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¹ Information provided by Doreen Monks and Krissan Moss, members of the Committee on Research Priorities for Preventing and Treating Alzheimer’s Disease and Related Dementias, and stated here with their permission.

evaluation. This step marked the beginning of her journey on the complicated path of clinical diagnosis and management of cognitive impairment.

Over the next year, Doreen underwent a series of diagnostic tests, including magnetic resonance imaging and neuropsychological assessments. These evaluations revealed mild cognitive impairment, and she was diagnosed with early onset Alzheimer’s disease in 2016. She was told that she would likely not survive beyond 8 or 9 years. Doreen initiated major life changes that had significant personal effects to prepare for this new future. She retired from the career she loved, leaving her with less for retirement than she had anticipated. She sold her home and entered an assisted living facility in preparation for rapidly worsening symptoms. After 11 months, she realized that she was too functional to live in an assisted living facility and eventually moved into a community for adults over 65 years of age. These were not simple logistical changes but deeply emotional ones, affecting her sense of self and autonomy. Desiring to help others facing similar circumstances and to make use of her past experiences as a nurse and educator, Doreen refocused her life around AD/ADRD advocacy and education to reduce the fear and stigma associated with these diseases and raise awareness regarding the importance of early diagnosis. She also sought to help advance research through participation in clinical trials.

In 2024, following preenrollment testing for a clinical trial for a new Alzheimer’s disease drug, Doreen learned that although she had lived with a diagnosis of Alzheimer’s disease for years, she was not qualified to participate in the trial owing to a lack of abnormal amyloid on her positron emission tomography scan—a prerequisite for many Alzheimer’s disease drug trials. Further testing showed that her serum and cerebrospinal fluid (CSF) amyloid levels were also normal, but her serum and CSF levels of phospho-tau were elevated. Eight years after her initial diagnosis, Doreen was told that she does not have Alzheimer’s disease but likely some form of mixed etiology featuring a tauopathy and possible Lewy bodies. As of this writing, she is still waiting on a new diagnosis.

Krissan Lutz Moss received her R.N. degree from Lutheran Hospital School of Nursing in Moline, Illinois, and her B.S.N. from the University of Illinois Chicago. Her career started in hospital oncology and intensive care units before exploring other clinical fields and positions, including leadership roles, clinical sales, and educational positions. The last 2 decades of her career were spent as a clinical education manager and thought leader liaison at Genentech. In each of her roles, patient advocacy was her focus.

In 2014, Krissan began noticing fluctuations in her cognitive abilities, such as difficulty learning new material, remembering words, and following conversations. As these cognitive difficulties progressed, she found herself withdrawing from core aspects of her job. Once able to teach complicated immunology, Krissan struggled to retain and relay scientific information.

She shifted to a new role with fewer demands, thinking that the stress of work travel and recent family illness was the driving factor in the cognitive fluctuations. Other symptoms, however, such as tremor, gait changes, severe constipation, and a loss of smell, became problematic. Krissan developed an inability to find words and noticed a change in personality, including a loss of filter and an uncharacteristic depression. Sleep disturbances and constant fatigue impaired her work performance and decision-making abilities. Eventually, multitasking and simple math were no longer possible.

In 2019, Krissan began to seek answers for her worsening symptoms. The path to her diagnosis included visits to multiple different specialists, ranging from gastroenterologists and speech therapists to sleep specialists and neurologists. In the fall of 2019, she was diagnosed with mild cognitive impairment, possible Lewy body dementia, Parkinsonism, and rapid eye movement (REM) sleep behavior disorder. While having an explanation for her symptoms provided relief, she had to begin the process of managing her disease, which included leaving a career she loved. Following her diagnosis, Krissan sought to help advance the state of the science on neurodegeneration through participation in observational studies such as the North American Prodromal Synucleinopathy study, which examines REM sleep behavior disorder and identifies potential biomarkers, genotypes, and phenotypes to improve diagnosis, early detection, and potential causes of Lewy body disease. She is currently diagnosed with prodromal Lewy body dementia, in addition to Parkinsonism, dystonia, and REM sleep behavior disorder. Krissan chooses to find joy in her moments and to live well with Lewy body disease, while participating in AD/ADRD research and working to change the stigma associated with neurodegenerative diseases. Being involved in advocacy and educational organizations allows Krissan to learn and teach strategies and adaptations to others so they too may live better with cognitive and physical changes.

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