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Pace of Alzheimer's treatment, research among frustrations

Posted June 16, 2011
Updated June 22, 2011

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— Dave Simpson is dealing with the loss of his mother. Lois Shoolbred, 81, who is known affectionately as Lo Lo, has Alzheimer's disease, and her family is watching her fade and change, bit by bit. They are among the millions of families in America dealing with the disease.

Dr. Dan Kaufer, a dementia expert with UNC Health Care, says, “It's really, in many ways, a silent epidemic.”

Kaufer says he is frustrated by the slow progress in the treatment of Alzheimer’s. Unlike attacking a cancerous tumor or high blood pressure, gauging the success of dementia care remains painfully elusive.

“We can do pencil and paper test and measure how good their memory is, how good their language is, but we don't have good ways to measure how well we are able to maintain their sense of 'personhood',” he said. 

UNC will soon take part in a clinical study of a potential Alzheimer's vaccine. But Kaufer says he's most encouraged by the prospect of brain imaging, that, if approved by the U.S. Food and Drug Administration, could allow doctors to identify the proteins linked to Alzheimer's earlier in a person’s life.

“We, hopefully, one day, will be able to diagnose people who are in the first stage of Alzheimer's disease before any clinical symptoms show up,” he said.

After a diagnosis, many families turn to a support group like Alzheimer’s North Carolina Inc. Alice Watkins, head of the group, said awareness of the disease and its treatment is growing, but the devastating diagnosis often overwhelms families with the emotional and logistical challenges of caring for a loved one.

“Let us begin the process of helping them cope with the disease, get them in a support group, find out what resources are needed,” she said.

Kaufer believes that Alzheimer’s care takes a family, like Lo Lo's, to cope. “The people who can make a difference are the families who see first hand what Alzheimer's does to their loved one,” he said.

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  • THE ETERNAL Jun 22, 2011

    A teaspoon of organic coconut oil daily seems to help some people.

  • bigbadbill Jun 20, 2011

    My mother has the disease - at first she would repeat conversations she just had, and then progressed to advanced stage where now she will speak to her image if seen in a mirror as if it were a new person in the room. I look back on before she had the disease, when she used to see others on TV with Alzheimers and say "don't let me be a burden like that - put me in a home somewhere" and of course we will never comply with that request. The disease is certainly the most cruel to those who have it. She has always been a very proud woman and we try to maintain her dignity as best we can.

    Hopefully research will make some progress, at least for those of us who have a family member afflicted and are staring at the spectre of our diagnosis in the future. It appears there is very little hope for those in the most advanced stages, like my mother. Hopefully some of the work done at UNC and elsewhere will make progress - she is a UNC graduate and would certainly be proud of her alma mater.

  • UNC1985 Jun 17, 2011

    This was a great documentary.

  • wjfairbanks5 Jun 17, 2011

    So happy that WRAL did this story on Lo Lo and her family. We are dealing with this now with my Dad. Very tough not only on my brother & I but the entire family. One of the toughest things is when Daddy asks "I'm not losing my memory am I" We always reply, No Dad, you're fine" This has to be one of the most horrible diseases that a family has to face. Thank you Simpson family for sharing LoLo and your lives with the rest of us, especially those of us who are dealing with Alzheimer's in our own family. Some how it helps us not to feel so alone in all of this

  • gypsygilliam Jun 16, 2011

    What an amazing family God gave LoLo to help watch over her during this part of her life. May God
    continue to bless all of them.

  • Mom on Call Jun 16, 2011

    Thank you to WRAL Documentary and Cullen Browder for doing such a great job with Lolo's story. You put a true face on what families affected by Alzheimer's are going through. Thank you to the Simpson family for being brave and courageous to allow the rest of the world in. My husband's mom is in the very late stages of ALZ...not an easy journey to witness.

  • UNCfuturealumi Jun 16, 2011

    Prayers for all families that are going thru this and I do hope that the $$$ they raise will go into finding a cure and not into the wallets of the administraters..

  • dezzell56 Jun 16, 2011

    I am going throught this with my mother right now.She is 83 yrs old, she has had cancer 2 an a pacemaker put in.She has had her neck operated on, knee replacement.She can't see or hear that good any more.I am by my self dealing with it all. she knows whats wrong, an gets mad at the world.I work full time an come home to take care of her.People need help with this disease,I am having a hard time dealing with the memory lose,she cries when she can't do the things ,she use to do.She has been in a rest home twice cause i couldn't deal with it any more,now she is home.She says if i put her back in a home again she will kill her self.an tht hurts me.

  • justafella Jun 16, 2011

    Went through this with my Dad. I truly hope and pray doctors and scientist can find a cure some day soon.