National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, July 2012

• M. Ellenbogen  |  07-21-2012

I want to thank you for allowing me to participate in this NAPA meeting. In this document, and those attached, I write of issues I feel are important to be shared with the committee. When I have the opportunity to speak during the live meeting, I may follow this format, or I may have additional comments or suggestions.

Attached are a few documents that I hope will benefit many dealing with Alzheimer's disease or other dementia. The first document "Hospitals Dealing with Dementia Patients (1)" is based on my experience in staying in the hospital. I would like to think that what happened to me will apply to most hospitals and they all need to be educated.

When I have brought this to the attention of Doylestown Hospital the people were very receptive and realized that further education was needed. They are now discussing how to best approach/ take advantage of my skills and the use of the Alzheimer's Association to better educate their personnel in this facility. My hope is that this hospital can become a model for other hospitals dealing with dementia patients.

Attached is also "Alzheimer's Initiatives - International Association of Chiefs of Police" document. I worked with the Alzheimer's Initiatives Project Manager for the International Association of Chiefs of Police. Some of these issues are being addressed while others are not. It also seems to be open to the local police chiefs to determine if this is something they will need or benefit from. While the Project Manager feels they should all be implemented, there is no way to get all the Chiefs involved. This is all being done voluntarily. While I know the township next to mine is involved, I cannot say that for the police in my township. Multiple calls went unanswered. My suggestions and many others should become mandatory for not only the safety of the patient and the public, but also for the officer.

Since diagnosed with Alzheimer's, I have had the fear that I will suffer in many ways as I die slowly from this disease. How will I suffer? One way, which I recently realized, is from pain that my doctor might not recognize or treat once I am no longer able to effectively communicate my needs. Recently I found a way that makes it easy for people to do two things: To learn how people can suffer from Advanced Dementia and to then make decisions that are legal and moral. Basically, I do not want to continue any treatment that will ONLY prolong my dying and increase the chance of my suffering.

This tool is a set of illustrated cards. It creates a Natural Dying Living Will. The name is thus "Natural Dying Living Will Cards." Each of the four dozen cards describes a single aspect of Advanced Dementia in plain language. Each card also has a line drawing, to explain the text. What I did when I "sorted the cards" is to make a decision about what I wanted for each item: Treat and Feed, or Natural Dying? A video is being created in which I can explain my choices, which my loved ones can view when the time comes. I am glad I have the opportunity to say now what I will want later. I can have confidence that I will not have to suffer a prolonged dying with emotional or physical pain. I do not think this system covers all of my concerns, but it's the best available that I am aware of today. This should be considered for all others.

One of the manifestations of dementia is wandering. Patients rely upon familiarity and can get lost easily. This can create panic for the patient and their loved ones and may sometimes result in injury or death. Today there are many state-of-the-art location based products and services that offer safety and peace-of-mind to families and loved ones. People need to be educated about these products and directed to the ones that are best fit for their application. The medical field needs to embrace these products as they do drugs. These products can lead to the person safely staying at home longer. Therefore these products should be a must for all patients and should be covered by health plans and government plans. We also need to figure out how to bring down the cost so that everyone can take advantage of them.

As a dementia patient living in the spotlight, I am often contacted by people trying to sell or convince me to use a product they have that will either reverse or cure my disease. We all have this hope factor in us and are very willing to do some very stupid things to see if they work. There needs to be a single unbiased source of all proven technology that people can rely on. There should be information on what is known to help and what has been known to fail. Too many people are being scammed by the quacks and we need to help people understand what really works. Now I say this with caution, because we also need to remain open-minded. Some real solutions may come from non-traditional methods. As long as respectable people have done a true trial, following the stringent protocols established, that can also be backed up by the medical field, then it should be added to the list.

And my last and final point and question. What assurances do families have that what you are doing will get us a means of prevention and treatment by 2020 or 2025? I am already concerned by the lack of funding being appropriated for this cause.

Please do not hesitate to reach out to me should you have any questions. I welcome the opportunity to become more involved in this committee and to be able to give my viewpoints as an Alzheimer's/dementia person. I also volunteer to be utilized by this committee and HSS to be a voice for other AD patients.

Thanks and have a great weekend.

At registration, identify a person that can and will be able to be involved in all decision-making, along with the patient.

At registration, identify a person that will be given full access to all records on behalf of the patient.

Patients bring in a list of current medications. If for some reason you must change the drug or dosage 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.

Example: My doctor switched me to Galantamine rather than Aricept because of side effects. In the hospital, they substituted Aricept. (My wife had Galantamine with her, but of course it is a big deal that you should not take your own meds.)

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 mean that the patient isn't great at making good decisions. If you need a color, purple is perfect.

Example: 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 by myself. 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.)

I know they always ask the patient for their full name and birthdate -- that may be hard at times for us. I can become confused on a good day, in the hospital it can be worse because of pain medication or being awakened suddenly. Maybe another way can be figured out. (Before a name tag is placed on a dementia patient it may require 3 or 4 staff individuals to ask the patient for that information and each must identify the same information before the ID is placed. This will insure the wrong tag is not placed on the patient. Use the verbal ask on critical things like surgery and drugs given the first time the nurse may see the patient)

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 what's 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.

While the ordering food on the menus is simple, it is very overwhelming for me and to keep track of things and what items may even go together or are even needed.

Don't assume we can figure out how to use items in the room, like TV, Phone, call button, and anything else. Please point them out and provide a simple explanation on their use.

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. Aides are okay for follow-up or to help with food menus.

When asking a question, give them a minute or two to answer without going on to some other question. You could even ask them to think about it and come back in 5-10 minutes, no longer. 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 -- they sometimes give an answer just to not appear stupid or show they did not understand. Maybe some visual aid or clues can be given along with the verbal depending on the stage the patient is in.

Try to keep items and things in the room in the same place once they determine the best location for them.

I personally feel these patients should be kept a bit longer than the average person, for observation. This would just be to make certain there are no issues at time of release.

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

Keep in mind many patients with dementia can no longer spell correctly and may use the wrong context for words.

If someone with Alzheimer's is stopped, for a sobriety test, and they may fail due because they will have trouble following instructions or poor gate. They are also much lower in there response and may even give you a blind stair due to confusion.

A place to store or remove guns from a home when needed - I came up with a simple way that could be accomplished, without too much impact to the police. A gun safety device can be used to secure the guns in the person's home and the key can be given to someone responsible. There were other suggestions made.

Better and improved driving testing methods for Alzheimer's patients, ones that normal people would also not fail. It's very easy to find fault with someone's driving, but is it really related to Alzheimer's. Just think of the foolish things you have done? If do not have Alzheimer we treated one way, but if you do you react so much differently. I know we want to make the roads safe, but that comes at a cost to others lives.

When a call comes into the 911 system, they should have a way for people to register that a person in that house has Alzheimer's. This would prepare them in advance on how to deal with the person and family and eliminate confusion. This of course would be something the resident would need to register. Just think if there is a fire would that person still know what to do. Having that information could and will save lives.

Sometimes Alzheimer's patients get confused or feel threaten and may make accusation that could land someone else in jail. Be prepared to deal with cases like this. They need to be handled very different then the average person.

If an Alzheimer's patient becomes defensive, do to some argument, they can sometimes become very aggressive and even become threaten. That is the wrong time to try to remove them from a home. They need to be calmed down first, before moving on, otherwise it can become a disaster for that person, since they will not understand what is going on and may escalate even more.

Be prepared on how to deal with people who may seek help when they are lost driving. All because we get lost driving, does not mean they cannot drive. These two issues are very confused by many.