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Understanding Alzheimer's: Patients, caretakers can struggle with the stigma of the disease

Posted Aug 03 2010 12:00am 1 Comment
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By Katherine Kipp ~ Southeast Missourian

A brain scan is shown. Protein deposits around neurons in the brain can be a sign of dementia or Alzheimer's disease.

People who suffer from Alzheimer's disease sometimes never seek treatment because of a fear of the stigma attached to the disease, which is considered the seventh leading cause of death in the United States. Alzheimer's tears down a patient's brain, leaving them without the ability to remember significant events or faces, or the ability to perform day-to-day tasks. The disease afflicts 110,000 in Missouri alone and, as of yet, there is no cure for it as researchers continue to hunt for Alzheimer's cause.
"It's a very hard experience when you go visit [family members] and watch the decline and see them taken from their home because they can't support themselves," said Rhonda Bramlett, a nutritionist for the Southeast Missouri Area Agency on Aging and a volunteer for the Alzheimer's Association Memory Walk committee.

Bramlett and Lisa Hicks, one of the Alzheimer's Association outreach coordinators in Southeast Missouri, said getting rid of the stigma and encouraging people to seek help are the most important factors. That's where both the Alzheimer's Association and neurologists in the Cape Girardeau region come into play.

"Alzheimer's is a disease where abnormal structural changes are taking place" in the brain, said Dr. Abdul Basit Chaudhari, a neurologist at Neurosciences Center of Southeast Missouri Hospital. "People need to have a better understanding of these occurrences or signs of Alzheimer's. If we know they are occurring, it can be the key to solving the problem."

Alzheimer's falls under the umbrella of dementia, in which the brain is weakened because of many possible reasons, including head injuries, strokes, high cholesterol or diabetes that stress the brain.

"Dementias are basically problems with thinking. Usually it's memory, and all dementias have a pathology behind them," said Dr. Andrew Godbey, a neurologist at Cape Neurology Specialists, part of Saint Francis Medical Center.

Godbey said to initially diagnose a dementia patient, a doctor takes note of protein deposits accumulating around different neurons in the brain. For an Alzheimer's patient, protein deposits will initially develop around short-term memory cells before spreading, which explains the person forgetting about talking to someone or forgetting where they are going in the early stages. As the protein deposits spread, so does the memory loss.

"At first, it's remote memory," Godbey said. "It develops to where you can't remember how to feed or dress yourself, or even understand your own language."

Symptoms such as losing communication skills or becoming confused with one's surroundings are also a result of the neurotransmitters in the brain not being able to communicate with each other, Chaudhari said. An effect called "sundowning," where a patient becomes more confused at night, can be a major indicator of Alzheimer's.

"Memory neurons are needed, and [researchers] have discovered that is what is lacking in Alzheimer's patients," Chaudhari said. "The neurons are not functioning or are destroyed."

The protein deposits are a major part of what researchers are trying to figure out as they spend billions of dollars to find the root cause of Alzheimer's and why these protein deposits accumulate. Much of this funding comes from the Alzheimer's Association Memory Walk, which takes place each fall in cities across the country. Cape Girardeau's walk will be Sept. 18.

Until researchers develop a cure or better medication, they suggest families coping with an Alzheimer's patient seek what treatment is available and maintain a healthy lifestyle at home.

"At home, keeping them busy with quizzes or literature [that] is challenging," Chaudhari said. "Participation is good for them."

Staying healthy through exercise and diet is another suggested way to try to slow down Alzheimer's, Bramlett said.

"Any diet where you get a high fruit and vegetable count with the omega-3 oils is helpful," she said.

Godbey said preparing an Alzheimer's patient and the family for the long road ahead is just as important as treating the patient. He emphasizes the importance of making sure the caretaker is prepared for things to come.

"Alzheimer's patients don't have insight into their problems, they don't think there's anything wrong at all," Godbey said. "But their personalities can change, and they can become very agitated and aggressive. [The caretaker] has the burden of taking care of the patient, and it's important to gauge how the caretaker is doing and engage them in support groups. It's much better when you have someone who is going through the same thing to talk to."

As an outreach coordinator, Hicks offers seminars on how to deal with Alzheimer's patients and help them develop good communication skills.

Hicks helps coordinate not only support groups, but educational programs for families and health care professionals in an effort to spread more awareness about Alzheimer's. She worked as a nurse with Alzheimer's patients for 25 years before coming on board with the association.

"We're here to offer the best care and education possible, and to help advance research and promote brain health," Hicks said.

She said she emphasizes the 10 warning signs and the fact Alzheimer's "is not normal for aging, and not everyone is going to get it, but there are a lot of help and resources out there for those who do."

Researchers are currently exploring the relationship of vitamin D and Alzheimer's.

Godbey said research shows people with vitamin D deficiency oftentimes have MS, Parkinson's disease, Alzheimer's disease or other complications.

"We have discovered many great effects [in vitamin D]," Chaudhari said. "However, I don't think we can say that by taking doses of vitamin D that we can benefit, but someone who has a vitamin D deficiency should take it."

According to the the Alzheimer's Association, 5.3 million people in the United States have Alzheimer's disease. The association estimates that by 2050, up to 16 million people will have the disease unless a cure is found.

"The population is getting older," Chaudhari said. "It's a very devastating disease. People are supposed to be getting into their golden years and then something comes and robs them."

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My mother is 78 and has Alzheimer's - which was diagnosed in December, 2009. In your publication you say that patients with Alzheimer's 'don't have any insight to their problem'. Well i can assure you they do. My mum gets really upset with the fact that she can't remember things - family names, objects, what she did the day before, what she had for lunch. So she certainly knows 'something is wrong'.

I do debate some of the information you have written in this publication as some facts just aren't correct.

-- Posted by mariesandra on Tue, Aug 3, 2010, at 9:07 AM
I agree with mariesandra. It is hard to say exactly how someone with alzheimer's disease or a related dementia will behave and how they will feel. Certainly in the early phase of the disease, these individuals know something is wrong. It can be very frustrating to them. It is best to provide them with memory aids and give them meaningful things to do and look at.

By Susan Berg author of

Adorable Photographs of Our Baby-Meaningful Mind Stimulating Activities and More for the Memory Challenged, Their Loved Ones and Involved Professionals a book for those with dementia and an excellent resource for caregivers and healthcare professionals.

-- Posted by alzheimersideas on Tue, Aug 3, 2010, at 6:13 PM
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