Today
Memory Loss and Confusion: Dementia, or Alzheimer's... or Both?
by Jacqueline Marcell
Posted January 24, 2006 11:00 AM
Posted January 24, 2006 11:00 AM
Posted in
Author Elder Rage www.ElderRage.com
Host Coping With Caregiving Radio Show www.wsRadio.com/CopingWithCaregiving
Listen to an overview of one of Jacqueline’s seminars:
http://boss.streamos.com/wmedia/wsradio/elder/121705/segment4.asx
WELCOME BACK ALL MY CAREGIVERS—Tell us your story!
I am often asked what the difference is between dementia and Alzheimer's Disease. Think of dementia as a broad umbrella term that encompasses many types, with Alzheimer's being the most common-- accounting for about 60% of all dementias.
A diagnosis of "dementia" is not specific, as it could be Alzheimer's, or it could be Lewy Body Dementia, Vascular Dementia (Multi-infarct Dementia), Picks Disease (Frontal Lobe Dementia), Creutzfeldt-Jacob Disease, Normal Pressure Hydrocephalus, Parkinson's Disease, Huntington Disease, or numerous other causes. Each type has its own characteristics and can even overlap and exist at the same time.
So then is Alzheimer's always dementia?
Yes, but just one type.
Is dementia always Alzheimer's?
No. Thorough testing and evaluation needs to be done to determine which type of dementia exists--so it can be properly treated and managed.
So when a doctor asks your elderly mother what day it is... and what time it is... and what season it is... and who the Governor is--and your mom exhibits some confusion and two minutes later the doctor announces that she has "dementia"--realize that just means there's some degree of cognitive malfunctioning. But hey, you knew that already-that's why you are there!
If no further tests get ordered and you are simply handed a prescription, at that point you need to say, "Thanks for that astute analysis, but please give me a referral to a Dementia Specialist, who can perform a battery of blood, neurological, memory tests, maybe even PET scans--and who will rule out all the reversible dementias first--so we can get a more accurate diagnosis about what type of dementia it is and treat it properly."
Now here's the problem: there aren't enough Dementia Specialists to go around, especially if you aren't in a big city. And if you find one--good luck getting in for an appointment, as there is often a six-month wait list.
I have lived through this nightmare, enduring a year of numerous doctors telling me there wasn't anything wrong with my "challenging" elderly father, even though he'd been in a psychiatric hospital for violence four times. (They released him every time, saying he was just getting old and everything seemed "normal" for a man his age--84).
Once I finally figured out what I really needed and found the right doctors and diagnostic center-you won't believe the lengths I had to resort to-to be able to help my father.
I called the Dementia Specialist's office every morning and afternoon and asked if there were any cancellations, reminding them that I could have my father there within the hour. Well, as you can imagine, after about three weeks of that I got my father in there, and I didn't care one bit they were a little perturbed with me. I said, "You know, if it was your father, you'd have done the same thing." And since I couldn't leave my mother alone, once we were there I convinced them to evaluate her too!
It took many weeks of testing... but then... you should have seen my face drop when a team of dementia specialists told me that both of my parents had Vascular Dementia, PLUS the beginning of Alzheimer's Disease, which was intermittently distorting their judgment, reasoning ability, memory, and mood.
Yes, INFURIATION would pretty much sum up and best describe how I felt about all the professionals who had treated my parents that first year. Finally I was on the right track with the right medical team, diagnosis and treatments. Then, I was better able to manage my parents behaviorally and get them into Adult Day Care five days a week.
Once I figured the whole thing out I was so MAD about what I had been put through so needlessly, I sat down and wrote my first book, "Elder Rage", so other people wouldn't have to go through the misery I had.
For more information about the various types of dementia: http://www.alzheimers.org/
Lewy Body Dementia:
http://www.lewybodydementia.org/
LBD_caringspouses@yahoogroups.com
Multi-Infarct Dementia: http://www.ninds.nih.gov/disorders/multi_infarct_dementia/multi_infarct_dementia.htm
Picks Disease:
http://www.ninds.nih.gov/disorders/picks/picks.htm
Creutzfeldt-Jacob Disease:
http://health.allrefer.com/health/creutzfeldt-jacob-disease-info.html
Normal Pressure Hydrocephalus:
http://www.allaboutnph.com/
Parkinson's Disease:
http://www.parkinson.org/site/pp.asp?c=9dJFJLPwB&b=71117
Huntington's Disease:
http://www.neurologychannel.com/huntingtons/
Jacqueline Marcell
Author Elder Rage www.ElderRage.com
Host Coping With Caregiving Radio Show www.wsRadio.com/CopingWithCaregiving
Also, check out this upcoming conference on aging issues: http://www.agingconference.org/agingconference/jc06/index.cfm
Tell us your story!
Comments (21)
Have something to say? Share your thoughts.
Posted April 6, 2009 8:53 PM
Thank you for sharing a wonderful article. I am an RN who consults with Adult Family Home owners, many of whom care for residents with dementia. One thing I'd like to add is to to start tracking any mental and physical changes you may see, even if you don't think they're related as there will often be a pattern that develops over time. This will help the medical staff to better diagnose and treat dementia.
I've created a program for caregivers which gives you the tools to better document the care you provide; it is especially helpful for anyone caring for Dementia/Alzhemier's patients. My website is www.AFHMasterForms.com and you can sign up for a free trial.
Thank you again,
Laurienne
Posted February 25, 2009 6:18 PM
Jacqueline, thanks for the great article differentiating the two. As someone who cares for those with dementia, I cannot tell you how many times I have to explain the difference between the two. You did it in a clear and concise manner- kudos! I stumbled across this dementia symptoms guide a little while back, and it helps categorize. Thought this might be of interest:
http://www.dementiaguide.com/symptomguide/
Thanks again!
Posted October 16, 2006 6:56 PM
Jacqueline thanks for creating this blog. It has been very useful in finding information needed to help love ones facing issues with Memory Loss and Confusion, Dementia and Alzheimer disease. My mother at 91 has Dementia (2 years now) but she has a strong constitution to stay in the present.
She is a survivor of hurricane Katrina (lost her home) and was displaced from her hometown New Orleans to Houston, TX for 1 year. She was miserable, depressed and lonely although she was with a family member. We just recently brought her home and she is doing so much better. Her short term memory has worsened and she knows this so we surround her with things that matter to her (family, friends and hot topics for discussion). This information that you have provided is a godsend. Thank You.
Posted October 16, 2006 4:40 PM
Thanks Jacqueline, and bless you for writing back and for your caring and support for others. Your work is of immense value and help for thousands of us going thru this, and will be for thousands more in the near future who will be there too.
Posted October 15, 2006 2:46 AM
Hi Sharon, so sorry, and of course I understand your fear. You need a top dementia specialist who does nothing else but diagnose and treat dementia to evaluate your mother. There are about 75 types of dementia, so it isn’t easy to figure out, but the right doctor can be 95% sure. If autopsies were not done on your relatives--there is no way to be 100% sure. I would call the Alzheimer's Association (specialists in ALL forms of dementia: 800-272-3900) and ask who they know to be the very best dementia specialist in your area and where the best diagnostic center is. Please have an autopsy done on your mom when she passes so you will then know for sure what type of dementia it is.
Posted November 18, 2006 1:09 AM
I was quite concerned about memory loss.
I found the solution to my worries at Agogus.com: an online brain gym which provides fun brain games, interesting articles and useful tips to prevent mental decline.
I think it’s great! Finally, a fun place where I can do brain exercises, stay mentally fit and age better. Actually, the key to longevity and wellness is mental fitness.
Posted October 12, 2006 5:28 PM
I forgot to add that because of this I fully support the idea of euthanasia for people like my mom and her mom and her mom. There is no quality of life for them living all these years unaware of anything other than sadness and pain. I would prefer to have the choice of dying in dignity than to live my last 15-18 years like they did.
Posted October 12, 2006 5:25 PM
Have been searching for answers for many years. First we were told that greatgrandma was "crazy"; she died in a "nut house" at 81. Then my Grandma began to forget to send birthday cards when she was in her early 60's. She gradually lost her mind and died at 81 in a nursing home. We were told her illness was from years of taking Warfarin, a blood thinner. Now my mother has been acting strangely for 15 years, since her early 60's. Dementia they say. Yet none of the three had Alzheimer's. Mom has symptoms of vascular dementia, yet non of the risk factors for it. We finally put her in a nursing home a few months ago as she lost ability to cognize or function on a self-sufficient level.
Whatever this is must be hereditary, and that frightens me and my 2 sisters, as we are near 60 years old. Mom is lucid one day and completely confused the next. She has lost all sense of time permanently...cannot tell the difference between this morning and does not recognize any time-related phrases, eg last year, yesterday, etc. She never remembers seeing anyone. She was chatting with her grandson and yet
wondered how her grandson was doing!
Anyway, there must be other types of dementia or brain disease because my family's dementia doesn't fit any of the prototypes.
If only we knew so we could take steps to mitigate or prevent it when it happens to we three sisters.
I would love to hear from others who may have encountered something like this.
Posted October 8, 2006 10:29 PM
Hi maybe you can help me figure out what is going on with my husband. Gary is only 53 years old and has been told he has dementia. I have just finished reading about the symptoms of all the different types of dementia and none of them really fit his symtoms. He has memory loss, confussion, cannot do simple math in his head or on paper anymore and he used to be a whiz at math he is a carpenter by trade which involves the use of math daily, most simple task to him he can no longer figure out how to do such as set the timer for the splinker system or change out a broken light fixture, task that were very simple to him now take him days or even weeks to complete and more times than not he has to get help to complete them. The Doctor has him on Exelon, Primidone, and Vitamin B-1. He has had tremors since he was a teenager his mother has MS and his father was just diagnosed with Parkinsons. Any suggestions on what I should do to get a propper diagnosis would be greatly appreciated.
Barb
Posted October 9, 2006 3:51 AM
Hi Barb, oh my, so sorry about your husband—that is so young. I would ask his doctor what TYPE of dementia it is. Let him know about your research and knowledge of the various types so he is aware you understand. Also ask what tests have been done so far. If he is not sure and has not done tests to rule out the many reversible dementias, and not done the many diagnostic tests needed to make a diagnosis, I would inquire why and also ask for a second opinion from the best dementia specialist you can find. Call the Alzheimer’s Association (800-272-3900, which will connect you to your local chapter) and inquire if they know this doctor to be a dementia specialist and who they’d suggest you take you husband to see to be sure you have an accurate diagnosis.
Also, become very familiar with the prescribed medications. Here's where to look up medications: http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202479.html
Posted August 27, 2006 4:33 AM
I have two parents with Alzheimer's disease, one of which may have vascular dementia as well.
My understanding is that while dementia is simple to diagnose, Alzheimer's disease is quite a different proposition. Isn't it true that a definitive diagnosis of AD can only be done post mortem? Moreover, even when AD is present, there are high probabilities of other forms of dementia as well, which can complicate diagnosis considerably. Can the medical profession accurately assign degrees of blame to different forms of dementia when more than one are present? As far as I know, they cannot, but isn't this due more to the currents limits of science than incompetence or medical disinterest?
Posted March 22, 2006 10:45 PM
Here's an article from the Mayo Clinic that explains the many types of dementia: http://www.mayoclinic.com/health/dementia/AZ00003
Posted March 4, 2006 4:27 PM
Thanks for your quick reply Jacqueline. I hope this blog gets lots of publicity and use by caregivers. Most folks trying to cope with a dementia of a loved one feel isolated and alone. Sites like this provide both valuable information and emotional support. I'm glad I found it and will pass the word to others who could benefit from participating.
Bob Tell
Author of new book about Alzheimer’s Disease and other dementias
http://www.lulu.com/DEMENTIA-DIARY
Posted March 4, 2006 7:21 AM
Hi Bob, so true, in terms of the family caregiver, it doesn’t matter what kind of dementia it is, it is all heart-breaking to watch a loved one who is afflicted.
I think the important part about getting a correct diagnosis as to what type of dementia it is, from a dementia specialist who has treated many thousands of patients, is that the treatments can be targeted better and families can be better prepared regarding the disease prognosis and what behaviors to expect.
Posted March 4, 2006 3:01 AM
My mother is a 92 year old sufferer of mult-infarct dementia living in a Michigan nursing home. As an only son and caregiver for the past 15 years I have watchd mom slowly lose herself to the devastating fog of this disease. I appreciate Jacqueline Marcell's informative article pointing out that Alzheimer's Disease has now become a broad category for the dozens of different kinds of dementias, including the syndrome known as Alzheimer's. From the caregiver's perspective, it almost doesn't matter which dementia your loved one has. They all involve the tragic loss of the victims' identity and memories--everything that made their lives meaningful.
Bob Tell
Author of new book about Alzheimer's Disease and other dementias
Posted February 23, 2006 1:40 AM
Article to help you: http://www.washingtonpost.com/wp-dyn/content/custom/2006/02/21/CU2006022...
Posted January 24, 2006 4:02 PM
Ms Marcell,
The information in your Blog is very accurate and we appreciate your devoting this time to the recognition of LBD and the effect it has on both the LO's and the caregivers. We need to make the public and the medical profession more aware of this rarely recognized illness, so that it can be diagnosed and treated more effectively. Establishing a cure for LBD we know is in the distant future, but for now we would be gratified to have the medical research community develope medications that would more efectively relieve the symptons and provide our LO's with a better quality of life. The Lewy Body Dementia Association is doing a good service for us in helping to create awareness of this illness, but I'm certain they could use more help in their efforts with donations.
Posted January 25, 2006 7:51 AM
Thanks William. The symptoms of Lewy Body Dementia: http://www.lewybodydementia.org/lbdsymptoms.html
Posted January 25, 2006 8:39 PM
Hello again and please accept my heart felt gratitude for all you do to raise awareness of the hidden dementias underneath the "umbrella". Our mothly LBD support group in Coral Springs FL is still the first and currently the only one operating in the United States. The second LBD group will start the end of February in Minnesota. I've also been talking with folks in north Florida, California and Ohio about getting LBD groups started. This month we held a "Many Faces of Lewy Body Dementia" afternoon symposium in lieu of our support group. There was an overflow list after the first 150 people signed up. We featured local and national experts along with a caregiver panel. Thanks to the foresight of the Lewy Body Dementia Association, they were able to contract with a local video production company and we are in the process of editing the film to come up with both DVDs and VHS tapes to distribute by mid-February. I would urge anyone interested in obtaining tapes to contact the national LBD helpline at 1-800-LEWYSOS (1-800-539-9767) or through the LBDA website. You may also want to add the other LBD internet support groups: LBD chat on MSN and LBDcaregivers@Yahoogroups.com. I can relate to your struggle with both parents suffering from dementia. My father died at age 90 this past April from complications from Lewy Body Dementia. I'm still 24/7 caregiver for my mom (who turns 90 this year), has the AD flavor and is on Aricept and Namenda. She still lives at home across the street from me. For me, my mom represents why I was used as an instrument to start our LBD support group - she's the elderly spouse who, despite her own cognitive challenges, was a caregiver to her spouse of 65+ years. She does not have computer skills or technology, so all of her support is/was hands on. Over half of my support group participants are elderly and non-computer literate - no access to blogs, google searches or yahoo groups. Does anyone have any ideas on how best to reach these individuals??? I think it's just wonderful that you'll get national television coverage Feb 1st. I'd love to see Oprah or AARP or Reader's Digest pick up on the rest of the orphans living under the dementia umbrella! Any thoughts?? I admire your courage and tenacity. Please take care of yourself so you can continue to be used as an instrument to reach so many folks!
Cyberhugs, Carol in South Florida.
Posted January 26, 2006 6:39 AM
Thank you for your kind words Carol, I am happy to be able to give Lewy Body Dementia some exposure.
And yes, I am so excited about being on the Today Show Feb 1st.
Ohhh, yes, it is very hard to reach elderly caregivers like that and to get them to go out to a support group is so challenging. I think the media is the only way to reach them in mass, which is why I try to do as many radio/TV interviews as I can get. They don't read much, they don't go out, they don't use computers, they sit home and suffer alone trying to care for a beloved spouse. There are so many who get lost. How blessed your parents were to have you, and I shudder to think what would have happened to my parents without me.
I hope you can get your mom into Adult Day Care, sounds like it would be so helpful for you both.
Posted January 27, 2006 4:03 AM
Oh my gosh, you must read and watch the video of this shocking report about the shortage of geriatric professionals in the US. I have always heard the figure of less than 10,000 Geriatricians in the whole country, which was alarming enough... well, a new study out today says there are only 6,700 and tells you why: http://msnbc.msn.com/id/11047513/.
I have lectured at several medical schools trying hard to convince second year medical students to go into geriatrics, but frightfully few want to go into a specialty with the lowest pay! And who wants to deal with all the health problems an elderly person usually has... and their spouse's problems... and deal with their frustrated adult children calling... and Medicare and Medicaid... and the emotional factor of watching elderly people decline, often with dementia... and then constantly have their patients die on them--no matter what they do!
I think we are going to have to pay the new young generation of doctors a lot more money to go into this profession and to keep them... because soon... the Baby Boomers are coming... the Baby Boomers are coming! (Remember that movie: The Russians Are Coming! The Russians Are Coming!--this will be worse.)
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