Anyone have a loved one that they suspect is gaining memory issues but doctors won’t listen?

dear OP,

sounds like the beginning of dementia. in the beginning, no doctor will diagnose dementia, even though the family sees many signs. this is also to protect the person (once a doctor starts officially diagnosing dementia, there can be consequences; so during the early stage of dementia, no doctor will diagnose dementia).

check your grandfather's hearing. he might have hearing loss as well.

the two very often go together!
bad hearing = you might start getting dementia (not always) (might)

hearing aids help slow down dementia. hearing sounds (even cars, birds, footsteps...), hearing conversations, stimulate the brain.

Kbelreivins, I agree with bundleofjoy, maybe it is your grandfather's hearing. Loss of hearing can make one appear like they have dementia. Some thought my own Mom had dementia as she had trouble understanding what they were saying even when she wore her hearing aids, yet Mom was still sharp as a tack.

Another thing you might want to do, have Grand-Dad checked for an Urinary Tract Infection. That can cause all types of behavioral problems and can mimic dementia. Maybe that is why he's not pulling up his diaper, because it burns. Such a UTI test can be done at a doctor's office or urgent care.

Without violating his privacy, consider taking video of his behavior to show to the doctor.

I love how these doctors who spend 15 minutes with someone think they know your loved one better than you do. 🙄

The "staring thru you" I question. Not that I don't think Dementia maybe involved but he maybe what my grandson (who suffers from epilepsy) calls "absent seizures". While having a seizure the person just stares off in space. In that time, which may only be a minute or so, the person loses time. He could also be having mini strokes. I think you may want to try another Neurologist. He can be tested for strokes.

This may not apply to your grandfather but as far as staring, my husband has Parkinson's with swallowing issues and I have to tell him to swallow before he can speak. It is as though his focus is on his mouth and until he swallows his saliva, he can't open it to speak. Sometimes, I even have to encourage him to take a bite of a pretend cookie to get him to initiate a swallow.

If one is available, I highly recommend using a geriatrician as a primary physician. Our geriatrician does and annual evaluation for memory that is a lot more than the basic questions. You have to draw a clock, copy shapes, listen to a short story and answer questions, remember three words, count backwards, etc. I had to insist to our neurologist that the basic test showed nothing, especially in the early stages, because he has always had a great memory for dates and history. He was impressed he could name the presidents back many years in right order.

A Neuro-psychologist is the best provider to do a thorough customized evaluation for memory issues. One size test does not fit everyone. Below is a link with info on an evaluation. Even though it is discussing Parkinson's related dementia, much of it applies to testing for dementia in general. One point he makes is very important.... the neuro-psychologist should be the one administering the test as well as discussing the results. My husband's first experience... a social worker did the test, the neuro-psychologist wrote the report and sent it to his movement disorder specialist who basically said there were no major problems... I had to ask for a copy which I did not even understand! The next experience in a different clinic... the neuro-psychologist did everything from start to finish and immediately afterwards discussed her first impressions with us then mailed a report to us which made a lot more sense than the first experience. I came away with a better understanding that he could not control many of the things he was doing.

https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1960

One more point... try to avoid using the term "diapers" but refer to them as "briefs" to help your loved one feel less embarrassed.

As others have said, sadly many physicians (even specialists) do not adequately consider when it is time for a full cognitive work up. Each specializes in their area, so that is what you need: a specialist in the area of cognitive decline issues starting with a board certified geriatrician who may in term recommend a geriatric neuropsychologist and psychiatrist. The battery of test for a "full cognitive work up" is much, much more in-depth than the simple questions: what is your name, what is the date and who is the President. If one failed on these questions, THAT is an obvious problem. But these simple questions are NOT determinative in any way, shape or form.

A geriatrician (usually an internist with additional training and certification in geriatircs -- conditions and care for aging patients that may have a range of conditions) will need to first rule out medical issues. Does you LO have a UTI, is there a Rx med interaction causing issues, is there deficienty or other problem with the basic "chems", etc. Once such "medical" issues are ruled out OR resolved; then the cognitive studies (the work up) should be done.

My mom went through this. Those cognitive studies were done over two days, with each session over an hour. They studies were done by the neuropsychologist (has a PhD) who partnered with a neuropsychiatrist (is a physician, has an MD).

The psychologist was largely focused on what if any thinking, memory, or thinking/memory processing, ALD/IADA and motor processing issues were present. Lots of folks are not aware that various "motor processing" issues can be one of the first tell tail signs of dementia (such as having trouble or gait issues if one is trying to walk in a large rectangle pattern while also answering questions.) The brain starting to be damaged by dementia apparently may not be able to adequately process both skills at the same time. The person may NOT be able to walk well/steady within the designated pattern AND ALSO at the same time respond fluidly to the questions being asked.

The psychiatrist went through assessing what if any underlying mental disorders (depression as an example) might be part of the problem in order to rule out or diagnose any such mental health concerns NOT necessarily the cause of the other, potentially larger pattern of cognitive decline.

And the geriatric physician will also interview close family, to gather what close family may be seeing at home. Dementia patients can "rally" and appear better when they know they are being assessed. So the family input -- when mom or dad -- is just being observed by those closest are important as part of the overall assessment. What changes in behavior (such as those you have enumerated) are important to report. What tasks or skills could you LO do at one time, but now is having difficulty starting, doing or completing.

For my mom, this later issue was for me the conclusive marker (NOT that I am a clinician). Mom wanted to make a cheese cake for a holiday dinner. She has a specific recipe she has used for 50+ years; making this cheese cake multiple times through each year. That last time, however, she just stared at the recipe (I had gathered all the ingredients and put them on the counter. She was not steady and having trouble just standing at the counter. After watching this for a long while, I asked if there was a problem. She said she wanted to use less sugar than what was listed (1/3 cup of sugar). So I said sure, use less if you want. She said, "I will add 1/2 cup, then). I thought WTF? I said mom, 1/2 cup is more than 1/3; she responded "What do you mean, the number 2 is less than the number 3." I just said, let me help you. She sat down and I made the cake.

She, no longer was able follow the recipe, nor able to process measurements. She had not really be cooking for while, eating things out of boxes. She just forgot how to cook: but she knew the date, her name and the President's name.

I suggest you schedule the apointment with his doctor later in the day when sundowning approaches

These are issues I think about a lot. My mother started memory issues 30 yrs ago and also paranoia. We just thought it was more of the mental illness. I started asking her gp about testing 10 yrs ago. Nope. It's just natural aging. Finally got her to a geriatrician 1.5 yrs ago. So at 88.5 she gets dementia dx. At 90 is basically a vegetable.
At 63 I definitely am having problems now. I even forgot where I worked one morning. But no md will respond. I think we miss the opportunity to curtail this disease when we ignore it until it's in the advanced stages. Got myself a Neuro psych eval 3 yrs ago. My memory is avg. Thing is, my memory has never been avg. Always superior, even though I have chronic fatigue syndrome. I don't think I will fall apart any time soon but in bits and pieces slowly. I do not want my senior years to play out like my mom's.

"Staring through you" doesn't sound like sundowning, it may be neuro damage from a TIA or other problem, also maybe some of it is hearing loss.

Take video of him doing these behaviors and take that to show his doctor. Also, if you are not his MPoA or Medical Representative (from a signed HIPAA form) then his doctors cannot discuss or act upon any of his medical/health info with you without his consent and presence. You won't be able to talk to his medical team by yourself. It's the law.

Yes I have had my wife’s doctors in denial but I got one to at least have a discussion. The reality is what do YOU expect? Once I came to the understanding that my wife had dementia MY whole attitude changed. I now let things go I am careful when and how I correct her so I do not upset her or make her feel bad. There is not anything that can be done except to keep them comfortable and happy. But be sure to take care of yourself it is the most difficult on you because you understand what is happening.

Our Neurologist isn't the least bit interested in my husband. I am now hunting for a Geriatric Psychiatrist.

I recognized the dinner time issue as tantrums began to erupt over little or nothing. I bought a TV tray and put my husband there to dine by himself and watch TV..............we now have peaceful dinners, just not together. It's a win-win situation and I'm quite pleased. We will give it a try just for Thanksgiving, but the togetherness will end abruptly if a tantrum erupts: Pumpkin Pie tastes good no matter where you eat it.

A problem that I've encountered with LOs is that they wanted to keep on with the doctors they had for 25 years. The doctor wasn't a geriatric specialist. He was an osteopath in general practice, but LOs got along with him just great and didn't see any problem. He overlooked important health issues resulting in bad situations. Based on this and other experiences, I believe it's important to switch to a geriatric specialist around the time that a person gets on Medicare. The doctors could help by suggesting that for their patients.

We become the parents (even helicopter parents, like me) as we negotiate medical care for our loved ones. I believe the truth is that regular doctors are not educated about geriatrics, nor are they motivated. I believe they get wake up calls when they or their loved ones are affected. Old people are not truly respected in our culture..........I would move to Japan if I was rich.

What we need are politicians to face the inevitable for themselves and their loved ones so that THEY will get motivated to pass laws that benefit dementia patients. Praying that, someday, they will offer our grandchildren vaccines.

P.S. I requested a referral for a Geriatric Psychiatrist from our neurologist, his reply was, "I don't know any." OMG

Video tape him so that you can prove it. He clearly has advanced dementia. The agitation in the evening sounds like sundown syndrome to me. My Pop had that with anger. As his disease progressed, the sundowning got earlier and earlier. He needs medication. Finding the right medication will be trial and error along with increasing the dosage over time. Some people also try CBD gummy’s for agitation and sleep and have had success. However, I would check with his doctor before giving him anything. His family doctor should be able to prescribe something for him. Many of us have been through what you are experiencing. It’s not easy and you can get burned out quickly. He should be in a memory care facility. Take care of you!

Kbelreivins: Seek another neurologist.

Drs are not interested in saving the older generation. You must insist! Thats what I did. I would call my doctor until his nurses made him call me. Ha ha! When I insisted on a ALZ test he gave it because I sat there and told him he needed to give it to him. It came to pass that my Daddy did have ALZ and after 1 year of this we finally got a someone who finally explained what was going one. He was the best Dr. Then medicare dropped him! But that was after I got what I needed. When I tried to make an appointment with another Dr. it took two weeks for them to call me back. By then I had my Daddy in a group home and with another Dr.
My advice is to read everything you can about ALZ and Dementia.

Sounds like you could use a new neurologist.... maybe one who specializes in geriatric medicine as well as a geriatric psychiatrist. Unfortunately, there are not a lot of them even in urban areas in the US. Maybe try to contact the American Geriatric Society. They maybe able to further direct you.
That 5 min "what year is this" exam is not really revealing.

I had a general GP for my Mr. and Mrs. he has made a hand written note about her having dementia but never did anything about it. Never gave her a referral to a specialist. So when I came on the scene all that changed. find a new neurologist. I too, have held a slight contempt for the ease of their questions. I learned from another neurologist that some people will learn how to give pat answers for certain things so they seem like they don’t really have a problem. That was my Mr. He was harder to detect. change neurologists; forget that person if they’re not helping you.

Did you know that there are other neurologists? You should try a new one.

In addition, document and video any unusual behaviors.

YES we have advice ! READ READ READ.
Get a book(s) on dementia and types of dementia, what parts of the brain are affected, and (most importantly) how to respond / communicate with a person inflicted with dementia. Google TEEPA SNOW. Watch her webinars.

AND ...

It can be confusing. Yes. One minute they cannot understand what you are saying and the next, they can tell you what their birth date is. (I've observed this in exam rooms with my client(s). They cannot function outside of the office for the most part and yet they can 'seem' to respond / answer questions accurately and being somewhat alert.). One client who was an active alcoholic said she didn't drink much (which is not true) although the medical provider wrote that on her chart (as to presume no need to be alerted to alcohol consumption ... which can lead to imbalances, falls, etc.).
There is a flowing going on and I believe no one knows the how and why or even the what (is happinging). It reminds me of me having more cognitive / better mood in the mornings and more energy (more ability to function as I want to) during the days and by 4-5-6 pm, I'm done.

brain chemistry / thoughts/ communications/ behavior . . .

Requires a medical diagnosis
Symptoms include forgetfulness, limited social skills, and thinking abilities so impaired that it interferes with daily functioning.
People may experience:
Cognitive: mental decline, confusion in the evening hours, disorientation, inability to speak or understand language, making things up, mental confusion, or inability to recognize common things
Behavioral: irritability, personality changes, restlessness, lack of restraint, or wandering and getting lost
Mood: anxiety, loneliness, mood swings, or nervousness
Psychological: depression, hallucination, or paranoia
Muscular: inability to combine muscle movements or unsteady walking
Also common: memory loss, falling, jumbled speech, or sleep disorder

Gena / Touch Matters