the room when she completed the testing but sat in when the doctor went over the results. He wasn't unkind but was very blunt when he told us how each question was answered. I felt sick listening to the results and could only imagine how she must be feeling when she heard how poorly she did. She was very depressed on the ride home, said she might as well be dead and I thought we were in for a very difficult time. But, as fate would have it, my aunt (and her best friend) came that day to stay for a week. When she asked Mom how the doctor visit went, Mom just brushed it off and said it was nothing serious. Now she remembers that she felt bad about it but doesn't really remember what was said. In this particular instance, her memory issues are a blessing. An upside of the testing is that she started taking Aricept. After going through some initial side effects, she is doing better - has more good days and is thinking more clearly. I think denial of anything being wrong is a stage in the disease (and, for me, the most difficult). I try not to get frustrated when Mom resists getting help with things but it's not always easy! Good luck to you and I hope you and your Mom are helped by the results of the testing.
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I feel your anxiety...When the doctor told mom her results of the test, she calmly said, I don’t agree with those results. She has learned canned responses to any question, always says she’s doing fine. Even her husband says she’s doing better..he too, is in denial. But in reality, she has no insight whatsoever. And now she doesn’t even agree with the fact that she can’t remember, that she can’t remember.. I only wish she would accept it so we can move on from this so that she could help in plans for her future care..
It’s very frustrating..I do what I can and what she lets me..She is very open to letting me help, but doesn’t see that as a sign she can no longer do it herself..
I hope your meeting after the test goes well. But it must be extremely hard for anyone to admit they have this horrible disease. Chances are, they won’t remember the test or the doctors words, Mom doesn’t. Just be patient. Love them and be as helpful as they will let you..
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I don't think you can generalise, Sunny. Signs are getting picked up earlier in general, so more diagnoses will apply to people who are perfectly capable of comprehending explanations - if they want to.

But as a principle, people with dementia have no less right than anybody else to information about their health. They should be given an opportunity to hear it. If they don't want to, or are manifestly past being able to understand it, then the informed consent responsibility passes to their next of kin, proxy or guardian - same as with any other condition or cognitive disability.

What you do know is that the person will become less and less able to have any input into decisions. So if you're going to get their views on their care - especially now that dementia is a reality and not the hypothesis it was when they were doing advance directives or that kind of document - it is kind of now or never!
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Last year I noticed some changes in my husband. He was 85 years old. I have bad short term memory. So I suggested we both go in for evaluation. After a lot of testing, he has been diagnosed in the beginning stages of Alzheimer's. I have just normal wear and tear on the brain according to the doctor. He didn't like the family doctor we had so we switched family doctors. The new one works with the specialist and he and I like him very much. When the Doctor told him, he was very kind and answered all questions.

Of course he is scared. Thank God we updated our trust last spring before the diagnoses. I keep telling him I love him and will take care of him to the best of my ability. I don't promise to keep him at home because I might not be able to. He keeps telling me not to try to keep him alive, he doesn't want to live that way. He has a DNR in place. I am his DPOA. He said it again the other night and I assured him again I wouldn't keep trying to keep him alive. I will honor his wishes and not work on keeping him alive.

Right now he seems ok except for finances and driving out of town. He has lived in this house for almost 75 years and he is comfortable here. He was born in the town we live in and his driving is great in town. We went out of town 2 weeks ago and he got lost. So, if we go out of town, I will make it a point to be with him or I will drive.
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Thank you for sharing your experience, jfbctc59. We learn from each other!

My mother was never formally diagnosed with dementia. Her awesome geriatrician did some in-office testing "to see how your memory is." She concluded that Mom had "Mild Cognitive Impairment." Having MCI as part of her medical record alerted any medical professionals to not expect her behavior to be "normal." Mom's primary coping mechanism had always been denial. She would have totally rejected "Dementia" as a diagnosis. But she didn't know what MCI was and accepted that as an explanation for forgetfulness. She was in her late 80s. Having another name for her condition at that point would not have changed her treatment, and I think her doctor handled the situation correctly.

My husband, Coy, on the other hand, was an engineer and was always interested in cause and effect. (Ask an engineer what time it is and he'll explain how a watch works.) I was very ill when his appointment came up, and it was a daughter who went with him for the exams. So I don't know how he reacted to the diagnosis (Lewy Body Dementia). He was prescribed Aricept. I think the feedback session was kept simple, since I was going to be the caregiver and I was not there. Another session was scheduled in 3 months. I was there. (Care partners were encouraged to attend. Much of the feedback was for our benefit.) The sessions consisted of one afternoon, followed by the feedback the next morning. While Coy was being tested, I was interviewed by a specialist, about Coy's behavior and activity at home, and also about how I was coping. It was a long and thorough interview. In the session with the neurologist it was clear he had reviewed all the test results and the interview notes. He did a little further testing, and he observed Coy walking. He talked directly to Coy. "This test result is a bit better than last time. That is characteristic of LBD -- fluctuations in cognition. Is that how it seems to you, Coy, that you have some days when your thinking seems to be better than other days?" And then he would ask me for my observation. He would talk about new research and drugs being developed. He answered all of our questions.

This test-and-feedback session was repeated every year. Coy looked forward to the appointment. While he saw several clinicians each visit he was never overwhelmed with multiple people dealing with him at once. Even when some test results were worse than last time he always left with a positive attitude. It was good to know that an expert was interested in his case and would do all he could to maintain quality of life. It was good for me, too, to have professionals take caregiving seriously and tell me I was doing a good job.

The first session, when the diagnosis was given and I wasn't there, Coy had really severe symptoms and I doubt he really comprehended much. He was really cognitively impaired that day! All the next session were an upbeat experience for both of us.

Kingsbridge. having a lot of medical personnel in the room would indeed seem like a trial. Each specialist would have a different perspective and having them all together is probably efficient, but it seems to me that would almost guarantee anxiety for the patient. I walked into a job interview once to discover five people asking questions. Yikes! That made me so nervous that I really didn't do well. I can feel your poor dad's anxiety.
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My husband had the imaging, blood work up and also underwent a full day (7 hours) of entire cognitive mind evaluation, While he was working with the tester, the neuropsychologist and I talked in depth about the changes I had been seeing in my husband. As a computer specialist who had worked at NASA in the space program; working in foreign countries with businesses, and a very good custom furniture maker for us and the public, I had definite details that I could give to him. We went back one week later for the feedback from the doctor. My husband did not accept the results even though the doctor was kind, thorough in explaining the tests results, and allowing my husband to give his side of things. One week later I went back by myself so the doctor could explain in great detail about how to be a caregiver and what to expect in the future. I told my husband I was going to one of my doctor's appointments and one of his friends kept him busy. The original diagnosis was on the severe side of moderate for Alzheimer's Dementia.

It took almost 18 months for my husband to ask me why I believed the doctor and not him. So we sat down and I talked to him about the problems he was having making furniture, the danger to himself from the electric tools, and I went through some details on our financial situation which he was not capable of following. A calm low voice and manner helped him not to become greatly agitated. He then realized that he had a medical problem. I gave him assurances that i would take care of us as our life changed. After that he got more lost in forgetfulness and did not ask again. He would come to me for help and assurances more as time progressed. He died 7 years after the original diagnosis comfortable with me taking care of everything.

If the neuropsychologist had not been as good, kind, and thorough as he was, I would not have been able to do what I did. Information on the Alz website was also very good in helping me thought the rough times we had. The best thing on their website
were graphics which showed how the destruction of the inner workings of the brain occurred. Watching that numerous times helped me be patient with him. It was and at times still is somewhat difficult to have watched him go from a man of 27 to 79 when he died. So, that has been my experiences.
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