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Sharing the news and the specifics of one’s disease with friends and family can be difficult and uncomfortable, but receiving emotional and social support can be a life saver. The third of a five part series on living with Alzheimer’s in North Carolina.
By Michelle Cerulli
It was an evening in October 2007 when Joan and Bill McCormick sat down in front of their computer in their Hillsborough home after dinner.
They were going to write a letter.
A year before, in March 2006, Bill became involved with the Alzheimer’s Disease Neuroimaging Initiative (ADNI1). The program is the largest public-private partnership in the history of Alzheimer’s disease research, according to the National Institutes for Health.
The initiative, led by the National Institute on Aging, included a five-year study that aimed to identify biomarkers of Alzheimer’s disease. (A second study, ADNI2, is enrolling participants through August 2013 and will run through 2017.)
In the original study, 800 adults age 55 and older, were divided into three groups: people with Alzheimer’s, people with mild cognitive impairment (MCI), and people without memory problems.
Participants in the Alzheimer’s group tested for cognitive problems and reported impaired daily functioning, while those in the MCI group showed cognitive problems but no impairment to their functioning.
Bill McCormick was initially placed in the MCI group.
Every six months for two years, he went to Duke University Medical Center’s Department of Psychiatry and Behavioral Sciences for cognitive testing and brain scans as part of the study. Bill also had two spinal taps.
Close friends and family knew about Bill’s health. Joan and Bill told them about his neurodegenerative disease diagnosis back in 2003, after visiting with his neurologist, Dr. Michael Soo, in Durham.
But as time went on, the McCormicks realized Bill’s condition was likely headed toward full-blown Alzheimer’s. Bill’s brain scans showed hypometabolism, the brain’s decreased use of glucose for fuel, a finding consistent with Alzheimer’s.
So sitting in front of their computer that October night, Joan and Bill began to write a letter to tell neighbors and friends they didn’t see regularly about Bill’s condition.
Dear friends, I want to share information with you concerning my health…
No clear answers
The exact cause of Alzheimer’s is not known. Researchers are designing tests to measure the two hallmarks of Alzheimer’s disease, plaques and tangles in the brain. Many people develop these protein-based structures as they age, but Alzheimer’s patients develop many more. While the number of plaques a person has does not correlate with his or her degree of dementia, there is a correlation between the amount of tangles and the degree of the disease.
Some researchers believe plaques and tangles damage nerve cells and disrupt communication in the pathways of Alzheimer’s patients’ brains. But no one knows how and why these structures form. Researchers don’t know if they cause the disease or are merely symptoms of it.
What they do know is that Alzheimer’s is not a part of the natural aging process. Still, age is its greatest risk factor.
Blood and spinal-fluid tests for biomarkers – molecules found in blood or tissues that can be used to measure disease progress – might someday improve the accuracy of an Alzheimer’s diagnosis. However, these tests are research tools, and not yet standard clinical practice.
The hope is that biomarkers will eventually help determine if someone is at risk for Alzheimer’s before symptoms appear.
Facing the changes
It took time for Joan McCormick to convince her husband Bill that writing a letter to friends and family was a good idea. Bill eventually realized that he would need neighbors’ assistance if Joan ever needed help that he couldn’t provide. They needed to know about his disease.
Perhaps you have noticed I am a little different from my old self. I have a cognitive disability categorized as “Mild Cognitive Impairment” or “MCI.” This is a condition that statistically often progresses to Alzheimer’s disease.
Bill, unable to type anymore, dictated while Joan typed.
My greatest difficulties are with visual-spatial tasks. My navigational compass is disabled. I have some difficulties with memory and processing multiple tasks or sequences. I experience these difficulties on a fluctuating continuum and therefore have better and worse times.
Bill said he wanted the letter to be helpful and honest. He wanted friends and neighbors to know they could ask questions.
I share this information about me to increase your understanding of me and perhaps make our interaction more comfortable. I would be grateful for your assistance if Joan is ever incapacitated. Your greatest gift would be to interact with me normally now that you understand my “new normal.”
Over the next few weeks, Joan and Bill hand-delivered the letter to neighbors. Bill visited the school where he was principal and gave the letter to colleagues with whom he was closest. Joan slipped the letter into Christmas cards to extended family, old college friends and others.
Joan said she found the act of sending the letter to be freeing. She felt relief that more people would know about Bill’s condition.
In March 2008, Bill was switched from the study’s MCI group to the Alzheimer’s group.
Baby boomers’ disease
Researchers and medical professionals call Alzheimer’s the defining disease of the baby boom generation, the oldest of whom turn 66 this year.
Most of the 3 to 5.4 million people in the U.S. with Alzheimer’s are 65 or older; however, the disease affects about 200,000 younger people as well. Early- or younger-onset Alzheimer’s refers to people like Bill McCormick who are younger than 65 when diagnosed.
Bill still has what doctors call “insight” about his disease. Bill started in a support group of the same name, an effort between the Orange County Department on Aging and UNC’s Memory Disorders Program. The group is for people with different types of dementia who are still aware of their disease and want to talk about it.
Though Bill and Joan belong to a couples’ support group, the insight group is for patients only. Its leaders evaluate patients once every year to make sure they remain a good fit. Bill still belongs to the group.
February 2011, Alzheimer’s North Carolina office, Raleigh
Joan and Bill and six other couples sat around tables arranged in a large square at the Alzheimer’s North Carolina office in Raleigh.
The meeting started off as it usually did. Dee Dee Harris, one of two group leaders, welcomed everyone. Harris is the Family Services Director for Alzheimer’s N.C., a non-profit that provides support and education about Alzheimer’s to families in the Raleigh community.
Harris turned to the couple on her left. She asked the husband, who has Alzheimer’s, how he has been. Were there any recent problems he’d like to share?
Dressed in a crisp button-down shirt, the gentleman talked about his wife’s recent acquisition of two more cats. The couple bantered back and forth. Harris asked questions, and some of the other couples shared their own pet stories.
The seven couples varied in age and disease stage. Five of the seven caregivers were women. Joan and Bill McCormick were one of the younger couples; the oldest was in their 80s. One couple was African-American, the rest were white.
When it was Bill’s turn to talk – about how he had been and what was on his mind – he started slowly, like he usually does.
“I guess I’ve been pretty good,” said Bill, with Joan beside him. He told the group that he had been listening to books on tape.
Visual and spatial problems had been Bill’s worst symptoms throughout his experience with MCI and then Alzheimer’s. He often tripped while walking. At home, he sometimes entered his bedroom when he meant to go into his office.
These visual problems eventually jeopardized Bill’s ability to read. He wore glasses, like most of the people in the room, but his glasses no longer helped him read. This had been the most devastating aspect of Alzheimer’s for him so far.
In the past, Bill would sneak away into his office for hours to read everything he could about U.S. history and English literature. One wall of the McCormicks’ living room is filled floor-to-ceiling with hardcovers and paperbacks, books he can no longer enjoy.
Joan made sure Bill could have a replacement for his favorite hobby. She contacted the North Carolina Library for the Blind and Physically Handicapped and found out about its books on tape loan program.
“We had to have our neurologist sign an application,” Joan told the group. “But it’s very easy.”
A few of the other spouses jotted down notes.
The meeting kept on this way. Several minutes later, it was Dot’s turn to talk about how she had been. Her snow-white hair matched the color of her sweater. She looked at least 80 years old. Her husband, who was her primary caregiver, was sitting beside her.
“And how are you today, Dot?” Harris asked.
“Oh, I’m just fine,” Dot said.
Dot began elaborately detailing the family reunion she and her husband went to since the last support group meeting. She told everyone how wonderful it was to see her whole family and how much fun they had. Her eyes were bright, and her husband gazed at her as she spoke. She periodically looked to him for confirmation. She said she felt like she was doing pretty well.
When Dot was done speaking, Harris asked Dot’s husband if there had been any changes.
“Well,” he started slowly, looking at his wife. “She hasn’t been doing very well.”
He paused again. Then, gently, he said: “I’m not sure what she meant about the family reunion because we didn’t go to anything like that. We saw our son though.”
The room became very quiet.
Michelle Cerulli prepared this series as her master’s thesis for the School of Journalism and Mass Communication at UNC Chapel Hill. You can follow her on twitter @michellecerulli.