Originally aired January 18, 2002

When most of us think of Alzheimer’s Disease, we think of elderly people nearing the end of their lifetime. But that’s not the case. More middle-aged people are diagnosed everyday.

ADDITIONAL INFORMATION: •Alzheimer’s Association: http://www.alz.org/ •“What is Alzheimer’s” -index to a variety of information on Alzheimer’s: http://www.zarcrom.com/users/alzheimers/w-index.html#w13 •University of Nebraska Medical Center: http://www.unmc.edu/

For people in their 40s and 50s, Alzheimer’s tends to be much more devastating than for the traditional patient, because the early onset victim may still have a job and kids living at home. Also, they don’t qualify for many federal programs because they’re not old enough. Medical researchers have learned more in the past 10 years about Alzheimer’s than ever before, but there’s still a long way to go before any cure is found.

VIDEOS

Watch the Perspective story here: | Click Here For Video

TRANSCRIPT

Transcript of Perspective

Reported by Statewide correspondent, Andrea Gallagher.

Memorial Stadium in Lincoln holds around 76-thousand people…the same number of Nebraskans who suffer from Alzheimer's Disease or have a loved one who does….across the nation - 4 million people are afflicted with the mind-robbing disease. Perhaps even more disturbing - an increase of younger people - in their 40s and 50s are being diagnosed with this disease. It's called Early Onset Alzheimer's.Sheila Bracken's husband found out he was a victim when he was only 51 years old.
[Sheila Bracken]"It was very frustrating. Sometimes I didn't want to get out of bed because I knew I was going to face the same question over and over and over again and I'd look around and there was somebody attached to my right hip."
At the time, Paul Bracken worked for AT & T…setting up phone systems around the world. When he started getting poor work evaulations - something he never received before - she knew something was wrong.
[Bracken]"He was using the wrong credit card for work things, and getting lost. We would have a lot of scenic routes and area tours when we would get places. Eventually he would have a poor job performance at work that precipitated us going to the doctor's and getting evaluated."
The only way to diagnosis the disease is to eliminate everything else. So the Brackens ruled out a brain tumor, sleep disturbances, and eventually came up with early onset Alzheimer's Disease.
[Bracken]"If anybody asked him what was wrong with him, he would tell them that his brain was drying up."
For 18 months, Sheila took care of her husband at home as the primary caregiver.
[Bracken]"He became physically abusive to the point where he would grab hands, strike out. I say that it was his last present to me was a smack in the face because that eliminated all the guilt of having to place him in a nursing home. I knew I was not safe at home. My children also agreed, they saw the bruises on my face."
Sheila says one of the most difficult things was watching an intelligent, lively man turn into the equivalent of an 18 month baby - in just a matter of years. He passed away only a few months ago.
[Bracken]"He was smart, he was personable. He loved people. He would do anything for you. As my son said, he would not only give you the shirt off his back, but pay to have it cleaned and then apologize for not having enough. And then to have him turn around and become what he became at the end was pathetic."
[Dr. William Burke/UNMC]"The burden particularly falls on the loved one, because they act as a representative for them and it makes it very hard for them because the person is not understanding, not recognizing it. Often times they have do things that person doesn't see any need to do like stopping driving or stopping work, so it can be very difficult."
Dr. William Burke sees many early onset patients and takes part in national drug studies for Alzheimer's medications.
[Burke]"We have been involved in the testing of the 3 drugs that have been approved for treatment right now as well as a number of medications that haven't made it to the marketplace."
"Currently, there are 3 primary drugs on the market for Alzheimer's Disease….aricept…exelon and reminyl was just approved by the FDA last year…..some help slow the progression of the disease, but none are able to stop the harmful effects of Alzheimer's."
[Burke]"All the drugs out there do basically the same thing - which is to increase the amount of a chemical in the brain, and they're modestly effective. For some people, very helpful, and for other people - less so, but it's nice to have at least some treatment available."
The brain of someone with Alzheimer's has abnormal clumps and tangles in the tissue…but the only way to make a definite diagnosis is during an autopsy. Dr. Burke says he's seeing more early onset patients - the youngest he ever saw was 29 years old. He does see more men than women - and they tend to be more educated.
[Burke]"We've had a surprising amount of men and a surprising number of professionals and very well-educated patients. I don't know if that's just a fluke because it doesn't seem to run by gender, and higher levels of education should be protective in some ways, so we really don't understand them very well."
Dr. Burke says in some rare cases…families have the Alzheimer's Gene and there's a high risk the next generation will inherit that gene. Sharon Colling's family is one example. She had numerous relatives with the disease, and most of them developed it in their 40s and early 50s.
[Sharon Colling]"First my grandmother, which is my mother's mother, I also had a maternal aunt, uncle, my mother and now my brother with Alzheimer's. Along the same generation as myself, I know at least 2 cousins who have been diagnosed with Alzheimer's."
Sharon was fairly young when her mother, Dorothy, started to show signs of dementia.
[Colling]"But I did know very early that something was wrong with mom. Dad tried to compensate and cover up and maintain as normal a life as possible, but things were certainly starting to go haywire at our house and there was no denying that."
Sharon took on the role as caregiver at a very early age. She helped her mom balance the checkbook when she was only in the 7th grade. But probably the hardest thing to deal with was her father's attitude toward the disease.
[Colling]"Dad did not want anyone to know that something was wrong with mom. He felt very much that it was a mental illness and people of that generation, there's a stigma attached with mental illness, so he wanted to pretend that we were a family and I think that was his coping mechanism."
Sharon now works as an administrator at a Tecumseh Nursing Home. She has seen the disease affect those she loves, and those she works with everyday. She also travels the state and educates people about the disease and how to cope.
[Colling]"It's my personal belief the best thing we can do is educate the public on what A.D. is and is not and what they can do to deal with the disease and where they can go for answers."
The cost of care is also a burden. Years ago, Sharon's father divorced her mother to get financial help from the state. Today, many couples don't have to resort to this because of new laws that protect the couple's assets.
[Colling]"The only thing they could do to take care of mom was to get a divorce. Because to save the assetts of the business and the house, and they still had me at home as well. That was very devastating for dad. It wasn't for mom because she didn't realize what was going on."
Over at the Alzheimer's Association of Eastern Nebraska, they mostly deal with families who have older relatives with the disease. When the time comes to help an early onset family - it's a whole new ballgame.
[Carol Feelhaver/Alzheimer's Association]"Traditionally it's supposed to be a disease of the elderly, we know that's not true anymore. It's hard because that person is still young, and he/she can still do things and contribute and is still able to be part of society and the environment and it's all just taken away from them very drastically."
Alzheimer's Disease changes relationships. Many times, friends and relatives struggle to deal with the disease.
[Bracken]"Some of them were very supportive. They were there from the beginning to the end. Others said they wanted to remember him the way he was and not the way he became, and we were just abandoned by them."
[Burke]"Family members often times have denial, and I think pretty naturally so, because it's a pretty devastating thing to learn."
[Feelhaver]"People that were your friends can no longer be your friends because they can no longer deal with this. You need to develop a new support system." Alzheimer's Disease was discovered close to a hundred years ago by Alois ALzheimer….and though researchers have made great strides in the past 10 years - there is still no cure. Why is it such a difficult disease to understand?
[Burke]"I think the biggest factor is the fact that the brain is by far the most complicated organ in the body."
Dr. Burke says it's hard to predict what will happen in the future….but there is hope.
[Burke]"There is one lead that is a very hot lead at the moment, in that there is a vaccine for A. D. that just started clinical trials in humans, and a very small number of patients and we probably won't know the results for a year or two. With animal models of A.D. this vaccine has looked very promising. IF that would hold in humans, it might allow us to have a good treatment without understanding the illness fully."
Sheila Bracken continues her ties with the Alzheimer's Association and hopes to see the day when a cure is discovered.
[Bracken]"Our family has been put through hell and back because of this disease and if there's anything out there that can prevent this from happening to someone else, it needs to be done. I have to think of my children and my grandchildren and think that there's a possibility that this could happen to them and I don't want that to happen."
Sharon Colling took care of her mother at a young age….and her mother took care of her mother at a young age as well….she hopes history won't repeat itself again….
[Colling]"It's too late for my mother…probably too late for my brother, but I'm hopeful for all my children that by the time they're old enough to be dealing with this disease, that we'll definitively know the causes and have effective treatments if not a cure."
It's estimated the number of people with Alzheimer's Disease will jump to 14 million by the year 2050….unless a cure is found

Reporting for STATEWIDE, I'm Andrea Gallagher.