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Does anyone follow the various Dementia Stages scales and what has your experience been? Are they generally accurate?


Also, when you are diagnosed with Dementia, what type of doctor should you be seeing for your care? I ask because my dad was diagnosed by his general practitioner about 5 years ago, but he never recommended going to a specialist for care and I feel like we were not properly supported and counseled for the last 5 years. I just (last week) discovered the dementia stages scale and feel that would have been helpful information 5 years ago in terms of setting expectations and making plans! When my dad would do things we would wonder, "is this part of his advancing dementia?" And it might have been easier to convince mom to get help had we had scientific data to support where all this was heading!


Just wondering what others are experiencing around this kind of thing. It's a bit "too little too late", but maybe it will help someone else?


Thanks!

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I switched my mom with Alzheimer's from her General Practitioner to a Gerontologist about 7 years ago. The Gerontologist took her off a dozen unnecessary medications, gave her an MRI of the brain and confirmed that mom was suffering with Alzheimer's, as well evidence of damage from mini-strokes (which may have been caused by one of the meds she was taken off of). We were supported and they gave mom the very best care. They even cared about me - asking if I was OK and taking care of myself, they gave me information on resources to get a sitter if I needed one, support groups, etc. It made all the difference in the world for mom and our family. It was one of the best decisions for her care that I ever made. She passed away last year, and she is now at peace.

Wishing you the best.
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The entire health care system was practically useless for my mom, despite seeing neurologists who were focused on treating her recurring TIAs no one ever mentioned the word dementia - mind you at that point (91 yrs old) her symptoms were physical. Around the time mom's health declined suddenly we lost our GP and she languished in a no mans land of seeing whichever physician her clinic assigned that day, I learned to take everything we were told with a grain of salt (I was assured more than once that she was showing end signs 5 years before her final demise). By the time we found a full time doc mom was already in steep decline and it was all about symptom control and palliative care. EVERYTHING I know about caregiving, dementia, and living with frailty I learned on the internet, I can't imagine what I would have done without sites like this one.
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gdaughter Jan 28, 2019
System is the key word. Very sad. All of us are at risk of being "used". They system trains people /employees to churn the patient to make the most $$$ in spite of their claiming to be "non profit." I was riled up again today going t through old papers from my ER visit a couple years ago. From my arrival I described the situation the same way, pain in my hip that seemed to be spreading from around my back to my belly. It got logged in as "hip pain." They wasted my time (after letting me be in agony in the waiting room and then in a holding cubical before I was in the REAL ER area) by doing an x-ray of the hip which proved nothing. $300 out of my pocket right there for nothing. It was hours later when they did a CT and confirmed a kidney stone. (ka CHING). ANd it is very very sad as the neurologist explained, there is no money being generated in his area of expertise with two hour visits as he takes his time to get to know people and piece it all together.
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Whey would you resist putting a dementia patient on an antidepressant? It's probably the most useful move you can make.
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gmcrook Jan 16, 2019
Well that’s kind of my point. My mom hasn’t gotten good advice from Dad’s doctor.
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Maybe the refusal of an antidepressant is generational? My parents were from the "shake it off and get out of bed and man up" generation! I had to get Ativan when my folks moved in with us, and now my mom is on "happy pills" for depression since dad passed, and she is living with us instead of living the retirement she planned for. She is not happy about the pills.. I assure you! But they do help. As for the stages of ALZ,, that timeline is fluid and everchanging for each person. The stages slide back and forth,, sometimes overnight. My mom and (passed) dad saw my GP, who is a geriatric specialist and has done a great job with them.
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My mom has been on antidepressants for about 2 years. I see no results. She was never depressed a day in her life. When she received the dementia diagnosis, her pcp said dementia causes depression. She was also prescribed donepezil. She’s gotten worse. Once this started, about 3 years ago, the meds were prescribed. She’s had 3 falls. None required hospitalization, one nurse said anti depressants may increase her fall risk. I don’t know. I do know , it takes a long time for her to recover from a fall. My mom was working / driving / bathing/ cleaning/ socializing even up to 4 years ago. I asked her dr when dementia was first diagnosed, is this Alzheimer’s? Her response was I don’t know. I took her to a phd in neuro psych. That was a long day for her about 3 hours. That was about 6 months before she was diagnosed by her pcp with dementia. The phd said she had “mild cognitive impairment “. And that could stay like that for a long time or get worse. Her MCI did develop into dementia.
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Judysai422 Jan 26, 2019
Sounds a lot like my mom. MCI seems to be the catch phrase of the decade. Mine does not appear to have AD, but rather VD. she has had all the tests done by neurologist, psychologist with overall, ongoing management by gerontologist.
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Hi there, I'm surprised your GP didn't refer you to a neurologist or gerontologist, even psychiatrist. While anyone can administer the basic cognition test questions, a specialist such as the above (especially neurologist or gerontologist) will examine them at length and can fill you in on where on the progression scale they think they might be, things to look for, and what to possibly expect next. They will question you at length about the patient's current behavior- that is a better indicator to them of the patient's current baseline than anything the patient themselves can tell them. Then they'll likely discuss meds that might help with current symptoms. Most importantly, as others have noted, every dementia patient is an individual, so person A who is in the "late early" stage and person B in the same stage may exhibit a different set of behaviors, and that those behaviors can change for that same person from day-to-day. Some meds are great for one person, not so much for another, They have "good days" and "bad days". See if you can find a good neurologist, and then keep educating yourself! The info you'll find here in the forum from the wonderful people going through the exact same thing as you are will probably be a more valuable to you than even the BEST physician.
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gmcrook Jan 16, 2019
Thanks. I am realizing (too late) that I should have been more involved in dad’s care for the past several years. I didn’t know, what I didn’t know....
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This is our experience: My mom's pcp of many years was aware of her forgetfulness. repeating herself and did nothing. My mom thought the world of him. I had been in turmoil for a while over it knowing there were meds available. WELL God on our side, that DR took early retirement and I took her to my pcp who immediately picked up on her mental state. HE asked me questions, then my mom. He immediately started her on meds. and a slow pace with rechecks frequently. He through the years has started to focus on geriatrics. In my opinion, if your DR is not doing anything. move on. I wish I had sooner. But at 94 going on 95 she is doing much better. I believe a regular MD who can detect and use medication, and require 3 to 6 mo check ups is fine. Just remember if you are not seeing an MD who stays on top of it... seek another physician.
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Levans2008 Jan 26, 2019
Perfect answer! I am faxing that with my neurologist now. Its been 3 years since a brain scan done .asked him to do another and he refused....Being in the med. Field if you are not getting help from a first doctor move on.
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Florida has 16 Memory Disorder Clinics that are affiliated with experts in the field. A dementia diagnosis is not enough. It is a group of symptoms that can be caused by many, many things. Treatment is determined by what has caused it. In Brevard County our Memory Clinic we work with geriatricians that specialize in Memory. They see only Memory patients over 65. We do comprehensive Memory evaluations and provide recommendations based on the specific diagnosis. Social workers and pharmacy people are here to support the families. We have classes and trainings for families and those working with this population. Look up your local or state agency on aging.
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gmcrook Jan 17, 2019
Wow! That sounds fabulous! Wish we had that here!
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My husband had vascular dementia/ multiple mylompia and his primary physician lead me down a rabbit hole for two years.
I was lead out of the rabbit hole by getting my husband to a Geriatric Physician and a complete geriatric exam. Geriatric health as a primary assessment is not discussed enough in the senior community.
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I think much depends on each person/family and like they say: location, location, location! Location because for so many reason no one can go traipsing all over the place to find another pool of professionals. I think the "scales" that get published are a bit ambiguous and not a whole lot of help..but clearly it helps to know what monster you are dealing with and how it progresses as far as planning and understanding. So too, does age at the time the diagnosis is made. I think, for many, when we look back, the signs were there long before something is done about it or it is identified officially. While there are similarities, there are differences, and no one experiences exactly the same. For our family some things, but not all, were being noticed. Lots of little things...errors in baking/cooking; extended time for routine bookkeeping...and then mom (and dad) went to visit my out of state sister. A plane trip that went fine...but within hours came a call from my sister wondering how I could ever think mom was up to a trip (later we discovered how she had not packed for either of them adequately) and that mom was saying she wanted to come home...dementia speak for being stressed and overwhelmed. When I looked up some basic info on Alzheimer's I found mom really had a majority of the descriptors right under our noses. I contacted their family MD who I came to just love...he did a mini mental exam the next time she was in and got back in touch and was surprised himself because she had been so cool and "normal" he'd never realized what was going on. I knew who one of the best neurologists in town was, but it was a 4 month wait for an appt. On that day I called prior with a routine question and learned someone had goofed and sent a duplicate info packet to MY MOTHER. She immediately called and cancelled the appt, 4 months earlier when it was made! We still got in not long after. She was about 94 at that point. With the history provided there really was no reason we all believed, to subject her to testing, and even the MD, at this point, felt limited benefit to none with any of the drugs. The Alzheimer's Assn can be a great resource, and although I am not a group person, the group for adult children has been very good for me...every group is different...but if nothing else, these are the folks who have already most likely interacted with the medical community and they know who is good and who isn't. ANd while the assn. officially really can't suggest anyone, fellow group members share truthful info freely. For me, I just try to stay calm and take it one day at a time, grateful for the level of functioning she has. I come away from the support group meetings very grateful because I know it could be so much worse.
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