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I Have Alzheimer’s or Another Dementia
This is the highlight of my life.
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.
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.
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.
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.
contribution may not be perfect or meet requirements but ours is just as
important as anyone else’s contribution.
rejoice that we are still capable of making a contribution, not dismissing us.
disabled in many ways and need your support not to be shut away like some dirty
We have been
handed a death sentence.
We know our
time is limited.
My wish was
longer than the required sentence.
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.
person with dementia loses the freedom to drive
person with dementia loses the freedom to conduct financial affairs
person with dementia loses the freedom to travel alone
person with dementia loses the freedom to choose how to die
should not lose their freedom because they get Alzheimer's.
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.
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.
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.
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.
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
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.
identified these important points to be considered when caring for patients
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.
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.
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.
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.
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.
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
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.
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
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.
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,
you are saying is I now need to treat the patient as a person again?”
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.
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.