Willetha Barnette, Proxy

Willetha, a caregiver for nearly 25 years, is speaking on behalf of her late mother, Ruth, who was diagnosed with vascular dementia. During her caregiving years Willetha worked full-time as the director of donor services at an independent school. For financial reasons, her then aged but relatively healthy and independent mother moved into Willetha's home. Willetha co-founded a caregiver education organization and serves as an instructor for a family caregiver support and education course at a local community college. Several years after the move, Willetha began to recognize warning signs of cognitive decline when her mom needed help with tasks like managing medications. Then Ruth began asking Willetha to accompany her to department stores and grocers, or she would go alone but be gone for long periods returning home “tired and flustered.” Willetha had been accompanying Ruth to medical appointments, but neither she nor her mother were ever given a diagnosis of dementia by the primary care doctor. Willetha just happened to discover this diagnosis during a routine review of Ruth's electronic medical record. Responding to her elevated care needs, Willetha first hired a provider of home care services. When that proved impractical Ruth was moved to a small personal care home. “After finding my mother on the floor after a fall, I knew that her living in our home was no longer a safe arrangement,” Willetha said. This initial fall, several hospitalizations, and congestive heart failure led to the placement of Willetha’s mom in a skilled nursing facility for the last year of her life. Willetha believes she is competent to speak on behalf of her mother’s experience due to their extremely close relationship. Her long period of living with and supporting Ruth has given her intimate knowledge of how her mom made decisions, what she valued, and what mattered to her even in the late stage of her disease. These insights give her a deep understanding of the caregiving role, an understanding she is eager to share with others confronting the challenge.

Bart Brammer, Person Living with Dementia

Bart Brammer was diagnosed with Alzheimer’s disease in 2020 at age 70. He lives with his partner Darlene outside Nashville in Old Hickory, Tennessee and has three adult daughters. Bart was a car builder and corporate trainer for 30 years after serving in the Army Security Agency during the Vietnam War. Around 2020, Bart became concerned when he was having difficulty keeping up with his work travel schedule. After suffering from a stroke during a work trip, the effects left Bart with temporary gait issues, a stutter and forgetfulness. When the forgetfulness did not abate after recovery, an MRI and PET scan confirmed his diagnosis of Alzheimer’s disease. Bart received his diagnosis from a nurse practitioner, not his doctor. They spent an hour discussing potential medications to address his symptoms and the important steps to think about in the wake of a diagnosis. Still, Bart felt he needed more information. Bart said. “It was a difficult time. I was depressed and in a state of denial.” Bart soon realized, however, that his secret and the stigma of Alzheimer’s was holding him back. Bart quit his job and began volunteering at museums and nature centers. Bart said. “I am focused on emptying my bucket list now while I can still enjoy life.” Bart said, “By being fully engaged, I am taking the future burden off of my family and making sure that my preferences are heard.”

Katie Brandt, Proxy

Katie Brandt is speaking on behalf of her father, Tom, who was diagnosed with Alzheimer's disease at the age of fifty-nine. She is currently the Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit. While Katie’s father was being evaluated for cognitive impairment, Katie was encouraged to bring her husband, Mike, to be evaluated by her father’s doctors for the changes in behavior he was exhibiting. Soon after, Mike, 29, was diagnosed with a behavioral variant form of frontotemporal dementia (FTD). At the same time, Katie’s mother passed away unexpectedly, and seventeen days later, her father was diagnosed with Alzheimer's disease. Katie had to leave her job as a program specialist, place Mike in a skilled nursing facility while she and her son moved in with her father. After seven years, Katie placed her father in a memory care assisted living community where she says he thrived in a structured environment. Katie is interested in participating in the Lived Experience Panel, “because the authentic voice matters. It matters to researchers, funders and policy makers.” She hopes that by sharing her authentic voice she can help push research further towards the highest quality of care, and one day, a cure for Alzheimer's disease and related dementias.

Roberta Cruz, Caregiver

Roberta Cruz is speaking as a caregiver to her mother, Zenaida, who is living in the late stage of Alzheimer’s disease. Roberta is honored to continue to coordinate her mother's ongoing care. Roberta’s mom first started exhibiting noticeable symptoms of cognitive changes in November 2014 during a visit in North Carolina, as she was having trouble recalling important dates and repeating questions in conversation. Even before a formal diagnosis, Roberta was so concerned in March 2015 that she asked Zenaida to move from California to live with her family in North Carolina. As Zenaida’s health has declined, Roberta has navigated in-home care as well as residential care. She has charted a path that both embraces and challenges traditional Filipino expectations of daughter caregivers. She feels this perspective is needed more than ever as a generation of Lolos/Lolas (respected Filipino elders) who immigrated to the United States for a better life are now facing Alzheimer’s.s residential care. She has charted a path that both embraces and challenges traditional Filipino expectations of daughter caregivers. She feels this perspective is needed more than ever as a generation of Lolos/Lolas (respected Filipino elders) who immigrated to the United States for a better life are now facing Alzheimer’s.

Monica Downer, Person Living with Dementia

Monica Downer was first diagnosed with MCI in her mid-forties, around the year 2017. Monica has two sons and lives in Louisville, Kentucky with her husband. Monica worked as a special education teacher for nearly 20 years for children with mild disabilities. Nearly a decade ago, Monica recalls noticing changes in her work abilities including losing her place while reading aloud, having an unusually limited attention span, and changes in her speech patterns. Around this same time Monica’s mother was diagnosed with Frontotemporal Dementia. Monica was eventually referred to a memory center and was diagnosed with MCI for her own concerns. She took this diagnosis back to her reluctant neurologist who reassured her that it was “no big deal.” In 2020 Monica received a PET scan which changed her diagnosis to FTD, the same as her mother. She could no longer be her mother’s caregiver. After receiving her own diagnosis Monica tapped into resources she was familiar with due to her mother’s diagnosis, to find support for herself. She found the Dementia Alliance International and Black Dementia Minds.

Darrell Foss, Person Living with Dementia

Darrell has been diagnosed with mild cognitive impairment (MCI). Following military service in Vietnam, Darrell worked as a certified public accountant (CPA) and as an adjunct college professor, before retiring. Darrell first noticed problems with fixing items around the house and reported this to his physician. He continued experiencing mild symptoms and his physician helped him enroll in the IDEAS study where he received an Amyloid PET scan. Results of the PET scan indicated that Darrell’s presentation was inconsistent with Alzheimer’s disease and his diagnosis was confirmed as MCI. Upon verification of his diagnosis, three words flooded Darrell’s mind: “devastation, helplessness, hopelessness.” Darrell credits a nurse practitioner who provided much needed information and support in the wake of his diagnosis. Darrell states he has always been interested in research studies and through the Lived Experience Panel he hopes he can continue to give back with his experience living with MCI. “We need to make sure families living with Alzheimer’s and other dementias get the information and help they need. Otherwise, you can feel like you’re on your own.”

Freddye G. James, Proxy

Freddye G. James is speaking on behalf of her 92 year old mother who passed away at age 92 from complications due to vascular dementia. Freddye was an analytical chemist, has a doctorate in Ministry, and describes herself as a lifelong learner and advocate. Freddye’s mother began experiencing memory problems around 2011. Freddye took her mother to Emory Geriatrics for neuropsych testing, as her doctors suggested. Doctors informed Freddye that her mother had early vascular dementia. After Freddye’s mother had a serious fall about 5 years ago, doctors could see that she was progressing. During the summer of 2020, Freddy’s mother experienced frequent falls and required assistance with all activities of daily living (ADL’s). Freddye became isolated and unsure what to do as her mother’s caregiving needs increased. Freddye turned to an informal support group at her church, cared for her mother at home with family support, and eventually decided to bring someone into the home to assist her in caring for her mother a few hours a week. Unfortunately, after a hospitalization in December 2020, Freddye reluctantly placed her mother in an inpatient Hospice residence, where she passed away. Freddye says having lived with her mother most of her life she feels confident she can represent her and her lived experience with dementia for this panel. Freddye says she was privileged to have had the opportunity to care for her mother who lovingly raised and cared for her.

Judith S. Rocha, Caregiver

Judith Susan Rocha cared for her late mother who lived with Alzheimer’s disease. Judith is an assistant professor and director of field education for the Master of Social Work program at Northeastern Illinois University in Chicago, IL. She serves on the Advisory Council for the University of Chicago which focuses on the needs of caregivers from diverse communities. She also has participated on panel discussions for AARP’s Illinois conference targeted to the Latinx/a/o community. After observing signs of unusual behavior from her mother, she accompanied her to her doctor's appointment. After a diagnostic process, Judith and her mother left the appointment with unanswered questions even to include, “what is Alzheimer’s disease? Though the disease was in the early stage, it created stress for both Judith and her mother; eventually, Judith’s mother moved in with her after living with Judith’s sister for almost ten years. Judith relied on the help of adult day centers to keep her mother active for the 16 years since the diagnosis. Judith is interested in the Lived Experience Panel because she believes there needs to be more visibility and understanding of the Latinx/a/o community in research. She says there is not a lot of representation from her community unless the topic is about diversity. She is committed to engage in and advocate for more work that is inclusive of the Latinx/a/o community and she encourages others to do the same.

Anthony (Tony) Wagner, Caregiver

Anthony (Tony) Wagner, cared for his wife Marie, who is in her mid-70s and diagnosed with Alzheimer’s Disease. Tony and Marie met in sixth grade and dated since high school. Tony, who is a Vietnam war veteran, is also a retired social worker who for over 40 years held the role of President and CEO of Pillsbury United Communities. Tony and his daughters started seeing signs of changes in Marie’s cognition and memory around 2015. She began repeating stories, asking Tony continuously “What do we do now? What happens next?” He states that it escalated until he couldn’t be apart from her. “We were living a dream life, retired at our lake house in MN but suddenly I couldn’t go anywhere. I couldn’t go get the mail without her following.” Tony states that Marie never seemed to notice the changes in her own behavior, and he could not convince her to see a doctor about it. Finally, in 2019 he called her PCP in advance of her annual physical, asking her to please help. The doctor did a memory test in the office and then referred them to a neuropsychiatrist who performed full cognitive testing and an MRI. The result was a diagnosis of Alzheimer’s, in 2020. One week after Marie was diagnosed Tony suffered a stroke. Six months later he was diagnosed with Polymyalgia rheumatica (PMR), a condition that involves widespread aching and stiffness. The couple moved to the Twin Cities and into senior housing. Tony tried caring for Marie on his own but because of his physical condition and her needs, it just got to be too much. Tony now lives in his own apartment while Marie lives in the memory care area, and he visits her daily. “Moving her was the worst time in my life - and I’m a Vietnam war veteran,” he said. Tony is committed to helping the future of dementia care, caregiving, and research in any way that he can because he was shocked at how hard the entire process was for him, someone with a social work and management background. Tony is now looking for ways to give back and would like to use his caregiving experience as a positive influence for the future, via the Lived Experience Panel.