I ranted just a bit on the "disappointment" thread and then decided I should start a thread to discuss what it is that people felt was missing.
I mean what were your expectations?
What did you want to see when you watched the programs?

I know alot of people were disappointed in the fact that is did not show how our loved ones can get violent, or even enraged or extreme agitation. We all know how this disease effects the memory, that is a given and even people who do not deal with it, know that people lose their memories. There are so many other aspects of the disease that were not shown.

The fact that some people are unable to place their loved ones into a facility due to the fact that they are violent.

I was also dissapointed that it was shown as an elderly disease as well. Which I have to say, one thing I have learned since coming to these boards is this is not and "elderly" disease. I believe it is within any individual that may have it long before they reach the golden years. I believe in some it just rears it's ugly head later in life.

However, after coming to these boards we are finding more and more people being diagnosed at a very young age. I wish they would have touched on EOAD. But once again, I believe that is another "fear" factor for the public. Keep it warm and fuzzy and people will watch or at least you hope they will. I can tell you that out of everyone I know, and they are not dealing with this disease in their life, they did not watch it.

my husband died March 24, 2009 of AD .. we had to admit him because of Sundowing.. I didn't hear any comments about that????

James-
By the way I just read your other post under the disappointment thread and your probably right, we would never see a show that would satisfy everyone, due to the fact that every Alzheimer loved one (im tired of using the word "patient") is different. But just still feel alot was left out.

I agree with you James that it would be hard to satisfy *everyone*. And in no way should the pain and suffering of those families who were brave enough to share their stories be diminished.

What did I expect? I really thought they had a prime opportunity to show how hard the caregiving part really can be for some people. We pretty much put our lives on hold (sometimes willingly and sometimes not).

People have to leave jobs, give up many freedoms and even go without health insurance to do this job. Friends get tired of hearing how you can't do this or that with them and stop calling. Family members can't deal with seeing their LO "that way", so they just go about their own lives. Granted, this is not EVERYONE'S situation, but there are enough people in this community who have these problems to figure it is common enough to address.

Imagine if a relative or friend of the caregiver saw something like that and realized they really needed to step up and help out more. Even if only one or two caregivers were able to gain a little freedom because of it, it would be a great thing.

Katie

I am an RN who has a step-father with AD and a mother with FrontoTemporal Dementia.

I think that expectations for the special were different for many of those who are long term caregivers and coping with tremendous challenges day in and day out versus the general public not dealing with the disease.

Most caregivers are doing this care alone without outside support and little in the way of financial resources. Initially, after the first episode, I too found myself feeling a bit let down for the average caregiver before gaining a better understanding of why this may have been so.

After thinking about it for a day, I realized that the goal of the project was not about us; it was probably to introduce Alzheimer's Disease to those who have not much if any experience or knowledge with/about the disease. It was probably intended for that specific group of people to give a generalized overview in the time allotted.

If the special had been specifically intended to inform and move public awareness to increase pressure to bear regarding the lack of services, as well as informing re lack of a cohesive approach for the ability to provide care and lack of financial resources to obtain said care, the special would have been made much differently; but that was not the mission of this special.

Therefore, after the first impression, I had to change my perspective.

The two science segments were very informative and allowed for an increased sense of hope that the future for cure or prevention may be sooner than we had expected.

The makers of the special met the goal of presenting a general overview of AD from a non-AD person's perspective. In this context then, content was probably adequate and the special's mission was achieved.

I agree that it would have been very beneficial for the special to use the terminology at least a few times of, "Alzheimer's Disease and Related Dementias." The public is often not aware that there are many different types of dementia. Just a mention or two would have sufficed for this special whose intended focus was AD.

I also agree that another item that was overlooked on the caregiving segments and really should have been included in film as it is information that is not well realized, is the Early Onset Alzheimer's Dementia. That is an important public message, and it has tremendous impact in many ways on families that are dealing with this.

I more or less queried acquaintances about watching the HBO Special. Most, (none of them dealing with dementia), did not watch. One who did, said she watched the first segment and then did not watch any more of them as it was, "nothing new." That was a disappointment. I hope she changes her mind and watches the other installments in, On Demand.

So, this was a decent first step. It is the next special, for whoever should take it on, that perhaps will educate to the next level by the sharing of the stories of long-term caregivers and their loved ones who are struggling mightily on a day to day basis with many more of the realistic long-term care issues with little to no resources and have no way to gain assistance for their loved ones. This is the story that has not yet been told, but we can understand that this just was not the intended audience for that.

In answer to someone's question along the way; I don't think caregivers in the trenches expect to have lengthy filming of rages or shrieking, etc. I think just a realistic approach to the poor and middle classes who are striving mightily in the face of huge daily care issues and have no financial ability to afford care aides or who cannot pay for the private care facilities, or other resources etc., and the long-term toll it has taken on self and family.

This is where the majority of the caregivers are living and dealing with the disease. They wait for their stories to be told, and I feel that they will be; the population is aging and the increase in cases of AD and Related Dementias are on the rise.

In the meantime, thank you to the makers of the special and for HBO for being willing to take the first step in what will probably become part of the continuum of public education in this regard, it is greatly appreciated.

I am a patient with lupus and cognitive deficits. I'm attached to these boards because my difficulties fall in line more with dementias than with pain syndrome. I have only a distanct family history of Alzheimers, and no direct caregiving experience. Having said that, here are my impressions of The Alzheimer's Project. I watched 3 of the segments on hbo.com.

I'll give you the example of lupus. Lupus is an invisible disease. No one is interested in lupus unless they have it or someone they know has it. When advocating, the organizations try to play on people's sympathies that the lupus patient is in great pain and discomfort. Most people with lupus begin in their 20s and 30s so they are in the midst of their early adulthoods, and surrounded by people.

Alzheimer's is also an invisible disease. In the public's mind, Alzheimer's is a disease of very old people who lose their memories. Elderly people have Social Security and Medicare, so their needs are taken care of, right? Don't all elderly people become a bit forgetful anyway? I think in the public's mind, they know Alzheimer's is bad, but it's not that big a deal for them.


In the few months I've been on this website I've learned a lot. I didn't know about the repeating questions, the mumbling, the wandering, the putting all objects in the mouth, the failing driving abilities, or the need for hand feeding. I think this project showed that Alzheimer's disease is more than just old people being forgetful. They saw a range of difficult behaviors and disabilities.

Since this thread is about disappointments, I'll say this. The first segment, The Memory Loss Tapes, was boring if you're not involved with AD. I would have lead with "Grandpa do you know who I am?". That brings in all ages of the family and makes it personal. That segment was emotional and informative, showed tenderness, and caregiving in the young family members. That segment can be shown again and again, everywhere there are school children and their families.

The next segment should have been "Caretakers" to show how AD affects the family. Somewhere in that segment should have been some talk about the cost to individual families, in medical funds, and the fact that often someone has to stop employment in order to become a full time caregiver and lose that income. People are interested in what affects them and leaving work to care for an elderly parent or grandparent will affect them. Having a valued employee quit work because of caregiving necessities will have an impact on employers and human resources people. Even schools can be impacted because perhaps a child is kept home from school to care for grandpa or grandma.

There are so many major aspects of Alzheimer's it's hard to know where to start but I think the HBO project did a great job in bringing AD to the public. I think a way to approach a project in the future might be to categorize it the way the alz.org message board is broken up into: Alzheimer' in general; Early onset Alzheimer's; caregiver's experiences; and treatments. In all cases, it should be stressed that Alzheimer's is not the only dementia.

Iris L.

Thanks for the responses.
To those who feel there should have been more emphasis on "difficult cases", I would ask this:
How would you, dealing with a difficult ADLO, feel about a film crew of between 4 and 6 people hanging around your house and following you around filming and recording for days on end?
Do you not think it would be disruptive to both you and your Loved One who is already struggling?
Might this not be one reason why the more "difficult" issues weren't shown?

Perhaps the gal who posted on the disappointment thread who was actually filmed could provide some insight on this. I will ask over there.

quote:

Originally posted by JRKH:
I ranted just a bit on the "disappointment" thread and then decided I should start a thread to discuss what it is that people felt was missing.
I mean what were your expectations?
What did you want to see when you watched the programs?

WHAT ME AN MY PARENT NOTICE IN WATCHING THE SHOW IS THAT THEY SEEM TO DEVEOPLP DELYS .I HAVE LEARING DISIBILIES AN AUTISM .AN I SAW THEM HAVING TROUBLE DOING THE TEST THEY WERE GIVEN .WERE LIKE THE ONES I HAD AS A KID AN SOME SEEM TO HAVE SOME BEHAVIOR THAT LOOK LIKE AUTISM .IT WAS INSTRING .I WONDER IF AD IS IN THE SAME AREA OF THE BRAIN THAT LD AN AUTISM IS .

Autti, I am so glad you came to join us here on the message board.

I do not know if there is a connection between dementia and autism. Different dementias affect different parts of the brain, so it's possible there are overlaps, I suppose. Maybe some of our smarter medical people can give you a better answer.

I just wanted to say welcome!

quote:

Originally posted by Carolina Songbird:
Autti, I am so glad you came to join us here on the message board.

I do not know if there is a connection between dementia and autism. Different dementias affect different parts of the brain, so it's possible there are overlaps, I suppose. Maybe some of our smarter medical people can give you a better answer.

I just wanted to say welcome!

thank you
it just look like that from there behavior an lossing skills

autti, No, autism is not really like Alzheimer's.

Autistic folks have a unique approach to life, and I guess sometimes can sound like a lot of different disorders. No different from how so-called normal people can sometimes look pretty crazy, or developmentally challenged. People just look all sorts of different ways, depending on what's going on.

The big thing with Alzheimer's is, the memory loss. First, we can't make new memories, and starting in there sometime we start losing our older memories, too.

Sometimes we develop personality changes, and those are almost always bad changes, like to being really angry. A some point, some of us have trouble moving like we used to.

Sometimes we have trouble understanding something we see or hear, but not the same way as a normal brain has trouble, or an autistic one. It's hard for me to explain, sorry about that.

All that said, I'll bet you can relate to the basics of Alzheimer's and other dementias. You just need to keep learning.

I found it all to be very interesting. I would have liked more background on the participants. I would love to have seen them in their prime. I like the "stages" format. It was intriguing to see the progression in that way. It was a bit "clean." But all in all I liked it.

quote:

Originally posted by Alan in Colorado:
autti, No, autism is not really like Alzheimer's.

Autistic folks have a unique approach to life, and I guess sometimes can sound like a lot of different disorders. No different from how so-called normal people can sometimes look pretty crazy, or developmentally challenged. People just look all sorts of different ways, depending on what's going on.

The big thing with Alzheimer's is, the memory loss. First, we can't make new memories, and starting in there sometime we start losing our older memories, too.

Sometimes we develop personality changes, and those are almost always bad changes, like to being really angry. A some point, some of us have trouble moving like we used to.

Sometimes we have trouble understanding something we see or hear, but not the same way as a normal brain has trouble, or an autistic one. It's hard for me to explain, sorry about that.

All that said, I'll bet you can relate to the basics of Alzheimer's and other dementias. You just need to keep learning.

an what my mom say is for me i dont no the differnt i been this way since birth .it must be hard to rember how you use to be .what iu could realte to was there behaviors an proublems with dping the test .i use to pace alot but i take meds for my angizty alot of us with autism have angizty .some people with autism who are lower f talk to them self or make noise that dont make any sence .,i still stimm on things .my dad notice how some of them do that that nmeans geting ficed on an objects so on

http://www.autistics.org/library/

if you click on this link it give info on autism so you can understand what im saying to

Hey autti34:

Welcome aboard, great to hear from you.

I do not know what it is to have autism from the inside out. I know of it through the eyes of my grandson now 11 who has been autistic since birth.

He gets a kindly kick out of my AD, comparing so many of my difficulties to the same ones he has. "Me and Poppa" he says.

In response I tell him "Yes, true, but there is one big difference. You are getting better I am getting worse. Before long it will be you holding my hand crossing the street!"

quote:

Originally posted by Mike Donohue:
Hey autti34:

Welcome aboard, great to hear from you.

I do not know what it is to have autism from the inside out. I know of it through the eyes of my grandson now 11 who has been autistic since birth.

He gets a kindly kick out of my AD, comparing so many of my difficulties to the same ones he has. "Me and Poppa" he says.

In response I tell him "Yes, true, but there is one big difference. You are getting better I am getting worse. Before long it will be you holding my hand crossing the street!"

that truye i still make improvenmt every so often as an adult ..what is it like to have ad did you like the docturmy .i had one done on me but i didnt like it becuse when the person put it togher .it may me look like i was lower f then i was .like it look like i was wigging out all the time when i only melt down once in awhile now .i no situion to adviod so i dont lose ity since i go out on my own an stuff as im hf now i drive an everything .

I would have liked to have seen more on the stress and frustration. Everyone seemed to be acting for the camera. Putting on their happy faces. No shouting, yelling, flipping out, no family arguements.

It is a start though.

Believe me, if they had shown my family, it would have been an ugly scene. My father lived in denial for many years, which delayed my mother's diagnosis. Even after he finally took her to see a neurologist, he really just wanted it to go all away. He put her in a different room in the house with a nurse, which created its own problems. I wish my family had handled it better. It is one of my biggest regrets.

I am glad people are talking more about this disease, my family hid my mother's illness for many years. I would not do the same again, I would also have gotten her into a study so that scientists could learn from her disease.

[QUOTE]Originally posted by CGR:
Believe me, if they had shown my family, it would have been an ugly scene. My father lived in denial for many years, which delayed my mother's diagnosis. Even after he finally took her to see a neurologist, he really just wanted it to go all away. He put her in a different room in the house with a nurse, which created its own problems. I wish my family had handled it better. It is one of my biggest regrets.

I am glad people are talking more about this disease, my family hid my mother's illness for many years. I would not do the same again, I would also have gotten her into a study so that scientists could learn from her disease.[/QU]i know what you mean all the family seem overly happy an claim like they were on meds to .one of my friends dad had ad an it was not all ways happy in there house

After thinking about this for a while and taking into account that we assume the show was intended to get a wider audience interested, I think what I would have liked to have seen isthis.
A stronger "statement" through visuals and narration at the beginning of the program about how truly devestating this disease is on the patient, the families, and on society as a whole.
Talking at some length about the coming devestation if this disease is not conquered.

quote:

Originally posted by JRKH:
After thinking about this for a while and taking into account that we assume the show was intended to get a wider audience interested, I think what I would have liked to have seen isthis.
A stronger "statement" through visuals and narration at the beginning of the program about how truly devestating this disease is on the patient, the families, and on society as a whole.
Talking at some length about the coming devestation if this disease is not conquered.

they do this all the time they show what they want im sure lile how i have autism an ld an there a spectrum .im sure it the same for ad but they allways show what will look best for tv ,i want to hide out eveytime the new dose a storey on autism cuse they 1 only show kids as if we magilcy dispare .or grow out of it and usly show the most severe or worst acting behavior possibly .then me an my friend have to deal withg dumb qwustion from those less edcuted .so i guss tv is tv were it documarty or not