which MD speciality would be best for a dementia patient?

Posted by DanL @tunared, Aug 20 3:21pm

My spouse was diagnosed with MCI first, then she progressed to dementia a few years ago, otherwise she is physically very healthy. Yes, she did go through all of the tests for the diagnosis (including a PET scan). She has been under the care of a neurologist and seeing him every 6 months. she has also tried all the current drugs but only mematine (not the plus) seems to be working. she does not want an infusion. My question is: which MD specialty is best for her? neurologist? geriatrician? or some other specialty? I do not want an MD who treats her as a guinea pig but a valuable family member. Yes, we have met a few MDs who wanted to use her as a guinea pig.

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I can’t imagine going through the journey of AD or Dementia without a neurologist who specializes in this area. We also have a clinical geriatric psychologist because son has unusual neurological concerns due to his seizure disorder and migraines. He also was born with congenital brain damage. There are behaviors and symptoms outside of typical AD and mixed dementia. In general I would completely recommend a neurologist who specializes in this, not a general neurologist or family doctor. It’s really important the doctor be familiar with all the research and new pharmacology information coming all. And if your LO also takes medications for other conditions, a neurologist is more knowledgeable about drug interactions. Keep in mind over time, there will be changes that require different treatments and modifying what you do.

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Specialists are good, especially with the initial diagnosis, but a primary care doctor is important because that’s who provides the majority of care. I’d look at which provider you can rely on to see you last minute when there’s a UTI, rash, virus, etc. Do they have good office hours, understanding and accommodating staff for to someone who has dementia? Do they have ample parking, pull up covered entryway, for when it’s raining? Are they responsive to your calls or portal messages. It’s stressful when a loved one with dementia needs help because the ER is a place that is usually very upsetting to a person who has dementia. Some people use Doctors Making House Calls, which are helpful for patients who struggle with mobility or issues leaving their home.

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@celia16

Specialists are good, especially with the initial diagnosis, but a primary care doctor is important because that’s who provides the majority of care. I’d look at which provider you can rely on to see you last minute when there’s a UTI, rash, virus, etc. Do they have good office hours, understanding and accommodating staff for to someone who has dementia? Do they have ample parking, pull up covered entryway, for when it’s raining? Are they responsive to your calls or portal messages. It’s stressful when a loved one with dementia needs help because the ER is a place that is usually very upsetting to a person who has dementia. Some people use Doctors Making House Calls, which are helpful for patients who struggle with mobility or issues leaving their home.

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celia, she has a good PCP, very understanding and available if necessary. her initial diagnosis was years ago. I'm wondering if she even needs a specialist? Doesn't seem like they can do anything to help her and she just gets upset going to them.

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@cobalt

I can’t imagine going through the journey of AD or Dementia without a neurologist who specializes in this area. We also have a clinical geriatric psychologist because son has unusual neurological concerns due to his seizure disorder and migraines. He also was born with congenital brain damage. There are behaviors and symptoms outside of typical AD and mixed dementia. In general I would completely recommend a neurologist who specializes in this, not a general neurologist or family doctor. It’s really important the doctor be familiar with all the research and new pharmacology information coming all. And if your LO also takes medications for other conditions, a neurologist is more knowledgeable about drug interactions. Keep in mind over time, there will be changes that require different treatments and modifying what you do.

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our local pharmacist has been more helpful with interactions then the specialists she has been seeing. luckily, she does not have any other conditions that require drugs.

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PCP is good overall, especially if geriatric specialist, then neurologist/psychiatrist might be helpful.

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I'm addition to a neurologist, my husband sees a geriatrician whose practice is wonderful. Every 6 months the geriatrician or an Advanced Practice Registered Nurse see him, test him, chat with him and separately, me, then we're seen together. It's a 45 minute appt. Highly recommend geriatricians as they seem to provide a more holistic approach to guiding a patient along his or her unique Alzheimer's journey.

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These are really good experiences folks are sharing. In our area the specialists maintain close contacts with PCP/family doctor. One thing great about our PCP is he set up a standing order for urine specimen testing and gave me 4 tubs. I can get the sample at home and drive it to a lab a couple miles from here and it’s a STAT order to get results. Because UTI is so darn common with incontinence the doctors always want to rule it in or out immediately. He’s had 4 times of acute delirium from this so we know it’s essential to treat immediately with antibiotics.

Here’s the thing I try to convey most, things can and do change as the decline keeps going. That’s why I am so glad we have the PCP and specialist. Just want to let caregivers know to be prepared as the changes come.

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@crankyyankee

I'm addition to a neurologist, my husband sees a geriatrician whose practice is wonderful. Every 6 months the geriatrician or an Advanced Practice Registered Nurse see him, test him, chat with him and separately, me, then we're seen together. It's a 45 minute appt. Highly recommend geriatricians as they seem to provide a more holistic approach to guiding a patient along his or her unique Alzheimer's journey.

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I can't remember the last time an MD or any other medical person spent 45 minutes with her or me. WOW!

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@cobalt

These are really good experiences folks are sharing. In our area the specialists maintain close contacts with PCP/family doctor. One thing great about our PCP is he set up a standing order for urine specimen testing and gave me 4 tubs. I can get the sample at home and drive it to a lab a couple miles from here and it’s a STAT order to get results. Because UTI is so darn common with incontinence the doctors always want to rule it in or out immediately. He’s had 4 times of acute delirium from this so we know it’s essential to treat immediately with antibiotics.

Here’s the thing I try to convey most, things can and do change as the decline keeps going. That’s why I am so glad we have the PCP and specialist. Just want to let caregivers know to be prepared as the changes come.

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Your very lucky to have such a good PCP. my wife's previous PCP was in a very large practice and when she was having issues I called the practice and over a span of 3 weeks, I called and left a message asking for help (during the day and I had no other choice but leave a message), then I went to the office and spoke to the receptionist and was told not to expect a callback within 2 weeks. When I told her it's been 3 weeks, all she said was keep calling. That's when I went looking for a different PCP for my wife. 🙁

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@tunared

Your very lucky to have such a good PCP. my wife's previous PCP was in a very large practice and when she was having issues I called the practice and over a span of 3 weeks, I called and left a message asking for help (during the day and I had no other choice but leave a message), then I went to the office and spoke to the receptionist and was told not to expect a callback within 2 weeks. When I told her it's been 3 weeks, all she said was keep calling. That's when I went looking for a different PCP for my wife. 🙁

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Our Primary’s office is open 7 days a week (weekdays until 8;p.m.) weekends 8-5) , except major holidays. Walk-ins accepted anytime. You’ll likely see a PA, but on weekends lately, you see an MD. It’s a comfort to have the option of being seen, if you need to and not having to go to ER.

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