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V. Complaints. Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
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So confused, I can understand your confusion, but as you get more exposure to this new world you will understand more. The MMSE is often used to see if there is dementia, but it seems to be mostly to help identify Alzheimers. Many doctors haven't even heard of some of the other dementias....case in point, our doctor and FTD. If someone scores normal on the MMSE they may get brushed off as being okay and other dementias overlooked. Get her to a neurologist for testing. She's going to get an MRI, maybe a PET scan and some more in depth testing. Don't stand for this medical brushoff from that doctor. Go deeper.
The best! My mom's exam took about an hour and a half. This doctor was very experienced, and they knew how to "trick" my mom into being examined because prior to, she would not but fight it tooth and nail. The doctor knew exactly how to work with her alone, it was the best answer we got clinically even though we knew she was advanced Alzheimer's. So we finally had some answers on how to deal with her, what to expect and reasons why for certain symptoms and behaviors. My mom is gone now but I would recommend this doctor to anyone who needed a neurologist (she was also a psychiatrist).
Thanks to everyone for your replies and insight. This is just a very confusing time for me. Back in June my Mom had an appointment with a neurologist after having an MRI. He did the mini status exam and asked the questions and when we left his words to her were you don't have dementia. She was back in the ER later that week, my two sisters live with my Mom, they aren't caretakers...just mostly takers as neither of them work or contribute to the household. My aunt received a phone call about my mom being in the hospital 19 hours after she was taken in, I never received a call. My Mom has diabetes and I believe this episode had to do with low blood sugar, but no one seems to believe me. My sisters were able to get a different neurologist to see her while she was at the hospital and they were able to fill his head with all the things they believe. At her follow up appointment with they doctor she saw in the hospital, she also was given another mini status exam and scored 28 out of 30.
Fast forward to the middle of August and her primary doctor has a family consult with my Mom, myself and my two sisters. We were told she should sell her house, move in with me temporarily while she looks for assisted living and that all doctors agree that she has dementia. And this all completely opposite of what her primary doc told me on the phone after receiving the notes from the neurologist who saw her in the hospital.
I apologize for my reply being all over the place...but I am so confused. I feel so lost...I want so badly to help my Mom but I don't get along with my sisters...they view me as the enemy who is trying to destroy their perfect life of living off my Mom.
Akasha; I hate to disagree with anyone, but I disagree with you. Not all neurologists and neuropsychologists are out to line their own pockets. I'm sorry that you've had a bad experience.
from my experience be very leary when it comes to Neuro's and their mini mental tests I have had both of my parents tested and one was court ordered and the other the same neuro went into the nursing home behind my back with both parents she stated they had dementia . little warning " A mini mental test is not a diagnosis tool for anything especially NOT Alzheimer or Dementia" If there is not an MRI proving there is grey matter , there is no Dementia it is a trick and a ploy. I know my parents are right now some place they do not want to be but were deemed incompetent and there is not a thing I can do about it. when you think these people are there to help no they are their to destroy to line their own pockets. and take everything from you and your family.
Ba8alou - for my mom, the gerotologists, neurologist & neuropsychologists were all within the same clinical program at the medical school. With the gerontologist (internist) being the hub for co-ordinating care. They all had their own private practices as well. My mom got in via a referral from her othropedic surgeon who is on faculty at the medical school and one of the otho referral guys for the program. He required that she be evaluated for cognitive ability for rehab before he would do her rotor cuff surgery. She pretty well sailed through that. But she got a follow-up call to participate in a long term study looking at dementia issues for bilingual advanced elderly. Was incredibly worthwhile.
Really if anyone asks for your elder to participate in a clinical study and you / they have the ability to get them there, please do so.
You do not have to expect anything. She will be doing testing for about two hours, so go run some errands or treat yourself. It tests memory, puzzles, math, could have an EEG (brain waves), drawings. All to see where she falls on the dementia scale. Don't worry about it, she has to do all the work! I do this every two years for Mayo Clinic as an Alzheimer's research subject.
Big difference between a neurologist and a neuropsychologist. Neurologist is an MD and does clinically based tests. Neuropsychologists generally have PhD and do cognitive/reasoning/memory testing. Different fields, different training, different testing. Neuropsych is what takes a long time.
We had a great experience seeing a neurologist in a teaching hospital in the memory dept. I was never asked to leave the room, like others have mentioned, and mom benefitted so much from the appointment. One of the best outcomes was the referral to physical therapy for 2 months that rest helped mom build back strength and muscle. The testing wasn't the rigorous 4 hour kind, but a much more intensive assessment that didn't make her upset or stressed. BTW- the drive was 1 hour for us as I checked on various programs and this is one of the best in my area (U of K Neurology Dept) with top notch doctors. We go back in a couple of weeks. It took 2 months to see him, but well worth the wait. Make sure to ask your neurologist to have blood tests at your regular doc if there's a long wait. That was the one thing we didn't do and waiting in the overly crowded waiting room was very long - we won't do that next time. The CT scan was very quick. Good luck and I hope your neurologist specializes in memory studies or dementia care.
Your mom has probably already gotten the mini-mental testing done at her referring doc's. Mini-mental are the ones with the 3 word memory test & the clock drawing. For my mom, the neuropsch involved testing was over a 5 year period. Now her MDs at the time were affiliated with the medical school and so she was involved in a dementia study of 90+ yr olds. Started when she was living at home, then when she moved to IL and stopped when she went into NH. It was immensely helpful. Once she hit a certain # in testing, it got repeated and then she was discharged from the program as she had plateaud out on changing her testing numbers. I was in an adjacent room watching the testing via video feed with medical students and the gerontology residents. It was really heart wrenching seeing mom work really hard to answer the questions and her frustration at not being able to process.
You will likely be interviewed. If you can detail specific "incidents" that have you concerned it could be helpful. Dementia signs fall in the groups below. Signs of Dementia: Recent memory loss - ask you the same ??’s over & over. Difficulty performing familiar tasks - cook a meal but forget to serve it. Put on pants but not panties. Problems w/language - may forget simple words or use the wrong words. They can’t finish a sentence. (If their bilingual, this can be an issue for testing.) Time & place disorientation - get lost on their street. Can't get out the the parking lot of the grocery store they have gone to for decades. Poor Judgement - forget simple things, like to put on a coat before going out in cold weather. Problems with abstract thinking - Classic example is balancing a checkbook, people w/dementia may forget what numbers are and what has to be done with them. Misplacing things – Putting things in the wrong places like iron in the freezer or a wristwatch in the sugar bowl. Changes in mood-fast mood swings, going from calm to tears to anger in a few minutes. Irrationally suspicious, paranoid or fearful. Loss of initiative-may become passive
DEMENTIA TESTS: 3 main tests. Different yet similar…. 1. Folstein aka Mini Mental State Exam (MMSE) - 30 point test. Looks at math, memory, orientation, basic motor skills. MMSE is copyrighted & needs training to do, so usually done by gerontology neuro MD’s, or trained staff. Score is 27 or more=normal; 21-26 mild; 10-20 moderate; under 10 severe. Folstein has issues for bilingual persons - even if they were bilingual when children.
2. Mini-Cog: a 3 item recall & a clock drawing test. 2 -3 minutes to do. Should not be used alone as a diagnostic. Usually used to base a referral on. Most geronotolgists do the mini each visit to document changes.
3. Memory Orientation Screening Test (MOST): 1. Memory -3 word recall; 2. Orientation - to year, season, time, month etc.; 3. Sequential – memory for a list of 12 items; 4. Time – organization and abstract thinking using a clock face. Gives a score from 0 – 29. Highly reliable.
Other tests: If Frontotemporal dementia is suspected, can have an Addenbrooke’s Cognitive Exam done. Some places will do a motor skills ability score - like the laundry basket sequencing activity.
Not all dementias are the same: orientation, attention and memory are worse in ALZ; while language skills, ability to name objects and hallucinations are worse in other dementia’s.Data analysis found the MOST to be more reliable over time and more accurate in identifying cognitively impaired patients than either the Folstein Mini Mental State Exam or the Mini-Cog. The MOST also measures changes in a patient’s memory over time. This permits the doctor to identify progressive loss or positive responses to treatment. Having a baseline tests done & repeated is really helpful to be realistic about what careplan to take. Same with scan on brain shrinkage & what part of the brain. My mom got tests & scans done annually for 5 years for the study group she was in, we were very fortunate to be in it. If they suggest that your mom participate in one and you have the ability to get her to the appointments and commit to a 2 - 3 year study, please do so. Good luck and take your iPad or kindle too.
Pam is absolutely right about the cognitive function tests - the best thing you can do is make yourself scarce. Even your being in the same room is likely to distract your mother because she'll keep looking to you instead of concentrating as well as she can on the test.
I don't know if our Memory Clinics (I wish they wouldn't call them that because they're actually Brain Function Clinics, but anyway) work to quite the same system, but the other thing they did was interview us together (with my mother's agreement). This was partly to get accurate information about how she was functioning generally; partly to gauge how much she understood of what the clinic was all about and how much she wanted to know about her own condition; and partly to give me their assessment of how her dementia was progressing.
My experience was that it was interesting and useful, but yes do take a good book!
If you're concerned about mobility or hearing or sight or any practical issues like that, just flag them up to whoever takes charge of your mother - these people know what to do.
Allot of testing which they do without you present.They test so many areas takes hours.I suggest you 1) find a cafeteria 2) a fast food place 3) give them your cell phone number and go shopping 4) bring a long book( "War and Peace) might actually get your through the day...they write a very lengthy long detailed report .They test memory, reading skills, reasoning etc and so forth.But it is necessary and you will be relieved after it is all done and the conclusions are firm and complete.You can refer back to it in the future.Good luck
We took my mother for an evaluation to diagnose her dementia. It took 4 hours with a lunch break. They write a lengthy and detailed report, which was later used as evidence for guardianship.
My Mom's was a couple of days worth of tests, we no longer see her after the initial diagnosis and a few follow up appointments we decided her geriatric doctor could handle the meds, and neuro p could not offer much more unless we wanted it.
My husband went through this process. Since he was still driving, he went alone, but ba8alou's answer is accurate. Al's testing was quite extensive and took two visits. I was "allowed" into the office for the followup visit and the conclusions were sent on to his neurologist. It didn't really prove anything, but aided in the eventual diagnosis.
A neuropsych is a several hour battery of tests, not just of memory but of reasoning, problem solving and the like. You will not be present. You may be asked some questions separately about your mom's mental state and ability to manage everyday tasks. Bring something to read and be prepared to hear lots of complaints afterwards about how stupid the questions were. Make sure she has a good breakfast, goes to the bathroom beforehand and have her bring a sweater in case the room is cold. After several weeks, you'll be asked to attend a debriefing session with your mom. In other words, you probably won't get immediate feedback; these are tests that have to be scored and analyzed.
You expect to sit in a waiting room for four hours. It is not the sort of thing they want you there for. Too many patients will look to their family member for answers. Even for the mini-mental, mom kept looking at me and the MD was relieved that I kept my mouth shut.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Fast forward to the middle of August and her primary doctor has a family consult with my Mom, myself and my two sisters. We were told she should sell her house, move in with me temporarily while she looks for assisted living and that all doctors agree that she has dementia. And this all completely opposite of what her primary doc told me on the phone after receiving the notes from the neurologist who saw her in the hospital.
I apologize for my reply being all over the place...but I am so confused. I feel so lost...I want so badly to help my Mom but I don't get along with my sisters...they view me as the enemy who is trying to destroy their perfect life of living off my Mom.
Really if anyone asks for your elder to participate in a clinical study and you / they have the ability to get them there, please do so.
Your mom has probably already gotten the mini-mental testing done at her referring doc's. Mini-mental are the ones with the 3 word memory test & the clock drawing. For my mom, the neuropsch involved testing was over a 5 year period. Now her MDs at the time were affiliated with the medical school and so she was involved in a dementia study of 90+ yr olds. Started when she was living at home, then when she moved to IL and stopped when she went into NH. It was immensely helpful. Once she hit a certain # in testing, it got repeated and then she was discharged from the program as she had plateaud out on changing her testing numbers. I was in an adjacent room watching the testing via video feed with medical students and the gerontology residents. It was really heart wrenching seeing mom work really hard to answer the questions and her frustration at not being able to process.
You will likely be interviewed. If you can detail specific "incidents" that have you concerned it could be helpful. Dementia signs fall in the groups below.
Signs of Dementia:
Recent memory loss - ask you the same ??’s over & over.
Difficulty performing familiar tasks - cook a meal but forget to serve it. Put on pants but not panties.
Problems w/language - may forget simple words or use the wrong words. They can’t finish a sentence. (If their bilingual, this can be an issue for testing.)
Time & place disorientation - get lost on their street. Can't get out the the parking lot of the grocery store they have gone to for decades.
Poor Judgement - forget simple things, like to put on a coat before going out in cold weather.
Problems with abstract thinking - Classic example is balancing a checkbook, people w/dementia may forget what numbers are and what has to be done with them.
Misplacing things – Putting things in the wrong places like iron in the freezer or a wristwatch in the sugar bowl.
Changes in mood-fast mood swings, going from calm to tears to anger in a few minutes. Irrationally suspicious, paranoid or fearful.
Loss of initiative-may become passive
DEMENTIA TESTS: 3 main tests. Different yet similar….
1. Folstein aka Mini Mental State Exam (MMSE) - 30 point test. Looks at math, memory, orientation, basic motor skills. MMSE is copyrighted & needs training to do, so usually done by gerontology neuro MD’s, or trained staff. Score is 27 or more=normal; 21-26 mild; 10-20 moderate; under 10 severe. Folstein has issues for bilingual persons - even if they were bilingual when children.
2. Mini-Cog: a 3 item recall & a clock drawing test. 2 -3 minutes to do. Should not be used alone as a diagnostic. Usually used to base a referral on. Most geronotolgists do the mini each visit to document changes.
3. Memory Orientation Screening Test (MOST): 1. Memory -3 word recall; 2. Orientation - to year, season, time, month etc.; 3. Sequential – memory for a list of 12 items; 4. Time – organization and abstract thinking using a clock face. Gives a score from 0 – 29. Highly reliable.
Other tests: If Frontotemporal dementia is suspected, can have an Addenbrooke’s Cognitive Exam done. Some places will do a motor skills ability score - like the laundry basket sequencing activity.
Not all dementias are the same: orientation, attention and memory are worse in ALZ; while language skills, ability to name objects and hallucinations are worse in other dementia’s.Data analysis found the MOST to be more reliable over time and more accurate in identifying cognitively impaired patients than either the Folstein Mini Mental State Exam or the Mini-Cog. The MOST also measures changes in a patient’s memory over time. This permits the doctor to identify progressive loss or positive responses to treatment. Having a baseline tests done & repeated is really helpful to be realistic about what careplan to take. Same with scan on brain shrinkage & what part of the brain. My mom got tests & scans done annually for 5 years for the study group she was in, we were very fortunate to be in it. If they suggest that your mom participate in one and you have the ability to get her to the appointments and commit to a 2 - 3 year study, please do so. Good luck and take your iPad or kindle too.
I don't know if our Memory Clinics (I wish they wouldn't call them that because they're actually Brain Function Clinics, but anyway) work to quite the same system, but the other thing they did was interview us together (with my mother's agreement). This was partly to get accurate information about how she was functioning generally; partly to gauge how much she understood of what the clinic was all about and how much she wanted to know about her own condition; and partly to give me their assessment of how her dementia was progressing.
My experience was that it was interesting and useful, but yes do take a good book!
If you're concerned about mobility or hearing or sight or any practical issues like that, just flag them up to whoever takes charge of your mother - these people know what to do.