How to get mom diagnosed for dementia when her primary won't help?

Go to a specialist. My mom just had cognitive testing done to re-screen for dementia / Alzheimer's a few weeks ago at Brigham & Women's Hospital. You want to see a NEUROPSYCHOLOGIST. A primary doctor does not have the training to do a deep clinical psychological assessment and the primary should give a referral for testing.

https://www.ncbi.nlm.nih.gov/books/NBK513310/
"Clinical neuropsychologists are doctoral level health care providers who have specialized training in brain-behavior relationships and perform comprehensive evaluations in addition to providing certain forms of treatment."

https://my.clevelandclinic.org/health/diagnostics/4893-neuropsychological-testing-and-assessment#

Get a referral for a neurologist. Tell her it is recommended evaluation that her doctor is unable to do in his/her practice. Call/write the doctor in advance and outline all the problem behaviors that you have noticed.

Have a little discussion with her "primary" and tell them that you require their assistance to know if she is able to manage alone while you are 2000 miles away. This kind of puts them on notice that you feel that they have a responsibility, and therefore are putting them on notice that if anything happens....if not bring her to a walk in or emergency clinic. Make sure you tell them all the things that are going on. Is there a POA etc done? Is there a clause when it comes into effect? Sometimes we have to make a crappy decision, to force our loved one to do something, we feel guilty but hold on to the thought that you love her and it is for her own safety and protection. God bless

Contact the DMV in her area.. Give them the # plate and description of the car and that the driving was erratic. It does not even have to be signed.. They will take it from there .. She could end up not only hurting herself but others and the financial repercussions could be monumental. I do hope there is a DPOA in place . I have had to send copies to a lot of people . Doctors, bank, insurance companies etc. We did it early on when he was still able to sign . As getting a diagnosis, the Alzheimer’s association has a wealth of information. The people that answer the phones have all been trained . They might be able to head you on the right direction . Prayers are with you ..

Have a talk with the PCP first then :
If your original PCP does not help you out - ask for a second opinion.
Also have mom tested for a UTI.

Can you disable the car, put a note under the hood for a mechanic (in case she calls one) to leave it disabled?

Have you talked to her about her driving? Not so much on the level of mental, but on the level of her reflexes are not as good as they used to be...how bad she would feel if she hurt someone else in a wreck?

Ad geriatric dr can probably handle the testing for her, but I'd be really careful about telling her she has dementia if that's what the test indicates. It will make her sad or angry to know she's losing her memory.

kafers1: Your mother needs to be officially diagnosed by a neurologist STAT. Her auto should be disabled by any means possible, ideally when you are with her for a month. You should google neurologists in Citrus County, FL. A few came up when I googled it.

This is such a frustrating area. We finally got MIL in to see a neurologist. She forgot the three words before he even got to the next section of the test. But he still wouldn't diagnose her with anything until he got an MRI. He took two and a half months to submit the referral. We finally got the test results last week after getting her examined on Halloween 2022. We still haven't heard back from the neurologist. (We complained to her PCP and he said that there had been a huge local exodus of practicing neurologists after 2020 and that it would have taken longer to get her diagnosed if we started all over.) I hate this.

Contact community senior services in the area or get a referral from a geriatric specialist in your area, who should be able to know some options in Fla. Is there a home physician visit service available in her area? If so maybe you could start with scheduling a home doctor visit?? Or, how about fly her to where you are for a visit with you and use geriatric physician where you live?

Telehealth is all the rage now! Also, Florida has a website with a helpline:

https://elderaffairs.org/programs-services/elder-protection-programs/

Kafers, might I ask if you are the POA for your Mother?
If you do not, no MD will examine an unwilling patient nor discuss outcome of exam with you, nor will you--should there be a dx of dementia--get any POA in future, as mom will be unable to confer it upon you.

You say you are 2,000 miles from her. Who does she live with and who at present is involved in evaluating her safety?

I would make a visit now and evaluate the situation. You may need to report your Mom to DMV and let her call you in for testing. The sad fact is that many elders stop driving the way my brother did, with a serious accident and injury, and your getting a call in the middle of the night as I did from a hospital telling you that your Mom is badly injured. It WAS incidentally, the way he was diagnosed with probably early Lewy's dementia.

The driving issue is very hard. My father’s license was revoked in CA after his ALZ dx. He kept driving anyway. I am 3000 miles away and we tried everything we could think of. Disabled the car, let the air out of the tires, syphoned the gas, hid the keys, etc. He is like the terminator. He just won’t stop. He found a way around every problem and even went out and bought a new car when we had the truck towed away because it was “broken”. After that I froze his credit so he can’t finance anything again. But it took a year for us to finally get the cars removed for good. He had a fender bender in front of his house. Hit the gas instead of the break and hit his friend’s parked truck. Luckily he did no damage to the truck but he really crushed in the front of his car. Perfect. Opportunity came knocking. We had the car towed away and told him the mechanic said the car is totaled. If they can fix it, I will have it taken to a relatives house where he will sell it for me. Then the next week my dad’s girlfriend took him away for the day and I arranged to have his other car “stolen”. He came home to find the car gone and all hell broke lose. My dad’s girlfriend pretended to call the police and file a report. When he starts getting upset we now have a family member who he doesn’t know on the phone call him and say, “this is officer x, we are still looking for the car so give us some time on this”. That seems to work.

Then he demanded to be taken down to buy another car. His girlfriend managed to let the three different dealers know what was going on and they all just said, “you can’t buy a car today because you don’t have any credit”, or you are unable to buy a car anymore because you don’t have a driver’s license.

This is going to be an ongoing struggle with him I know, but if he manages to get his hands on another car, it will be time to get the actual police involved.

Look for a Neuropsychologist. Extensive testing can be done and discern between various types of dementia to be sure she receives the correct treatment and therapy. A friend learned her husband had Vascular dementia instead of Parkinson's related dementia which should be dealt with in very different ways. Use the patient portal and maybe an appointment can be made sooner. If you don't have access be sure you get it when you are there. I have found this is the best way to be sure the doctor receives and hopefully understand a message as you intend it rather than messages not communicated properly by well meaning staff member. Some dementia patients are misdiagnosed and the wrong medications can make it worse.

Think about me and my family.Don't let her drive one more minute.She should not be alone-get her help.You are endangering her to falls, etc.

Good Morning,

First and foremost--take the keys away. Mom shouldn't be driving. I had to do the same thing and Mom is on a blood thinner. You cannot be polite about this. You have to think of Mom's and other's safety on the road. They can't see what is happening.

Lots of water and a shot of cranberry juice. A UTI can also mimic Dementia or sometimes they have both at the same time. The railings around the toilet are better than the booster seat. Along with white "cotton briefs". No step-in/no back shoes or area throw rugs.

I had a Nurse Practitioner come to our place and assess my mother. Should you find another PCP with a better rapport? A lot of PCP are not taking new patients, let alone once you hit 80. If you can find a NP and a MD who can oversee, that can be done too. A family medicine practice will suffice and they go on the portal and keep the PCP abreast of mother's specialists.

The portal is the way to go. You can do everything online especially if you are out-of-state.

The first signs of my mother's decline was her peripheral vision. I couldn't understand why my mother would walk behind a car backing of out supermarket parking space. After all, she had new hearings aids and cataract surgery. Well, with Lewy Body Dementia your peripheral goes first so it's like putting snorkeling goggles on a person and they only see a small circumference in front.

The executive functioning skills and any type of instructions my mother could not follow just as you mentioned. Now I am not a medical professional but I am just telling you our situation.

You could get a Neurologist and/or Geriatrician Neuro-Psychologist. My mother has both. The PCP is/was wonderful. Everyone's situation is different.

This is important--check out on your State Board's Medical website ALL of your mother's doctors. I had a bad feeling about one and my "little voice inside" was right on target.

I have my mother check in with a Geriatric Neuro-Psych every 6 months. I accompany her. It's not in my mother's best interest to have an MRI every 6 months since my mother has a bad heart. We know she has Lewy Body Dementia. I don't want her tortured. I switched her from Warfarin/Coumadin to Eliquis. The blood draws and INR were all over all the place and her arms were black and blue. There are no blood draws with Eliquis but it is more expensive.

Dementia patients are afraid of the water but they still have to be groomed. I have a shower chair, nozzle, handicapped bars and a beauty box and spa bathrobe for my mother. Every so often I take Mom across the way and also have my mother's hair washed and styled. A cut every 6 weeks, Podiatrist every 9 weeks, dentist cleaning/check up every 6 months.

Maybe you could get her in the shower and the next day bring her to the hairdressers. Make gradual changes. Once you get a PCP some will can work with some doctors will let you have an online appointment. It depends. They have to see you first and then examine you but as time goes on and these are progressive diseases as one ages, this can be done. In the mean time if you can control some of the symptoms, if it's possible, you need a diagnosis first.

The test at the Neuro-Psy doc will be, they ask the patient, what is 7 from 100...what is 7 from 93...what is 7 from 86, etc. Then the 3 word test--remember these 3 words.

I hope I was of some help...

I would think a primary care provider would have the ability to get her driver's license revoked. Mom can drive? The condition of the vehicle will let you know. Notice scraping,dents? The fact that she can't follow instructions leaves her concentration at fault and a danger to others and herself,an accident and deployment of the air bag itself could be fatal. It's hard to take away the keys but you have to and insist that it's for the best. After telling Mom I need to keep her living, I hid the keys. Her PCP also agreed and reported it to the DMV.
It's not a bad thing to be truthful about what happens when someone can't drive anymore, truth is they are going to be angry or disappointed but they will feel so much worse if they injure or kill someone or themselves.
It might sound like a guilt trip but it's the truth and something that needs to be addressed now.
I've had to drive my mother to the Dr plenty of times and they will talk to you privately and help you with any issues you have.
Wishing you the best!

I live in Ohio and my moms family doctor did not help either. She ended up going into the hospital multiple times and the hospital drs diagnosed her and I picked the nursing home and they got her in there

I just saw an idea from another poster on a different thread about the car. Tell her it “ got stolen “.

If or when you can get Mom to the doctor for evaluation , don’t shower her , let them see what is her true self .

What is the goal here? Is it just to have her stop driving ? Or are you looking for a diagnosis in order to get her into assisted living ?

My mother’s PCP was no help either , all he did was suggest assisted living after I gave a note I had written to the nurse to give to the doctor . ( Later the nurse told me the doctor asked her opinion about my mother before seeing Mom that day , and the nurse told the doctor that she “ was seeing cracks for years”) . My mother said absolutely not leaving her home .
Doc didn’t offer any testing or referral to any other doctor, just told her she should think about assisted living to give me a break . That didn’t help because my mother felt it was my duty to take care of her . He did have the nurse give me a brochure about getting home care, which mom refused strangers in the house .

But Mom could not be home alone at night anymore. She was sundowning , calling up saying my (teenage) sister stayed out all night with her boyfriend . My sister did not live with Mom , nor was she a teenager . She was a married mom in her 40’s .
My other sister called our local County Dept of Aging , they sent out a social worker who interviewed Mom and said she wasn’t safe alone and needed 24/7 supervision ( not to mention bathing ). The social worker was scheduled to come back with someone else to remove my mother from her home and physically bring her to an assisted living facility that we picked out . ( mom would not look at any ) . One of my other sisters told my aunt who called up and tipped off my mother. My mother then said she was having chest pain , I think to avoid being taken from her home . We called ambulance to take her to the hospital.

At the hospital she finally had an evaluation ( at my asking when I explained the situation ) got the social worker at the hospital involved. Mom was diagnosed with dementia deemed it was not safe to live alone and she went to assisted living from the hospital .

Fortunately POA papers were done years previously when my father was alive .
If you don’t have POA that can be problematic , if Mom is not willing to sign , or if she’s not competent or willing enough. If no POA assigned by your mother she will be a ward of the county or you could seek guardianship through an elder care lawyer ( which is expensive) .

If you are looking to get Mom out of the house try to get her to sign POA first for medical and financials . Then call dept of aging to help if your mother is unwilling to go look at assisted living places . Have one or two picked out ahead of time .

If Mom ends up in the ER asked them to have her tested for dementia , say you don’t think she can live alone anymore . Say it’s an unsafe discharged and don’t take her home . Get the social worker involved to help facilitate placement at a faculty . Tour and have a few in mind . My suggestion is placement since your mother sounds very uncooperative .

Disconnect the car battery so she can’t drive . If your sister or anyone else lives or stays with your Mom , don’t leave car keys where your mother can find them .

You and sister need a united front ( covertly ) to get Mom placed in assisted living possibly memory care . Without money will need to start Medicaid process and find a facility that takes Medicaid . Does she own her home , sell that and use the money from sale to pay the facility . A elder care lawyer can help with this process or sometimes a social worker . Good luck .

Mom is independant, lives alone.

Yet you & sister have big concerns. Don't think she IS actually independant.

You would like investigation of her capabilities, dementia screening & diagnosis & treatment (if appropriate).

Would that be a fair recap?

What expectations do you have on a diagnosis changing the situation? Do you think it will change Mom's mindset or behaviour? Or enable an existing POA to be activated?

I think your sister has to re-evaluate. Get herself off this bus before it crashes. Then she can join you at the sidelines.. to alert others your Mom needs help.

See if there is a Neurologist in the area.

I remembered being scared when driving with Mom. Then, being terrified when both our teenaged children were in her car and almost t-boned. My son yelled ‘Grandmom, what are you doing?’.

I recognized Mom was beginning to slip and began keeping notes of the things I was seeing that were different in her. Eventually, she didn’t take her meds and ended up in the ER. I was able to insist on a bedside psych eval after attending neuro read my notes.

Neurologist, not geriatric psychiatrist.

Simply refuse to ride with your mom behind the wheel, and when she gets mad, tell her why.

If you are talking about her PCP, Medicare allows you to go to any doctor that excepts Medicare without a referral. This is traditional Medicare not a Medicare Advantage. Also, you may be able to go over the PCPs head by calling the Insurance company and telling them you are sure Mom has Dementia and you want her seen by Neurogist.

Back when HMOs were a thing, my friend had a heel spir that her PCP felt therapy would help and would not give her a referrel to a foot specialist. She called the HMO and told them that surgery to remove it was her best option, they agreed and referred her to the specialist.

If Primary means the person who is caring for her, if no medical POA in effect, they can do nothing. I would call DMV and see if she could be tested. They will take her license on the spot.

I don't know the purpose of her seeing a geriatric psychiatrist. Seeing a psychiatrist has to be at your mother's free will as an outpatient. I doubt she'll cooperate if she thinks you want a diagnosis for dementia.

Her primary? Are you referring to her PCP or your sister not helping?

Unfortunately you may have to wait until there is some event that "forces" action.
That probably will be a trip to the ER.
Does your sister have POA? Or do you? Anyone?
If no one this should be taken care of BEFORE she is formally diagnosed. (If a lawyer thinks she is competent to appoint someone. If not you may have to go the route of you or sister obtaining Guardianship)
Your sister should NOT be spending her money on mom's personal expenses.
She should budget a set amount and when that money runs out that month then no more purchases.
Mom should not be driving. Sister should have the car disabled. And if mom is living alone, she should not be. A call to local Senior Services might provide some guidance. Your sister should tell them that she can no longer safely care for mom. (safety is not just mom's safety but your sister's safety, if she is experiencing seizures she should not be the sole caregiver)
When/If you go help your sister she should leave and let you help mom so there is no 3 party dynamics that your mom can pick fights with pitting you all against each other.