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This is the highlight of my life.
Michael Ellenbogen
Posted: Thursday, November 28, 2019 10:01 AM
Joined: 11/30/2011
Posts: 2669


I am so thankful to have been invited to speak at the World Health Organization in Geneva to speak to all of that ambassadors of the word for two days. I was even given my own seat and microphone location like them.  I was able to address them all and I did many times besides having a one hour conversation in the middle of it all. It does not get any better than that. 


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KawKaw
Posted: Thursday, November 28, 2019 10:07 AM
Joined: 11/22/2019
Posts: 34


Many congratulations!

How thrilling!


abc123
Posted: Thursday, November 28, 2019 10:08 AM
Joined: 6/12/2016
Posts: 670


Dear Michael, a sincere thank you for participating in this important event and for all that you do in the war on Alzheimer’s/dementia.

Happy Thanksgiving to you and your wife.


i2i
Posted: Thursday, November 28, 2019 11:41 AM
Joined: 8/12/2017
Posts: 225


Michael, that is amazing! (and shows good judgment on the part of WHO).  Congratulations, and thank you for all your hard work and advocacy.
BethL
Posted: Thursday, November 28, 2019 4:37 PM
Joined: 3/25/2015
Posts: 588


Congratulations!
Michael Ellenbogen
Posted: Thursday, November 28, 2019 5:08 PM
Joined: 11/30/2011
Posts: 2669


This was the speech that I had made that day and because of that the US government NAPA decided to banned me and because of that AA thru me under the bus to look good in front of them. They refused to speak to me publicly but they did behind the doors. Why would anyone stand up for an organization like this? Sad.  They care more about themselves then those with dementia and that is proof. Luckily for me I had a real dementia organization throw me a life line and saved me.  If it was not for that I would not have been able to continue my advocacy that I have done so well.

 

 

I would first like to thank the members of WHO for this invitation. I consider this a great honor. I would also like to thank USAgainstAlzheimer's for helping me to come today and making my dreams to speak here come true as a person with AD.

A few months ago I was asked to share a wish and a picture to be used at this meeting; however, the requirement changed last minute and they wanted the picture in a particular format with the wish sentence shortened and incorporated in to it.

This is outside my capabilities so I asked if they could make an exception but was told I needed to follow the new process. 

I lost out on adding my wish, simply because someone wouldn’t make allowances.

This just serves as a reminder that having Alzheimer’s has not only robbed me of my skills but has, to all intents and purposes, rendered me useless to society.

If we are going to educate the world on dementia it needs to start here, with all of us. 

We need to eradicate the stigma.

We need to encourage people with dementia to participate in society. 

Our contribution may not be perfect or meet requirements but ours is just as important as anyone else’s contribution. 

We should rejoice that we are still capable of making a contribution, not dismissing us.

We are disabled in many ways and need your support not to be shut away like some dirty secret.

We have been handed a death sentence. 

We know our time is limited.

My wish was longer than the required sentence.

My wish cannot be shortened to fit in a picture.

My wish is, however, very simple and straight forward.

All I want is to be afforded the same civil rights as a person with cancer.

A person with dementia loses the freedom to drive 

A person with dementia loses the freedom to conduct financial affairs

A person with dementia loses the freedom to travel alone

A person with dementia loses the freedom to choose how to die

A person should not lose their freedom because they get Alzheimer's.

 


Michael Ellenbogen
Posted: Thursday, November 28, 2019 5:19 PM
Joined: 11/30/2011
Posts: 2669


This was my second speech at that time. They even put it on the big screen the very next day. That is why the US was pissed at me.

 

 

The US hospital system is not set up to care for those living with dementia and although other countries also fall short, many have excellent policies and procedures in place as well as impressive assisted-living facilities I have been hospitalized three times in the last four years, for non-dementia related issues, and on each occasion the hospital and staff failed me. My experience prompted me to speak with others living with dementia, and their caregivers, and I discovered that I was not alone; my encounter was not an isolated case. The people I spoke to all responded extremely negatively about their experiences. It became apparent that the issues I had, and those voiced by others, could not be understood or appreciated unless one was living with dementia. If I did not have Alzheimer’s I would have never known any of this. It’s the old saying you only know what you know. So I decided to write a list of the issues raised with a view to creating the foundations of a training program. Even though there are currently some great best-practices in nursing homes and environments dealing with what people refer to as behavioral issues, I do not believe there are any well-established procedures on how hospital staff deal with patients with dementia.

 

Here are some examples of issues I encountered as a patient with dementia during my hospital stays. Remember that my wife alerted staff that I had Alzheimer’s disease at every opportunity.

  1. I had been taking Galantamine rather than Aricept because of unpleasant side effects. In the hospital, they substituted Aricept.
  2.  I needed a Fleet’s enema pre-op. The nurse asked if she should give it to me or if I wanted to use it myself in the bathroom. Of course, I offered to do it myself. I found I had difficulty once I got in the bathroom. Bad decision on my part. The nurse should have not given me the option. (We do not want to appear stupid or show our flaws so we may do something to show we are still capable when we may not be.)
  3. Upon admission to my room, the nurse introduced herself, talked about how things were organized, explained the TV, call bell, points about my plan of care, etc. Too much information at once!! I was still trying to process her few sentences, and certainly did not absorb anything after that.
  4. I have trouble reading a menu and making food choices. Please make sure someone is available to assist with this.
  5. I tried to keep the nurse updated about my progress every time she entered the room. Here I was careful to make sure to pass on important information and instead of taking note, she asked me for a summary at the end of the shift. I was really upset and explained that was not a good way to get information from me. She later brought in a pencil and paper with labeled headings for me to fill in and asked me to use this moving forward. She should have done that from the beginning.
  6. On one admission when my wife explained to the nurse that I had Alzheimer’s disease and to keep that in mind when asking questions or giving explanations, the nurse came back later and explained that she would like to make sure others were alerted and wanted to put a special ID band on me for that purpose. The ID band said “Fall Risk.” She apologized and said that was all they had.

To date, people who are responsible for implementing change tend to look at the situation from the caregivers’ point of view, which is another major issue that needs addressing. We never ask those who are living with the disease what they want or need and I feel no policies or procedures should be considered without input from us. My goal is to create a system model that could be applied worldwide. I reached out to some key dementia educators and encouraged them to help me form a new plan for hospital training programs and they all graciously offered to help for free. I took this plan to a different hospital and they were very open to it. My team felt the optimum training program was three hours long plus a virtual dementia tour. But the hospital felt this would be too demanding on the system and instead decided on a 30-minute course plus the dementia tour. The training was not mandatory and of the 5000 staff members, including both nursing and non-nursing personnel, only about 500 have actually attended the program. I also realized that although the dementia tour was interesting it left people confused and not able to make sense of it all. This is where I believe I was most valuable because people were able to question me directly about dementia, which tied together with the information they had just learned. In the end, there were only two people who had trouble understanding the issues but did say it had made them think differently about the disease.

To reach all hospitals I believe we need to create an internet-based modular lesson plan. Ideally, it should consist of six 30-minute lessons for which the participant would receive CEU credits. There should also be a virtual dementia tour followed by the showing of a pre-recorded question and answer session. The questions should be those asked by medical staff and answered by a person living with dementia. Studies have shown that the tour must be taken first to get the most out of the program. This program should be mandatory for all new hospital employees to complete within 90 days of hire. I have shared my ideas of how to address issues implementing this program with many dementia educators who are in agreement and if people are willing to take time to speak with me I will happily convey what I feel is the best possible plan.

Progress is being made in some hospitals in Florida, but I believe their education programs require vast improvements as they are being driven by someone who is a caregiver and so they are looking at it from their viewpoint, which is good, but still fails to see things through a patient’s eyes. I am also aware of a few organizations that certify people who take their courses. I have not seen the material and question their right to say they have the best knowledge to educate and to claim they can provide certification and certification of what? I asked one of the CEOs if they had someone with dementia aiding in the educational process and they were quick to respond they had caregivers involved.

If we want to bring about change we cannot just focus our attention at the individual hospital level. We need to work with the Joint Commission and others like them that provide accreditation to all hospitals. We need to work with them to insure they have the best working model and they can help make it successful.

I have identified these important points to be considered when caring for patients with dementia.

At registration, identify a person that can and will be able to be involved in all decision-making, along with the patient. This person should be given full access to all records on behalf of the patient.

Patients already identify a list of current medications. If for some reason a drug or dosage must be changed for any reason, the issue should be addressed with the patient and caregiver to ensure there are no issues (even if it’s as simple as converting to a generic). Sometimes patients cannot take another form of the same drug-ask them.

A special ID bracelet should be placed on this type of individual so the staff is alerted that this patient has some form of dementia. This will help them if the patient is acting confused or wandering, or just needs a little extra help or explanation. It may also alert staff that the patient might not be great at making good decisions.

Do not always consider a patient being confused as a part of the dementia, but it could be much worse due to the drugs they are on. When I was on pain killers my wife could not even get a response from me that made much sense, and she knows that’s not normal for me.

A real concern exists on what type of drugs the patient may receive for Anesthesia. Pain killers will also have a much greater impact on this type of person.

Aides should not be the first point of contact. I am not always good at explaining what I need and the aide was not always good at interpreting what I was trying to say.

When asking a question, give us a minute or two to answer without going on to some other question. You could even ask us to think about it and come back in 5-10 minutes. We often need a few minutes to gather our thoughts. We might even answer a question right away and then realize a few minutes later that that wasn’t what you asked.

Somehow you need to insure the patient response is really correctly given – we sometimes give an answer just to not appear stupid or hide that we did not understand.

Offer a pen and paper to keep in the room. Tell us to write down questions we want to remember to ask when the nurse comes in the room.

From my dealings with the hospitals I have learned that they are extremely ignorant concerning dementia; however, there is a real thirst for knowledge. As I have explained, it is important that the staff is able to identify these patients upon admission. I have information on ways to accomplish this while staying within HIPAA requirements. During my time spent with the hospital in which we implemented the dementia training program and virtual tour, I was surprised to learn that staff did not even know what dementia was in relation to Alzheimer’s. It was very scary to hear them explain what I consider to be the basics.  One doctor said to me, and I quote,

“So what you are saying is I now need to treat the patient as a person again?”

So let’s make all hospitals what I call a Dementia friendly Hospital.

 

 

Talking Points to slides.   A bit disappointed that no one from the US is listed at a patient Advocate. I even know all those people.


MissHer
Posted: Thursday, November 28, 2019 7:52 PM
Joined: 11/13/2014
Posts: 2186


Congratulations Michael! That is very impressive! Thank you for all that you do for PWD.
Michael Ellenbogen
Posted: Friday, November 29, 2019 8:32 AM
Joined: 11/30/2011
Posts: 2669


 As you can imagen WHO did not want me to read the first speech as this was on a reflection on them. It was not thill the last 5 minutes that they finally allowed me to read it before starting. They kept say no all day but I had a few people pushing for me and trying to get them to give me the approval. On man a great friend made it all happen for me and I miss him today. That was Marc Wortmann  from ADI. Sadly he is no longer there. He mad great contributions to the world of dementia. 


SunnyBeBe
Posted: Friday, November 29, 2019 12:15 PM
Joined: 10/9/2014
Posts: 784


Congratulations on your accomplishment. I can't imagine how elated you must be.
GothicGremlin
Posted: Sunday, December 1, 2019 10:16 PM
Joined: 4/7/2019
Posts: 68


Michael, thank you for all of that. Creating a system model for hospitals is a great idea, and we should be allocating resources to creating such a model.

Your second point about freedoms also resonates with me, but also has some complexities I wrestle with. Speaking as a caregiver, my goals are to respect my sister's autonomy while keeping her safe and as happy as I can.

She and I talk frequently about her lack of independence. She's very afraid of us "throwing her away". Thankfully, I think she now knows that no one in the family is going to allow that to happen. But the point remains - she feels like half a person. And I know she's not the only one who feels that way. In my sister's case, she had a very responsible job and a large staff to supervise - and she did this well throughout her career. So having an Alzheimer's diagnosis, and all the myriad of challenges it causes, is hard for her to take. Her list of how she's now treated, and the things she wants reads very much like the items in your first speech.

Maybe a good way to discuss rights is to focus on the things that are still possible for her (and others with AD) to do. Everyone presents differently even when they're at a similar stage, so for us as caregivers, it's important for us to be cognizant of that. My sister is quite capable of making many, but not all, decisions, and I try to encourage her to do as much as she feels comfortable doing. I don't push her, but I don't try to limit her either. But, if she had insisted on driving, which she certainly is not able to do safely any more, I feel like I would have had to intervene.

When you talk about rights and the UN, I immediately went back to the Universal Declaration of Human Rights. It's an important document (to say the least), and rights to dignity, liberty, and equality are contained in it. I've always liked how the Articles are framed as "everyone has the right to..... X". It's subconsciously empowering that way. https://en.wikisource.org/wiki/Universal_Declaration_of_Human_Rights

It's too bad that the United States has not signed onto the Convention on the Rights of Persons with Disabilities - https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html and https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-3-general-principles.html because that Convention touches on many of the things you talked about in your speech.

Is this a topic that came up during any of the meetings?



Iris L.
Posted: Monday, December 2, 2019 12:14 AM
Joined: 12/15/2011
Posts: 16192


I don't think it is about rights so much as understanding of the capabilities of the PWD.  A PWD alone in a hospital should be able to fill out a breakfast menu or know how to use the call button, right?  But he can't.  Not without help.  The professionals just don't make the connection that a verbal adult can be incapable of something so simple.  What's the solution?  I don't know.

Iris L.


Michael Ellenbogen
Posted: Monday, December 2, 2019 11:31 AM
Joined: 11/30/2011
Posts: 2669


GothicGremlin - They never said anything about the signing of the document. I don’t even think they had an opportunity to speak but cannot remember. I am very aware of what you are speaking about and a friend living with dementia is trying to address that at the UN.  I am even trying to get Kerry Kennedy involved in that. 


Michael Ellenbogen
Posted: Monday, December 2, 2019 11:37 AM
Joined: 11/30/2011
Posts: 2669


Iris there are definitely solutions to that and some hospital are already starting to address it. Even the hospital I talked about is now doing things and have created a internal group to try to address the issues. We have along way to go but it only happens with people pushing them to change. I am still trying to pish changes at JACO but that is not going well for me because I am out of my league speaking to the medical folks and can not get someone with the skill set willing to do it pro-bono. Yet so many complain but are not willing to take the stapes needed. I know what needs to happen but just don’t have the skill sets to do it. 


Suziesb
Posted: Monday, December 2, 2019 10:41 PM
Joined: 5/22/2018
Posts: 242


Michael, thank you for continuing your hard work, your advocating and pushing forward! You are truly amazing and I am awed! 

Re: the hospital training programs... yes, yes, yes! It must be done.  Recently my mother had to be transported by ambulance from our home after she fell. It's a very short distance and I arrived at the same time. It wasn't busy, in fact, the waiting room was empty for once. I found the young volunteers at the reception desk chatting together (4 of them), and told them my mother had just arrived and I wanted to join her, as she had AD and needed me with her. Well, they replied that as soon as she was checked in they'd call me back. A long time went by, these kiddos kept chatting (yep, I learned more about their weekend plans I didn't care to know), and I went up again and impatiently said I really needed to go back as she needed help to answer questions. One of them looked at me and was irritated and said, "She hasn't even been assigned a nurse yet." I insisted that they check on it.  Like I said, it was SLOW in the ER. With a big sigh, one of them got up and went back, finally, returned and told me I could go back. I was really upset to find that the doctor had just finished his exam. He had asked my mom questions she couldn't answer, in fact, she stated that she had high blood pressure when she didn't, etc, etc. She also couldn't tell him about her medical history. But the nurse had undressed her without me present. I put a complaint in later about these young volunteers. I'm sure I will never hear anything back.  Something has to change!  Small things are difficult for my mom. This was not a small thing!! She was troubled that I wasn't with her and wondering where I was!

Anyway, I didn't mean to rant about this episode, sorry. I commend you for all you are doing!


 
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