Is a formal diagnosis needed?

rwood5093ood · November 12

How important is a formal diagnosis? My best guess is she's stage 4 or 5 from what I read. but does ALZ vs dementia, vs old age really matter? she is 82, still living on her own, though that needs to change very soon. she no longer drives, and the most recent development is her losing track of her phone, not knowing how to use it, so she is basically losing the primary way she communicates with everyone.

Her PCP is not really doing anything. She gives questionnaires, and we fill them out, but she doesn't seem to review them, has never offered a neuro consult, or any sort of testing other than a genetic test to see if MIL carries the dementia genes.

I feel like a diagnosis will help open up potential treatments, even if it will not really affect the outcome. We'd love for her to feel better, or at least sleep better! Plus,we feel lost and I wish we had some sort of medical provider helping guide us.

Right now, her PCP manages her normal meds, her cardiologist does his bit, her eye dr handles her dry eyes, and she goes to the dermatologist, so we hate to introduce a new dr to the mix, but it just seems like there might be a better way of doing it all, though I'm not sure what 'it' is.

Do we need to push for some sort of testing or a referral so we can get an actual diagnosis? I assume the answer is yes, but I need to convince my husband so he can really understand the benefit.

Thanks!

pamu · November 12

I had to ask my mother's PCP for a neurology referral. The neurologist gave her a couple cognitive tests and confirmed her dementia status. He did not prescribe her any medications. She had already had a scan shortly before due to an ER visit but he did not want to order further tests (MRI). My mother has since been admitted to MC. It would be helpful for your mother to begin seeing a geriatric psychiatrist. They can prescribe medications and help manage her symptoms during her dementia journey. Be sure you are an authorized to speak with her doctors if you're not already.

JJ401 · November 12

If there are not powers of attorney for health and finances already in place, get them now. You will need them in the future. You need durable, not springing, POAs. My DH’s doctor also had him sign a release to talk to me.

Go into the exam room with her, if you are not currently doing so. You cannot rely on her giving the doctor accurate answers.

Many people find dropping off a note before the appointment, detailing your concerns, and/or asking for a referral, is helpful. If she has had the genetic test, do you know the results? If not ask. The results can help determine whether the new treatment options are a good choice. The new infusion treatments are being prescribed (here) by neurologists, not primary care. Many primary doctors won’t prescribe any meds for dementia. Ask for a referral.

Sign her up, on the post office site, for informed delivery so you can check for important incoming mail. Important mail can be easily misplaced. If you don’t know it’s there, you can’t look for it.

This is a journey none of us wants to be on. But, here we are. This site is a great resource. It has helped me greatly. Doctors not so much. Come here. Read. Ask questions. Members here are great at telling what has worked for them.

H1235 · November 12

Welcome. My moms pcp was kind of clueless and I had to insist on a referral to a neurologist. The neurologist exam was about 2 hours and ruled out Alzheimer’s, leaving the possibility of vascular dementia or Lewy body dementia. She was referred to another neurologist who ordered blood work, an mri and then diagnosed her with vascular dementia. Mom was on board with these appointments, which made things easier. We went back every 6 months for a while. They said it was really up to us if we want to continue with follow ups. They didn’t prescribe any medication. I think the good that came from the diagnosis was that I had an answer (this was important to me) and other treatable causes were ruled out. We eventually moved her to Al where there was a visiting doctor that seemed more willing to prescribe medication for her symptoms and was just more knowledgeable about dementia. One of the first recommendations the neurologist made was to see a lawyer and get a DPOA done as soon as possible. If there is a DPOA that needs to be activated then a diagnosis is important for that. Dementia is an umbrella term. Alzheimer’s, vascular dementia and Lewy body dementia are different kinds of dementia. There are some minor differences. Average life expectancy is different ( but you never really know anyway), I think Lewy body can have move movement related issues, vascular dementia tends to progress in steps and does not always have the memory issues common with Alzheimer’s in the beginning. I hope that helps some.

Is a formal diagnosis needed?

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