Comments on Medicare Proposals on Improved Hospital Care for Dementia Patients

Lane Simonian

Michael Ellenbogen wants to encourage anyone interested to make comments on this measure. I am going to include Michael's comments:

Please get people to make comments on this site ASAP. Very important.

 

You must submit your comments by June 10 on the Regulations.gov site.

Pls see the proposed CMS Measure link added here.  There is time for public comment until June 10 on the age-friendly measures. Will go a long way to an eventual requirement and The Joint Commission then would have to address.

https://www.johnahartford.org/dissemination-center/view/2025-cms-proposed-age-friendly-hospital-measure

            

 

This is something I have been working on for 10 years now. Not sure if I could add my make recommendations to the existing recommendation of CMS-1808-P or do they need to add an addendum for our part I have been working for if we were to succeed.

 

Thes are my comments below that I will add.

 

While much of this is over my head I did read the CMS-1808-P. So, I went by the short version and hope I did not misunderstand. I have learned that there are many ways to fix a problem. Sadly, if not fixed effectively it just creates other or new issues.  If this was the 1970’s I would have said this is good. But this is 2024 and just in the last 5 years we have learned so much when it comes to Neurological disease (ND). There are also many people without diagnosed ND that experience cognitive dysfunction from stress, drug interactions, delirium, etc. that could be cured and they don’t even know it. The medical treatment these people experience is impacted by their diminished ability to understand and engage fully with a treatment regimen or provide a reliable medical history. This also dramatically affects their treatment within the hospital system.

The first mistake in this document is to think that when someone turns 65, and only then, those issues begin. Sadly, that is so far from the truth and people under 65 years of age also need to be treated fairly.  Then of course we have learned so much in the last few years around dementia and other ND. None of this information is even in the textbooks currently so our existing medical staff is far from understanding this and they are left in the dark because hospital administrators refuse to pay for additional education on dementia care. That brings me to the next point as to why a certification program is needed to hold hospitals accountable. Lack of education is one of the biggest issues we face. Not just when it comes to people diagnosed with dementia. Over 50 percent of those with dementia don’t even know they have it. That is why we need to identify these folks as they enter the system so we can ensure they get the necessary help they deserve. Could you imagine being admitted to the hospital and not understanding what you need to do in order to get better. This happens all the time. Especially for low income and underserved populations. Let’s create a true and fair hospital system where all people are treated fairly so they can get the quality medical care they deserve.  People need to be tested/identified to ensure they are able to care for themselves. People as young as 19 years old could be impacted by this, for various health issues.

 

As a person who was a caregiver and has spoken to thousands of people living with dementia, and their caregivers, I have had heard so many horror stories, including my own as I live with dementia myself. I come from the IT field and our goal was to actually determine the real root cause of the problem, and actually fix it. Anything else was just putting a Band-Aid on it, that always created some other unknown issue. So, lets stop the inequity. This should not be about the money, but real quality medical care.  I contacted a website that was promoting the 4M’s and asked them what will this do for me, as a person who is living with dementia. Simple answer, nothing. So, you be the judge on how great this is.

 

Again, I am going by the short version of the proposed rule. I think there are some good things in there. There are three points I find lacking: 1. Including those below the age of 65, 2. The extremely important piece of providing education on caring for those with dementia/cognitive dysfunction, and 3. A way to communicate to the entire healthcare team those identified with cognitive dysfunction through the admission screening.

You may be interested in the article I had recently published on this exact issue.  https://www.mathewsopenaccess.com/journals/neurology/abstract/the-failing-hospital-system-i-when-it-comes-to-cognitive-issues-i

ButterflyWings

Thank you for this. Very important for as many as possible to provide caregiver input. I will make comments before the deadline and share with others to do so as well. The 4th point I suspect is lacking in the proposed rule, is the need to respect and prioritize the care-partner/caregiver throughout the ER/hospital process. My LO has been literally endangered more than once, due to the dismissive and even hostile attitude toward me as his caregiver/spouse and very necessary "other half" of every medical inquiry or decision made.

It is as if the system over-emphasizes rules that were made to give hospitals blanket rights, and maybe to protect the agency or privacy of patients generally — without accounting for how risky that is when someone cannot make good decisions for themselves due to dementia (diagnosed or undiagnosed). This leaves PWDs at the mercy of guesswork by medics that know too little about dementias and refuse to listen to the care-partner who does know and often has crucial experience to avoid unnecessary interventions, dangerous drug interactions, unneeded side effects, and undue suffering or neglect. And the article below is one of many that shows "the system" KNOWS these risks and outcomes exist — yet it keeps marching on.

ButterflyWings

Reposting link to this article that I shared a couple of months ago: on Significant Risks of Hospitalization for PWDs

"...there are known significant risks associated with hospitalizations for patients with dementia, including prolonged lengths of stay, immobility, falls, protracted delirium, accelerated cognitive and functional decline, institutionalization, and an elevated risk of rehospitalization.12–19 In addition to longer-term adverse outcomes, patients with dementia are at increased risk for an “intervention cascade” while hospitalized. With advancing stages of dementia, an increasing majority of patients’ and their family’s care preferences prioritize comfort and more conservative management that aims to limit intensive diagnostic evaluations and invasive interventions.20–23"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156993/

Michael Ellenbogen

Hi Folks,

It has been a along time that I have been here. I do peek in once in a while. I can not begin to tell you how important your input will be to the CMS proposal. This will help every person with dementia and with other types of ND if you cover the 3 points of what I am asking to be added. If we have enough people bring this up CMS will make the changes and we will all benefit. This is the most important work I think I have ever worked on and will have the biggest impact on our society and you know I have done some amazing things. This is my last biggest fight and we have to win this . Please take the time to get as many people in your families to add to this extremely cumbersome. If I could do it so can you. Thanks

Michael

Michael Ellenbogen

I would also like to thank Lane for his continued support in ensuring you folks get the information you need to help you. I can assure you he has to go thru many many emails for him to select the one's that will benefit you folks the most.

mommyandme (m&m)

Thank you, Michael, for all you do for this community. Thank you to Lane too and ButterflyWings.

Iris L.

Thank you, Michael and Lane, for posting and for bringing awareness.

Iris

H1235

Butterflywings makes a good point. I understand the need for HIPAA laws. But doctors should still be actively seeking out information from caregivers even if they don’t have the proper HIPAA rights(because the person with dementia can’t think clearly enough to give those rights to their caregiver). I don’t know how a doctor can do a proper evaluation without an accounting from someone close to the person with dementia. Too often family without HIPAA rights are treated as a nuisance. Getting POA or guardianship can be a very difficult process for families and time consuming. If they have anosognosia they don’t think anything is wrong, how can they get help if they don’t know to ask for it and family is not allowed to ask for it. This makes no logical sense! If a person with possible dementia is brought into a medical setting in a state of self neglect and suffering from hallucinations family should be questioned as a source of valuable information not ignored. As it stands even if someone is forced into a mental health stay because the doctors don’t believe they are able to make proper decisions to care for themselves they are still allowed to make hipaa decisions. That make no sense. At minimum a temporary advocate or guardian should be assigned until they are stable(if that’s possible). Who is advocating for our lo if they can’t and family is not allowing. We just cross our fingers and hope the hospital/doctors do what’s best. This is very very wrong!

Michael Ellenbogen

Hi folks,

It seems that I may be the only one excited about this. I am just not sensing that others are. I can not begin to tell you how critical this is. This will have the greatest impact on the health system for those living with dementia that has ever been put in place to help them and their caregivers. This I one of the most important times that you can actually change the outcomes for the better. I realize you are also busy but please find the time to do this. Thanks so much.

Lane Simonian

Thank you to all who have responded and know how important this is.

debriesea

I would like to leave a comment to this proposal to show my support.  Since I do not have first hand experience in this yet, I’m not sure what my comment should be. Is this an appropriate comment to make?

“I support this proposal and see it as steps to the much needed care and education in the medical field of all persons not only with dementia but neurological diseases.”

Michael Ellenbogen

This may help you. I have been working on this for about 2 years now and actually started it about 12 years ago. I bolded the import issues to be added to CMS.

Dementia DREAMM Team

Determined

Resourceful

Engaged

Advocates

Moving

Mountains

Goal – Advance a national hospital designation program that designates hospitals that meet specific quality measures related to identifying and treating patients experiencing cognitive issues, supported by organizations like the National Quality Forum and the Centers for Medicare & Medicaid Services.

Key objectives

1 - Identify and promote routine utilization of structured cognitive assessments during the Medicare Annual Wellness Visit.

2 – Identify and promote mandatory requirement of all hospitals treating Medicare beneficiaries to adopt quality measures that ensure the best care for patients admitted to the hospital or being evaluated in the emergency department; these measures would include identification and performance improvement related to patients experiencing cognitive issues. 

3 - Recommend a method for identifying patients showing cognitive issues using a verification system to ensure accuracy (Wristband, door signage).

4 - Identify and promote training requirements related to caring for people living with dementia for health- and long-term care professionals as well as care partners

5 - Identify and promote programs that will teach empathy to health and long-term care professionals and paraprofessionals (e.g., simulating what it is like to live with dementia) to increase understanding of the need for dementia-specific training..

Benefits and Outcomes

1 - This will create competition among hospitals and consumers will be able to identify hospitals that have implemented quality measures related to cognition.

2 - People with cognitive issues will be given appropriate and evidence-based care when they are in the hospital setting.

3 - People in hospital will have a better, more accurate and safer outcome.

4 - Upon discharge, ensure that family caregivers are actively involved in the discharge planning process and people with dementia receive written, detailed care plans to ensure medications and other instructions are followed to prevent hospital readmission.

5 - For those newly suspected of cognitive issue, a recommendation to seek additional follow up for a full cognitive assessment.

6 - Create better data for hospitals that will lead to lower cost and better experiences.  

We had a good conversation about the universal symbol. Based on our conversation I have decided that I am not looking to promote any single Logo to use for this project. I have had many years of experience trying to push a certain logo and that in itself is a losing battle. In this case I will only make the recommendation to the hospitals that they need some signage and wristband for identification purposes. But I will leave it to them to determine what they think will work best for them. We may just show them what others have used in the hospitals as a wristband identification. What is more disappointing is that there is no set standard at the federal or state level for wristbands used in the hospital system.

I already have all the training material and people ready to get this started. We just need the cooperation of your organization to create the certification program.

Thanks so much for your consideration. Now is the time for change. We all deserve better.

Michael Ellenbogen

Feel free to add your comments to the link below.

https://www.linkedin.com/pulse/please-take-time-get-many-people-add-comments-ellenbogen--gncwf/?trackingId=C7pdWGqTSaCm4wRX8Mtiyw%3D%3D

Michael Ellenbogen

soryy but i could not figure how make this link active . just copy it to your browser. thanks

lisa kelly

> @ButterflyWings said:
> Thank you for this. Very important for as many as possible to provide caregiver input. I will make comments before the deadline and share with others to do so as well. The 4th point I suspect is lacking in the proposed rule, is the need to respect and prioritize the care-partner/caregiver throughout the ER/hospital process. My LO has been literally endangered more than once, due to the dismissive and even hostile attitude toward me as his caregiver/spouse and very necessary "other half" of every medical inquiry or decision made.
> It is as if the system over-emphasizes rules that were made to give hospitals blanket rights, and maybe to protect the agency or privacy of patients generally — without accounting for how risky that is when someone cannot make good decisions for themselves due to dementia (diagnosed or undiagnosed). This leaves PWDs at the mercy of guesswork by medics that know too little about dementias and refuse to listen to the care-partner who does know and often has crucial experience to avoid unnecessary interventions, dangerous drug interactions, unneeded side effects, and undue suffering or neglect. And the article below is one of many that shows "the system" KNOWS these risks and outcomes exist — yet it keeps marching on.

lisa kelly

> @"lisa kelly" said: thank you for this- I have also received the dismissive and even hostile attitude, as if I am someone who needs to be shut out of the exam room when I ask to be by his side- but my partner is early onset, and he will not answer medical questions correctly, and he most certainly will not remember what anyone told him or gave him. He will be agreeable, so if the med tech/nurse/cna/doctor is leading with questions, he will be agreeing, and saying everything is fine; or, he will be offended if they ask things in a way he misinterprets, and won't offer up any info at all. My partner and I are not married, but I do have the POA, and we have lived together for 6 years, we are both on the mortgage, and we just won't be officially tying the knot for financial reasons, but I am all he has through this, and I am dedicated to his care. Why are medical folks acting like it's munchausens by proxy? I am not the enemy, I am the person, after him, most interested in his health and care, and willing to do anything to help him.
I also can chime in on the lack of knowledge around dementia in any medical office that is not devoted to treating it; there is a big difference between being ignorant and being impaired- and where my partner has no choice about being impaired cognitively, the medical community is actively choosing ignorance.


> > @ButterflyWings said:
> > Thank you for this. Very important for as many as possible to provide caregiver input. I will make comments before the deadline and share with others to do so as well. The 4th point I suspect is lacking in the proposed rule, is the need to respect and prioritize the care-partner/caregiver throughout the ER/hospital process. My LO has been literally endangered more than once, due to the dismissive and even hostile attitude toward me as his caregiver/spouse and very necessary "other half" of every medical inquiry or decision made.
> > It is as if the system over-emphasizes rules that were made to give hospitals blanket rights, and maybe to protect the agency or privacy of patients generally — without accounting for how risky that is when someone cannot make good decisions for themselves due to dementia (diagnosed or undiagnosed). This leaves PWDs at the mercy of guesswork by medics that know too little about dementias and refuse to listen to the care-partner who does know and often has crucial experience to avoid unnecessary interventions, dangerous drug interactions, unneeded side effects, and undue suffering or neglect. And the article below is one of many that shows "the system" KNOWS these risks and outcomes exist — yet it keeps marching on.
>
>

ButterflyWings

@lisa kelly I am sorry you too have experienced this but not surprised.

It is a huge injustice to both our PWD LOs and their Primary Caregivers.

I hope and pray that people will share these comments and concerns via the link Michael and Lane have provided. If we don’t speak up, it will not change,

Michael Ellenbogen

This will definitely help caregiver’s more.

lisa kelly

I submitted my comments, thank you for highlighting this and for the links!

Michael Ellenbogen

If you were planning on adding your comments time is running out as you only have 4 days left. Thanks

Michael Ellenbogen

Thank you so much for all of you who have shared this and have sent your comments. We now are in the wait game and I hope this will swing our way.

If I can ask you to just follow up and ensure your comments are added to the site. It may take a month before it will appear. If it does not, please reach out to me.

Thanks again.

If this should happen this will be the greatest change in the medical system that will help all of us including those with dementia.