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How do you get a DX for Alz or Dementia?
Posted: Tuesday, July 9, 2019 10:00 AM
Joined: 6/16/2019
Posts: 29

I've read reports on here and elsewhere where families have gotten a DX for their LO and wondered how you have gotten that. Are there certain tests or observations that can give that DX and if so what doctor does this. Also, does it effect the treatment they receive?
Posted: Tuesday, July 9, 2019 10:12 AM
Joined: 3/20/2018
Posts: 2

The process doesn't always work the same for everyone, but for my mom it took about a year. She first went to see a neurologist who then referred her to a neuro-psychologist for testing, and then she was referred to a geriatric center that did some testing. Finally, she went to the local Alzheimer's/Dementia clinic which did about a full day of cognitive testing and gave her the diagnosis of EO Alzheimer's. 

Once my mom had a diagnosis, she was prescribed Aricept. The tests my mom had were a lot of memory tests (counting backwards from 100 by 7s, repeating words, drawing a picture of a clock with a certain time, etc.). My dad also went to most of the appointments and was interviewed about his observations as well. 

The biggest change for me about having a diagnosis was just the ability to process what was happening and to confirm with my mom that this was a real problem. Sometimes it's hard for the person with dementia to be aware of the depth of the concerns. 

caregiving daughter
Posted: Tuesday, July 9, 2019 10:16 AM
Joined: 11/27/2012
Posts: 2126

We started with internist. This doc referred us to geriatric psychologist. I think this is the closest you get to a probable diagnosis--definitive not available until post death. Our internist or likely a general practitioner did or can rule out other causes of cognitive impairment. So by the time you are at the psychologist, it's assumed to be dementia. Alz is most common type, vascular second most common. Folks could go to a neurologist as well--they would also rule out other medical causes of impairment but they too would likely refer to psychologist. The psychologist could indicate level of impairment and how it would affect daily living. They do this via a series of tests that takes a couple hours (interviews, clock reading, puzzle/judgment/recall activities). They would then advise, eg. no stove, or driving test, or involvement needed for financials. You may have the latter under control and may be thinking about skipping these types of evals. First, you do want to make sure there is nothing curable going on. Second, patients with dementia can become very difficult as the disease progresses and to me, it was critical that I have relationships with a medical team that could support us. Not just for medications, but guidance. Mid into illness, we switched from internist to geriatric specialist who have significant experience with meds. She did involve a psychiatrist as needed which allowed us to treat in home vs. emergency room.
caregiving daughter
Posted: Tuesday, July 9, 2019 10:23 AM
Joined: 11/27/2012
Posts: 2126

If you are close to a metro area, see if you can find a memory clinic. Just means they deal with LOTS of dementia patients. They also have resources in house so referrals to other specialists aren't a big deal. They may have nurse practitioners that can field calls. Likely a suburban or rural general doctor cannot offer this support or experience level. You could even start there and then get guidance on how to treat closer to home. We actually only went to psychologist once because mom refused after first time. They give you a report after--she read it but didn't understand it.
Rescue mom
Posted: Tuesday, July 9, 2019 11:52 AM
Joined: 10/12/2018
Posts: 1475

We got a reference from PCP to go to the local Memory Clinic for tests by neurologists and psychiatrists. It’s a standard 2-3 month waiting period from the referral to the testing. The tests were over 2-3 days, a couple hours testing each day. Plus the brain scans.

The hardest part was getting the PCP to refer. The PCP shrugged off symptoms as just getting older, we all forget things, etc. I had to really insist.

It took more than a 10-minute chat with PCP (which DH would grin and nod his way through) to uncover his problems. Then the brain scans, which showed DH severe atrophy/loss, were unarguable.

Some people do get a Dx from the quicker, more basic tests/questions by a PCP. 

But in our case, it took the scans and longer tests. I also like to think it’s good to have a team of geriatric specialists on call, at least. They are more familiar with the problems involved. OTOH, there’s often not that much that can be done.

The biggest help, honestly, was being able to tell/show family that yea, he really does have cognitive problems and it’s a real,diagnosis for a real problem. It’s not just a matter of being forgetful or having a bad day. He really cannot do what he used to do.

DH did get the usual memory meds. I’m told a PCP can prescribe them, IF the PCP will do it. I can’t tell they helped much; there is no “cure” so meds aren’t such a big deal. (Barring the need for any psychiatric type meds)

Some people also need the formal Dx to get various benefits they may be entitled to.

MN Chickadee
Posted: Tuesday, July 9, 2019 12:48 PM
Joined: 9/7/2014
Posts: 1006

A diagnosis should ideally be done by a neurologist. Many PCPs do diagnose and treat on their own but they really are not the most qualified to do so. You can start with a PCP for blood work and the basic things that need to happen and then make sure to get referred to a specialist.  A diagnosis will likely involve a lengthy appointment with a neurologist and/or neuropsych. Lots of questions, asking them to perform little tasks and challenges, testing their recall, and often imaging like an MRI or PET scan. There are many causes of dementia. This diagnosis process helps make sure it isnt' from a tumor, medication interaction, stroke, and many other things. Alzheimers is very common but in the event your loved one has a different kind of dementia such as fronto temporal or Lewy Body or normal pressure hydrocephalus, you really want to know that because symptoms and treatment can be different. As can the progression so it may help give you a better idea of what to expect and plan for. There are some medications prescribed for Alzheimers that may slow the progression some, but they aren't appropriate for all kinds of dementia and can even make them worse. So it's important to get a diagnosis from an experienced neuro. 

I found this video by Teepa Snow useful in understanding what to expect in the diagnosis process.


Posted: Tuesday, July 9, 2019 7:55 PM
Joined: 7/9/2019
Posts: 1

I had an appointment for my mom to go and see a neurologist back in January but she refused to go. I know she has this disease because her mom had it and her sister did as well; both have been long deceased. I see an hear my mom go downhill daily with her memory and it kills me to see her this way. I honestly don’t know what to do.
Posted: Tuesday, July 9, 2019 9:21 PM
Joined: 6/16/2019
Posts: 29

Thank you to each of you who replied to my question. My SIL has been in a nursing home for a week and was placed in the ALZ section. They are talking about possibly transferring her to another NH for long term care. I know very little about all the issues of dealing with the ins and outs of what needs to be done regarding a LO as the the disease progresses. I thought if I could get a DX to let me know about what the current level is I would be informed.
Posted: Wednesday, July 10, 2019 5:31 AM
Joined: 4/10/2018
Posts: 62

A neurologist, internist, geriatrician, or psychiatrist can give the diagnosis.

The diagnosis requires first establishing the cognitive decline and distinguishing dementia from delirium/other forms of encephalopathy secondary to dysfunction of other organ systems (e.g. high CO2 level from lung disease, liver dysfunction, infection, kidney dysfunction, etc.). This can be done with "mini" tests such as the MMSE or the MOCA but if the patient can perform the tests, the best is comprehensive neurocognitive testing with a psychologist. This takes hours to perform.

Once a working dementia diagnosis is established, it requires ruling out common reversible conditions, which if there are no other manifestations on physical/neurologic exam, would include a vitamin B12, potentially vitamin B1, TSH, RPR (for syphilis), possibly HIV test, and CRP/ESR - which are inflammatory markers elevated in vasculitis. There is some variability in which tests are sent.

Although historically there was pushback against MRIs, for anyone with a more rapid course this should be done and I advocate it for anyone with dementia. This can help identify things like normal pressure hydrocephalus, strokes/vascular dementia, and chronic subdural hemorrhages as a cause of dementia. It's also important to rule out depression - but also to not misattribute true dementia to depression, as the two are interrelated and dementia can often present early with mood and personality changes before memory loss.

Alzheimer's is a subtype of dementia. Unfortunately it cannot be diagnosed definitively without autopsy. That is the case with most neurodegenerative dementias. But there can be imaging features (e.g. areas of the cortex) or other clinical signs (e.g. hallucinations, disturbed sleep in LBD; personality change in FTD) that help point to a non-Alzheimer's dementia while the patient is alive.

Getting the right diagnosis for a subtype of dementia can be invaluable, first for the reversible kinds (e.g. wouldn't it be great if giving vitamin B12 could reverse memory impairment), but also to identify future potential complications. As an example, people with Lewy Body Dementia (LBD) and Parkinson's dementia must not be given anti-dopamine drugs, such as haloperidol, risperidone, etc. which are commonly given to help control unruly behaviors. These drugs can cause severe complications and even death, which they do not tend to do in some other dementia subtypes such as Alzheimer's.

Posted: Wednesday, July 10, 2019 7:45 AM
Joined: 3/6/2017
Posts: 2164

It can be important. 

My dad had mixed dementia. For years my mother blew off my concerns about dad's changes in personality and cognition until we had a crisis that ended in a trip to the ER associated with a Memory Center. Dad was given a working diagnosis of Wernicke-Korsakoff's based on history (mostly my mom's reporting; she saw this as a recently emerging condition). WKS is one of those conditions that can mimic dementia. In dad's case it was caused by a B1 deficiency related to alcohol abuse but it can also be related to bariatric surgery, eating disorders, cancer, HIV/AIDS. He could his first IV of Thiamine before he was even admitted. During his time in the hospital, they continued the IV Thiamine but the attending who took over, who took a history from me where I noted personality changes and confusion over memories as far back as 10 years said it was probably "just Alzheimer's" based on history, memory screenings and  MRI. Dad had been scheduled for a lumbar puncture to R/O prion disease based on my mom describing a sudden onset of symptoms. Dad was discharged to a SNF for PT and OT and turfed to the Memory Center for care. 

The 3rd neurologist from the Memory Center also ordered a PET scan to see how dad's brain took up glucose. He gave dad a mixed dementia diagnosis based on testing and history. During the time dad was in rehab, the combination of sobriety and Thiamine supplementation returned him to about Stage 4 for a time. Had he not had Alzheimer's and not continued to drink, he presumably could have lived out his remaining years in that state. 

Dad only took psychoactive meds for anxiety and behaviors. His last neurologist didn't feel secure in R/O FTD entirely.
Posted: Wednesday, July 10, 2019 6:44 PM
Joined: 7/12/2017
Posts: 1546

Be prepared for denial by the PWD, the doctor, etc.  Took me a few tries to get doctor to make the referrals for the tests.  Mom "looked" fine, and I had to battle her jerk doctor.  So start making a list of all the symptoms and sighs, and when the doctor asks questions, its okay to make corrections.  I stood a bit behind my mom and shook my head when doctor said, so are you still driving?  My mom, said yeah I drove here!  Nope

So be ready to have to, sadly, embarrass the person a bit because PWD have learned to figure stuff out just enough to see, okay.

Posted: Wednesday, July 10, 2019 8:37 PM
Joined: 12/4/2011
Posts: 18362

this will help;

Posted: Thursday, July 11, 2019 9:08 PM
Joined: 12/15/2012
Posts: 112

Trebizond I too thought that you could not get a definitive diagnosis without an autopsy and asked about that when my husband was diagnosed.  His Neurologist said that is not the case anymore.  Apparently they now have some advanced tests to see the plaques and tau proteins.  Hopefully they will soon be able to cure this awful thing.


Posted: Friday, July 12, 2019 6:40 AM
Joined: 6/24/2012
Posts: 519

So ask yourself why you need this diagnosis?  Some of the scans that would show taus and plaques are expensive and not covered by insurance and are done for research purposes mostly. So you could try some clinical trials that do it for free which you can find on this website.  But since there is no cure, diagnosis does not really mean much.  Memory issues can be addressed without a dx.  My mom has refused repeatedly to participate in any testing.  She refuses to go to any doctors about it.  She is polite but tells them that she is leaving and even when  a visiting Neuro psych went to her room she told him he was a very nice man but it was time for him to go.  Once the dementia begins their self awareness is gone so it's really hard to enlist their cooperation with any testing.   My mom would never do an MRI due to claustrophobia, even when she was well.  

Good luck.  

Posted: Tuesday, July 16, 2019 1:36 AM
Joined: 6/16/2019
Posts: 29

That's a lot of good information. I don't know what type of dementia she has but she does have a very large abdominal aortic aneurysm. She had a smaller one stinted last year and there is a 3rd one. She is 86 years old and had pneumonia spring of 2018. She was never able to regain her strength so was not a candidate for surgery. The last time I spoke with the nurse at the rehab center she said no medications had been changed and the doctor had not seen her yet. I will ask again tomorrow regarding a doctor and what the future plans are.
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