man playing guitar with granddaughter

Alzheimer’s disease: ‘A really humbling experience’

April 07, 2016 | Heather Shannon
Bill and Nancy Edwards in their earlier years

Nancy Edwards never met a stranger. “To her, you were a friend she hadn’t made yet,” her daughter Heather remembers. When her personality began to change in 2003, however, the family became concerned.

“Her personality got very argumentative. We didn’t know what was going on.”

It was a startling change for Nancy Edwards, a woman who had friends all over the world.

Her husband Bill’s work in the oil industry had sent the family to live overseas in such far-flung locales as Indonesia, Turkey, China and Hong Kong.

'She had a lot of empathy for people'

Nancy, who worked as a registered physical therapist in the United States, couldn’t get a work permit overseas. Instead, she volunteered, training nurses and physical therapists in hospitals, villages, orphanages and, once, a leper colony.

“She had a lot of empathy for people,” Bill recalls. “And she was always going.”

Concerned about Nancy’s behavior change, her family convinced her to see a UCI Health doctor for a physical. “She lasted about 10 minutes into the physical. She couldn’t follow directions,” Bill says.

Nancy’s doctor suspected the beginnings of Alzheimer’s disease.

The horrible thing, Bill says, is that because of her background and work with Alzheimer’s patients, Nancy knew what was happening.

Coming to UCI MIND

Nancy was referred to neuropsychologist Malcolm Dick, PhD, at the UC Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND) Memory Assessment and Research Center for further testing.

The Edwards family will be forever grateful for what happened after Nancy’s written and spatial tests were completed.

Knowing that Nancy had been a physical therapist, Dick said, “Nancy, let’s you and I go over the test and you tell me what the results are.”

In that moment, he gave her respect as a clinician, Bill says. He could see the positive effect it had on Nancy. “I’ll never forget it. Every time I see him, I thank him for that.”

Brain disorder research

UCI MIND is an internationally recognized research center that focuses on brain disorders, particularly those that are related to age. It is also an Alzheimer’s Disease Research Center (ADRC), designated by the National Institutes of Health. Its research is devoted to discovering the causes of and a cure for Alzheimer’s disease and other neurological disorders.

Every participant who comes to UCI MIND receives a comprehensive evaluation from a multidisciplinary clinical team that also includes a neurologist. UCI MIND clinicians bring state-of-the-art methods to accurately differentiate between normal aging, mild cognitive impairment (MCI) and dementia.

Nancy was just 57 years old when she was diagnosed with Alzheimer’s disease.

About Alzheimer’s disease

Alzheimer’s is a neurologic disease that degrades memory and handling daily activities. It is progressive and irreversible.

While no cause has yet been found, researchers at UCI MIND and around the world have made great strides in finding potential causes. Although there is no cure, there are some treatments that can improve memory and function.

Because Alzheimer’s can only be definitively diagnosed after death, researchers rely on donated brains to identify the causes, as well as the process, of the disease.

When patients enroll in the Alzheimer’s Disease Research Center, they become part of a research project and agree to donate their brain to the program after death. They are invited to consider opportunities to participate in clinical research and clinical trials to help move science forward.

The brains are then autopsied and dissected for research. While some portions remain with UCI MIND for research studies here, other portions of the tissue are sent all over the world to be used in other research studies.

Nancy made the decision herself to donate her brain, and it wasn’t a hard one to make. “She always wanted to help people,” daughter Heather says.

UCI MIND researchers followed Nancy for the rest of her life, doing tests and studies as her disease progressed. She came in for physicals and testing every three months. She visited the UCI Health SeniorHealth Center regularly for primary care.

This regular evaluation is key. It enables researchers to pair what was happening to the patient with changes in their brain to better understand the disease.

‘A really humbling experience’

Nancy passed away in March 2015. She was 68.

Several months later, the family received the pathology report. It confirmed that Nancy had Alzheimer’s disease, which can only be definitively diagnosed from a brain autopsy.

UCI MIND didn’t just help Nancy, however; the program provided emotional support to Bill and their daughters.

“They let us know what was going to happen in terms of the progression of the disease, and they were very sympathetic to what we were going through,” he says.

UCI MIND also helped Bill and the family understand the reality of their situation.

“In my life, I always find a solution to everything, up until this. This was a really humbling experience.”

Bill Edwards with his two daughters and granddaughter

Life after Nancy

Bill shows his gratitude to UCI MIND by serving on the leadership council. He also established the Nancy Imlay Edwards Foundation to support further research.

“Almost no money is being spent on this, relative to other diseases,” he says. “If only we had 50 times as much funding, we could do something about it.”

The family is heartened to know that even in death, Nancy continues to help people as she did in life.

Bill also participates in a support group for men with spouses who have Alzheimer’s, where he provides valuable perspective as someone who has been there.

“It’s really interesting to hear people who are still trying to talk themselves out of the fact that the decline is going to occur.”

Bill says many people in his support group have physicians who don’t truly understand Alzheimer’s disease, so he feels especially lucky that his family had the support and knowledge of UCI MIND.

“We knew what was going on all the time. So many people don’t know what’s going on, what it is. I feel like we were really lucky.”

Make an appointment

If you or a loved one are experiencing the symptoms of memory loss, disorientation and confusion indicative of mild cognitive impairment, Alzheimer’s disease or a related condition, contact UCI MIND to learn more about research and educational offerings.

Individuals interested in participating in research may qualify for studies that examine both normal individuals as well as those with a cognitive impairment.

For more information, call 949-824-2382.

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Comments

Linda Scheck
April 12, 2016

Thank you to Bill Edwards for sharing his personal story about his wife Nancy and her generous role in research at UCI MIND. He discusses the urgency for research to stop Alzheimer's and makes plea for more funding.

Judy Dickinson
April 19, 2016

Thank you Bill and family for all you have done for UCI MIND. My mother died from Alzheimer's disease when she was 66 years old and now my husband has MCI. I pray the research can do something for him and all the others who have been diagnosed or are at a high risk of being diagnosed.
Just hearing your story, thank you for all the love your provided your wife, mother and grandmother - Nancy.

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