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When I read this forum everyone seems to know what type of dementia they are dealing with. When I asked my mom's doctor what type of dementia it was he didn't have an answer. He just said it didn't matter since it wasn't curable. Is that normal?
Just as you would see a specialist for other issues, I would recommend going to a neurologist who focuses on dementia. My husband’s PCP thought he had Parkinson’s(based solely on some mild upper extremity rigidity and disregarding other symptoms I mentioned). He did still recommend a neurology consult, which I would have scheduled anyway.
The neurologist felt that he had likely Lewy Body disease, which is what I suspected. Fortunately for both of us, his cognitive/behavioral status was fairly stable during his last year but it was still helpful for me to know what we were dealing with.
All types are life-limiting & progressive. Sadly not curable as the Doctor said. So on one hand, no it doesn't matter *from the Doctor's point of view*
However, on the other hand, knowing the particular type of dementia *might help family*.
The most common type of dementia is Alzheimer’s Disease. Many people know someone, or have seen movies etc & expect memory problems. Other types of dementia can show more deficits in other ways or have personality changes, especially at the begining. There kinds of behaviour can be very challenging & having a specific support group, others that understand, could be a real help to family.
You don't HAVE to get a label.
But if you want to, usually a specialist is required to diagnose (eg Neurologist or Psychiatrist). Sometimes family don't bother with a diagnosis 'type' if finding or funding a visit to a Specialist is too hard. That decision can be the main caregiver/s - if they think it will help them.
A neurologist should be able to at least narrow it down to one or two of the dementias as there are tests such as MRI's that show several of them. And often ones symptoms will also help diagnose what type of dementia one has, but because there are often more than one dementia involved it can be harder to diagnose. Plus many doctors don't know enough about dementia themselves yet, as there are so many different ones... so there's that. But your moms doctor was right, there is no cure and all dementias lead to death in one way or another, so the best thing you can do now is to educate yourself more on this horrific disease, so you will be better prepared for what lies ahead for your mom. I wish you well as you take this difficult journey with your mom.
IMO its important to find out what type of Dementia a person has because of Medications. Lewy Body (I think it is) has similar symptoms to Parkinsons. I can't remember how this goes but its something like you can't give a medication meant for Lewy Body to a person suffering from Parkinsons. So you really need to know whatbyou are dealing with.
Well, you may take my brother's FULL diagnosis as a "for instance" if you will. It was "probable early Lewy's Dementia by symptoms". The answer here is that we are getting BETTER at being able to tell types. When I was a young nurse it was "senility". We are a long way from that now I am 82.
To get your best "idea" of the type you would need a full workup by a neuro-psyc consult; feel free, if you are POA, to ask the patient's MD for a referral. And the response that there's nothing to be done about it is likely true in one sense, while in another there is much you can do to control things better if you understand what to EXPECT, and Alzheimer's progresses in a much different manner than frontal temporal dementia. Some dementias are notorious for hallucinations that are very real. Some dementias are notorious for outbursts of anger and paranoia.
I invite you to explore the internet which is just full of things to tell you about each and every dementia. Look up "Type of Dementia". Look up "progression of _________specific dementia" . Look up "symptoms of ___________type" and you will see the variety.
That is a rather "old fashioned" response from your MD. Today we want to know what we can know in order to try to protect and predict and have some few ideas of what to expect. The sad truth is with any dementia, expect the unexpected. But it helps to know what we can.
Sadly the best way to diagnose type is done when it no longer matter: it's an autopsy after death.
They can see the residual effects of strokes with an MRI. But, that's not enough info to diagnose what kind of dementia is manifesting. Getting a diagnosis of what kind of dementia your dealing with is an interesting process in itself.
In our case, the PCP referred us to the neurology dept. After seeing the Neurology DR. they scheduled a three hour test for my wife. That 3 hour test was strictly a verbal skills evaluation. They quantified things like recall response times, word substitutions etc. Based on the results of all those kinds of parameters it indicates to them what specific part of the brain is actually damaged. Knowing what part of the brain is damaged will indicate what the highest probability cause is and a diagnosis.
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.
The neurologist felt that he had likely Lewy Body disease, which is what I suspected. Fortunately for both of us, his cognitive/behavioral status was fairly stable during his last year but it was still helpful for me to know what we were dealing with.
However, on the other hand, knowing the particular type of dementia *might help family*.
The most common type of dementia is Alzheimer’s Disease. Many people know someone, or have seen movies etc & expect memory problems. Other types of dementia can show more deficits in other ways or have personality changes, especially at the begining. There kinds of behaviour can be very challenging & having a specific support group, others that understand, could be a real help to family.
You don't HAVE to get a label.
But if you want to, usually a specialist is required to diagnose (eg Neurologist or Psychiatrist). Sometimes family don't bother with a diagnosis 'type' if finding or funding a visit to a Specialist is too hard. That decision can be the main caregiver/s - if they think it will help them.
And often ones symptoms will also help diagnose what type of dementia one has, but because there are often more than one dementia involved it can be harder to diagnose.
Plus many doctors don't know enough about dementia themselves yet, as there are so many different ones... so there's that.
But your moms doctor was right, there is no cure and all dementias lead to death in one way or another, so the best thing you can do now is to educate yourself more on this horrific disease, so you will be better prepared for what lies ahead for your mom.
I wish you well as you take this difficult journey with your mom.
The answer here is that we are getting BETTER at being able to tell types. When I was a young nurse it was "senility". We are a long way from that now I am 82.
To get your best "idea" of the type you would need a full workup by a neuro-psyc consult; feel free, if you are POA, to ask the patient's MD for a referral. And the response that there's nothing to be done about it is likely true in one sense, while in another there is much you can do to control things better if you understand what to EXPECT, and Alzheimer's progresses in a much different manner than frontal temporal dementia. Some dementias are notorious for hallucinations that are very real. Some dementias are notorious for outbursts of anger and paranoia.
I invite you to explore the internet which is just full of things to tell you about each and every dementia. Look up "Type of Dementia". Look up "progression of _________specific dementia" . Look up "symptoms of ___________type" and you will see the variety.
That is a rather "old fashioned" response from your MD. Today we want to know what we can know in order to try to protect and predict and have some few ideas of what to expect. The sad truth is with any dementia, expect the unexpected. But it helps to know what we can.
Sadly the best way to diagnose type is done when it no longer matter: it's an autopsy after death.
My best to you. It is a very difficult journey.
In our case, the PCP referred us to the neurology dept. After seeing the Neurology DR. they scheduled a three hour test for my wife. That 3 hour test was strictly a verbal skills evaluation. They quantified things like recall response times, word substitutions etc. Based on the results of all those kinds of parameters it indicates to them what specific part of the brain is actually damaged. Knowing what part of the brain is damaged will indicate what the highest probability cause is and a diagnosis.