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How do you get a DX for Alz or Dementia?
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.
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.
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.
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.
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.
this will help;
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.
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.