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Doreen Monks living with Alzheimer's disease

A long to-do list

Doreen Monks

New Jersey, United States


Retired neuroscience nurse practitioner


Early onset Alzheimer’s disease (2015)

Currently, Doreen is busy planning her 70ᵗʰ birthday party, something she is delightfully surprised to be able to do. Eight years earlier, Doreen received a diagnosis of Alzheimer’s Disease and credits the early diagnosis for helping her stay positive and make the best of her situation. * Now, her lengthy party guest list includes her support system, who helped her navigate the past eight years.


Doreen is no stranger to Alzheimer’s Disease and related disorders. She was a caregiver to her mother in the early 2000s and credits her self-advocacy as a differentiating force between her experience and her mother’s: Despite scientific progress, how Alzheimer’s affects individuals remains uncertain.¹

A brain health expert 

A self-described “brain nerd” Doreen has always been fascinated with the brain. She turned this passion into a career, obtaining her RN degree from Clara Maass Nursing School in Belleville, NJ, before graduating with her master’s degree from Seton Hall University. Her career led her to Cooperman Barnabas Medical Center where she began working with top neurology doctors, developing the stroke program, and teaching nurses, residents, and doctors. She fondly recalls telling her students, “Name any brain disorder, and I have two stories about it!”  


In her spare time, Doreen was an avid reader. She would read through a book a day, paging through medical journals and academic brain research. The brain was part of Doreen’s identity. One day, her relationship with the brain faced a new dimension.  

“As a nurse, I became the family spokesperson. I began noticing dementia symptoms in my mother and her diagnosis was easy to accept because I knew what was going on. Caregiving was challenging yet rewarding.”  Doreen Monks

Beginning to make little mistakes

In March of 2015, Doreen, at age 62, was visited by the stroke program medical director. The two had worked together for over 5 years and developed a close personal friendship. But the conversation wasn’t an easy chat between friends. The tables had turned and, to Doreen’s surprise, she was now the patient.  


It started with subtle changes and a change in her usual approach to her work. Her work, which she usually did without effort, now was showing to be more difficult. Her colleagues started to notice these changes and discussed with the stroke program medical director who decided it was time for a heart-to-heart conversation. It was her friend, a neurologist, who broke the news that she should consider being evaluated for Alzheimer’s.  


“To me, living with Alzheimer’s disease is like driving the same route to your happy place then someone shakes the map, and you don’t know where you are or where you’re going. I chose to learn the new route.”  

A long road to diagnosis 

Doreen bounced around the healthcare system for over a year, cycling through four neurologists until she could find a trusted partner. Over the course of this journey, one experience stood out as particularly distressing.  


A common sequencing test called Serial Seven studies executive function.² The goal is for patients to sequence down from 100 three to four times. Doreen conducted this test countless times on patients throughout her career. When it was time for her to be the patient, the nurse practitioner began the test incorrectly. Doreen told the practitioner, “’Hold it. That’s not how you do the test.’ I knew what I knew, and the point of me going to a neurologist is because they’re the expert and know more than I do, not less.”  


Doreen knew the steps to diagnosis and sought out a cognitive neurologist.  


Her knowledge and determination led her to choose a neurologist to help with the diagnostic process, someone with whom Doreen worked and trusted from her time at Cooperman Barnabas. She underwent a year’s worth of various testing including an in-depth neuropsychological testing, which is a 3-hour testing process that assesses multiple levels of cognitive evaluation such as IQ, speech and thought processing evaluation. Doreen learned she tested at a mild cognitive impairment level. She proceeded to undergo several MRIs and electroencephalogram tests (EEGs), and the results came back showing atrophy in the frontal lobe. She knew she was getting closer to the truth, but atrophy alone doesn’t equate to an accurate Alzheimer’s diagnosis.³


The only way to test for and see amyloid and tau proteins is through the use of specialized amyloid and tau PET scans.⁴ "I just wanted to know what was going on," Doreen explained. And, a year and a half later, after fighting access issues and other roadblocks, her persistency and self-advocacy paid off, and she was able to get a routine PET scan. While not able to show amyloid plaque, the routine pet scan can show a pattern consistent with Alzheimer’s. Within 12 minutes of the scan, she got the call from her neurologist who, after reviewing her history and prior and current test and scan results, told her, “It was Alzheimer’s. I’ll see you in two weeks at your next visit,” and hung up. 

Making a game plan 

Knowing the positive impact an early diagnosis can make for someone living with an Alzheimer’s diagnosis, Doreen immediately took to the internet searching for community groups that specialize in Alzheimer’s disease, which is where she “found The Alzheimer’s Association and Us Against Alzheimer’s.** On the Alzheimer’s Association website, there is a newly diagnosed checklist with what to do after receiving diagnosis.” Doreen got her affairs in order: setting up regular medical care check-ins with her neurologist, financial and legal planning and identifying emergency contacts.  


Studies show that early diagnosis is critical for Alzheimer’s patients and caregivers.⁵⁻⁶ It can help patients manage their symptoms, such as reducing the rate of decline, leaving more time with slowed cognitive impairment, higher quality of life, time for individuals and their caregiver to plan for the future, and allows for better chances to be clinical trial candidates for new treatment modalities.⁶  

Hopes for the future 

Today Doreen helps manage her Alzheimer’s symptoms by eating right, maintaining an active lifestyle, and using tools like calendaring every detail and setting timers and alarms on her phone for events throughout the day.   


It took over a year and multiple neurologists for Doreen to receive a diagnosis. Doreen finds this lengthy process unacceptable. To help spread the word about early diagnosis and destigmatize the disease, she’s fully retired from the hospital and spends her time acting as an advocate for those with Alzheimer’s disease, promoting early diagnosis, including how to talk to your physician and choosing the right neurologist for you, and showing others with the disease that there can be a life after diagnosis and it can be a good one, as experienced by Doreen.


“I want to change the image of Alzheimer’s. It’s not just the old lady in the nursing home, it’s also me.” And Doreen is a sharp, tenacious, humorous woman who sees a bright future ahead for herself. “As soon as my 70th birthday party is over, I’m going to start planning my 80th.”***

This article is not intended to provide medical advice. Talk to your healthcare provider if you have questions or for more information. 

*Alzheimer’s disease is a brain condition that causes a progressive decline in memory, thinking, learning and organizing skills. It eventually affects a person’s ability to carry out basic daily activities. Alzheimer’s disease (AD) is the most common cause of dementia. The symptoms of Alzheimer’s worsen over time. Researchers believe the disease process may start 10 years or more before the first symptoms appear. AD most commonly affects people over the age of 65.⁷


**The Alzheimer's Association and Us Against Alzheimer's are independent, third-party organizations that are separate from Lundbeck. Other organizations and resources may also be available. 


***The average life expectancy for individuals diagnosed with Alzheimer’s disease is around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years.⁸

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