chrissy56 Asked February 2020

Mom's nursing home suddenly added Alzheimer’s to her diagnosis. She has Parkinson’s dementia, probably Lewy body. Should I care?

Top specialist and extensive testing by the Mayo Clinic diagnosed her in the past and ruled out Alzheimer’s. I know it doesn’t make any difference in her care but it bothers me that this was carelessly added to her list of diagnoses. I am certain no one tested or assessed her to come up with this. Is this a common thing in nursing homes to label all dementias carelessly or for paperwork reasons? It truly won’t change her care but my family spent years seeing specialists and seeking diagnosis and this is not correct.

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Should you care? If I were you, I would go absolutely ballistic.

Where did you see the reference to Alzheimer's Disease? - on what bit of paper, I mean.

And whose signature is on the document? Because if you were me, that person would find you in his or her office at the earliest opportunity, having a complete sense of humour failure and demanding an explanation.

In the absence of a satisfactory explanation, it is formal complaint time. Medical records MUST be accurate and complete or they become worthless.

Helpful Answer (9)

"sense of humour failure"--I love it! Thanks, CM!

(0)

The nursing home staff have no idea of the complexity of a dementia diagnosis nor the different treatments. They can barely pronounce the names of the medications. You might want to engage in a conversation with the nurse caring for your family. A Nursing or Medical education does not make you an expert in dementia care. Experience is the best teacher. The best you can do is advocate for your family member. A CNA may recognize the diagnosis of Alzheimer's but would have no idea what Lewy Body Dementia is. The legal staffing ratios for skilled facilities are less than ideal. Getting involved politically may be the best way for you to advocate. Also, get to know the staff day and night staff, a relationship with the staff will help everything. Suddenly, your family member is more than the lady in room 101 with dementia. My husband is 48 years old with early onset dementia. Frontotemporal dementia is the current working diagnosis. Dementia by any name is not fun, not fun at all. Blessings.

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It is possible to have more than 1 type of dementia.
The VERY important thing with your mom is that they still have the diagnosis of Lewy Body Dementia.
There are medications that can be given to people with other forms of dementia but they can be FATAL if given to someone with Lewy Body Dementia.
Unfortunately people seem to use Alzheimer's as they would the term Dementia. (I think many people do not realize there are many types of dementia, Alzheimer's seems to get the most "attention".)
I would make sure to review the medications that are being given and they should notify you of ANY change in medication.

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So true...my mom was diagnosed with Vascular Dementia and right away the Neurologist wanted to prescribe Aricept along with other meds and I said no, after a long research on them, they do nothing for Vascular Dementia and may even cause very bad side effects instead. My mother’s Brian injury came from ischemic strokes, only those parts of the brain where the stroke happened is affected and can never be reversed...vision loss, judgment & reasoning, no cure for it. Just need to try and prevent further blood clots (strokes) so that her condition doesn’t worsen.

(3)

I would certainly ask about it but I wouldn't go to war - who made that diagnosis and based on what? Although it likely wouldn't make any difference to her care the diagnosis that will ultimately be written on her death certificate will become part of the statistics on which both government and research funding are based.
I was appalled at how little many the people who worked with the elderly every day seemed to know about dementia, right up the ladder to RNs as well as administrative staff. Many of the senior staff were older and still clinging to information and techniques that they had learned 30 years previously and the worst part is that they didn't appear to be open to learning new anything either, more than once I was made to feel like a hysterical amateur full of doubtful hypotheses gleaned from the internet 😬.

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That certainly is true, cwillie. The amount of ignorance about dementia and geriatrics in general is appalling. For example, too many doctors and nurses either have forgotten or never learned that drugs are NOT tested on patients older than 65. Old people are not just older adults. Adjusting for weight and BMI is not enough. I too have been given the "you're a hysterical amateur" looks, and I just hold firm and keep repeating myself until someone addresses my underlying concern. We have to advocate for ourselves and our loved ones.

(6)

It should be corrected. Lewy's manifests much much differently from Alzheimer's Dementia. You should now meet with the director of the facility and calmly sit with your proof and with your questions. "Who added Alzheimer's Dementia to my Mom's diagnosis, and when." "Do you understand the difference between the various types of Dementia?" The truth is that, until it hit my own family (my bro has early Lewy's), I, even with a medical background, but retired 15 years, didn't know how unique the presentations of different types of dementia are. Even the expected progression differs markedly, with Lewy's having a sort of jagged up and down progression, and Alzheimer's have a certain slow downward tragectory; others go in sort of stair steps. Many of us here get our educations because it is FORCED upon us by what we are dealing with. THAT SAID, a place that deals with elders suffering from these conditions should/MUST know all they can in order to provide the unique care these conditions can demand.
You can help. You can help their recognition that not everyone fits the cookie cutter forms. Please do so. Do it calmly and with love.

Helpful Answer (7)

I'd bring it to the staff's attention. I agree that it probably won't impact treatment decisions but I'd let them know that you are watching the file for accuracy. I'm sure they want the file to be accurate too. Hopefully, they will investigate how that diagnosis appeared on the file.

Helpful Answer (6)

Chrissy,

Earlier I posted an addy about an article I read. Lewy Body is one Dementia that they have to be careful what meds are given. Some are deadly. If the addy I posted previously doesn't work the article was...The death of Robin Williams: nine things to know about Lewy Body Dementia.

As a Nurse you probably do scare them. My daughter, as an LPN and an RN, worked in rehab/LTC facilities for 20 years. I loved when staff was trying to intimidate me and then my daughter walked in with her scrubs on. Boy did those attitudes change. My Mom had done a 180 in the hospital and they wanted to release her to rehab. I got an extra day but it was my daughter who found the antibiotic had penicillin in it that hospital records showed she was allergic to. My Dad was in rehab. Mom mentioned that he had blisters on his heel. My daughter looked at them and found dead tissue. Read the chart, he was brought in with pressure points and not given an air mattress. She went right to the DON. I really think she saved her grandparents life.

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Thanks for the info about Robin Williams. I had a friend die from it and didn't realize he could die from Parkinson.

(0)

Thank you for your concern for your loved one. My journey with my wife was 7-1/2 years. If your current facilty has diagnosed Lewy Body with Parkinsons symptoms then cudos to themm. There was a time when LBD was not recognized as bei ng different from Alzheimers. There is a big differe nce in their care and longevity.. A book I considered a bible in LBD is "A Caregivers Guide To LBD by Whitworth" available from Amazon. Some care and meds are totally different . I actually was the go to person at the assisted living facility for my wife. I have a lot of e xperience with LBD which was beneficial to both the asl caregivers and my wife. I was home caregiver all but for last 2 years. Be patient, alert and understanding.

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All info in a patient's medical chart should be accurate. When my mom was having low sugar issues, her PCP said it might be strokes - it took nearly a year to figure out she was taking too much diabetes medicine. Upon release from a hospital, they doubled the amt she took prior to hospitalization and it was causing her sugar to be dangerously low early each morning. To this day, her chart notes strokes even though I have asked them to correct it. Another time, during the diabetes thing, the same dr told my sister she had Parkinson's without doing one single test...just her weirdness from low sugar and shaking hands also caused by the low sugar. He prescribed a Parkinson's med and I vetoed it based on all the problem started after her hospital stay. Even after many trips to the ER - I finally figured out what was wrong on my own by looking back at doses of meds and what changed. Not one ER doctor or nurse ever mentioned low sugar even though all her symptoms are mentioned all over the internet as low sugar.
I say all of this because - in keeping her issues as accurate as I can, she has avoided being treated for an issue she absolutely does not have. So it does make a difference in her care. Imagine giving Parkinson's medicine to someone who does not have it. Or adding stroke meds to someone without stroke issues.

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From my experience with my mother over years..medical people , overall, once she hit eighty, treated her differently ..just as an old person. They would stereotype her and talk more to me or my sister instead of my mom ..and completely missed important things due to this. Like , asking how she usually gets to bathroom ..a walker or wheelchair and how many people to help ..even though the day before she had been completely independent . That issue turned out to be critically high calcium levels causing weakness, muscle contracture and tremors and confusion, once the calcium was normalized she was fine again.
On a serious note ..they completely missed her having a stroke ..even though we had brought her to the hospital because we thought she was having one and it was actually supposedly a regional stroke center. They felt it was just her age and a generalized weakness ..despite a prior more mild stroke...we left her there for observation ..relatively normal except for the weakness ( reason they kept her) , and a facial droop we had noted and speech changes ( which I told them was similar to during her prior stroke) ..the next am ..my sister arrived to find her sitting up in bed with a tray in front of her..trying to eat but the food just dribbling back out again since she couldn’t swallow right and her entire left side paralyzed. The hosptial staff had failed to even notice the change!
Sorry for the vent but ..my point is ...that once you reach an old age ..somehow they think you are supposed to be confused and weak ..and fail to look past the numbers

(3)

I agree with all those that say "YES, it makes a difference". There may come a time when certain medications are being considered for control of agitation or anxiety and there are medications commonly given to people with Alzheimer's dementia that should be avoided for someone with Lewy Body dementia. And, as other's have pointed out, there is a different set of expectations regarding the trajectory of the disease. I think this can absolutely be done without being adversarial. Right now, it is a medical charting error that simply needs to be corrected. If you have your mother's chart note from the doctor that diagnosed her, that should be sufficient. You will want to go to the Director of Nursing rather than the floor staff. Take the stance that her caregivers are well-intended and would love to provide more appropriate care, and correcting this will help them do it. Even if there is Alzheimer's mixed with LB dementia, the differences with regard to medications, do matter. Be kind, be respectful, but be clear that her records need to be accurate.

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Mom's nursing home suddenly added Alzheimer’s to her diagnosis. She has Parkinson’s dementia, probably Lewy body. Should I care?

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